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Colorectal Cancer Screening Behaviours of South Asian
Immigrants in Canada: An Exploratory Mixed Methods Study
by
Joanne Crawford
A thesis submitted in conformity with the requirements
for the degree of Doctor of Philosophy in Nursing Science
Lawrence S. Bloomberg Faculty of Nursing
University of Toronto
© Copyright by Joanne Crawford, 2016
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Abstract
Colorectal Cancer Screening Behaviours of South Asian Immigrants in Canada: An
Exploratory Mixed Methods Study
Joanne Crawford
Doctor of Philosophy in Nursing Science
Lawrence S. Bloomberg Faculty of Nursing, University of Toronto
2016
An exploratory sequential mixed method study was conducted to explore factors that
influence colorectal cancer (CRC) screening uptake and to develop an empirically-based
cross culturally adapted survey to better understand uptake in average risk South Asian (SA)
immigrants. Phase I was a scoping study that reviewed relevant cancer screening literature.
Phase II was a focus group study with SA immigrants to explore beliefs, attitudes, and
reasons for CRC screening decision-making. Phase III involved survey development by
incorporating Phase I and II findings, critically appraising candidate measures, cross
culturally translating and adapting into Urdu, and pre-testing using cognitive interviews.
Narrative and thematic analysis of scoping study literature uncovered four themes: (1)
beliefs and attitudes including centrality of family, holistic health care, fatalism, screening as
unnecessary, and emotion-laden perceptions; (2) lack of knowledge; (3) barriers to access;
and (4) gender differences. Focus group thematic analysis revealed three themes: (1) beliefs
and attitudes such as benefits of screening; (2) knowledge and awareness of CRC and
screening, experiential learning, and recommendations; and (3) support and accessibility,
particularly linked to physicians. In survey development, candidate measures with good
conceptual matches were identifed in the literature. Modifications were made to the Urdu
survey. After pre-testing, revisions addressed general design, culture, and gender issues.
This study enhanced understanding of factors that influenced cancer screening and
provided insights on socio-cultural context, beliefs, attitudes, barriers, and strategies to
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promote CRC screening among SA immigrants in Canada. Collectively, the findings
informed survey development. Future research will pilot-test the surveys and conduct
reliability and validity testing. These findings can inform public health and cancer control
efforts to develop relevant strategies to improve CRC screening among SA immigrants.
The English and Urdu language survey will be used to advance understanding of factors
that influence CRC screening among SA immigrants in Ontario, Canada.
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Acknowledgements
First, I would like to acknowledge my beloved parents, Pietro and Albina Passaretti
(deceased) who immigrated to Canada to give my brothers and I greater opportunities in life.
To my parents and three brothers, Vince, Fausto (deceased) and Renzo, I am grateful for all
of the love and support you have given me over the years in pursuing my passion, nursing. To
my husband and best friend, Keith, thank you for encouraging me to take my first university
course at McMaster University and opening up new dimensions of learning, and possibilities
for me. Our mutual regard for lifelong learning has been important because it enabled me to
keep taking courses, while you alleviated some of my responsibilities by taking care of our
children, so that I could achieve my goals. Keith, you have always been my strength,
supporting me unconditionally during the trials and triumphs along this journey. To my five
loving children, Chiarina, Brady, Liam, Aidan and Sofia, you are my heart and the best
cheerleaders of all; you have always believed in me, and showed me patience and
understanding when I could not commit to an activity because I had to do work. To Ron and
Agnes Crawford, my surrogate parents, thank you for always showing interest, enthusiasm
and encouragement for my work and educational endeavours - I always enjoy the rich
discussions we have on solving current social and health care issues in Canada.
To my thesis supervisor, Dr. Arlene Bierman, you have epitomized true mentorship
over the years and accompanied me on this journey in a genuine and supportive manner. I
have appreciated the rich discussions we have had and the concern for me both professionally
and personally. Your expertise and guidance in my research training have taught me so much
that words are not enough to convey this – it has been a truly remarkable journey of learning
and growth. To Dr. Farah Ahmad and Dr. Dorcas Beaton, the expertise and knowledge you
have shared with me has allowed me to learn so much in different paradigms of research. I
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have valued your constancy in providing thought provoking questions and feedback, and
pushing me always to think critically and find my way through the forest.
Last, and not least, I would like to thank the participants in my studies who were
always gracious and invited me into their communities, sharing with me their experiences and
stories (and sometimes food and games). Your enthusiasm and engagement was valued, and
the time I spent with you was such a pleasure and made me feel that we were striving for a
mutual goal of improving access to screening in the communities of Hamilton, Ontario.
Thank you for believing in me and encouraging me to look at other social issues affecting
your communities - I look forward to continuing to work with you! I would like to also
acknowledge colleagues from the Chronic Disease Prevention Program at Hamilton Public
Health Services, Angela, Trish, Roodaba, and Faye, who have been and continue to be
wonderful collaborative partners for well over ten years. We have and continue to work on
numerous projects to promote outreach and screening to diverse communities in Hamilton,
and I thank you for your continued encouragement and collaboration. Finally, I would like to
thank the research assistants who worked with me on both studies. Your commitment and
eagerness to learn and work in the community plus your important contributions to my
research were greatly valued - I learned about your experiences, as well as gained more
knowledge of the diversity and social issues within our communities.
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Colorectal Cancer Screening Behaviours of South Asian Immigrants in
Canada: An Exploratory Mixed Methods Study
Table of Contents
Chapter One Introduction of Thesis by Manuscript ............................................................ 1
1.1 Background ....................................................................................................................... 3
1.1.1 Colorectal cancer incidence ................................................................................. 3
1.1.2 Colorectal cancer screening ................................................................................. 4
1.1.3 South Asian immigrants ..................................................................................... 11
1.1.4 South Asian immigrants and health status ......................................................... 13
1.1.5 Colorectal cancer incidence in South Asian immigrants ................................... 14
1.1.6 Colorectal cancer screening among South Asian immigrants ........................... 15
1.2 Problem Statement.......................................................................................................... 18
1.3 Theoretical Foundations ................................................................................................. 19
1.3.1 Critical Social Theory ........................................................................................ 20
1.3.2 Migration and Culture ........................................................................................ 24
1.3.3 Acculturation Model .......................................................................................... 26
1.3.4 Health Behaviour Theories ................................................................................ 28
1.3.5 Behavioural Reasoning Theory.......................................................................... 30
Figure 1: Behavioural Reasoning Theory ................................................................... 32
1.4 Overall Aim of Study ...................................................................................................... 34
1.5 Exploratory Sequential Mixed Method Design ............................................................ 34
1.6 Three Phases of Study .................................................................................................... 36
Figure 2: Exploratory sequential mixed method design flowchart .............................. 37
1.6.1 Phase One: Scoping Study ................................................................................. 37
1.6.2 Phase Two: Focus Group Study ......................................................................... 39
1.6.3 Phase Three: Questionnaire Development Study .............................................. 40
1.7 Implications for Practice, Policy, and Research ........................................................... 42
1.8 Strengths and Limitations of Exploratory Sequential Mixed Method Study ........... 43
References ........................................................................................................................... 45-63
Chapter Two Cancer screening behaviours among South Asian immigrants in the UK,
US, and Canada: A scoping study ....................................................................................... 64
2.1 Abstract ............................................................................................................................ 64
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2.2 Introduction ..................................................................................................................... 65
2.3 Methods ............................................................................................................................ 67
Figure 1. Scoping study flow diagram ......................................................................... 72
2.4 Findings ............................................................................................................................ 73
Table 1 Scoping study: Numerical summary of research studies ................................ 74
2.4.1 Thematic analysis............................................................................................... 74
2.4.2 Theme 1: Beliefs and attitudes ........................................................................... 75
2.4.3 Theme 2: Lack of knowledge ............................................................................ 79
2.4.4 Theme 3: Barriers to access ............................................................................... 80
2.4.5 Theme 4: Gender differences ............................................................................. 82
2.5 Discussion......................................................................................................................... 84
2.6 Conclusions ...................................................................................................................... 89
References ......................................................................................................................... 91-104
Appendix 1A Beliefs and Attitudes toward Cancer Screening ...................................... 105-107
Appendix 1B Barriers/Predictors to Cancer Screening/Health Promotion/Services Utilization .
......................................................................................................................................... 108-110
Appendix 1C Cancer Screening Knowledge and Uptake ............................................... 111-117
Appendix 2 Thematic Analysis from studies and reports regarding cancer screening among
SA immigrants ............................................................................................................... 118-119
Chapter Three Colorectal cancer screening behaviours among South Asian immigrants
in Canada: A qualitative study ........................................................................................... 120
3.1 Abstract .......................................................................................................................... 120
3.2 Introduction ................................................................................................................... 121
3.3 Methods .......................................................................................................................... 123
3.3.1 Setting and participants .................................................................................... 124
3.3.2 Procedures ........................................................................................................ 125
3.3.3 Data collection and rigor .................................................................................. 126
3.3.4 Data analysis .................................................................................................... 127
3.4 Findings .......................................................................................................................... 127
Table 1 Focus group characteristics ........................................................................... 128
Table 2 Participant characteristics ............................................................................. 129
Figure 1. Dominant themes, subthemes, and categories ............................................ 131
3.4.1 Theme 1: Beliefs and attitudes .......................................................................... 132
3.4.2 Theme 2: Knowledge and awareness ................................................................ 134
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3.4.3 Theme 3: Support and accessibility .................................................................. 138
3.5 Implications for Practice and Research ....................................................................... 141
3.6 Conclusion ..................................................................................................................... 147
References ....................................................................................................................... 149-155
Appendix A Focus Group Interview Guide ........................................................................... 156
Chapter Four Phase 3 Survey Development Study (Part 1) ............................................ 157
4.1 Background ................................................................................................................... 158
4.2 Methods .......................................................................................................................... 159
Figure 1. Flow diagram of methods ........................................................................... 161
4.2.1 Concepts to be included in the screening survey ............................................. 162
4.2.2 Conceptual model ............................................................................................ 163
Figure 2. Conceptual model ....................................................................................... 164
4.2.3 Literature search for candidate measures ......................................................... 169
Figure 3. Literature search terms for Ovid Medline .................................................. 170
4.2.4 Consultation with experts ................................................................................ 175
4.3 Colon Cancer Screening Survey ................................................................................... 176
4.4 Discussion........................................................................................................................ 180
4.5 Conclusion ...................................................................................................................... 181
References ....................................................................................................................... 182-188
Table 1 Key concepts, conceptual definitions, and candidate measures ............................... 189
Table 2 EMPRO Critical appraisal tool ................................................................................. 190
Table 3 EMPRO Scores as a result of critical appraisal ................................................. 191-192
Table 4 Candidate measures ........................................................................................... 193-195
Table 5 Expert advisory group and expert committee review outcomes ............................... 196
Appendix A: Glossary of terms ............................................................................................. 197
Appendix B: Colon Cancer Screening Survey................................................................ 198-207
Chapter Five Phase 3 Survey Development Study (Part 2) ............................................. 208
5.1 Background .................................................................................................................... 208
5.2 Survey Development ...................................................................................................... 209
5.3 Cross-cultural Translation and Adaptation ................................................................ 211
5.3.1 Methods............................................................................................................. 211
5.3.2 Cross-cultural and adaptation findings ............................................................ 213
5.4 Cognitive Interviewing .................................................................................................. 214
5.5 Methods ........................................................................................................................... 215
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5.5.1 Cognitive interview framework ........................................................................ 216
5.5.2 Cognitive interviewing techniques ................................................................... 217
5.5.3 Cross-cultural cognitive interviews .................................................................. 218
5.5.4 Cognitive interview methods used in this study ............................................... 219
5.5.5 Design .............................................................................................................. 220
Figure 1. Cognitive Interview Process ....................................................................... 222
5.5.6 Participant selection ......................................................................................... 222
5.5.7 Cognitive interviewers and training ................................................................. 223
5.5.8 Data analysis .................................................................................................... 225
5.6 Cognitive Interview Findings ........................................................................................ 227
Table 1 Demographics of cognitive interview participants ....................................... 228
5.6.1 General design issues ........................................................................................ 229
Table 2 General design issues and revisions .............................................................. 231
5.6.2 Culture issues .................................................................................................... 231
Table 3 Culture issues and revisions .......................................................................... 232
5.6.3 Gender issue ...................................................................................................... 233
Table 4 Gender issue and revision ............................................................................. 233
5.6.4 Translation issue ............................................................................................... 233
Table 5 Translation issue and revision....................................................................... 235
5.6.5 Additional findings ........................................................................................... 235
5.6.6 Summary of findings......................................................................................... 236
5.7 Discussion........................................................................................................................ 236
5.7.1 Strengths ........................................................................................................... 239
5.7.2 Limitations …………………………………. .................................................. 241
5.8 Conclusion ...................................................................................................................... 242
References ....................................................................................................................... 244-249
Appendix A: Results of forward translation into Urdu language by two translators ...... 250-255
Appendix B: Synthesis report for T1 and T2 and resolution of discrepancies ..................... 256
Appendix C: Expert Committee report of discrepancies and their resolution ................ 257-258
Appendix D: Colon Cancer Screening Survey Cognitive Interview Protocol ................ 259-271
Chapter Six Summary of Exploratory Sequential Mixed Method Study ....................... 272
6.1 Summary of Main Findings ......................................................................................... 273
Figure 1. Exploratory sequential mixed methods study............................................. 273
6.1.1 Phase one, scoping study ................................................................................. 273
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6.1.2 Phase two, focus group study............................................................................ 275
6.1.3 Phase three, survey development study ............................................................ 277
6.2 Discussion of Findings .................................................................................................. 279
6.2.1 Low screening among SA immigrants .............................................................. 280
6.2.2 Access in the context of screening .................................................................... 283
6.2.3 Health behavioural concepts in survey development........................................ 292
6.3 Main Conclusions .......................................................................................................... 294
6.4 Dissemination of Study Findings ................................................................................. 297
6.5 Strengths and Limitations of Exploratory Sequential Mixed Method Study ......... 298
6.6 Implications for Practice, Policy and Research ......................................................... 301
6.7 Future Research Directions ......................................................................................... 303
References ...................................................................................................................... 306-316
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Chapter One
Introduction of Thesis by Manuscript
Organized population-based cancer screening programs offered in socially funded
universal health care systems are implemented based on the assumption that they will reach
all eligible individuals. This includes people covered in our health care system who are
immigrants, perhaps with different cultural beliefs and norms. Programs attempt to promote
access through translated instructions for screening procedures (Ministry of Health and Long
Term Care [MOHLTC], 2015), but often miss important factors related to uptake of cancer
screening among diverse immigrant populations.
The purpose of this thesis is to explore factors that influence colorectal cancer
screening uptake among South Asian immigrants, and to develop an empirically-based cross
culturally adapted survey for South Asian immigrants residing in Ontario, Canada. The
purpose of the survey is to describe beliefs, attitudes, facilitators, and barriers that influence
colorectal cancer screening intention and uptake. Additionally, the survey may be used in
future to predict what factors influence CRC screening intention and uptake, and may inform
interventions for South Asian immigrants residing in Ontario, Canada.
South Asian is used to broadly define a diverse population whose main origins are
from the Indian sub-continent including India, Pakistan, Bangladesh, Sri Lanka, with lesser
numbers immigrating from the South Asian diaspora, for example countries such as South or
East Africa and the Caribbean (Ahmad, 2012; Tran, Kaddatz, & Allard, 2005). The thesis
addresses this topic in six chapters. Chapter one begins with the background and importance
of the problem, colorectal cancer screening among South Asian immigrants, and discusses
theoretical foundations and the exploratory sequential mixed method study. In chapter two,
the scoping study reports on the findings of a comprehensive search of available and relevant
literature on cancer screening among South Asian immigrants. This review formed the
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essential basis to inform the next phase of research. Chapter three reports on the focus group
study findings that elaborated on socio-cultural context, beliefs, attitudes and reasons for
decision-making regarding colorectal cancer screening among South Asian immigrants in
Hamilton, Ontario.
Chapter four and five includes the final phase of the mixed method study, the survey
development study. Chapter four focuses on initial steps involved in developing the survey
including the identification of key concepts of interest and concept definitions, a literature
search of articles reporting on pre-existing candidate measures, the selection and critical
appraisal of measures that aligned with defined concepts, and consultations with experts.
Chapter five reports on cross cultural translation and adaptation of the survey into the Urdu
language, and pre-testing of the survey using cognitive interviews. Chapter six provides a
summary of findings and contributions from all three phases of the exploratory sequential
mixed method study. Additionally, chapter six includes: a discussion of findings within the
broader context of current knowledge on colorectal cancer screening among South Asian
immigrants; strategies to improve access; health behavioural concepts in survey development;
the main conclusions; the strengths and limitations of the exploratory sequential mixed
method study; and, future research directions.
In Chapter one, colorectal cancer incidence and screening uptake is examined. The
diversity of South Asians migrating to western countries, and their change in health status
with length of settlement is discussed to make explicit the heterogeneity of these populations.
The literature on colorectal cancer incidence and screening uptake among South Asian
immigrants is presented followed by the problem statement. Theoretical foundations that
informed this research include Critical Social Theory, an Acculturation Model, and the
Behavioral Reasoning Theory; all of which are explained in separate discussions. The overall
aim of the exploratory sequential mixed method study is provided, as well as, the rationale
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for selecting this design. Finally, the individual study purpose, question, rationale, and
methods in the three phases are outlined in separate discussions.
1.1 Background
1.1.1 Colorectal Cancer Incidence
The incidence of colorectal cancer among South Asians settled in western countries is
more prevalent than among South Asian populations residing in India (Hislop, Bajdick,
Saroa, Yeole, & Barroetavena, 2007). Therefore, to understand the pattern of incidence
among the population affected, it is necessary to address the state of colorectal cancer
incidence in Canada.
In Canada, colorectal cancer (CRC) is the third most common cancer diagnosed, and
accounts for the second and third highest cancer deaths among men and women, respectively
(Canadian Cancer Society [CCS], 2011). The number of CRC cases reported in 2010 was
21,285 based on the latest available data (Canadian Cancer Society [CCS], 2015).
Specifically, in Ontario, there were 7,600 new cases representing almost 30% of the overall
cases in Canada (CCS, 2015). The reported age-standardized CRC incidence rates for Ontario
in 2010 were 52 per 100,000 for males, and 38 per 100,000 for females, respectively (CCS,
2015). In Ontario, 3,050 people died of CRC in 2006 (CCS, 2015).
Colorectal cancer incidence has increased over time, and this is in part due to the
aging population. Approximately 95% of CRC cases and deaths are in the population aged 50
years of age and older (CCS, 2011). Males have higher incidence and mortality rates than
females, more so in the 55-74 year age range representing 60% higher incidence and
mortality rates compared to females (CCS, 2011). Differences in risk factors and biology are
assumed to be variables that account for the higher rates in males versus females.
Approximately 75% of CRC cases occur sporadically in the average risk population; while,
the remaining 25% are associated with high risk factors such as, a history of adenomatous
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polyps, hereditary or genetic syndromes, and inflammatory bowel disease (Winawer et al.,
1997). Genetics and mutations have been attributed to adenomatous polyp development with
further progression to cancer. Socio-environmental factors such as dietary intake of fat, low
fibre intake, obesity, and physical inactivity have also been linked to the increased risk for the
development of CRC (Winawer et al., 1997; World Cancer Research Fund, 2011, p. 6).
The most common histology for CRC is adenocarcinomas arising from pre-cursor
polyps (Winawer et al., 1997). Adenomatous polyps are the most prevalent pre-malignant
lesions representing over 66% of all polyps, while hyperplastic benign lesions represent
roughly 10% to 30% of the remaining lesions found in the bowel (Winawer et al., 1997). The
rate of progression of an adenomatous polyp of less than one centimeter to cancer is low, and
it may take up to 10 years for a polyp to transform into invasive cancer (Winawer et al.
1997). Screening detects adenomatous polyps and prevents cancer from developing if lesions
are removed, or detects early stage CRC that has a 90% cure rate based on 5-year relative
survival (Cancer Care Ontario [CCO], 2009).
1.1.2 Colorectal Cancer Screening
Evidence based guidelines recommend CRC screening for all the average risk
population (Canadian Task Force on Preventive Health Care [CTFHC], 2001). Average risk
populations are those individuals who are 50 years of age and older, have no personal or
family history of CRC cancer, no inflammatory bowel diseases, and are asymptomatic
(Winawer et al., 1997). There are a number of screening modalities for CRC. Strong evidence
from randomized control trials support the recommendation to implement CRC screening as
part of the regular health exam using the fecal occult blood test (FOBT) annually or
biennially in Canada (CTFPHC, 2001). This aligns with the Canadian recommendations from
the National Committee on Colorectal Cancer Screening (2002) stating that a FOBT should
be performed biennially with colonoscopy follow-up for positive test results. The U.S.
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Preventive Services Task Force (2008) guidelines recommend screening intervals of: annual
screening with high-sensitivity FOBT; flexible sigmoidoscopy every five years accompanied
by high-sensitivity FOBT every three years; and, colonoscopy every 10 years. While both
Canadian and the United States of America (USA) guideline recommendations are dated, a
new protocol has been submitted to update the CRC screening guidelines in Canada
(Dunfield, Shane, Fitzpatrick-Lewis, & Bacchus, 2013), and draft recommendations from the
U.S Preventive Task Force (2015) are now available. The U.S. draft recommendations
include screening the average risk population from 50-75 years of age using the following
modalities: (1) annual high-sensitivity FOBT or annual fecal immunochemical test (FIT); (2)
flexible sigmoidoscopy every 10 years accompanied by annual FIT; and (3) colonoscopy
every 10 years (U.S. Preventive Task Force, 2015). The promotion of CRC screening
recommendations, and outreach to eligible populations are best managed within the context
of an organized program that undergoes continuous evaluation (Miles, Cockburn, Smith, &
Wardle, 2004; National Committee on Colorectal Cancer Screening, 2002).
Screening for CRC may be accessed through primary care or organized population-
based screening programs across Canada. Obtaining screening through a family physician
during a routine exam is considered opportunistic screening (Miles et al, 2004). Organized
population-based screening facilitates high-quality, wide-spread promotion, and outreach of
CRC screening to all average risk populations (Miles et al., 2004; National Committee on
Colorectal Cancer Screening, 2002). In Ontario, organized population-based CRC screening
using FOBT has been implemented with family physician engagement (MOHLTC, 2015).
Population-based screening for CRC that utilizes the FOBT, a guaiac-based
Hemoocult test has the potential to reduce the relative risk of mortality in the average risk
population in the range of 15% (RR 0.85, 95% CI 0.78-0.92) if the test is performed
biennially, or 33% (RR 0.67, 95% CI 0.51-0.83) if the test is performed annually when
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compared to no screening (Hewitson, Glasziou, Watson, Towler, & Irwig, 2008). The FOBT
detects microscopic blood present in the stool resulting when polyps or early cancers bleed
intermittently (Winawer et al., 1997). Evaluation of test performance of the FOBT includes
assessment of sensitivity and specificity.
FOBT. In a Cochrane systematic review, the non-rehydrated slides of the Hemoccult
test had 55% to 57% sensitivity, while the rehydrated Hemoccult test had 82% to 92%
sensitivity (Hewitson et al., 2008). A higher positive predictive value was seen in non-
rehydrated Hemoccult slides, 5% to 18.7%; while a lower positive predictive value was seen
in rehydrated Hemoccult slides, 0.9% to 6.1% (Hewitson et al., 2008). The National
Committee on Colorectal Cancer Screening (2002) recommended the use of non-rehydrated
Hemoccult or a comparable product as the entry test for population-based screening in
Canada. After a review of published studies on non-rehydrated FOBT, a panel of experts
from Cancer Care Ontario recommended that the FOBT product chosen for the Ontario
population-based screening program should demonstrate ≥40% sensitivity and ≥95%
specificity (Rabeneck, Zwaal, Goodman, Mai, & Zamkanei, 2008). While rehydrating
samples increases sensitivity, it also reduces specificity resulting in greater false positives;
therefore, the threshold for sensitivity is lower than that of specificity. When compared with
no CRC screening, the use of low-sensitivity guaiac FOBT annually was a cost effective tool
in reducing CRC incidence by 44% (n= 2748), and mortality by 55% (n= 2113) in one
Canadian study (Telford, Levy, Sambrook, Zou, & Enns, 2010).
FIT. An alternative to FOBT that may be used in population-based screening is the
FIT (Allison, Fraser, Holloran, & Young, 2014). While FOBT and FIT share the same
principle of detection of blood using the biomarker, haemoglobin, the analytical techniques
vary. In FOBT, analysis involves the addition of hydrogen peroxide to stool samples to detect
“heme”, a constituent in blood and if oxidization of the guaiac occurs (perioxidase activity)
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then a blue colour dye is noted (Allison et al., 2014). In Ontario, preparatory instructions for
the collection of a stool sample for FOBT recommend abstaining from using vitamin C or
citrus products three days prior to and during collection as it interferes with the chemistry of
the test and may reduce the percentage of false-negative results (Rabeneck et al., 2008).
In contrast, FIT involves immunoassay, a process where an antibody is used for the
identification of “globin”, another constituent of blood (Allison et al., 2014). During analysis,
the amount of antibody attached to haemoglobin is measured. The analysis technique used in
FIT has greater sensitivity to the presence of lower haemoglobin levels, and lower chances of
interference due to dietary or medicinal factors that may be present in feces (Allison et al.,
2014). A meta-analysis examined the FIT in detection of CRC and pooled sensitivity and
specificity results were 79% (CI, 0.69-CI, 0.86), and 94% (CI, 0.92-CI, 0.95) respectively
with total accuracy at 95% (CI, 93%-CI, 97%) (Lee, Liles, Bent, Levin, & Corley, 2014). The
positive likelihood ratio was 13.10 (CI, 10.49-CI, 16.35), and negative likelihood ratio was
0.23 (CI, 0.15-CI, 0.33) (Lee et al., 2014), providing good evidence of diagnostic evaluation
of the presence or absence of disease (Guyatt, Rennie, Meade, & Cook, 2008, p. 428). The
FIT is more selective in detecting bleeding that occurs in the colorectal region; while FOBT
may detect bleeding anywhere in the gastrointestinal system (Allison et al., 2014).
The simplicity of FIT for use in population-based CRC screening makes it an
attractive choice as there are no dietary restrictions, and the eligible participant need only
collect one stool sample biennially (Allison et al., 2014). Randomized controlled studies have
compared FIT with FOBT, and reported higher participation with FIT than with FOBT (Hol
et al., 2009; Hoffman et al., 2010; van Rossum et al., 2008). Cancer Care Ontario‟s FIT
Guidelines Expert Panel on evidentiary findings reported a number of benefits to
implementing FIT within a population-based screening program (Rabeneck et al., 2012). For
instance, FIT had greater sensitivity for detection of CRC and adenomatous polyps, allowed
8
for the system of analysis to be automated in the lab, and facilitated the selection of a cut-off
point for haemoglobin concentration levels for positive test results (Rabeneck et al., 2012). In
Canada, three provinces (Nova Scotia, Saskatchewan, and British Columbia) have
implemented FIT into their organized CRC screening programs (Rabeneck et al., 2012).
Cancer Care Ontario‟s FIT Guidelines Expert Panel recommend that the Ontario
ColonCancerCheck program embark on a pilot study prior to switching from FOBT to FIT
through the evaluation of several FIT kits to determine the best option, as well as assess
current programmatic changes. Essentially, the FIT kits would be examined in both the lab
and the field.
Screening adherence. Historically, in Canada, biennial FOBT adherence for average
risk 50 to 74 year olds has been low at 15.1% with 30.1% overall CRC screening guideline
adherence with either FOBT or endoscopy including flexible sigmoidoscopy or colonoscopy
over a 10 year period (Sewitch, Fournier, Ciampi, & Dyachenko, 2008). However, since the
implementation of the population-based CRC screening programs between 2007 and 2011,
uptake has increased (Singh, Bernstein, Samadder, & Ahmed, 2015). Overall, up-to-date
self-report CRC screening in Canada was 55.2% in 2012 using either one or several screening
tests (Singh et al., 2015). However, the overall percentage of FOBT uptake was 30.1% across
provinces and a bit higher (36.9%) for provinces who had established population-based CRC
screening programs. Factors associated with greater odds of CRC screening included higher
education, higher income, and non-smoking status (Singh et al., 2015).
The CRC screening program in Ontario, ColonCancerCheck, has had modest success
in efforts to increase FOBT screening uptake (Honein-AbouHaidar et al., 2013; Ministry of
Health and Long Term Care [MOHLTC], 2014). Screening rates ranged from 28% (2009/10)
to 30% (2011/12) in the average risk population 50–74 years of age (Cancer Quality Council
of Ontario [CQCO], 2015). While this demonstrates some progress, there is a continued need
9
to increase rates of CRC screening among all average risk populations (MOHLTC, 2014).
This is particularly important for diverse sub-groups of the population who have lower CRC
screening uptake rates (Javanparast et al., 2010; Singh et al., 2015).
Ethnic minorities including South Asian populations experience health inequities in
accessing health services and report lower cancer screening rates (Quan et al., 2006). Primary
care physicians continue to play a vital role in access to FOBT or FIT screening depending on
the test chosen within each province across Canada (Rabeneck et al., 2012). Yet, South Asian
individuals report lower satisfaction with their physicians in terms of routine health exams
compared to native-born Canadians (Bierman et al., 2009/2010), which may limit access to
routine screening. Involvement of the family physician has been an integral component of the
ColonCancerCheck program introduced in Ontario, Canada. The program began by mailing
invitation letters to select age groups at the initial implementation phase, and more recently
has expanded to mail out invitation letters to all age-eligible average risk people 50-74 years
of age (CQCO, 2015). Modification of invitation letters, the introduction of reminder letters
for non-compliant participants, and the endorsement of eligible participants‟ primary care
physicians are anticipated improvements to be incorporated within the ColonCancer Check
program in the coming year.
Different screening procedures. The screening procedures used to detect CRC are
unlike others used for population-based screening, such as those used for detecting breast or
cervical cancer. Colorectal cancer screening can be accomplished with more than one test, the
FOBT or FIT, flexible sigmoidoscopy, or colonoscopy, which is more complex due to
different testing intervals and different guidelines (Vernon, Briss, Tiro, Warnecke, 2004).
Population-based screening in Canada uses FOBT or FIT (Rabeneck et al., 2012). Nurse led
flexible sigmoidoscopy screening is also provided at seven regional cancer centers across
Ontario (CCO, 2015). Follow-up for positive FOBT, FIT, or flexible sigmoidoscopy (FS)
10
requires referral to a specialized physician for a more invasive but diagnostically accurate
colonoscopy. A home FOBT or FIT places greater onus on the individual to follow through
with completing the test, which can create unique challenges, such as recognizing the stool
kit test when it is received in the mail or from a physician, and understanding the rationale
and importance of completing the test (MOHLTC, 2015). The individual will also need to be
able to follow instructions for stool collection, what to do after collection of the stool (FOBT
or FIT), whether they need to document personal information on the kit, and return the
sample to the appropriate place.
The complexities of screening as a behaviour should also be noted given the
uniqueness of the practice. There are gaps or intervals in time between repeat screenings, and
with this time, the decision to have a repeat FOBT or FIT is open to numerous influencing
factors (Rakowski & Breslau, 2004). Given that screening is not a part of daily health
practices such as dietary intake or physical activity, it is a challenge to know what importance
screening has for individuals of average risk to adhere to biennial CRC screening. Decisions
about screening are further influenced by its relevance or importance, the interval time
between screening, and the specific reasons for or against screening (Rakowski & Breslau,
2004). Although, the FOBT or FIT can be completed at home, the family physician, health
care team, and other medical procedures in follow-up are all part of the process in completing
screening, which again is in contrast to decisions made regarding daily health practices
(Rakowski & Breslau, 2004). Collectively, these factors are even more of a concern for
individuals who lack knowledge and awareness of CRC screening, as well as for those
individuals who believe they are at low risk or have low confidence in completing the test
(Austin et al., 2009; Szczepura et al., 2003).
11
1.1.3 South Asian Immigrants
To better understand the heterogeneity of South Asian populations and settlement
patterns in western countries, the historical and social context of immigration and South
Asian sub-groups is discussed in relation to three countries, the United Kingdom (UK), the
USA, and Canada.
Immigration to Britain. Britain colonized the sub-continent of India in 1857
resulting in a change to the traditional culture, and local structures of power. In 1947, the sub-
continent of India attained independence with East and West Pakistan and India emerging as
free countries. East Pakistan would later become Bangladesh in 1971. These countries
experienced economic challenges following independence (Ballard, 2003). As an outcome of
the Second World War, there was a significant shortage of unskilled manual labourers in the
UK that resulted in large scale migration of migrant workers to Britain. Opportunities to work
in factories and foundries under labour contracts were plentiful, and South Asians migrated to
Britain. This set into motion chain migration; relatives and friends from the same village
accepted work in Britain for a higher and better wage than would be received in South Asia
(Ballard, 2003). The economic boom in the UK created an opportunity to have a better life.
South Asian people in Britain represent over 50% of ethnic minorities and include Gujarati,
Hindus, Punjabi Sikh, Punjabi Muslims, and Bangladeshi. The largest concentration of South
Asian individuals in Britain today are in the cities of London, and West Midlands followed
by West Yorkshire, and Greater Manchester (Pointer, 2005). Their primary places of origin
include India, Pakistan, and Bangladesh.
Immigration to the USA. The first immigrant settlers from India were Punjab Sikh
male farmers, labourers, and migrant workers who settled in California between 1907-1924
(Ahmad, 2012; Panetta, 2000). In 1965, the Immigration and National Reform Act loosened
immigration laws and the second wave of South Asian immigrants began to settle in the
12
USA. During this time, South Asian immigrants were primarily from the upper class, had
higher education, and were professionals, such as physicians, engineers, and scientists
(Panetta, 2000). Subsequent immigration with the third wave ensued; however, these
individuals were of merchant class, not as highly educated and worked in low paying jobs
such as, grocery stores and restaurants (Ahmad, 2012). Today, there are many SA
communities in the USA with larger populations residing in California and New York. South
Asian individuals in the USA describe their ethnic origins as Indian, Pakistani, Bangladeshi,
Sri Lankan, and Nepali (South Asian American Leading Together, 2011). Other places of
their origin are Ghana, England, Trinidad, Tobago, Kenya, Canada, and Fiji.
Immigration to Canada. The first settlers to immigrate to Canada‟s west coast were
Punjabi Sikh men coming to work in the sawmill industry in the early 1900s (Ahmad, 2012;
Ralston, 1999). Restrictions on immigration were imposed from 1909 to 1943 affecting South
Asian immigration to Canada (Ahmad, 2012). After the Second World War ended,
restrictions on immigration were lifted and in 1962, immigrant categories for entrance into
Canada were redefined. As a result, more emphasis was placed on immigrants main
contributing qualities, such as education, training, and skills as opposed to their nationality.
There was an overarching economic necessity; the need for particular skills. Immigration was
seen as a way to contribute to population growth, and improve Canadian standards of living
(Bouchard, 2007).
The point system came into effect in 1967 with the aim of boosting the flow of skilled
migrants to meet the economic needs of the time. A new immigrant policy in 1976 had three
core priorities: (a) family reunification; (b) humanitarian efforts; and, (c) promotion of
Canada’s economic, social, demographic, and cultural goal (Bouchard, 2007). By 1985,
immigration levels were re-examined in Canada due to fertility rates falling below the
population replacement level making it economically important to increase the flow of
13
immigrants. In 2002, the immigration policy was updated again and aimed to attract younger
bilingual and educated workers. The point system reflected this change: more points were
given for a trade certificate or a second degree; and, more points were given for English or
French speaking immigrants. In Canada, South Asian immigrants have primarily originated
from: (a) India, 48.8%; (b) Pakistan, 14.6%; (c) Sri Lanka, 11.7%; (d) Bangladesh; and, (e)
Guyana, Trinidad, Tobago, Fiji, United Republic of Tanzania, Kenya, and the UK (Statistics
Canada, 2008). Most South Asian residents live in Toronto and Vancouver, followed by
Calgary, Edmonton, Ottawa and Montreal (Statistics Canada, 2008). In 2011, South Asians
accounted for over 1.5 million residents and represented 25% of all ethnic minorities in
Canada (Statistics Canada, 2011).
1.1.4 South Asian Immigrants and Health Status
There is a definite relationship between immigration and health transitions, which is
extremely complex involving biology, pre-migration history, culture, behaviours,
environment, and socio-economic status (Chiu, 2003). Immigrants born outside of Canada
tend to have better overall health status than their Canadian counterparts when they first settle
in Canada. This is primarily due to previous healthy dietary and lifestyle factors, the
immigration procedures (e.g. medical exam) upon entering Canada, and the self-selection
process (Newbold & Danforth, 2003; Ng, Wilkins, Gendron, & Berthelot, 2005). This
phenomenon is also known as the “healthy immigrant effect”. With time spent in Canada,
health status changes as immigrants begin to assume similar risk factors and incidence rates
for chronic diseases of the non-Asian Canadian-born population (Beiser, 2005; Newbold &
Danforth, 2003; Ng et al., 2005).
In Newbold‟s (2009) study, the self-report rating of health status for first-generation
immigrants decreased over time, that is, health status changed from “good” to “poor”,
especially among immigrants who originated from East Asia and South Asia. While a number
14
of socioeconomic, social network, and health facilitating factors influenced self-perceived
reporting of health, perceptions of settlement also played an important role (Newbold, 2009).
For instance, an individual‟s positive perceptions of settlement impact health and in turn
seem to be linked to a reduced probability of a change to “poor health” over time. This
possibly reflects mental health factors related to the immigration process, and positive or
negative experiences of settlement.
Resettlement stress contributes to the declining health status of immigrants and
features some of the same factors previously mentioned (Beiser, 2005). Poverty, an important
social determinant of health is high among South Asian immigrants in Canada with rates of
23% compared to 16% in the entire population (Statistics Canada, 2007). In Canada, lower
income groups were less likely to be up to date with CRC screening even if there was a well-
established population-based screening program available in their province (Singh et al.,
2015).
The adoption of unhealthy lifestyle behaviours in the new society also may play a role
in health status decline (Newbold, 2009), which may in turn increase risk of CRC (World
Cancer Research Fund, 2011). Therefore, the interplay of socio-environmental and socio-
cultural factors and the decline in self-report health status among South Asian immigrants
with time settled in Canada reflects a need to understand CRC incidence and screening
behaviours.
1.1.5 Colorectal Cancer Incidence in South Asian Immigrants
There is a notable increase in incidence of CRC for South Asians who immigrate to
other countries, such as Canada, the USA and the UK compared to CRC incidence in their
countries of origin. In Canada, the CRC incidence for South Asian Canadians increased from
7.4 per 100,000 in 1994 to 24.8 per 100,000 in 1998 (Virk, Gill, Yoshida, Radley, & Salh,
2010). Patterns of cancer incidence amongst South Asian (SA) individuals from India, and
15
the native-born Canadian population were similar for the top three cancers diagnosed among
men and women in British Columbia with CRC being the third most common cancer (Hislop
et al., 2007). Similar findings were observed in the USA where CRC was the third most
common cancer diagnosed in Asian Indian and Pakistani immigrants (Hossain, Sehbai,
Abraham, & Abrahani, 2008). As well, time trend analysis undertaken from 1988-2000 with
California populations demonstrated a four-fold increase in CRC rates in SA residents when
compared to the SA population residing in India (Jain, Mills, & Parikh-Patel, 2005). An
increase of CRC incidence has also been seen among SA residents in the UK (Smith, Botha,
Benghiat, & Steward, 2003). While the incidence of CRC is not among the top cancers
diagnosed in SA origin countries, such as India or Pakistan (Hislop et al., 2007; Rastogi et al.,
2008; Smith et al., 2003), SA people who settle in western countries (i.e. Canada and USA)
begin to assume similar rates of CRC screening as native-born populations (Hislop et al.,
2007; Hossain et al., 2008; Jain et al., 2005; Rastogi et al., 2008). This emerging pattern of
increasing cancer incidence in SA origin populations in North America and the UK highlights
issues related to post migration factors such as the adoption of westernized lifestyle
behaviours, acculturation, socio-economic status, and low uptake of screening (Jain et al.,
2005; Quan et al., 2006; Virk et al., 2010).
1.1.6 Colorectal Cancer Screening among South Asian Immigrants
In exploring CRC screening practices for SA populations in Ontario, Canada, there is
limited data available to assess CRC screening rates in ethno-cultural sub-groups due to lack
of data on ethnicity in health care databases (Krzyzanowska et al., 2009). Rates of CRC
screening have been captured more broadly. For example, in one study, recent residents or
immigrants (<5 years in Ontario) had lower screening rates for CRC when compared to long
term residents (>5 years in Ontario) (Honein-AbouHaidar et al., 2013). Of these recent
residents, low income groups had only slightly lower rates of screening than higher income
16
groups. However, this study included all resident or immigrant population groups and lacked
specific data on differences by ethno-cultural group.
Studies undertaken in the UK and USA provide some data on uptake rates for CRC
screening in SA populations (Glenn, Chawla, Surani, & Bastani, 2009; Price, Szczepura,
Gumber, & Patnick, 2010; Szczepura et al., 2003; Taskila et al., 2009). In the UK, CRC
screening rates were low among the SA population compared to the native-born UK
population, 31.8% versus 61.3% respectively (Szczepura, Price, & Gumber, 2008). These
rates were similar for SA immigrants in the USA. Self-report findings identified 33% of SA
immigrants who had ever had a CRC screening test, and only 25% met guidelines of
completing any recommended CRC test including FOBT, flexible sigmoidoscopy, or
colonoscopy (Glenn et al., 2009).
The CRC screening uptake rates among SA immigrants in the UK and USA are
useful; however, they may not be generalizable to the SA immigrants residing in Canada. The
heterogeneity of SA immigrants in these countries is unique in terms of social, historical,
economic, and political context. The UK began implementation of their population-based
screening program much earlier than similar organized population-based CRC screening
programs in Canada. Consequently, rates of uptake among SA populations reported in one
report (Szczepura et al., 2008) were similar to rates of CRC screening in Ontario‟s general
population (CQCO, 2015). The USA does not have a population-based screening program
and the organization and administration of health services are not facilitated through a
publically funded system. Screening for CRC is facilitated through opportunistic screening
via primary care practice, and rates of CRC screening are publically reported. The CRC
screening rates in the USA among SA citizens (Glenn et al., 2009) do still approach the rates
of CRC screening among the general population in Ontario (CQCO, 2015). An expectation is
that the longer organized CRC screening programs are in existence, the more likely rates of
17
screening will increase across Canada. In Ontario, Cancer Care Ontario‟s dissemination
methods for the ColonCancerCheck Program continues to target the general population; but
they are also committed to reaching out to under-screened and never-screened populations,
including immigrant communities, to improve screening access (Spayne, Rabeneck,
Guerriero, 2015). In order to tailor and target interventions to diverse communities, it is
important to have an understanding of the beliefs and attitudes, and facilitators and barriers to
screening uptake.
In Canada, most of the screening literature on beliefs, facilitators, and barriers that
influence screening among SA communities, primarily first generation immigrants, has
focused on breast and cervical cancer screening or health services access (Ahmad et al., 2004;
Asanin & Wilson, 2007; Bottorff et al., 1998; Choudhry, Srivastava, & Fitch, 1998; Oelke &
Vollman, 2007). This provides some knowledge but it is not adequate to inform on CRC
screening for a number of reasons: one, different modalities are used in screening for CRC
and there may be unique barriers and individual preferences; and two, screening is relevant to
men and women requiring more consideration of gender-related factors that influence uptake.
Literature from the UK has identified CRC screening factors that influence uptake
such as: (a) lower self-perceived susceptibility; (b) belief that FOBT was less effective in
finding cancer; (c) unpleasant or unhygienic nature of the test; (d) limited confidence in the
capability to complete the test; and (e) lower level of social support (Szczepura et al., 2003).
Other reported reasons for not participating in CRC for SA immigrants in the UK were
embarrassment, shame, and unacceptability towards screening (Robb, Solarin, Power, Atkin,
& Wardle, 2008; Taskila et al., 2009), while peace of mind reflected a reason for
participating in CRC screening (Austin et al., 2009; Robb et al., 2008). Consequently,
evidence to date does not provide enough depth of understanding about beliefs, facilitators,
barriers, or reasons for CRC screening decision-making among SA immigrants in Canada.
18
1.2 Problem Statement
The SA immigrant population is the largest, most rapidly growing ethno-cultural
population in Ontario. From 2001 and 2006, there was an increase of 43% in the number of
immigrants from South Asia coming to Canada; a group that represents a quarter of all ethnic
minority populations (Statistics Canada, 2008).
The incidence of CRC increases among SA populations with time spent in the new
society of settlement (Hislop et al., 2007; Rastogi et al., 2008; Smith et al., 2003).
Acculturation, socio-environmental factors, and adoption of western lifestyles have been
speculated as factors that influence an increase of cancer incidence (Jain et al., 2005; Quan et
al., 2006; Virk et al., 2010). Even though there is strong evidence to support population-based
CRC screening (CTFPHC, 2001) to prevent cancer if polyps are removed or cure it with early
detection, the uptake in the average risk population has not reached optimal targets for all
average risk people to have screening in Ontario (CQCO, 2015). What is known is that
cancer screening uptake for other common cancers is low among SA immigrants (Quan et al.,
2006). Colorectal cancer screening was also reportedly lower among SA immigrants when
compared to the general population in the UK and USA (Glenn et al., 2009; Szczepura et al.,
2008). Reasons for not participating in CRC screening have pointed to low self-perceived
risk, dislike of the test, low confidence, and lack of social support (Szczepura et al., 2003).
Thus, there is a gap in understanding factors that influence CRC screening uptake in SA
immigrant men and women in Ontario, Canada.
The rationale for conducting this research was related to the growing SA immigrant
population in Canada, the rising CRC incidence in this population, the disparities in CRC
screening, and the gap in knowledge in the literature to inform on understanding CRC
screening decision-making among SA immigrants within the Canadian context. Given this
19
knowledge gap, both qualitative and quantitative approaches were necessary to examine the
problem.
The most appropriate approach to address the research problem was to conduct an
exploratory sequential mixed method study with the overall aim to explore factors that
influence CRC screening uptake among SA immigrants, and to develop an empirically-based
cross culturally adapted survey to better understand uptake in Ontario, Canada. In this study,
there were three phases, where each study was conducted individually, and findings from one
phase informed the next phase (Creswell & Plano Clark, 2011).
1.3 Theoretical Foundations
There are four parts to this section. The first part presents the researchers‟ overarching
worldview, Critical Social Theory, a grand theory that allowed a broader conceptualization of
societal processes providing the general guiding framework for the exploratory sequential
mixed method study. To understand more about empirical context of migration and culture,
and the factors that influence individual behaviour, middle range theories were also relevant
to examine. Given the focus on the SA immigrant population, a review of cultural concepts
and models that applied to migrant communities was undertaken. Berry‟s (1997)
Acculturation Model was selected and is discussed. As well, health behaviour models and
theories relevant to cancer screening were reviewed to identify concepts that would be most
useful to guide and/or interpret findings from the scoping study, the focus group study, and
the survey development study. The review of models and theories included the Health Belief
Model (Rosenstock, Stretcher, & Bekker, 1988), the Theory of Planned Behaviour (Ajzen,
1991), and the Behavioural Reasoning Theory (Westaby, 2005).
20
1.3.1 Critical Social Theory
The research question and methods employed are influenced by the overarching
worldview or paradigm of the researcher. A paradigm represents the researcher‟s way of
thinking and experiencing, and the core assumptions, beliefs, values and practices that guide
the research process in a specific discipline, such as nursing (Morgan, 2007). Components of
a paradigm that frame an inquiry include: the ontology, the nature of or understanding of
reality; the epistemology, the way knowledge is gained or known; and, the methodology,
which represents a researcher‟s values and understanding of how knowledge is created
(Morgan, 2007). The ontology, epistemology and methodological considerations that
underpinned this exploratory sequential mixed methods study were informed by the
researcher‟s overarching paradigm of Critical Social Theory (CST).
According to the CST, reality or truth exists but it is “historically situated” (Lincoln,
Lynham, & Guba, 2011). This ontological belief places an emphasis on the context of reality,
such as place and time. For example, universal availability of CRC screening is a reality for
Canadian residents but not for individuals residing in developing countries of South Asia.
Further, according to the CST, reality is believed to be captured over time and formed by
social, political, cultural, economic, and ethnic and gender values. Thus, a central tenet of the
CST is its focus on social justice and issues of power (Kincheloe, McLaren, & Steinberg,
2011). Power relationships exist within society, and researchers situated in this paradigm
critically examine social and cultural systems, and advocate for social justice and the
empowerment of specific populations. Also of interest are the methods by which gender,
race, religion, economic status, education, and underlying cultural forces inter-relate within a
social system (Kincheloe & McLaren, 2000). This resonates with the researcher‟s desire to
promote equity in access to CRC screening for ethnic minority communities including the
studied SA immigrant community.
21
The methodology within a CST paradigm focused on knowledge that was created
based on the study of the problem using qualitative and quantitative methods, and that
acknowledged the dialectical relationship between SA immigrants‟ CRC screening decisions
and their environment. Critical Social Theory informed the design of this research in multiple
ways. First, the choice of an exploratory sequential mixed method design aimed to gain a
greater breadth of understanding of CRC screening among SA immigrants. The overall
intention of the researcher has been to give voice to the perspectives of the SA immigrant
community in practice, research, and future policy development. Further, the dialectical
principle of CST also accommodated the use of different research methods, qualitative and
quantitative as tools (details presented in the exploratory mixed method section). Second, the
choice of the scoping study framework established by Arksey and O‟Malley (2005) allowed
the researcher to conduct a comprehensive literature review that enabled the inclusion of both
qualitative and quantitative evidence from relevant published and unpublished research in
phase one. Third, the focus group study aimed to equalize power differences between the
researcher and participants, and promoted cultural safety by holding sessions in settings that
were in familiar locations with participants conversing in their preferred language. Male and
female research assistants of SA descent with multi-lingual skills facilitated focus groups.
Research assistants fostered comfort and respect, engaged participants actively in
open dialogue during focus groups, and situated the research so that diverse experiences of
SA immigrants were heard and valued. South Asian immigrants were empowered to address
the research problem through dynamic group interactions that enabled rich discussions in a
naturalistic setting (Kevern & Webb, 2001). Lastly, the design and cognitive testing of a
survey engaged members of the SA community in multiple ways, following the dialectical
principle of CST. For example, SA immigrants were involved as informants and research
22
assistants, the cross cultural translation and adaptation process, and in pre-testing the function
of the developed survey using cognitive interviews.
The principles of CST also emphasize that a researcher recognizes her/his own role
and subjectivity for the purpose of transparency and trustworthiness. Specific attention was
also given to reflexivity for quality and rigor.
Researcher’s role. Situating this research within the CST paradigm requires making
explicit the researcher‟s disciplinary affiliation, the evolution of the problem, and the
researcher‟s assumptions of the topic (Caelli, Ray, & Mill, 2003). As a public health nurse
and a doctoral student, interest in chronic disease prevention and equitable access to
information and health services, this problem arose out of previous practice and research.
Public health programming that aimed to promote outreach and access to information about
breast and cervical cancer screening among four immigrant women communities resulted in
knowledge gained about unique challenges experienced by SA immigrant populations. With
the phased in implementation of the population-based CRC screening program in Ontario,
Canada (MOHLTC, 2014) and guided by the Ontario Public Health Standards (2008) and
limited knowledge of CRC screening outreach among SA populations, my interest exploring
CRC screening among SA immigrants evolved and became the focus of my research. As my
philosophical position is informed by the CST lens, it was important to acknowledge how this
related to current public health practice and researcher assumptions in community health.
As a public health nurse in an adult Chronic Disease Prevention team for many years,
my role consisted of working with under-screened priority populations. Therefore, my first
assumption for this research was that CRC is highly preventable when polyps are removed,
and curable if detected early (CCO, 2009), and all eligible average risk adults should have
equitable access to information and screening. Access is fundamental to enabling screening
uptake, and as discussed earlier, there are disparities in CRC screening uptake among SA
23
immigrants. Second, CRC screening research under-represented SA immigrant sub-groups of
the population in Canada, and inclusion in the research process was imperative to give voice
to and understand their perspectives. Third, my relationship with the SA immigrant
community evolved over time due to community engagement efforts, and the provision of
support and collaborative relationships established through public health practice over many
years in Hamilton, Ontario. This relationship has been ongoing and continues to exist today
because of my continued involvement in other similar community-based projects through
public health. The trust established with SA communities was important for advocacy and to
empower SA immigrants to share experiences and their perspectives. Finally, the research
aligned closely to my philosophical position informed by CST with an emphasis on social
justice, and future research goals: (1) to engage SA immigrants using dialectical methods in
the research; (2) to gain further understanding of CRC screening behaviours among SA
immigrants; and (3) to reduce health inequities through the development of community-based
strategies to promote CRC screening among SA immigrants in Ontario (Ontario Public
Health Standards, 2008).
The role of the researcher was determined by the qualitative and quantitative methods
utilized in the research process. According to Morgan (2007), moving between different
frames of reference were important to maintain inter-subjectivity (Morgan, 2007). Therefore,
reflective strategies were employed (i.e. individual self-reflection and documenting notes in
audit trail) throughout my research and this assisted in recognizing biases in this exploratory
sequential mixed method study.
Reflexivity and rigor. Informed by the overarching paradigm of CST, a reflective
audit trail was used to document the phases of the research process, and enhance the rigor of
the methods (Findlay, 2002). The audit trail is a method by which the researcher engages in
“reflexivity”, an important component of qualitative methodology, but also in a mixed
24
methods study. The rationale is that it makes explicit biases and pre-supposition by
examining motivations, assumptions, and interests to reflect on what may influence the
research process. Additionally, the audit trail aimed to ensure that findings accurately
captured the phenomenon of interest based on SA immigrant perspectives (Findlay, 2002).
The audit trail was used as an evaluation tool that added trustworthiness, rigor, and credibility
to the study during all phases because it captured important insights of the research process,
outcomes of data collection, checked assumptions and pre-suppositions, and detailed new
learning, insights and challenges (Finlay, 2002). An electronic reflective journal was
maintained to chart and monitor study activities and progress, challenges, and important
“milestones”.
1.3.2 Migration and Culture
Migration to a new society requires an appreciation of culture and the acculturation
process. Therefore, a review of the concepts of culture, cultural safety, and acculturation was
undertaken to situate understanding of unique socio-cultural context of SA immigrants
residing in western countries and its relevance to decision-making for CRC screening.
Culture is defined within a behavioural, psychological and cognitive system, and is
comprised of commonly shared beliefs and values, traditions and rituals, behaviour patterns,
and lifestyles passed on to generations through language and socialization (Kagawa-Singer,
2001; Munoz & Luckman, 2005). Culture is dynamic, and in constant change being adaptive
and responsive to relationships within the environment. This view is informed by CST tenets
of the dialectical relationship between individuals and environment in which SA populations
live, work and play. Adaptation to environmental factors includes social, political, historical,
economic, and technological influences (Kagawa-Singer, 2001; Munoz & Luckman, 2005).
Culture also includes the attitudes within a group, such as gender roles, religion, and
decisions related to health and illness (Kagawa-Singer, Valdez-Dadia, & Surbone, 2010). The
25
family social structures and patterns of decision-making processes are unique to a cultural
group. With time, cultural beliefs, values, and behaviours may change through multi-cultural
interactions in the new society (Kagawa-Singer et al., 2010). Specifically, health care
interactions are imperative to receive information or to participate in CRC screening. Yet,
inequities to access may exist in part be due to the social and political context of health care
service delivery.
In Canada, cultural safety has been used as a lens to examine health inequities, and
health care interactions between migrants (Anderson et al., 2003) or Aboriginal peoples
(Brascoupé & Waters, 2009) and native-born health care workers. Cultural safety is a strategy
for health care providers to utilize during their interactions because it raises awareness of the
historical, social, and emotional context of individuals lives, and makes one culturally
sensitive to power dynamics within relationships (Nursing Council of New Zealand, 2011). In
contrast, “unsafe cultural practice compromises any action which diminishes, demeans or
disempowers the cultural identify and well-being of an individual” (Nursing Council of New
Zealand, 2011, p.7). Cultural safety, therefore, aligns with the CST lens because it makes
apparent issues of power in relationships during situations where cultural groups may
interact, and represents a form of social justice by making evident and addressing situations
of discrimination and racism (Bearskin, 2011). Equalizing power and understanding the
social factors that contribute to health inequities (Browne et al., 2009) are imbedded in the
cultural safety concept. The principles of cultural safety may be useful to consider when
examining specific barriers to CRC screening among SA immigrants. The interplay between
nurses or other health care providers and SA immigrants may also indirectly influence
adaptation in the acculturation process.
26
1.3.3 Acculturation Model
Acculturation extends the meaning of culture and cultural safety to reflect interactions
and adaptive changes that occur as a result of migration. After reviewing several related
middle range theories and models (Berry, 1997; Epstein & Gang, 2015; Leninger, 2001;
Spector, 2013), it was determined that Berry‟s (1997, 2005) Acculturation Model was the
most appropriate to understand findings from the scoping study, focus group study, and
survey development study. Berry‟s (1997, 2005) Acculturation Model aligns well with CST
as it incorporates key variables relevant to the acculturating individual such as social,
political, economic and demographic factors, and the cultural and historical context and
attitudes of the receiving cultural groups in the new setting (Berry, 1997).
When migrants first settle in a new country, they experience “intercultural contact”
(Berry, 1997). This contact can be said to either influence culture or subsequent change of
behaviour or result in a more “complex pattern of continuity and change” in the way of life in
the new country of settlement (Berry, 1997, p.6). Berry (1997, 2005) defines acculturation as
cultural and psychological alterations and outcomes of the interactions concerning two or
more groups and its members. There are a multitude of cultural backgrounds within a society
forming key cultural groups. Power differences emerge among diverse cultural groups
because of the imbalance of power and the changes inherent to the acculturation process.
Berry (1997) identifies all groups as cultural groups, and uses non-dominant and dominant
groups when required as it relates to power within a specific context.
The acculturation experience is significant in that it reflects life events, the appraisal
of the experience and potential stressors, the strategies used to cope with migration,
immediate effects (i.e. stress), and the long term goal of adaptation. These processes involve
complex phases of adjustment and are in line with the strategies used to acculturate. The
specific strategy that groups or individuals use to acculturate will differ based on time or
27
contextual factors such as length of residence in the new country or generational status upon
immigration.
Acculturation strategies. Berry (1997) outlines four key acculturation strategies that
are considered here for non-dominant groups. Group-level acculturation and individual-level
psychological acculturation have been defined by Berry (1997), as well as four key
acculturation strategies. These strategies were interpreted through the researcher‟s CST lens.
Within this view, reality for SA immigrants is historically influenced, and the relationship
between individual and environmental context is important to consider. Assimilation is the
first strategy, where contextual factors influence the individual‟s desire to give up some
aspects of their cultural heritage and pursue opportunities to interact with other cultural
groups (Berry, 1997, 2005). Separation or Segregation is the second strategy. Individuals
may hold true to their cultural identity and limit interactions with other cultural groups.
However, when contextual factors within the dominant society force the choice of
acculturation, this may lead to segregation. Integration is the third strategy, where there is
maintenance of certain aspects of cultural identity with a desire to be part of the new culture.
To be successful, integration requires mutual accommodation, and acceptance of both
dominant and non-dominant groups to live as culturally unique and diverse groups (Berry,
1997, 2005). The fourth and last strategy is marginalization; those who experience enforced
cultural loss have limited interest in sustaining cultural identity or lack desire for inter-
cultural contact with others due to exclusion or discrimination. For the purposes of this study,
psychological acculturation and coping at the individual level will not be discussed in detail.
Adaptation. The adaptation to a new culture and society involves psychological
adaptation and socio-cultural adaptation (Berry, 1997, 2005). Psychological adaptation is
concerned with psychological and physical well-being and influenced by individual
personality, life altering events, and social support obtained in the new setting. Socio-cultural
28
adaptation is the ability of individual‟s within a group to have the skills to manage in daily
life in the new cultural environment, and is influenced by cultural knowledge, degree of
contact, and positive inter-group attitudes (Berry, 1997, 2005). Psychological issues of
adaptation increase shortly after interaction with the new society, and then usually decreases
with some variability over time; whereas, socio-cultural adaptation tends to improve with
time in the new society (Berry, 1997, 2005). Given that individuals within a community share
acculturation strategies, adaptation may also be viewed as a group-level phenomenon.
1.3.4 Health Behaviour Theories
A review of middle range theories was undertaken in order to identify theoretical
concepts for guiding and/or interpreting findings of the scoping study, the focus group study,
and the survey development study. A large body of cancer screening literature has focused on
individual-level theories, the Health Belief Model (Rosenstock et al., 1988) being the most
popular, followed by the Theory of Planned Behaviour (Ajzen, 1991) with little attention
given to the context of screening behaviour. At the same time, the overarching CST paradigm
places emphasis on the dialectical relationship between humans and the environment. Thus,
the researcher searched for a theory that included a focus on context and The Behavioural
Reasoning Theory (Westaby, 2005) was identified as the most suitable alternative. Further
details on the main models/theories and limitations are presented, followed by a more
extensive discussion of the chosen theory, the Behavioural Reasoning Theory (Westaby,
2005).
Health Belief Model. The most common health behaviour model used in research
examining CRC screening behaviours is the Health Belief Model, an individual-level
behaviour model (Beydoun & Beydoun, 2008; Javanparast et al., 2010). The Health Belief
Model (HBM) has a long history in behavioural research in cancer screening and is suitable
for explaining behaviours of healthy and asymptomatic individuals who engage in non-
29
medical or medical activities (Champion & Skinner, 2008). The HBM reflects theoretical
understanding at an intrapersonal level; whereby, important concepts to understand individual
behaviours include: perceived susceptibility, perceived severity, perceived benefits, perceived
barriers, self-efficacy, and cues to action (Rosenstock et al., 1988).
The HBM concepts have been used to develop scales measuring benefits and barriers
to CRC screening (Janz, Wren, Schottenfeld, Guire, 2003; Koo et al., 2010; Rawl et al., 2001;
Shokar, Carlson, & Weller, 2008). While the HBM is simple to understand and apply in
explaining cancer screening behaviours, there are number of limitations: (1) the relationships
between theoretical concepts have not been well tested to determine if they predict
behaviours; (2) the emotional component of health behaviours has not been considered in the
theory; (3) cues to action are limited in that this concept has rarely been tested; and (4) the
socio-environmental context is missing, which is of importance in understanding behavioural
intentions (Champion & Skinner, 2008). While behavioural concepts in the HBM have been
extensively used in cancer screening studies (Champion & Skinner, 2008), the model lacks
emotional and socio-environmental context including reasons for decision-making that are
important to studying CRC behaviours in SA immigrants.
The Theory of Planned Behavior. The second individual-level behaviour theory
considered was the Theory of Planned Behaviour (Ajzen, 1991). Studies have used the
Theory of Planned Behaviour (Ajzen, 1991) concepts to examine attitudes related to CRC
screening, social influences, and behavioural intention (McCaffery, Wardle, & Waller, 2003;
Tiro,Vernon, Hyslop, & Myers, 2005). The Theory of Planned Behaviour (TPB) proposes
that as humans, behaviours are not solely under voluntary control, and that individual
behavioural intentions are ideal in predicting what future behaviours will be performed
(Montano & Kasprzyk, 2008). Three variables precede behavioural intentions: (a) an
individual‟s attitude of the positive and negative aspects of performing a specific behaviour,
30
and outcomes; (b) the subjective norm related to normative beliefs of others expectations
(approval or disapproval) related to the behaviour, and the individual‟s ability to comply with
others way of doing things; and, (c) the perceived behavioural control of the individual‟s
ability to undertake a behaviour while also overcoming barriers to implement the behaviour
(Azjen, 1991; Montano & Kasprzyk, 2008).
The limitations of the TPB include: (1) ambiguous definition of perceived
behavioural control; and (2) the assumption that individual decisions are based on
information, and lack of consideration of unconscious thought or context of the decision-
making process (Montano & Kasprzyk, 2008). Therefore, context-specific variables that are
lacking in the TPB fail to account for reasons that motivate individuals in decisions related to
CRC screening.
1.3.5 Behavioural Reasoning Theory
The Behavioural Reasoning Theory (BRT) is an integrated theory (Westaby, 2005)
that incorporates concepts from the TPB (Ajzen, 1991), Explanation-based theory
(Pennington & Hastie, 1993), and Reasons theory (Westaby, 2005a; Westaby & Fishbein,
1996).
The main premise of the BRT is that context specific reasons are an essential
component in understanding the association between belief concepts, global motives,
intentions, and behaviours (Westaby, 2005). Global motives include attitude, subjective
norm, and perceived behavioural control as precursors to intention, and as mediators to belief
concepts (Westaby, 2005); all concepts contained in the TPB. The integrated BRT includes
context (Westaby, 2005), an important distinction from the TPB (Ajzen, 1991). Context
specific reasons refer to an individual‟s rationale for engaging in specific behaviours
(Westaby, 2005). Consequently, the BRT aligned well with the research problem in exploring
factors that influence CRC screening decision-making among SA immigrants, and informed
31
this exploratory sequential mixed method study. Theoretical concepts of the BRT will be
described further in the following paragraphs.
Theoretical concept of reasons. The reasons concept is inclusive of a wider breadth
of contextual factors to explain behaviour (Westaby, 2005). Individuals use reasons to defend
their decisions about specific behaviours (Westaby, 2005a). There are three types of reasons:
(1) anticipated reasons to justify future behaviour; (2) concurrent reasons to explain current
behaviours performed or not performed; and, (3) post hoc reasons used to explain past
behaviours performed or not performed (Westaby, 2005). See Figure 1.
Conceptually, there is a difference between beliefs and reasons. In the TPB (Montano
& Kasprzyk, 2008), an individual‟s beliefs and values relate to an individual‟s perception that
a specific behaviour will result in an outcome or consequence. Individuals who perceive
outcomes in a positive and important way tend to be more motivated to act on the specific
behaviour (Montano & Kasprzyk, 2008). Therefore, beliefs and values are broader
representing various thought processes. In contrast, reasons are specifically focused on
explanations individuals use to defend their behaviour (Westaby, 2005a). Beliefs and values
are theoretically linked to reasons or an individual‟s explanation for behaviour (Westaby,
2005).
Automatic cognitive processing. Beliefs and values concepts and reasons are
contextual and focused on specific behaviours under study and act as the precursors to global
motives and intentions (Westaby, 2005). Individual beliefs and values also have the potential
to impact global motives without any known reasons. This is proposed to be through
unconscious thought and automatic cognitive processing, which in turn, limits processing and
identification of reasons to validate behaviour. Reasons are not completely separate from
beliefs and values; rather they may also directly influence an individual‟s decisions (see
Figure 1, arrow A).
32
Figure 1 Behavioral Reasoning Theory (Permission received from J.D. Westaby to adapt Figure 2, pp. 99
from Westaby, J. D. (2005). Behavioural reasoning theory: Identifying new linkages underlying intentions and
behaviour. Organizational Behavior and Human Decision Processes, 98(2), 97-120.
doi: 10.1016/j.obhdp.2005.07.003)
Reasons to global motives. Reasons are a precursor to global motives including
attitude, subjective norm, and perceived behavioural control (Westaby, 2005a). Individuals
feel self-confident and comfortable with their decisions if they can provide reasons to
rationalize and support their behaviour even when global motives are not in line with what
they intend to do. The justification for behaviour with reasons may also influence
behavioural intention over and above global motives (see Figure 1, arrow B); a theoretical
link not addressed in the TPB (Ajzen, 1991).
Post hoc reasons. Individuals will do what it takes to rationalize their behaviour once
they have already performed the behaviour (Westaby, 2005). Reasons for engaging in
behaviour are strengthened over time as the behaviour is repeatedly performed (Westaby,
2005). As time passes, psychological discomfort with performing the behaviour is reduced as
Reasons
For CRC
screening For NOT having
CRC screening
Intention To have
CRC
screening
Global Motives Related to
CRC screening
Attitude Subjective Norm
Perceived
Behavioral Control
C
South Asian
Immigrants
50-74 years of age
Demographics Gender
Years in Canada
Education Income
Employment
Socio-cultural Ethnic/Religion Origin country
Family
Social supports
Beliefs
Values
Notes: A. Automatic process with no reasons B. Reasons over and above global motives C. Post hoc reasoning
A
B
Behaviour To participate
in CRC
screening
33
reasons equal actions. This represents a temporal effect, from behaviour back to reasons (see
Figure 1, arrow C).
There is a reciprocal relationship between psychological concepts and behaviour. The
BRT considers multiple psychological processing pathways (Westaby, 2005). After all, some
individuals will flow through all of the processes of the model consecutively, while other
individuals skip processes using only post hoc reasons to rationalize choices. Lastly, while
reasons for enacting behaviour may remain stable over time, there is potential for new
information to interject so that an individual pauses to reflect on current reasons for
behaviour, in turn, this results in uncertainty about the intention or the behaviour (Westaby,
2005). The examination of post hoc reasons concept will require probing an individual‟s
pathway to decisions made about CRC screening to gain greater understanding.
The BRT concepts have been used to understand reasons for decisions to seek out
assistance in the context of domestic violence in one Canadian study with SA immigrant
women (Ahmad, Driver, McNally, & Stewart, 2009). Other workplace and organizational
behaviour research previously undertaken have tested, and validated the BRT concepts
(Westaby, 2002; Westaby, 2005; Westaby, 2005a; Westaby & Braithwaite, 2003; Westaby &
Fishbein, 1996; Westaby, Probst, & Lee, 2010).
In this exploratory sequential mixed method study, the BRT was used to primarily
guide exploration of concepts and underlying beliefs most important within the context of
CRC screening for SA immigrants in Ontario, Canada. This provided a greater breadth and
depth to enhance understanding of CRC screening decision-making. While the linkages
identified earlier predict behavioural intentions, they have been described to reinforce the
importance of beliefs and values, reasons, and global motives (attitude, subjective norm, and
perceived control) as precursors to decision-making related to CRC screening. The TPB
concepts that are sub-summed under global motives in the BRT informed the synthesis of the
34
scoping study, and the interview guide for the focus group study in this thesis. At the same
time, the contextual emphasis in the BRT allowed the researcher to interpret the findings by
taking into account the immigration and settlement experiences of SA communities and the
population-based CRC screening program in Ontario, Canada. The pathways described in the
BRT will not be examined in this thesis as it is beyond the scope of the research.
1.4 Overall Aim of Study
The overall aim of this study was to explore factors that influence CRC screening
uptake among average risk SA immigrants 50 to 74 years of age, and to develop an
empirically-based cross culturally adapted survey for use in Ontario, Canada. To accomplish
this, a mixed method study using an exploratory sequential design with three phases was
utilized.
1.5 Exploratory Sequential Mixed Methods Design
An exploratory sequential mixed method design, an instrument development variant,
was used for this study. The design is directly linked to the purpose of and nature of the
research questions posed and necessitates separate studies. An initial exploratory phase of
study may inform the next phase to examine the problem with greater depth, and
subsequently the findings from prior phases can be utilized to develop measures in a survey
specifically for SA populations (Creswell & Plano-Clark, 2011; Tashakkori & Teddlie,
2003). The rationale for utilizing an exploratory sequential mixed method design is that the
nature of CRC screening behaviours is complex, as are factors that influence screening
among a diverse SA population (Vernon et al., 2004). Thus, this approach allows a greater
depth of understanding the specific factors that influence CRC screening most relevant and
applicable to SA immigrants by enabling them to share their perspectives, and in turn inform
survey development to further examine these concepts in a larger SA immigrant population
(Creswell & Plano Clark, 2011).
35
This design incorporates both qualitative and quantitative methods within one study,
allowing a more comprehensive examination of the problem and addresses multiple research
questions (Johnson & Onwuegbuzie, 2004). Utilizing both methods is significant because the
inherent weaknesses of each individual method is minimized making it superior in addressing
the research problem. Study findings from all phases were combined within one study to
address the research problem. The three conditions of this approach were considered in
relation to qualitative and quantitative phases: the prioritization, timing, and integration.
For prioritization, this exploratory sequential mixed method design placed greater
emphasis on the qualitative findings from the scoping and the focus group studies. This
generated greater depth of understanding CRC screening related concepts most relevant to
SA immigrants to inform on quantitative measures for the survey development study. The
pre-testing of the survey also used cognitive interviews with SA immigrants to examine
conceptual relevance of measures and comprehension of the survey (Collins, 2003). This
involved further qualitative analysis of findings and revisions prior to fielding the survey in
post-doctoral work.
In relation to timing, the process of data collection and analysis occurred sequentially.
The first phase included a scoping study to identify literature that reported on cancer
screening behaviours among SA immigrants. The rationale is that the literature on CRC
screening behaviours was limited, and a broader search was needed to get a sense of what
was available on cancer screening in this population. The identification of a gap in the
reviewed literature led to a focus group study as it was imperative to gain an in-depth
understanding of factors that influenced CRC screening decision-making among SA
immigrants in the Canadian context. Results from the scoping and focus group studies built
on knowledge of factors that influence cancer and CRC screening among SA populations,
and also informed the survey development study (Creswell & Plano Clark, 2011).
36
The integration of data involved combining findings from the scoping and focus
group studies to inform on concepts related to CRC screening most relevant to SA
immigrants that needed to be measured in a quantitative survey. This step was essential to
guide the multi-step process of survey development to: define concepts, construct a
conceptual model, conduct a literature search for pre-existing candidate measures, critique
measures for conceptual match, cross culturally translate and adapt the survey into the Urdu
language, and pre-test the survey using cognitive interviews. After cognitive interviews,
revisions were made to the survey. Final integration (i.e. mixing) of key phases of this
exploratory sequential mixed method study will occur when the survey is pilot tested in post-
doctoral research to determine the degree by which qualitative results are validated in the
pilot study.
1.6 Three Phases of Study
The exploratory sequential mixed method study incorporated straightforward design
phases with individual studies that could be reported to inform each subsequent phase. The
three phases of studies included: (1) a scoping study; (2) a focus group study; and (3) a
survey development study (See Figure 2). The first research objective was to explore beliefs,
attitudes, and facilitators and barriers to cancer screening among SA immigrants residing in
western countries. The second objective was to explore the perspectives of SA immigrants
about their beliefs and values, attitude, subjective norm, perceived behavioural control, and
reasons for having or not having CRC screening in average risk SA immigrants, 50 to 74
years of age in Hamilton, Ontario. The third objective was to develop a survey assessing key
factors that influence CRC screening uptake derived from phase one and two study findings,
cross culturally translate and adapt the survey into the Urdu language, and pre-test the
surveys using cognitive interviews with SA immigrants, 50 to 74 years of age in Hamilton,
37
Ontario. Further details of each phase including the research question, rationale, objectives,
and methods are presented.
Figure 2. Exploratory Sequential Mixed Methods Flowchart
1.6.1 Phase One: Scoping Study
The initial phase involved a comprehensive review of the literature through a scoping
study for the identification of available literature to inform on factors that influenced cancer
screening among SA immigrants settled in western countries. This involved a comprehensive
Phase Two
Focus Group Study
Research question
Approach: Qualitative
Research Ethics Approval: University of
Toronto & Brock University
Sample: South Asians in Hamilton, Ontario
Data collection: Semi-structured, open-
ended interview guide
Data analysis: Grounded Theory
techniques and thematic analysis
techniques
Phase One
Scoping Study
Research question
Approach: Qualitative and Quantitative
studies/reports
Sample: South Asians in western
countries
Data collection: Comprehensive
literature search
Data Analysis: Narrative and thematic
analysis
Phase Three
Survey Development Study
Research objectives
Approach: Quantitative description and/or prediction
Research Ethics Approval: University of Toronto & Brock University
Sample: South Asians in Hamilton, Ontario
Data collection: Three stages - Phase 1 & 2 findings for concept identification; cross cultural
translation and adaptation into Urdu; pre-test with cognitive Interviews
Data analysis: Qualitative to examine comprehension, and function of questions and responses,
design layout, and translation of survey
Findings
1. Inform practice and research
2. Informed qualitative study
3. Informed survey
Findings
1. Informed practice and research
2. Informed survey
Phase Two
Focus Group Study Products Key concepts: Themes and sub-themes
Phase One
Scoping Study Products
Key concepts: Themes and sub-themes
FINAL PRODUCT = SURVEY for
SA immigrants
38
exploration of diverse published, unpublished, qualitative, and quantitative literature that was
accessible in an English language format.
Rationale. A scoping study was chosen because it utilizes a rigorous and explicit
process to assess a diverse body of literature (Arksey & O‟Malley, 2005). In a scoping study,
broader topics or research questions are formulated without strict limits on literature searches,
study design selection, or in the identification of relevant studies (Arksey & O‟Malley, 2005).
The benefit of a scoping study includes: a comprehensive and efficient method to identify
main concepts grounded in a specific research area, the identification of available evidences,
and exploration of a topic that has not undergone previous review (Mays, Robert, & Popay,
2001). The comprehensiveness of the scoping study depends on the intended purpose. The
purpose of this scoping study was to map the available evidence related to factors that
influenced cancer screening in SA immigrant populations, identify gaps in the literature, and
summarize the research findings in order to further inform practice and research. The scoping
study findings were then used to inform the second phase, the focus group study.
Initial research question. The initial question posed was: What are the factors
that influence uptake and access to CRC screening among SA immigrants?
Final research question. The initial question was unsuccessful in returning
adequate citations, possibly because it was too narrowly focused on CRC screening.
Consequently, the question was broadened to: What are the cancer screening beliefs,
attitudes, facilitators, and barriers to uptake among SA immigrants residing in western
countries? Literature that emerged was primarily from the UK, USA and Canada.
Methods. The review methods for the scoping study were informed by Arksey
and O‟Malley‟s (2005) framework which included: (1) establishing the research question; (2)
identification of relevant studies; (3) study selection; (4) charting data; and (5) collating,
summarizing, and reporting results. Three methods were used to present findings: (a)
39
characteristics of studies and reports; (b) a numerical summary to represent the distribution of
studies; and (c) a narrative review and thematic analysis to report what was found in the
literature, and capture the most important and recurrent themes, respectively (Levac,
Colquhoun & O`Brien, 2010; Mays, Pope, & Popay, 2005).
1.6.2 Phase Two: Focus Group Study
The second phase (a predominant phase) used naturalistic inquiry and qualitative
exploration of factors that influenced CRC screening among SA immigrants residing in
Hamilton, Ontario. Through qualitative inquiry, the focus group study engaged participants
who were under-represented in research to share their perspectives of CRC and screening.
Rationale. Focus groups methods were selected because they were congruent to the
researcher‟s ontology of CST, and enabled exploration through dialogical interactions among
SA immigrant participants. Focus groups are particularly beneficial for the exploratory nature
of this study (Kreuger, 1988). The social interactions are an important aspect of focus groups
for participants to share their views of CRC and screening, and in turn, enhance the richness
of data collection. As well, participants in focus groups are empowered, control interactions,
and share multiple perspectives on beliefs and attitudes, practices, and screening experiences
in a safe atmosphere (Kamberelis & Dimitriadis, 2011).
Research question. The question posed was: How do SA immigrant men and women
describe beliefs and values, attitude, subjective norm, perceived behavioural control and
reasons in the decision-making process for having or not having CRC Screening in Ontario?
Methods. The method of data collection used focus group techniques to elicit
perspectives of SA immigrant participants. Hamilton, a mid-sized urban center in Ontario
was the site of recruitment. The rationale for recruiting from Hamilton was that the
population was accessible through previously established public health contacts, and feasible
to recruit diverse average risk SA immigrants, 50 to 74 years of age. Purposive sampling was
40
used to recruit participants. Focus groups were audio-taped and transcribed verbatim, with
translation and back translation as required. Qualitative analysis used Grounded Theory
techniques and thematic analysis techniques (Braun & Clarke, 2006; Corbin & Strauss, 2008;
Glaser & Straus, 1967).
1.6.3 Phase Three: Survey Development Study
The third phase involved combining findings from the scoping study and focus group
study to inform the survey development study. Knowledge gained from scoping study and
focus group study findings were significant for the identification of key concepts related to
CRC and screening that were relevant to SA immigrants (Creswell & Plano Clark, 2011).
Development was important because variables were limited or unknown (Creswell & Plano
Clark, 2011).
Rationale. To advance understanding of factors that influence CRC screening among
SA immigrants in Ontario, Canada, it was important to use findings from initial phases to
develop a survey that could be used to sample a larger population. DeVellis (2012)
emphasizes a conceptual understanding of measures in instrument development that is
exploratory in nature, thus the rationale for using this framework for this survey development
study. This process allowed the assembly of conceptually relevant measures to examine
beliefs and attitudes, and facilitators and barriers that influence CRC screening intention and
uptake among a diverse SA immigrant population.
Research aim and objectives. The overall aim of this study was to develop a cross
culturally translated and adapted colon cancer screening survey for average risk SA
immigrants 50-74 years of age in Ontario. The purpose of the survey is to describe beliefs,
attitudes, facilitators, and barriers that influence CRC screening intention and uptake among
SA immigrants to better understand them in order to inform interventions aimed at increasing
uptake of CRC screening in Ontario. As well, the survey may be used in future to examine
41
what factors predict CRC screening intention and uptake, and in turn, may also inform
targeted interventions for SA immigrants. Given that the survey includes theoretically
grounded measures to examine CRC screening, it may also be applicable or easily adaptable
in other western contexts with SA immigrant populations.
The first objective was to identify and define key concepts related to CRC screening
that were most relevant to SA immigrants, construct a conceptual model, conduct a literature
search for pre-existing candidate measures, and assemble items and measures within a
survey. The second objective was to cross culturally translate and adapt the English language
survey into the Urdu language. The third and final objective was to pre-test the survey using
cognitive interviews with SA immigrants in Hamilton, Ontario, and make revisions as
needed.
Methods. DeVellis framework (2012) was used to guide survey development. The
first steps involved the identification of concepts of interest derived from phase one and two
study findings, and to define concepts. Behavioural concepts from the HBM (Rosenstock et
al., 1988), and the TPB (Ajzen, 1991) were instrumental in assessing if empirically-based
definitions aligned with key defined concepts. A literature search for pre-existing candidate
measures related to each defined concept was undertaken. Critical appraisal was conducted to
assess for conceptual match to each of the key defined concept. Consultation with experts
using advisory group decision-making to select candidate measures that aligned closely to
key defined concepts was also completed, followed by expert committee review to add
content not covered by measures and modify items for simplicity and consistency. Cross-
cultural translation and adaptation of the survey into the Urdu language used rigorous
methods (Beaton, Bombardier, Guillemin, & Ferraz, 2000; Epstein, Osborne, Elsworth,
Beaton, & Guillemin, 2015) .The pre-testing of the final survey using cognitive interviews
with Urdu and English language speaking SA immigrants was conducted to assess
42
comprehension and determine if questions and responses were consistently measuring what
the researcher intended (Collins, 2003). Qualitative methods were used to analyze results of
cognitive interviews. This step was significant because it aligned with the CST principle of
engagement with participants to elicit their perspectives, and pre-testing with cognitive
interviews allowed the detection of issues and revisions before pilot testing.
The measures used in the survey will require testing for reliability and validity among
the SA immigrant population to address two issues: (1) the incorporated measures were
initially developed for a western population and tested in other diverse populations but not
among SA immigrants; and (2) the addition of questions to fill missing content and
modification of pre-existing items from select measures. Lastly, the relationships between
key concepts and behavioural outcomes in the conceptual model are not known, so they will
also require testing of these relationships in future research.
1.7 Implications for Practice, Policy and Research
This research will contribute to the empirical literature on cancer and CRC screening
with respect to SA immigrant communities in western countries by adding new knowledge
about beliefs and attitudes, and facilitators and barriers to uptake. More importantly, findings
from this thesis may inform the development of culturally sensitive community-based
interventions for SA populations that aim to minimize CRC screening health disparities and
increase cancer screening uptake.
Cancer Care Ontario and the Public Health Agency of Canada (PHAC) are key
organizations that may find value in this research given that they have funded projects to
reach under-screened and never-screened sub-groups of the population (PHAC, 2015; Spayne
et al., 2015). As well, this research would be of value to public health nurses, nurse
practitioners, relevant multi-cultural community-based organizations, and other allied health
professionals working with SA immigrant communities. Insights and knowledge gained from
43
this exploratory sequential mixed method study will be of value for undertaking future
research to advance understanding of factors that influence CRC screening intention and
uptake among SA immigrant populations in Ontario, Canada. The findings from this research
will be a starting point for embarking on a program of research that aims: (1) to advance
understanding of factors that influence CRC screening among SA populations through
surveying a larger population; and (2) to develop tailored interventions to increase CRC
screening rates within SA communities in Ontario, Canada. This study addresses the
identified need for developing and evaluating strategies that enhance CRC screening
knowledge, awareness and uptake among under-and never-screened, ethnically diverse sub-
groups of the population (Baron et al., 2008).
1. 8 Strengths and Limitations of the Exploratory Sequential Mixed Method Study
The strengths of the exploratory sequential mixed method design are the ease and
specific processes of the independent phases of the design. This approach was ideal for
conducting research that involved social and behavioural processes in relation to CRC
screening among SA immigrants. The initial exploration was important in this design as
qualitative findings from initial phases were essential to inform on key concepts to measure
in a survey, a product to be used in future research (Creswell, Fetters, & Ivankova, 2004).
Cognitive interviews were also important to pre-test the survey, to assess acceptability of
verbal probe methods used with the SA immigrant population sample, and to identify
problems and potential systematic error (Willis, 2005).
The limitations of using this mixed method design related to the processes of using
more than one method. Because of the different methods used, it was important that the
researcher had knowledge of specific research methods for the different phases, and to be
clear of the purpose of each phase in the exploratory sequential mixed method design
(Creswell & Plano Clark, 2011). In this study, the sequential phases were important because
44
each phase informed the next phase(s). As well, mixed method designs in general are time
consuming and expensive to conduct (Johnson & Ounwueguzie, 2004). For instance, the
focus group study and survey development study required time for immersion in the
community, and to hire and train multi-lingual SA research assistants. As well, survey
development involved multiple processes that were rigorous but also involved considerable
time to execute. Another challenge associated with time was the process of attaining
Research Ethics Board (REB) approval for the focus group and survey development studies.
To deal with this challenge, a tentative direction of the project plan was included in the initial
REB application with amendments provided after the focus group study was completed when
ready to conduct the survey development study (Creswell & Plano Clark, 2011).
45
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Chapter Two
Cancer Screening Behaviours among South Asian Immigrants in the UK,
US and Canada: A Scoping Study
This chapter presents the first phase of the exploratory sequential mixed method
study, the scoping study. In early 2015 (February 27), the manuscript was published in
Health and Social Care in the Community (doi: 10.1111/hsc.12208) as Early View. The
manuscript appears in this thesis with permission granted by John Wiley & Sons Limited on
September 9, 2015. The following copyright statement for the journal states: “The entire
contents of the Electronic Products, and each article and abstract and other material available
through Wiley Online Library are protected by copyright unless otherwise indicated on the
title page of the article” (http://onlinelibrary.wiley.com/termsAndConditions). The following
chapter is presented as it appears in the manuscript with style changes converted to an
American Psychological Association to adhere to the nursing science discipline.
2.1 Abstract
South Asian (SA) immigrants settled in the United Kingdom (UK) and North America
(United States [US] and Canada) have low screening rates for breast, cervical and colorectal
cancers. Incidence rates of these cancers increase among SA immigrants after migration,
becoming similar to rates in non-Asian native populations. However, there are disparities in
cancer screening, with low cancer screening uptake in this population. We conducted a
scoping study using Arksey & O‟Malley‟s (2005) framework to examine cancer screening
literature on SA immigrants residing in the UK, US, and Canada. Eight electronic databases,
key journals, and reference lists were searched for English language studies and reports. Of
1465 identified references, 70 studies from 1994 to November 2014 were included: 63% on
breast or cervical cancer screening or both; 10% examined colorectal cancer screening only;
16% explored health promotion/service provision; 8% studied breast, cervical and colorectal
cancer screening; and, 3% examined breast and colorectal cancer screening. A thematic
65
analysis uncovered four dominant themes: (a) beliefs and attitudes toward cancer and
screening included centrality of family, holistic health care, fatalism, screening as
unnecessary, and emotion-laden perceptions; (b) lack of knowledge of cancer and screening
related to not having heard about cancer and its causes or lack of awareness of screening, its
rationale and/or how to access services; (c) barriers to access included individual and
structural barriers; and (d) gender differences in screening uptake and their associated factors.
Findings offer insights that can be used to develop culturally sensitive interventions to
minimize barriers and increase cancer screening uptake in these communities, while
recognizing the diversity within the SA culture. Further research is required to address the
gap in colorectal cancer screening literature in order to more fully understand SA
immigrant‟s perspectives, as well as research to better understand gender specific factors that
influence screening uptake.
2.2 Introduction
Population-based cancer screening for breast, cervical, and colorectal cancer has the
potential to reduce mortality and morbidity if performed as per guideline recommendations in
the general average risk population (United States Preventive Services Task Force 2008,
2009, 2012). However, rates of uptake for breast, cervical or colorectal cancers among ethnic
minority populations in the United Kingdom (UK), United States (US), and Canada are sub-
optimal (Lee, Ju, Vang, & Lundquist, 2010a; Quan et al., 2006; Szczepura, Price, & Gumber,
2008). South Asian (SA) immigrants form a growing community in the UK, US and Canada
(Statistics Canada 2008; US Census Bureau 2010; UK Census 2011). SA immigrants also
represents a diverse community with ancestral origins largely from the Indian sub-continent
including India, Bangladesh, Pakistan, Sri Lanka and smaller numbers from the diaspora,
originating from countries such as South or East Africa and the Caribbean (Ballard, 2003;
Tran, Kaddatz, & Allard, 2005). The incidence rates of breast and colorectal cancers among
66
SA immigrants residing in the UK and North America are comparable to non-Asian born
populations (Hislop, Bajdick, Saroa, Yeole, & Barroetavena, 2007; Hossain, Sehbai,
Abrahan, & Abraham, 2008; Jain, Mills, & Parikh-Patel, 2005; Rastogi et al., 2008; Smith,
Botha, Benghiat, & Steward, 2003; Virk, Gill,Yoshida, Radley, & Salh, 2010). Yet,
disparities in cancer screening have been documented with SA immigrants having low rates
of breast, cervical, and colorectal cancer screening (Lee et al., 2010a; Lofters, Hwang,
Moineddin, & Glazier, 2010; Szczepura et al., 2008). Thus, SA immigrants are at risk for
avoidable morbidity and mortality from these cancers.
While prior reviews have examined cancer screening-related barriers among ethnic
minority populations in the UK, US and Canada (Alexandraki & Mooradian, 2010; Elkan et
al., 2006; Hanson, Montgomery, Bakker, & Conlon, 2009; Johnson, Mues, Mayne, &
Kiblawi, 2008; Sokal, 2010; Wu, Bancroft, & Guthrie, 2005), they have focused on studies in
one country, one or two population-based cancer screening modalities (i.e. breast, cervical),
or excluded SA immigrants. Barriers to cancer screening among SA immigrants include
individual and structural barriers. Individual barriers to cancer screening or access to health
services reflect issues not always under the control of the individual (Baron et al., 2008). The
individual barriers to screening encountered by SA immigrants include: lack of knowledge
and access, low self-perceived risk, loss of social networks, language barriers, and competing
priorities of work and family (Ahmad et al., 2004; Oelke & Vollman, 2007). Structural
barriers include health policy, socio-economic factors, health insurance coverage, and
systemic health service provision, such as usual source of care (family physician), screening
service hours of operation, local access to services, or transportation (Baron et al., 2008). SA
immigrants identified structural barriers to cancer screening such as lack of local access
(Thomas, Saleem, & Abraham, 2005) and lack of physician recommendation (Somanchi,
Juon, & Rimal, 2010).
67
To address health inequities related to low cancer screening among SA immigrants,
an understanding of the socio-cultural context including beliefs and attitudes, and facilitators
and barriers to cancer screening in these populations is required. For this purpose, a scoping
study utilizing Arksey and O‟Malley‟s (2005) framework was undertaken. This framework
provides a structured method to develop a comprehensive understanding of current
knowledge, and to identify knowledge gaps through the examination of diverse and
heterogeneous literature. In this scoping study, the research question was: What are the
cancer screening beliefs, attitudes, and behaviours of SA immigrants residing in the UK, US,
and Canada? The intended outcome was a synthesis of existing knowledge about barriers and
facilitators to cancer screening in these populations in order to inform current practice,
policy, and future research.
2.3 Methods
Arksey and O‟Malley‟s (2005) framework encompasses five stages: (a) research
question formulation; (b) a comprehensive literature search and development of relevancy
criteria; (c) identification of relevant studies; (d) charting of extracted data from included
studies and reports; and (e) summarizing and reporting of findings. This method is
advantageous as it incorporates not only a transparent and reproducible search strategy but
also enables an examination of a broad research question by the inclusion of a variety of
study designs and development of study selection criterion in an iterative manner. A
narrative review that employed thematic analysis was the approach used as a process to
produce a simplified synthesis of included studies or reports (Mays, Pope, & Popay, 2005).
The narrative review process aims to present findings as they are reported in the literature
and does not aim to transform data. This method is comprehensive, flexible, and an efficient
method because it allows different types of evidence to be used to identify main concepts
related to a specific research topic that has not undergone prior review. To synthesize
68
evidence, a thematic analysis of dominant recurring and important themes from the literature
was undertaken to address the research question (Levac, Colquhoun, & O‟Brien, 2010; Mays
et al., 2005). The narrative review method utilizing thematic analysis gives high importance
to the relevance of literature and does not attempt to assess the quality of studies.
For the purposes of this study, the concept of population-based cancer screening
included breast, cervical, and colorectal cancers. The health outcome of interest, cancer
screening behaviours, encompassed: beliefs and attitudes toward cancer and screening;
barriers and facilitators to cancer prevention; reasons for screening; and, cancer screening
uptake. The target population was South Asian immigrants defined as individuals who
originate from the southern part of Asia or who claim a cultural ancestry or origin from India,
Pakistan, Bangladesh, Sri Lanka, or Nepal, and may include ethnic backgrounds from diverse
ancestries, such as Hindu, Goan, Gujarati, Nepali, Sikh, Punjabi, Pakistani, or Tamil (Tran et
al., 2005).
A librarian was consulted for the literature review process and refinement of the
search strategy, and a primary reviewer became familiar with the literature. An
interdisciplinary team comprised of: a public health practitioner with oncology certification
and experience working with immigrant populations; a medical health professional and health
services researcher; a public health researcher with a focus on immigrant communities
including SAs‟; and, an occupational therapist and clinical epidemiologist with interest in
disease prevention and cross cultural adaptation of materials and measures. All members
were involved in decisions surrounding inclusion and exclusion criteria, and refinement of
themes.
A literature search was initially conducted June 2012 and updated November 2014.
English language studies and reports were searched using the following electronic databases:
Ovid MEDLINE [1946-October Week 5 2014], EMBASE [1980- 2014 Week 45],
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PsychoINFO [1806- November Week 1 2014], CINHAL, PubMed, the Cochrane Library
[Issue 11 of 12, November 2014], Scopus, and System for Information on Grey Literature in
Europe (SIGLE). Six key journal volumes and issues were searched electronically from
January 2005 to November 2014 inclusively: Asian Pacific Journal of Cancer Prevention;
Canadian Journal of Public Health; Cancer; Journal of Immigrant and Minority Health;
Journal of Medical Screening; and, Social Science and Medicine. The Web of Science was
also searched using relevant studies included in the scoping study because of the potential to
yield further citations (Ahmad, Cameron, & Stewart, 2005; Asanin & Wilson 2007; De Alba,
Ngo-Metzger, Sweningson, & Hubbell, 2005; Glenn, Chawla, Surani, & Bastani, 2009;
Pourat, Kagawa-Singer, Breen, & Sripipatana, 2010; Robb, Solarin, Power, Atkin, & Wardle,
2008; Szczepura et al., 2008; Taskila et al., 2009). Reference lists of included studies were
also searched, as well as key websites of evidence based reports, for example: Cancer Care
Ontario, Public Health Agency of Canada, Ontario Women's Health Evidence-Based Report
(POWER), the Council of Agencies Servicing SA [CASSA] in Ontario, and the UK Bowel
Screening Programme.
The main subject headings and key word search terms used were: “Asian”, “Asian
Continental Ancestry Group”, “Asian American or British Asian or Indian”, “Hindu”,
“Bangladesh”, “Sri-Lanka”, emigrants and immigrant”, “illegal immigrant”, “migrant”,
“refugee”, “cancer screening”, “mass screening”, “cancer prevention”, “early detection of
cancer”, and “secondary prevention or prevention”. The explode function was used for
applicable Medical Subject Headings, and truncation expanded the search for terms with
unique endings. The search terms were refined for different databases. No limits were placed
on years of publication to prevent restricting searches.
The combined searches resulted in the retrieval of a total of 1465 citations; Figure 1
presents the combined totals for the two searches. In keeping with the iterative nature of
70
Arksey and O‟Malley‟s (2005) framework, becoming familiar with retrieved literature
enabled a determination of study selection criteria. To determine study selection criteria,
retrieved studies were reviewed for any discrepancies related to terminology used to define
the population, or intervention. A method to eliminate studies included developing inclusion
and exclusion criteria based on the research question. In a scoping study, this is done post-
hoc in order to become familiar with the available literature. The aim of applying relevancy
criteria to studies was to ensure that selected studies for review focused on answering the
research question (Arksey & O‟Malley, 2005).
Inclusion and exclusion criteria incorporated type of study, target population, and type
of intervention. Studies and reports were included if they: (a) employed quantitative and
qualitative methods, were published in English between 1994 and 2014, and were accessible;
(b) included samples of SA immigrant men and women who resided in the UK, US, and
Canada; and (c) investigated factors related to breast, cervical and colorectal cancer screening
services. Studies were excluded if they reported on: breast, cervical and colorectal cancers
but did not include SA immigrants; discussed chronic diseases or health issues among non-
SA ethnic minorities; reported on incidence, mortality, risk factors of all three cancers;
centred on health care system providers perspectives or other unrelated issues; or aggregated
data under a broader category of “Asian” with no clear distinction of SA immigrants or sub-
groups. RefWorks (2.0) was used to organize and manage literature searches and retrieved
citations.
An additional step was to contact practitioners and preventive health care providers to
identify additional references, unpublished reports, or to gain insight into the topic area
(Arksey & O‟Malley, 2005). Informal contact was made with public health practitioners
working in the field, and key organizations such as Cancer Care Ontario for any additional
unpublished reports.
71
The primary reviewer independently applied inclusion/exclusion criteria to all abstract
citations during abstract review. If relevancy was difficult to ascertain from an abstract, the
full text article was retrieved. The primary reviewer read all potential full text papers. In the
case of ambiguity of a particular study or report, team members consulted and discussed
whether a paper met criteria for inclusion. A total of 70 studies and reports met inclusion
criteria (Figure 1).
Selected studies were reviewed, data was extracted and organized, and relevant
information was charted under the following headings: (a) author, year of publication, study
location, and topic area; (b) study design, and purpose; (c) study population and setting; (d)
methods; and (e) findings. A narrative approach was used to capture dominant and important
themes that emerged. Thematic analysis was used to focus attention on context and
commonalities across included studies and reports, which was guided by the original research
question (Mays et al., 2005).
72
Figure 1. Scoping Study Flow Diagram
Combined search results: OVID Medline, EMBASE, PsychINFO, CINHAL, PubMed,
Cochrane Library, Web of Science, Scopus, SIGLE, and electronic search of key journals and
reference lists
1465 Potentially relevant citations
identified
152 Total citations excluded
Duplicates (n=152)
1313 Potentially relevant abstracts
identified & screened by applying
inclusion and exclusion criteria
Total abstracts excluded (n=1147)
Breast, cervical and colorectal cancer but not
South Asian (n=407)
Chronic diseases or conditions among non-South
Asian ethnic minority groups (n=539)
South Asian immigrants with other chronic
diseases, health issues, or interventions (n= 132)
Incidence, mortality, risk factor, other health care
system providers perspectives, or unrelated issues
(n=69)
166 Full studies and reports retrieved
and reviewed using inclusion and
exclusion criteria
70 studies and reports included in the
study
Total papers excluded (n=96) Aggregate data under broader category of
“Asian” with no sub-groups analyses (n=70)
Incidence, mortality, risk factor or other health
care system providers perspectives or unrelated
issues (n=26)
73
2.4 Findings
The 70 included articles covered twenty years from 1994 to 2014. Studies and reports
were primarily descriptive or exploratory, and focused mainly on breast and cervical cancer
screening among SA immigrant women (Appendix 1A, 1B, 1C). A numerical summary was
created to provide an overview of the distribution of studies by geographical location, type of
cancer screening, research methods, and main topic areas (see Table 1 below). In the
following paragraphs, the descriptive findings will be presented and includes study design,
samples, the type of screening, and country of origin. Thereafter, the thematic analysis of
findings will be discussed including the four main themes emerging across all included
studies.
The majority of studies and reports (66%, n=46) were cross-sectional, used surveys,
examined self-report screening rates, barriers, and factors associated with cancer screening
participation. Cross sectional studies that included different ethno-cultural groups often had
small samples of SA immigrants or SA immigrant subgroups. Almost one third (29%, n=20)
of studies used qualitative designs with data collection methods of focus groups, interviews,
and concept mapping. The remaining four studies (5%) used mixed methods or pre/post
intervention design. The majority of qualitative studies (60%, n=12/20) examined female
cancer screening or beliefs and barriers to health care services including cancer screening. Of
the remaining qualitative studies: one interviewed breast cancer patients and their spouses
(Karbani et al., 2011), one did not clarify male and female participant numbers (Randhawa &
Owens, 2004), one had almost equivalent male and female samples (Lee et al., 2010b), and
five had greater female than male participants (Asanin & Wilson, 2007; Austin et al., 2009;
Gesink et al., 2014; Lobb, Pinto, & Lofters, 2013; Thomas et al., 2005). Two mixed methods
studies also used qualitative design with one including female samples only (Meana,
Bunston, George, Wells, & Rosser, 2001b) and the other conducted with both female and
74
male samples (Szczepura et al., 2003). Fifteen (21%) studies included colorectal cancer
screening and were undertaken in the UK, US, and Canada; of these, 14 included males and
females. In colorectal cancer screening studies, findings varied by test procedures
investigated. Four studies from the UK and Canada qualitatively examined SA immigrant‟s
perspectives on beliefs, barriers, and reasons for colorectal cancer screening (Austin et al.,
2009; Gesink et al., 2014; Lobb et al., 2013; Szczepura et al., 2003).
Table 1 Scoping Study: Numerical Summary of Research Studies
Geography UK
US CANADA
Screening or Services
Colorectal Screening 4 3 0
Breast Screening 5 10 7
Cervical Screening 1 3 7
Breast & Cervical Screening 4 5 2
Breast, Cervical, & Colorectal Screening 1 3 2
Breast & Colorectal Screening 2 0 0
Health Promotion/Services Provision 1 3 7
Research Methods
Quantitative: Cross sectional Surveys 10 25 11
Qualitative: Focus Group/One-on-one
Interviews
6 2 12
Other: Mixed Methods/ Intervention study 2 0 2
General Topic Area
Beliefs and Attitudes (Appendix 1A)
Barriers/Predictors to Utilization
(Appendix 1B)
11 9 16
Knowledge & Uptake (Appendix 1C) 7 18 9
TOTAL Studies 18 27 25
2.4.1 Thematic Analysis
Through charting and thematic analysis, four dominant recurring and relevant themes
were identified: (a) beliefs and attitudes toward cancer and screening including sub-themes of
family as central, holistic health care, fatalism, screening not necessary, and emotion-laden
perceptions; (b) lack of knowledge of cancer and screening related to not having heard about
cancer and its causes or lack of awareness of screening, its rationale and how to access
services; (c) barriers to access centred on individual and structural barriers to cancer
prevention or screening services; and (d) gender differences in screening was comprised of
75
rates and factors associated with screening uptake. See Appendix 2 for themes and sub-
themes and information on gender distribution of studies.
2.4.2 Theme 1: Beliefs and attitudes
The first two sub-themes emerged as important contributors to SA immigrant‟s beliefs
of cancer, and cancer screening uptake providing insights into the socio-cultural context and
use of health services including screening; whereas, the subsequent three sub-themes revealed
the reasons that SA immigrants‟ did not participate in cancer screening.
Family as central. Common beliefs included a strong sense of family cohesiveness
demonstrating honour, respect and dependence (Bottorff et al., 1998; Bottorff, Johnson,
Venables, Grewal, & Popa, 2001b; Choudhry, 1998; Oelke & Vollman, 2007). Respecting
and honouring family was maintained by not discussing sensitive female health-related issues
such as cervical or breast cancers within the family (Banning & Hafeez, 2010; Bottorff et al.,
2001b) or with others in the community (Bottorff et al., 1998, 2001b; Choudhry, 1998;
Meana, Bunston, George, Wells, & Rosser, 2001a; Oelke & Vollman, 2007). The inability to
discuss relevant health issues with others (Bottorff et al., 1998; Meana et al., 2001a) limited
conversations that may have served to increase awareness of recommended preventive health
practices (Bottorff et al., 2001b; Oelke & Vollman, 2007). Maintaining privacy was another
important concern, especially when accessing health services in smaller communities (Oelke
& Vollman, 2007).
In contrast, families could play an important role in validating concerns, and
providing advice and recommendations (Oelke & Vollman, 2007). The head of the household
or a close friend sometimes provided advice on health issues or consulted on whether it was
necessary to seek out physician advice (Ahmad et al., 2004; Banning & Hafeez, 2010;
Bottorff et al., 1998; Bottorff et al., 2001b; Oelke & Vollman, 2007). Family support to
access health care was especially important when women did not speak English (Ahmad,
76
Mahmood, Pietkiewicz, McDonald, & Ginsburg, 2011; Choudhry, 1998). A lack of informal
support networks or extended family increased a SA immigrant woman‟s dependence on
family members when accessing health services (Choudhry, 1998; Thomas et al., 2005). For
some SA Muslim women, family played a role in assuring cultural values were maintained
with respect to western health care practices, for example, the recommendation of a Pap test
for an unmarried woman went against Muslim beliefs and values (Matin & LeBaron, 2004).
Alternatively, some SA immigrant‟s immediate family and relatives encouraged them to have
screening (Karbani et al., 2011; Oelke & Vollman, 2007).
Some SA immigrant women lived in patriarchal families where their primary role was
to meet family obligations including caregiving, homemaking and/or contributing by working
outside the home (Bottorff et al., 1998; Bottorff et al., 2001b; Oelke & Vollman, 2007).
Family needs could supersede personal needs (Oelke & Vollman, 2007). In other situations,
SA immigrant women believed they were not to burden their family; and so, good health
maintenance was required to fulfil their obligations (Bottorff et al., 2001b; Choudhry, 1998).
Holistic health care. A holistic approach to health was believed to be conducive to
maintaining health among both SA immigrant men and women (Asanin & Wilson, 2007;
Bottorff et al., 1998; Choudhry, 1998). Some SA immigrant women reported the belief that
health maintenance involved a balance between body, mind, and spirit (Black & Zsoldos,
2003; Bottorff et al., 2001b; Choudhry, 1998). Importance was placed on diet, physical
activity, reduced levels of stress, and relaxation (Black & Zsoldos, 2003; Bottorff et al., 1998;
Choudhry, 1998). Among SA immigrant women of higher socio-economic status, greater
motivation to take care of one‟s health and confidence with performing breast self-exam were
associated with greater perceived benefits of mammography (Poonawalla, Goyal, Mehrotra,
Allicock, & Balasubramanian, 2014).
77
In other situations, SA immigrant‟s health care encounters with physicians were not
perceived to be holistic; rather they were perceived to be rushed, impersonal and reserved,
creating challenges and conflicts due to differing views of health (Asanin & Wilson, 2007;
Lobb et al., 2013). Additionally, SA immigrants believed that the health system was not
respectful nor did it provide accommodation for the SA culture and traditional views of
health, which created “ethno-cultural discordance” (Lobb et al., 2013). A physician‟s lack of
respect and sensitivity toward Muslim women‟s values of modesty and virginity were issues
that did not align with cultural views among some SA immigrant women (Matin & LeBaron,
2004). SA immigrants also reported lower satisfaction with the routine health exam (Asanin
& Wilson, 2007; Bierman et al., 2009/2010). The physician‟s role in promoting cancer
screening was believed to be important for access to cancer screening tests (Lobb et al.,
2013). As well, level of trust with doctors or other health care workers was an enabling
predictor for fecal occult blood test (FOBT) uptake among SA immigrants (Menon, Szalacha,
Prabhughate, & Kue, 2014). The discordance between what SA immigrants believed and
what occurred in western health systems pose challenges in promoting health and cancer
screening uptake.
Fatalism. Karma and destiny were directly linked to fatalistic beliefs; whereby,
cancer was one‟s destiny determined by God (Black & Zsoldos, 2003; Choudhry, 1998;
Meana et al., 2001a; Szczepura et al., 2003). Some SA immigrants believed that cancer was
“incurable” (Bottorff et al., 1998; Randhawa & Owens, 2004) and not a disease that could be
prevented or controlled (Black & Zsoldos, 2003; Meana et al., 2001a). Beliefs associated
with developing cancer included: negative lifestyle behaviours such as promiscuity and
physical inactivity; retribution for past sins; and, a form of punishment (Black & Zsoldos,
2003; Meana et al., 2001a; Pfeffer, 2004). Cancer was not to be discussed with family,
relatives, or the community (Bottorff et al., 1998; Karbani et al., 2011; Meana et al., 2001a;
78
Thomas et al., 2005), and for some, avoiding talking about cancer was a way to prevent
affliction with the disease (Meana et al., 2001a; Thomas et al., 2005). Additionally, the
stigma associated with a cancer diagnosis had the potential to damage a family‟s reputation
(Karbani et al., 2011). In particular, some male SA immigrants avoided screening because of
the stigma or taboo associated with seeing a doctor to discuss cancer screening (Gesink et al.,
2014).
Screening not necessary. Some SA immigrants had low self-perceived risk of
cancer. This was associated with SA immigrant‟s experiences in their country of origin and
the belief that western-born populations were at higher risk for breast, cervical or colorectal
cancers. For some SA immigrants, breast cancer was seen as a “white woman‟s disease”
(Bottorff et al., 1998) because they did not breast feed their children (Pfeffer, 2004);
screening was for younger women (Thomas et al., 2005); or cancer was not a risk for women
of their culture (Poonawalla et al., 2014; Rudat, 1994; Wu, West, Chen, & Hergert, 2006).
Others believed that colorectal cancer was a predominantly male disease (Austin et al., 2009)
or not a risk for them (Menon et al., 2014). A lack of symptoms was another reason for
believing that screening was not required (Austin et al., 2009; Bottorff et al., 1998; Oelke &
Vollman, 2007; Robb et al., 2008; Szczepura et al., 2003), as was the perception that
screening was not important, or a priority (Amankwah, Ngwakongnwi, & Quan, 2009; Lobb
et al., 2013; Rudat, 1994; Sadler et al., 2001). For some, these beliefs may have stemmed
from the lack of exposure to preventive health care in countries of origin (Oelke & Vollman,
2007).
Emotion-laden perceptions. A number of emotional states were cited as reasons for
not engaging in cancer screening. Fear, pain, and worry were common findings (Ahmad et
al., 2011; Ahmad & Stewart, 2004; Austin et al., 2009; Black & Zsoldos, 2003; Bottorff et
al., 1998, 2001a; Forbes et al., 2011; Lobb et al., 2013; Meana et al., 2001a,b; Pfeffer, 2004;
79
Rudat, 1994; Szczepura et al., 2003), as was shame and embarrassment (Austin et al., 2009;
Banning & Hafeez, 2010; Forbes et al., 2011; Lobb et al., 2013; Meana et al. 2001a; Meana
et al. 2001b; Pfeffer, 2004; Robb et al., 2008; Rudat, 1994; Sadler et al., 2001; Szczepura et
al., 2003). Fear was associated with discussing cancer with the physician, finding cancer,
going for screening alone, and discomfort with test procedures (Forbes et al., 2011; Lobb et
al. 2013; Meana et al. 2001b). A higher self-perceived susceptibility to cancer was also
associated with enhanced fear (Poonawalla et al., 2014). Modesty, shyness, nervousness, and
physical discomfort all influenced decision-making about breast and cervical cancer
screening (Banning & Hafeez, 2010; Black & Zsoldos, 2003; Bottorff, Balneaves, Sent,
Grewal, & Browne, 2001a; Bottorff et al., 1998; Choudhry et al., 1998; Meana et al., 2001b;
Oelke & Vollman, 2007; Pfeffer, 2004; Wu et al., 2006). Some SA immigrants lacked
confidence in discussing symptoms with the physician (Forbes et al., 2011), or performing
screening (Austin et al., 2009; Meana et al., 2001b; Thomas et al., 2005). SA immigrant men
perceived colorectal cancer screening to be “unpleasant” and “unhygienic” (Taskila et al.,
2009), while other SA immigrants reported it was “disgusting” (Szczepura et al., 2003). A
reason for having colorectal cancer screening among both genders was “peace of mind” or
early detection before disease progression (Austin et al., 2009; Szczepura et al., 2003; Robb
et al., 2008).
2.4.3 Theme 2: Lack of knowledge
A lack of knowledge of cancer and screening was a common reason for low
participation. Gaps in knowledge and awareness of the types of cancer, causes, individual
risks, and implications of the disease were frequently cited (Austin et al., 2009; Lobb et al.,
2013; Rashidi & Rajaram, 2000; Robb et al., 2008; Szczepura et al., 2003). Likewise, there
was a lack of knowledge of symptoms (Forbes et al., 2011), screening or the rationale
(Ahmad et al., 2005; Banning & Hafeez, 2010; Brotto, Chou, Singhm, & Woo, 2008;
80
Choudhry et al., 1998; Gupta, Kumar, & Stewart, 2002; Lobb et al., 2013; Meana et al.,
2001b; Oelke & Vollman, 2007; Rashidi & Rajaram, 2000; Robb et al., 2010; Rudat, 1994;
Szczepura et al., 2003), and benefits of screening (Bottorff et al., 2001a; Meana et al.,
2001b). The screening procedures themselves posed challenges as some SA immigrants
reported not knowing how to perform tests, whom to ask about screening, or lacked
awareness of screening programmes and locations in their community (Ahmad & Stewart,
2004; Banning & Hafeez, 2010; Bottorff et al., 1998; Forbes et al., 2011; Karbani et al.,
2011; Lobb et al., 2013; Robb et al., 2010; Wu et al., 2006; Wu & Ronis, 2009). A lack of
knowledge of health information, services and insurance processes (Ahmad et al., 2004;
Gesink et al., 2014) and low priority placed on screening were also identified (Lobb et al.,
2013).
2.4.4 Theme 3: Barriers to access
Both individual and structural factors create barriers to accessing cancer screening.
Individual barriers. In addition to emotion-laden perceptions of screening presented
earlier, language was a significant barrier to cancer screening access among non-English
speaking SA immigrants (Ahmad et al., 2004; Asanin & Wilson, 2007; Austin et al., 2009;
Bottorff et al., 1998; Karbani et al., 2011; Kernohan, 1996; Lee et al., 2010b; Matin &
LeBaron, 2004; Oelke & Vollman, 2007; Sadler et al., 2001; Szczepura et al., 2003; Thomas
et al., 2005; Wu & Ronis, 2009). Low literacy levels were particularly an issue for SA
immigrant women (Kernohan, 1996; Sadler et al. 2001; Szczepura et al., 2008), or both
genders (Gesink et al., 2014; Lobb et al., 2013). Additionally, a loss of social support upon
immigration was another barrier (Ahmad et al., 2004; Szczepura et al., 2003), which links to
dependence on family for advice, support, and language interpretation to access health and
screening services.
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A lack of time and financial concerns were common individual barriers for some SA
immigrant women. These findings related to competing demands of family, children, work,
or household chores (Ahmad et al., 2004; Kernohan, 1996; Sadler et al., 2001), as well as
costs associated with taking unpaid time off work, securing childcare, or transportation (Lobb
et al., 2013; Meana et al., 2001b). Transportation barriers identified were challenges
navigating the transit system, mobility issues, and dependence on family for rides to
screening (Ahmad et al., 2011; Asanin & Wilson, 2007; Lee et al., 2010b; Meana et al.,
2001b).
Structural barriers. The structural barriers to cancer screening access included
socio-cultural barriers such as the gender or culture of family physician, and system barriers
such as lack of a physician recommendation. Some SA immigrant women were fearful of
having a male physician for a routine physical exam (Bottorff et al., 2001a; Oelke & Volman,
2007; Wu et al., 2006) or described difficulties communicating with a male physician
(Karbani et al., 2011); while others stated that it was unacceptable to be examined by a male
physician (Asanin & Wilson, 2007; Black & Zsoldos, 2003). The preference for a female
health care provider with or without the same cultural background were common attitudes
among SA immigrants (Asanin & Wilson, 2007; Black & Zsoldos, 2003; Bottorff et al.,
2001a; Lee et al., 2010b; Oelke & Volman, 2007; Meana et al., 2001a; Pfeffer, 2004; Thomas
et al., 2005). A lack of female primary care providers as well as organizational structures to
facilitate access such as personal reminders were also reported barriers to cancer screening
tests (Lobb et al., 2013).
Health education programmes that were not culturally sensitive, used inconsistent
messages and lacked attention to appropriate level of health literacy and credible
dissemination channels (i.e. places of worship) were also cited barriers to cancer screening
(Lobb et al., 2013). While having a physician from the same culture or language was a
82
preference for some SA immigrant women and men (Bottorff et al., 1998; Lee et al., 2010b,
Lobb et al., 2013; Oelke & Vollman, 2007), and may facilitate screening, a physician from
the same culture sometimes had the opposite effect because physicians did not recommend
screening out of respect for modesty and comfort (Bottorff et al., 2001a; Somanchi et al.,
2010).
The lack of a doctor recommendation for screening was a common barrier identified
among SA immigrant females (Bottorff et al., 2001a; Rudat, 1994; Somanchi et al., 2010).
Having a physician recommendation was associated with increased likelihood of having
breast or cervical cancer screening (Boxwala, Bridgemohan, Griffith, & Soliman, 2010;
Gupta et al., 2002; Somanchi et al., 2010). Other barriers included a lack of local access to
screening services (Asanin & Wilson, 2007; Thomas et al., 2005) and a lack of health
insurance among SA immigrants residing in the US (De Alba et al., 2005; Glenn et al., 2009;
Gomez, Tan, Keegan, & Clarke, 2007; Islam, Kwon, Senie, & Kathuria, 2006; Lee et al.,
2010b; Mehorta, Gaur, & Petrova, 2012; Misra, Menon, Vadaparampil, & Belue, 2011;
Pourat et al., 2010; Somanchi et al., 2010; Wong et al., 2005).
2.4.5 Theme 4: Gender differences
Gender influenced screening uptake. SA immigrant women in the UK, US, and
Canada reported lower screening rates for breast or cervical cancer screening (Ahmad &
Stewart, 2004; Boxwala et al., 2010; Gupta et al., 2002; Hasnain, Menon, Ferrans, Szalacha,
2014; Islam et al., 2006; Kernohan, 1996; Mehrotra et al., 2012; Menon, Szalacha, &
Prabhughate, 2012; Rashidi & Rajaram, 2000) and these were also low when compared to
non-Asian born populations (Amankwah et al., 2009; Bansal, Bhopal, Steiner, & Brewster,
2012; Brotto et al., 2008; Chaudhry, Fink, Gelberg, & Brook, 2003; Kagawa-Singer et al.,
2007; Lofters et al., 2010; McDonald & Kennedy, 2007; Quan et al., 2006; Rudat, 1994;
Sutton, Storer, & Rowe, 2001; Webb, Richardson, Esmail, & Pickles, 2004; Woltman &
83
Newbold, 2007). In some studies, specific screening rates were lower among SA immigrants
compared to other ethno-cultural populations in the US (Bansal et al., 2012; De Alba et al.,
2005; Gomez et al., 2007; Lee et al. 2010a; Patel, Rajpathak, & Karasz, 2012; Pourat et al.,
2010), and Canada (Amankwah et al., 2009; Brotto et al., 2008; Lofters et al., 2010).
For colorectal cancer screening, SA immigrant men in the US had higher screening
rates or odds of screening compared to SA immigrant women (Glenn et al., 2009; Misra et
al., 2011). Low rates of breast and colorectal cancer screening were common among SA
immigrants overall in the UK; however, Muslim SA immigrant women had the lowest rates
compared to SA immigrant men and non-Asian British born women (Price, Szczepura,
Gumber, & Patnick, 2010; Szczepura et al., 2008).
Factors associated with cancer screening included the length of residence in the new
host country, having a usual source of care, and level of education attainment. SA immigrant
women settled for more years in the new host country had greater uptake of breast or cervical
cancer screening (Ahmad & Stewart, 2004; Amankwah et al., 2009; Boxwala et al., 2010;
Chaudhry et al., 2003; Choudhry, Srivastava, & Fitch, 1998; Glenn et al., 2009; Lofters et al.,
2010; McDonald & Kennedy, 2007; Meana et al., 2001b; Menon et al., 2012; Misra et al.,
2011; Pourat et al., 2010; Somanchi et al., 2010; Surood & Lai, 2010; Woltman & Newbold,
2007; Wu & Ronis, 2009). Greater acculturation or language acculturation within the host
country was associated with information seeking behaviours, mammography or FOBT
uptake, and clinical breast exam among SA immigrants (Marfani, Rimal, & Hee-Soon, 2013;
Menon et al., 2014). In one US study, SA immigrants eligible for breast, cervical or
colorectal cancer screening were up-to-date with screening (50-79%); the sample was
comprised of two-thirds male, had higher education and insurance coverage, and were
English speaking (Bharmal & Chaudhry, 2012).
84
A usual source of health care provision was also associated with increased cancer
screening rates among SA immigrants (Amankwah et al., 2009; Bharmal & Chaudhry, 2012;
Chaudhry et al., 2003; De Alba et al., 2005; Islam et al., 2006; Kagawa-Singer et al., 2007;
Lofters et al., 2010; Pourat et al., 2010), as was higher income and higher education level
(Amankwah et al., 2009; Chaudry et al., 2003; Glenn et al., 2009; Gupta et al., 2002; Islam et
al., 2006; Meana et al., 2001b; Misra et al., 2011). In contrast, more recent SA immigrant
men and women tend to have lower cancer screening rates (Boxwala et al., 2010; McDonald
& Kennedy, 2007; Wong, Gildengorin, Nguyen, & Mock, 2005; Wu & Ronis, 2009).
2.5 Discussion
To our knowledge, this scoping study is the first to provide a comprehensive review
of cancer screening for breast, cervical and colorectal cancers among SA immigrants in the
UK, US, and Canada. Four overarching themes emerged from the thematic analysis: (1)
beliefs and attitudes toward cancer and screening; (2) lack of knowledge of cancer and
screening; (3) barriers to access; and (4) gender differences in screening uptake and their
associated factors. The findings can inform practice and research aimed at reducing identified
disparities in cancer screening. While approximately two thirds of studies focused on female
specific cancers with SA immigrant women, findings provide valuable insights of factors that
influence screening decisions among women and men taking into consideration the
heterogeneity of SA immigrant populations.
Two other reviews (Elkan et al., 2006; Sokal, 2010) examined cancer screening
among SA immigrants; however, both included only studies undertaken in the UK. Sokal‟s
(2010) study focused primarily on breast and cervical cancer screening literature among SA
immigrant women residing in Britain. While several key findings were similar to themes
identified in this review such as low self-perceived risk, language barrier and preference for
female health care provider, Sokal (2010) included a small pool of studies, did not address
85
colorectal cancer screening, and lacked a gender perspective. The other critical review (Elkan
et al., 2006) examined UK literature undertaken with ethnic minority groups and the use of
cancer services including screening, and had some findings similar to our study such as fear
and fatalism, and lack of knowledge of screening. However, this study was limited due to its
broad focus on cancer services, lack of data on barriers and facilitators to screening, and
exclusion of colorectal cancer screening (Elkan et al., 2006). Finally, an integrative review
(Wu et al., 2005) examined factors that influenced uptake of breast cancer screening among
four Asian immigrant groups living in the US. However, this review was limited in reporting
on Asian Indian women‟s perspectives from the US as well as socio-cultural factors related to
screening.
Evidence from dominant themes identified in this study can be used in the
development of culturally sensitive interventions to promote cancer screening in SA
immigrant communities. First, the collectivist nature of the SA culture was a dominant sub-
theme from studies in the UK, US, and Canada. Thus, consideration of family in the
development of community-based strategies that enhance knowledge and awareness of cancer
and population-based screening programmes to promote increased uptake may be of benefit.
Including family may help address barriers associated with low English language proficiency
and facilitate encouragement, accompaniment or provision of transportation.
Second, the reviewed literature provided insights into how health promotion messages
may be framed within a more holistic manner. Although this sub-theme was identified only in
North American studies, it provides an initial conceptualization for developing health
messages to be inclusive of SA immigrant‟s cultural beliefs. Health promotion focused on
primary prevention strategies such as healthy diet and physical activity is integral to the
prevention of cancer (World Cancer Research Fund, 2009). Messages to enhance knowledge
and awareness that encompass both instructions on the screening test to be performed, and
86
the knowledge surrounding evidence-based primary prevention messaging associated with
the specific type of cancer and risk factors may be more effective. Promoting screening to SA
immigrants will also require respect and acknowledgement of traditional cultural values,
beliefs, and views of health.
The primary care provider should be integral in promoting messages through
formalized health care access via the routine health exam. Consistency and alignment of
health promotion messages and efforts of public health and primary care could lead to
increased uptake of cancer screening. Public health and primary care collaboration, a current
focus of attention in reducing health disparities among ethnic and minority populations
(Institute of Medicine, 2012) has the potential to improve relationships and satisfaction with
family physician care.
Third, lack of knowledge of breast, cervical, or colorectal cancers and the impact of
early detection on health outcomes was a dominant theme across all countries, highlighting
the need to incorporate this information when creating culturally sensitive messaging. This
information might also address identified fatalistic beliefs. As well, promoting access to
cancer screening tests will require an understanding of how to access the health care system
for preventive health exams.
Fourth, raising awareness that the risk of common cancers become similar to those of
the host country of settlement over time might also increase uptake of screening services
(Hislop et al., 2007). A self-perceived risk of cancer often reflects knowledge of the
prevalence of common diseases in one‟s native country. This would also clarify that
screening takes place in the absence of symptoms and could also mitigate the perception that
screening is not needed if one is healthy. That is, cancer screening could be promoted as a
method to maintain health.
87
Finally, the planning of health promotion and awareness strategies to increase uptake
of cancer screening should include members of local SA immigrants in the community of
interest in the development of locally driven initiatives to address their unique beliefs systems
and needs. Reducing inequities in screening involves consideration and modifications to
current health education programming and the improvement of culturally appropriate
messaging to address health literacy and access (Lobb et al., 2013). The use of community
based media dissemination through ethnic papers or TV in SA immigrant‟s language was a
method to overcome language barriers among SA immigrants in several reviewed studies
(Ahmad et al., 2004; Austin et al., 2009). Discussion circles or educational seminars held in
community settings such as recreation centres or temples were recommendations proposed by
SA immigrants as a means to increase uptake in a number of included studies (Ahmad et al.,
2004; Austin et al., 2009). Additionally, the primary care physician was viewed as important
to facilitating access to information on healthy lifestyle behaviours, prevention, and
recommending cancer screening through the use of referral letters or in person dialogues
(Ahmad et al., 2004; Austin et al., 2009; Lobb et al., 2013). Translation and interpretation
services are a strategy to facilitate discussions among physicians and their SA immigrant
clients.
This study underscores the cultural and settlement heterogeneity of SA immigrants
including their unique historical, religious and political histories, migration patterns, socio-
economic status, and contextual differences among countries of settlement. For example,
structural barriers of lack of local access and a physician recommendation were specific to
the US and Canada. The structural organization of where health care services are situated in
North America results in access barriers including transportation issues. In North America,
there is also reliance on primary care physicians to promote population-based screening for
breast, cervical, and colorectal cancers. In contrast, the UK‟s population based screening
88
programmes have been promoted more widely, and have been in existence for longer
incorporating quality indicators and focused attention on recruitment strategies at all levels
including primary care. Moreover, lack of insurance coverage was specific to the US only.
Consequently, to increase cancer screening, context specific strategies will be required based
on available cancer prevention programmes, health services organization and access in each
country, along with specific community characteristics.
The initial intent of this study was to examine factors that influenced uptake and
access to colorectal cancer screening among SA immigrants; however, due to low citations
returned, the research question was broadened to include studies on access to all population-
based cancer screening. Nevertheless, this study identified a scholarly gap around colorectal
cancer screening among SA immigrants. Thus, it is unclear whether factors that influence
uptake in SA immigrant women for female cancer screening are similar for colorectal cancer
screening. Future research may include an examination of colorectal cancer screening
behaviours among SA immigrants including barriers and facilitators to all colorectal cancer
screening modalities. The unique difference between colorectal cancer screening tests
includes the ability to understand directions for completing a home test using the FOBT kit or
home preparation for a flexible sigmoidoscopy or colonoscopy (Rakowski & Breslau, 2004).
Gender differences in colorectal cancer screening preferences among SA immigrants also
presents an opportunity for further research.
Additional research may also explore if the social influence of family mediates
intention or uptake of cancer screening in SA immigrants. While the preference for holistic
approach to health was specific to North American studies among mostly female SA
immigrants, future research could examine if this belief is representative of SA immigrant
men and women in other settings. Furthermore, gender-specific factors associated with
89
screening uptake could be expanded upon to elucidate further gender differences, so that
promotion efforts may be gender sensitive.
A number of limitations are noted. Despite a structured and comprehensive strategy to
identify included studies and reports based on inclusion/exclusion criteria, some relevant
studies may have been missed. In the process of summarizing key themes, the subjective
position of the primary reviewer of full text articles may have inadvertently introduced bias in
decision-making. However, a team-based approach contributed to the study selection
determination throughout each step, and a consistent approach was used to chart findings of
included studies. As well, Arskey and O‟Malley‟s (2005) framework made the process
transparent minimizing this bias. The included studies/reports in this scoping study
encompassed a diverse sample of SA immigrants, and in some studies distinct sub-groups
were not always identified. Therefore, it is important to take into consideration the
heterogeneity of the SA immigrant populations residing in the UK, US, and Canada as they
hold multiple beliefs systems, different historical and political histories, varying socio-
economic status, and unique environmental contexts of settlement country.
2.6 Conclusion
This scoping study makes a new contribution by synthesizing and thematically
analysing current knowledge about factors influencing cancer screening decisions among SA
immigrants. Findings have illuminated important socio-cultural beliefs of family, cancer,
self-perceived risks of common cancers in host countries, holistic approaches to health, and
attitudes toward the sensitive nature of engaging in screening procedures. Identified barriers
and associated factors were also of relevance to gain perspective on ways to minimize
barriers and improve screening uptake among SA immigrants. Locally driven strategies that
incorporate SA immigrant‟s socio-cultural beliefs and values of family and a holistic
approach to health, both have the potential to increase screening for breast, cervical, and
90
colorectal cancers among this heterogeneous population. Additionally, an examination of the
specific needs of a SA immigrant community will be necessary so that promotion strategies
are geared toward minimizing specific local barriers to access and screening. While the
literature on cancer screening in this population is growing, there is limited evidence about
colorectal cancer screening and gender-specific factors that influence cancer screening
uptake. Further research can address this gap and enhance the current body of literature on
health inequities.
91
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Appendix 1A. Beliefs and Attitudes toward Cancer Screening in South Asian Immigrants (n=21)
Author (s), year,
location, & topic
Study design & purpose Study population & setting Methods Findings
Asanin & Wilson 2007
Toronto, Canada
Health Services Access
Qualitative: Grounded Theory
Explore immigrants‟
perspectives on determinants of
health and access barriers
53 immigrants
Females,79.3% and Males,
20.7%; Pakistan, 20.8%;
India, 15.1% (also China,
Romania, and other)
Purposive sampling:
Neighbourhood Health Centre
Focus groups (6)
Geographic accessibility to care
Economic accessibility
Socio-cultural accessibility
Austin et al., 2009
London, UK
Colorectal Cancer Screening
Qualitative: Exploratory
Examine beliefs and
barriers toward colorectal
cancer screening and
strategies to increase
flexible sigmoidoscopy
53 participants
Females, n=33; Males, n=20
Gujarati Indian, n=18 and
Pakistani, n=14 (Also,
African-Caribbean, White
British)
Purposive sampling:
Community
groups
Focus groups (9)
Perceived severity, susceptibility , benefits and
barriers to screening
Psychosocial barriers
Lack of symptoms
Culturally influenced barriers and Gender
Banning & Hafeez, 2010
Lahore, Pakistan, and London,
England
Breast Cancer Screening
Qualitative: Descriptive
Examine Pakistani Muslim
women breast health
awareness and cultural
correlates in two countries
44 Pakistani Muslim women:
Lahore (n=24) and London
(n=20)
Purposive sampling: Banks,
financial institution and cancer
hospitals
Focus groups (6)
Knowledge and factors associated with breast
cancer
Image of breast cancer
Knowledge of breast cancer screening
Black & Zsoldos, 2003
Hamilton, Canada
Breast and Cervical Cancer
Screening
Qualitative: Descriptive
Examine knowledge and beliefs
related to cancer and screening
among immigrant women
46 Immigrant women:
India, n=8 and Pakistan, n=13
(also, Chinese, and
Vietnamese)
Purposive sampling:
Community groups, agencies,
and cultural centers
Focus groups(4)
Indian and Pakistani women Only:
Beliefs, experiences and practices
Knowledge and information sources
Accessibility and interventions
Bottorff et al., 1998
Vancouver, Canada
Breast Health Practices
Qualitative: Critical
ethnography
Examine South Asian women‟s
beliefs, attitudes, and values
related to breast health practices
50 South Asian immigrant
women: Sikh (n=25); Hindu
(n=9); Muslim (n=14);
Christian women (n=2)
Convenience and networking
sampling: Interviews; second
interviews with 12 women;
new focus groups (30)
Woman’s calling
Cancer beliefs
Taking care of breasts: Holistic practices
Accessing services: Lack knowledge
Bottorff et al., 2001a
Vancouver, Canada
Cervical Cancer Screening
Qualitative: Case study
Explore successes and
challenges of Pap test screening
services for three populations,
Asian, South Asian, and First
Nation women
South Asian immigrant
women: Hindu, Sikh, Muslim
women (n=20) and key
informants (n=5) (also, Asian
and First Nations)
Purposive sampling from
cervical cancer screening
clinics
One-on-one interviews and
key informant interviews
South Asian: Reluctant to discuss cancer or cervical
cancer; Interplay between cultural values and
health structure
Cross-case analysis: Lack of comprehensive or
holistic health services
Bottorff et al., 2001b
Vancouver, Canada
Health seeking behaviours
Qualitative: Critical
ethnography
Explore South Asian immigrant
women`s health seeking.
South Asian immigrant
women: Sikh (n=49); Hindu
(n=12);Muslim (n=14);
Christian (n=3)
Purposive sampling: South
Asian community
Face-to-face interviews (50)
and focus groups (30)
Context of women’s health
Speaking about health concerns
Seeking validation
Unspoken concerns
106
Appendix 1A. Beliefs and Attitudes toward Cancer Screening in South Asian Immigrants
Author (s), year,
location, & topic
Study design, & purpose Study population, & setting Methods Findings
Choudhry,1998
Toronto, Canada
Health Promotion
Qualitative: Ethnography
Explore South Asian Indian
women‟s health promoting
practices
20 Hindu and Sikh (First
generation) women
Key informants community
recruitment
Open-ended, semi-structured
interviews in home
Value of being healthy
Spiritual well-being
Barriers to Health Promotion
Changes in Lifestyle Behaviours
Choudhry et al., 1998
Toronto, Canada
Breast Cancer Screening
Qualitative: Descriptive
Explore knowledge, attitudes,
beliefs, and practices of South
Asian women
57 South Asian (1st generation)
women; India (n=44); Pakistan
(n=14); Bangladeshi (n=1);
Indian from East Africa (n=2)
Key informant network
community sampling
One-on-One interviews
Breast cancer knowledge
Attitudes/Beliefs
Mammography
Barriers
Forbes et al., 2011
London, UK
Breast Cancer Screening
Cross sectional study
Examination of ethnic variation
in breast cancer awareness and
barriers to presentation
2077 women approached: 333
(22%) South Asians:
Bangladeshi, 34%; Indian, 29%;
Pakistani, 23% (also White
British, and Black )
Household door-to-door
sampling (81% participated)
Barriers: South Asians report worry,
embarrassment, and lack confidence
Knowledge and awareness: South Asian less likely
to know of screening or symptoms
Gesink et al., 2014
Ontario, Canada
Breast, Cervical, Colorectal
Cancer Screening
Qualitative: Grounded Theory
Explore communities of under-
and never-screened populations
Health service providers (n=19)
and Community members
(n=121): Hindi-Urdu, Indo-
Caribbean (also, Latina, Afro-
Caribbean, and White) Male and
female
Community outreach via
informants
16 focus groups (under-never
screened groups)
Immigrants ONLY
Lack of knowledge: Cancer, risks, screening, tests,
health system
Barrier: Stigma and taboo of screening especially
for men
Literacy and communication barriers
Karbani et al., 2011
West Yorkshire, UK
Breast Cancer Screening
Qualitative: Descriptive
Explore attitudes, knowledge,
and understanding of breast
cancer and preventive health in
South Asian women
Breast cancer patients: Pakistani
Muslims (n=12), Bangladeshi
Muslims (n=2), Indian-Hindus
(n=2), Indian Sikhs (n=8); and
significant others (n=14). Male
& female
Purposive sampling: Three
hospitals
One-on-one interviews (n=11)
with significant other; at home
(n=17), breast cancer support
center (n=7)
Knowledge and awareness
Knowledge of breast cancer and symptoms
Cultural beliefs and practices of cancer
Social support
Matin & LeBaron, 2004
San Francisco, California
Cervical Cancer Screening
Qualitative: Descriptive
Explore attitudes and barriers
toward cervical cancer
screening, in Muslim women of
Middle Eastern background
Key informants (n=5) Muslim
women;1st/2
nd generation Indian
and Pakistani, n=15 (also
Afghan, Palestinian, Egyptian,
Yemenese)
Community recruitment: Non-
profit organization
Key informant: Telephone
Focus groups (3)
Key Informant :Mammograms, CBE and Pap test
Focus Groups: Muslim values of virginity and bodily
privacy; Family involvement in health care
Meana et al., 2001a
Toronto, Canada
Breast Cancer screening
Qualitative (1)/Quantitative(2)
Aims: (1) examine meaning of
breast cancer and screening; (2)
explore physician-related
barriers to recommendation
(1) Tamil women: n=30, 50
years of age and older
(2) Physicians: n=100 in Tamil
neighbourhoods
Male and female
Purposive sampling: South
Asian Women‟s Center list
Focus groups (n=3)
(2) Dillman method: Three
questionnaires
(1) Lack of awareness or exposure to breast cancer;
Perceived causes or risk; Misunderstanding reason
for tests; belief in karma, social stigmatization, and
embarrassment
107
Appendix 1A. Beliefs and Attitudes toward Cancer Screening in South Asian Immigrants
Author (s), year,
location, & topic
Study design, & purpose Study population, & setting Methods Findings
Lobb et al., 2013
Peel, Canada
Breast, Cervical, and
Colorectal Cancer
Screening
Qualitative: Concept mapping
Examine barriers to population
based screening among SA
immigrants
South Asian immigrants,
South Asian primary care
physicians, and community
service representatives (Part
1, n=53 and part 2, n=46)
Male and female
Snowball and network
sampling: (1) Brainstorming:
South Asian immigrants,
n=24
(2) Rating and sorting: South
Asian immigrants, n=15
Highest ranking barriers
Limited knowledge among residents
Ethno-cultural discordance
Health education programs
Cost: Ranked 2nd
among immigrants
Oelke & Vollman, 2007
Alberta, Canada
Cervical Cancer Screening
Qualitative: Exploratory
Explore South Asian Sikh
women‟ knowledge,
understanding, and perceptions of
cervical cancer screening
53 Sikh women
Purposive maximum variation
sampling: Community, public
health, and other agencies.
Interviews plus focus groups
to extend and validate
Inside/Outside; Knowing Circle; Prevention Circle;
Family Circle
Community circle; Health Care System circle
Pfeffer , 2004
Hackney, UK
Breast Cancer Screening
Qualitative: Exploratory
Examine women‟s decision to
accept or refuse letter of invite to
National Health Service Breast
Screening Program.
146 women: Gujarati, Punjabi
(n=36) (also Black Afro-
Caribbean, Cantonese, Somali,
Sylheti, Turkish, White)
Purposive sampling:
Screening unit (inner city
Hackney)
Focus groups (n=20)
Causes
Personal risk of breast cancer between themselves
and breast cancer candidates
Factors for compliance or non-compliance
Poonawalla et al., 2014
New Jersey, Chicago, US
[2008-2010]
Breast Cancer Screening
Cross sectional study
Examine attitudes of South Asian
women toward breast health and
breast cancer screening
124 South Asian women
India (91.9%), Pakistan
(3.2%), Bangladesh (0.8%),
Nepal or Bhutan or Sri Lanka
or Maldives (1.6%), Other
(2.4%)
Purposive sampling:
Community recruitment
South Asian General Health
Survey with Champions
revised Health Belief scale
Motivation: High among South Asian
Low self-perceived risk or fear
Fewer barriers to mammography
Randhawa & Owens, 2004
General cancer services
Luton, UK
Qualitative: Descriptive
Explore the meanings of cancer
and perceptions of cancer services
among South Asians
48 male and female: Indian
Gujarati, Indian Punjabi,
Pakistani Punjabi, and
Bangladeshi Sylheti
Purposive sampling: Non-
professionals and
professionals in cancer care
Focus groups (5)
Knowledge of cancer
Experiences of cancer
Causes of cancer
Cancer services
Taskila et al., 2009
West Midland Region, UK
Colorectal Cancer Screening
Cross sectional survey
Examine factors that contribute to
negative attitudes toward uptake
of colorectal cancer screening in
primary care
11,355 surveys
Indian (n=240); Pakistani and
Bangladeshi (n=45) (also
Black-Caribbean, Black-
African, Chinese, and Mixed).
Male and female
Convenience sampling: 19
general practices
11,355 surveys (53% response
rate)
53% response rate
1543 (14%) had negative attitudes; men >65 yrs.
more likely to have negative attitudes; Indian ethnic
background > negative attitudes than white ethnic
individuals (OR 1.70, CI 1.18-2.46)
Thomas et al., 2005
Brent & Harrow, UK
Breast and Cervical Cancer
Screening
Qualitative: Descriptive
Examine minority ethnic (pop.)
perceived barriers to breast and
cervical cancer screening
135 participants: Asian Indian
(n=26); Pakistani (n=16);
Indian sub-continent (n=9)
Males and females (>females)
Purposive sampling:
Community, family practices,
settlement and cultural
agencies. Focus groups
Knowledge of cancers. Beliefs and attitudes to
cancer. Access and barriers to screening services
Cultural beliefs. Relationship with health
professionals
108
Appendix 1B. Barriers/Predictors to Cancer Screening or Health Promotion/Services Utilization (Total 15)
Author (s), year,
location, & topic
Study design, & purpose Study population, & setting Methods Findings
Ahmad et al., 2011
Toronto, Canada
Breast Cancer Screening
Qualitative: Concept map
Examine South Asian
women‟s beliefs and barriers
to breast cancer screening
60 South Asian immigrant
women
Language: Punjabi (26.7%);
Urdu (43.3%); Hindi (30%)
Purposive sampling:
Community agency
Brainstorming (n=3),
Sorting and Rating (n=3),
and Interpretation (n=1)
85% had never had mammography
3 most important barriers: Lack of knowledge, fear
of cancer, language and transportation
Significant differences: Years in Canada
Ahmad et al., 2004
Toronto, Canada
Health Promotion and
Prevention
Qualitative: Exploratory
Explore Chinese and East Indian
immigrant women‟s health
promotion experiences and
perceptions
46 immigrant women
East Indian (n=24)
Chinese (n=22)
Purposive sampling: Client
lists at immigration and
settlement organizations
Focus Groups (8)
East Indian Data Only
Barriers to health information
Facilitators of health information
Credibility of health information
Popular sources of information after immigration
Amankwah et al., 2009
Calgary, Canada
Cervical Screening
Cross sectional study
Examine visible minority women
at high risk of not having Pap
tests, and the reasons for not
having the test
South Asian (n=832)
Other Asian (n=620)
Random sampling: Household
of those 12 years +
Canadian Community health
Survey (CCHS), cycle 1.1 and
cycle 2.1
Reasons for NOT having Pap: Not “gotten around to
it”; not necessary
Never had Pap test: South Asians, second highest
percentage (22.4%)
Had Pap test > 3 years ago: South Asians 2.2, lowest
amongst all groups
Bierman et al., 2009/2010
Toronto, Ontario
Health Services Access
Cross sectional study
Access to Health Care Services:
Rigorous and extensive literature
review and use of quality
indicators
Ontario adults
Canadian Community Health
Survey 2005 (Cycle 3.1) and
2007 Primary Care Access
Survey (Waves 4-11)
Adults 25+
Male and female
Secondary data analysis:
Home Care Reporting System;
Ontario Diabetes Database;
Ontario Health Insurance Plan
; ICES Physician Database;
Canadian Institute for Health
Information and 2001
Statistics Canada (Census)
South and West Asian or Arab: 47% women and 50
% men reported being very satisfied with obtaining
appointments for check-ups; recent immigrants, less
satisfaction than those in the country for 10 years or
more
Kagawa-Singer et al., 2007
California, US
Breast and Cervical Cancer
Screening
Cross sectional study
Examine Pap test and
mammography screening rates in
Asian American subgroup of
women
Asian American subgroups:
Chinese, Filipina, South
Asian, Korean, Vietnamese,
and Japanese American.
Secondary data analysis: 2001
California Health Interview
Survey
South Asian (1.4%) and Cambodian (3.7%) women
lowest % 65 + years
South Asians: 65% fluent in English
South Asian: Being married and regular health care
increased likelihood of Pap test
Kernohan, 1996
Bradford, UK
Breast and Cervical Cancer
Screening
Pre-post intervention study
Examine effectiveness of
community-based intervention to
improve knowledge and uptake
of breast and cervical screening
among minority ethnic women
1000/1628 sampled women
Indian, Pakistani, Bangladeshi
(670)
Purposive sampling: Three
neighbourhoods
Closed ended questionnaire
administered before-after
study
Lowest baseline knowledge: South Asians
Heard of cervical cancer and cervical smears:
South Asian 35.8% and 41.8%
Heard of breast cancer and mammography: South
Asian 21.3% and 19.5%; all others, range 30.2-
88.3%
109
Appendix 1B. Barriers/Predictors to Cancer Screening or Health Promotion/Services Utilization
Author (s), year,
location, & topic
Study design, & purpose Study population, & setting Methods Findings
Lee et al., 2010b
Maryland, US
Health Care Access/Screening
Qualitative: Descriptive
Examine factors that influence
access to health care among 13
different Asian American
communities
174 participants: Asian Indian
(3.5%); Nepali, (5.2%);
Pakistani (9.8%)
Males (45.4%); Females
(54%)
Purposive stratified and
convenience sampling:
Community leaders, agencies
plus advertisements
Focus groups (19)
Structural, individual, and financial barriers
Cultural attitudes
Women face multiple barriers
Preference for physicians
Marfani et al., 2013
Baltimore-Washington, US
[Secondary analysis]
Breast Cancer Screening
Cross sectional survey
Examine how acculturation
moderates association between
anxiety and breast screening in
Asian Indian women
512 Asian Indian American
women approached (84.4%
response)
Purposive sampling: Temples,
churches, Gurudwaras,
mosques, Jain Center and
other
August 2005 to February 2006
Anxiety: Associated with information seeking and
mammography
Perceived barriers to screening: Less likely to get
mammogram
Acculturation: Uptake
Meana et al., 2001b
Toronto, Canada
Breast Cancer Screening
Cross sectional survey
Examine Tamil women‟s‟ self-
reported barriers and incentives
to breast health behaviour
122 Tamil women:
Homemakers (49%);
employed outside home
(41%); retired (7%)
Purposive sampling: South
Asian community centers, and
a temple
Had NEVER had a mammogram: n=52 Predictors
were higher education, more time in North America
(mean years, 5.25)
Breast cancer screening beliefs and barriers
Menon et al., 2012
Chicago, US
Breast and Cervical Cancer
Screening
Cross sectional survey
Examine breast and cervical
cancer screening rates in South
Asian communities
198 participants: First
generation South Asian
immigrant women
Majority from India (86.5%)
Purposive sampling:
Community agencies
Questionnaire: Cancer
screening beliefs, social
support, medical mistrust,
family resources,
communication, acculturation
EVER had mammogram: 64.8%; more likely to
have mammogram if in US > 5 years, if had regular
family physician, and 60+ years than those never
screened; 5.6 times more likely to report EVER
having a mammogram if also had Pap test; 33%
EVER had a Pap test or vaginal exam
Robb et al., 2008
United Kingdom
Colorectal Cancer Screening
Cross sectional study
Examine ethnic minorities‟
cultural beliefs about colorectal
cancer screening with flexible
sigmoidoscopy
Indian (n=234); Pakistani
(n=166); Bangladeshi (n=63);
Caribbean (126);
African (n=108); Chinese
(n=53); White British (n=125)
Male and female
Ethnibus survey used Quota
random sampling with 2001
Census: Sampling individual
households (75-80%)
purposively: 875 Interviews
with ethnic minorities
Perceived causes of CRC: 40% did not know, 65%
Bangladeshi. Interest in CRC screening: 68% male,
younger, higher socio-economic status Lack of
interest: Bangladeshi not interested; Pakistani, not
unless “vital”. Perceived community barriers: 95%
ethnic groups said “shame” and “embarrassment”
Rudat, 1994
England and Wales, UK
Breast and Cervical Cancer
Screening
Cross sectional study
Examine awareness, experiences,
and attitudes of health related
services in South Asian women
Asian Indian, Pakistani, and
Bangladeshi populations
(Mammography 50-74 years;
Pap test 16-74 years)
Male and female
Purposive, random sampling:
Households 1981 census for
origin of birth to select sample
during July and August, 1992,
MORI Health Research Unit;
Health Education Authority
and NHS Ethnic Health Unit
Breast cancer screening: Asian Indian (14%),
Pakistani (18%), Bangladeshi (14%), UK born
(41%). Cervical screening, 16-74 years: Asian
Indian (37%), Pakistani (32%), Bangladeshi (28%),
UK born (60%); Ever heard of Pap, Asian Indian
(70%), Pakistani (54%), Bangladeshi (40%), UK
born (85%)
110
Appendix 1B. Barriers/Predictors to Cancer Screening or Health Promotion/Services Utilization
Author (s), year,
location, & topic
Study design, & purpose Study population, & setting Methods Findings
Sadler et al., 2001
California, US
Breast Cancer Screening
Cross sectional survey
Examine Asian Indian women‟s
breast cancer knowledge,
attitudes and screening
behaviours at baseline to assess
effectiveness of education
194 Asian Indian women
20-72 years of age
Purposive sampling: Grocery
stores (59.8%), religious sites
(34%), cultural events (4.1%),
and theaters (2.1%)
Baseline: Women 40+, 61.3% had mammogram
within 12 months; 45.4% had knowledge
Barriers to participating in early detection education
for breast cancer: 58.5% lack of time; 8.2%
language
Somanchi et al., 2010
Baltimore-Washington, US
Breast Cancer Screening
Cross sectional survey
Examine breast cancer screening
adherence and predictors for
mammography use in Asian
Indian women
512 Asian Indian American
women approached to
complete survey
Purposive sampling: Eight
Hindu temples, four churches,
three Sikh Gurudwaras, two
Muslim Mosques and Jain
Center; and other community
settings
Questionnaires
Response rate 84.4%
Factors associated with screening within 2 years
and adherence to guidelines
Had mammogram within 2 years: 24.6% women in
US for ≤10 years and 75.4% women lived in USA
for >10 years
Barrier to screening: 29% “no reason”, 22% no
problems with breasts, 12% test “too expensive”,
and 11% lack of physician recommendation
Wu et al., 2006
Michigan, US
Breast Cancer Screening
Cross sectional study
Examine Asian American women
beliefs and practices related to
breast cancer screening
125 women
Asian Indian, (n=38)
(others Chinese and Filipino
women)
Purposive sampling: Various
community and ethnic
agencies, religious, academic,
or other organizations
Survey: Susceptibility,
severity, benefits and barriers.
Women 40+: 64% had mammogram; those in USA
≥10 years reported regular mammogram more so
than recent immigrants; moderate to low income
Asian Indians had greater barriers-did not feel at
risk for breast cancer and more likely to lack
knowledge of where to get mammogram
Common barriers across all groups: Examination
by male health practitioner
111
Appendix 1C. Cancer Screening Knowledge and Uptake in South Asian Immigrant Populations (34)
Author (s), year,
location, & topic
Study design, & purpose Study population, & setting Methods Findings
Ahmad et al., 2005
Toronto, Canada
Breast Cancer Screening
Before-After Intervention
Examine behaviour change
in South Asian immigrant
women‟s breast cancer
knowledge, beliefs, and
self-efficacy
74 South Asian immigrant
women
Ethnic identity: South Asian
(48.6%), Canadian (5.6%)
Purposive sampling:
Immigration re-
settlement agencies and
family practices
Intervention: 10 Hindi
and Urdu breast cancer
risk and screening articles
in ethnic paper
Pre-Intervention: 20% correct on knowledge
scores; 33.3% “ever performed” clinical breast
exam; 46.4% reported “ever having had” an exam;
low knowledge of incidence, risk factors, age to
begin screening, breast self-exam , clinical breast
exam and mammography
Ahmad & Stewart, 2004
Toronto, Canada
Breast Cancer Screening
Cross sectional study
Examine self-perceived barriers
to clinical breast examination
(CBE) in South Asian women
52 South Asian immigrant
women
Purposive sampling: 6 family
physicians who spoke
language of target population
41% had one periodic health exam; 83% had heard
of CBE; 38.5% “ever had” CBE; 2/3 reported heard
about breast screening
Knowledge: 17% unable to correctly answer; 73%,
answered <50% questions
Top Barriers: Not knowing how CBE performed or
who to ask
Bansal et al., 2012
Scotland, UK
Breast Cancer Screening
Cross sectional study
Examine breast cancer screening
uptake taking into consideration
ethnic variation for women in
Scotland
First routine breast screening
(women 50-53 years):
Pakistanis (31.3%), Indians
(14.8%)
(also Chinese, Caribbean,
Black Scottish and Mixed)
Secondary data analysis:
Community Health Index,
Scottish Breast Screening
Programme,, Census 2001,
and National Health Service
Breast Screening Programme
138,374: 2002-2008 NHSBSP
23% of invited cohort did not have breast
screening; non-attendance higher in ethnic groups
vs. White Scottish women; Non-attendance relative
risk highest among Pakistani, Other South Asian
and Indian
Bharmal & Chaudhry, 2013
US [April to July 2001]
Breast, Cervical, and
Colorectal Cancer Screening
Cross sectional study (secondary
analysis)
Examine preventive health exam
uptake rates among South Asian
immigrants
405/1913 surveys sent out
returned
225 women : 69% born in
India; 13% born in Pakistan
Male and female (more males)
Purposive sampling: South
Asian households, preventive
exams (blood pressure,
cholesterol, mammogram,
Pap, colorectal cancer
screening, and tetanus,
pneumococcal, and influenza
vaccinations)
Up-to-date status: Of all tests, low among SA
immigrants; men, 26.1% and women, 24.9%; usual
source of care greater odds of being up-to-date
Women less likely to be up-to-date with all
preventive health exams
Boxwala et al., 2010
Michigan, US
[May-Sept 2007]
Breast Cancer Screening
Cross-sectional study
Examine factors associated with
breast cancer screening in Asian
Indian women
205 Asian Indian women
participated (20% declined)
Purposive sampling: Places of
worship, health fairs/events
women‟s event and
community fairs
63.8% of women had mammogram (2 yrs.)
Most likely to be screened: College education; lived
in US for more years; perceived screening as
useful; received recommendation from provider.
112
Appendix 1C. Cancer Screening Knowledge and Uptake in South Asian Immigrant Populations
Author (s), year,
location, & topic
Study design, & purpose Study population, & setting Methods Findings
Brotto et al., 2008
Vancouver, Canada, and New
Delhi, India
Cervical Cancer screening &
Breast Self-examination
Cross sectional study
Explore reproductive health
knowledge and behaviours
among women from four
distinct ethno-cultural groups
663 women: Indian (n=145)
women; Indian Canadian
(Indo-C) women in Canada
(n=29); East Asian women in
Canada (n=267); Euro-
Canadian women (n=222)
Purposive sampling: Online
research system, students from
Canada, University of British
Columbia
New Delhi recruitment not
described
Euro-C group most likely to have EVER had a Pap;
other three groups, less likely to have EVER had a
Pap; no difference in Pap use in Indian and Indo-C
Knowledge: Pap test use greater in all other groups
compared to Indian women
Chaudhry et al., 2003
US
Cervical Cancer Screening
Cross sectional study
Examine Pap test use (within 3
years) in South Asian women
1913 South Asian households
(405 returned)
Of 1508, 615 responded and
225 women
Purposive sampling: South
Asian households-endorsed by
two Indian/Pakistani
associations
42% response rate
South Asian women: Less likely to have Pap smears
(73% vs. 78%, p<.001) or usual source of care
(74% vs. 78%, p.007)
Predictors: Low Pap use, low socio-economic
status, unmarried,< years in US
De Alba et al., 2005
California, USA[2001]
Cervical Cancer Screening
Cross sectional study
Assess race/ethnicity and
Hispanic and Asian subgroups
of women in California on Pap
test use
25,228 women: White
(49.6%); Hispanic (30.1%);
Asian* (11.3%), Black
(5.4%), Other (3.6%) *South
Asians (9.4%)
Random sampling: Telephone
digit-dialling using California
Health Interview Survey
(CHIS)
South Asian less likely to report recent Pap or
EVER having had a Pap
Sub-group analysis: Filipino and Korean were most
likely to report recent Pap than South Asians,
Chinese, and Vietnamese
Glenn et al., 2009
California, US
Breast, Cervical, Colorectal and
Prostate Cancer Screening
Cross sectional study
Examine cancer screening rates
and demographic correlates
associated with four common
cancers, breast, cervical,
prostate and colorectal
344 South Asians
Indian (41%); Pakistani,
(25%); Bangladeshi (20%);
Sri Lankan (11%); Nepali,
(2%); Other (1%)
Male (48%), Female (52%)
Purposive sampling: Places of
worship and community
events
South Asian Network and
UCLA School of Public
Health collaboration
62% EVER had a mammogram, 63% EVER had a
Pap. 34% and 57% met screening guidelines;
highest mammogram rates in Sri Lankans, and
lowest in Pakistanis
Colorectal cancer: 33% of eligible sample EVER
had screening; 25% met guidelines; compared to
men, women less likely to have screening
Gomez et al., 2007
California, US
Breast Cancer Screening
Cross sectional study
Identify characteristics that
inhibit mammography screening
in Asian American women
1521 study subjects
Asian sub-groups: South
Asian (n=125)
(also Chinese, Japanese,
Filipino, Korean, Vietnamese)
Random sampling: Telephone
digit-dialling under-
represented areas/ethnic
groups using California
Health Interview Survey
(CHIS)
35.5% of all Asian women 41 years + reported no
mammogram in past 2 years
High risk South Asian: Had no health insurance;
with health insurance, < 50 years and unemployed;
with health insurance, <50 years, employed, and
non-citizens
Gupta et al., 2002
Toronto, Canada
Cervical Cancer Screening
Cross sectional study
Describe factors that limit Pap
test use among South Asian
women
62 Tamil students and 62
Tamil women
Purposive sampling: South
Asian university students and
community centers
Lack of knowledge of Pap test: 16% students and
66% women. Ever had Pap: 27% students, 23%
women-common reasons, self-perceived lack of
need or knowledge. Those who had Pap test, family
doctor recommendation was important predictor
113
Appendix 1C. Cancer Screening Knowledge and Uptake in South Asian Immigrant Populations
Author (s), year,
location, & topic
Study design, & purpose Study population, & setting Methods Findings
Hasnain et al., 2014
Chicago, US
Breast Cancer Screening
Cross sectional survey
Examine breast cancer and
screening beliefs and factors
that influence mammography
among Muslim women
207 Muslim 1st generation
Middle Eastern (ME), South
Asian (SA): Pakistan (30%),
Palestine (21%), and India
(17%)
Purposive sampling:
Community outreach
Measures: Breast health,
beliefs scale, acculturation and
importance of mammography
Mammography: 23.6% ME never screened
compared to 38% SA; 63% ME adherent to
guidelines compared to 41% SA
Acculturation: More years in US significantly
associated with screening among SA group
Islam et al., 2006
7 cities in the US
Breast and Cervical Cancer
Screening
Cross sectional study
Examine breast and cervical
cancer screening in South Asian
women
98 South Asian women
Indian (n=72), Bangladeshi
(n=13), Pakistani (n=5), Other
(n=8)
Purposive and random
selected individuals: South
Asian surname list
Behavioral Risk Factor
Surveillance and National
Health Interview Surveys
67% EVER had Pap, 54% in recent year
40 years and older (2/3): 70% ever had
mammogram, 56% in recent 2 yrs.
Predictors of EVER having Pap and mammogram:
Insurance (strongly associated)
EVER had Pap: Usual source of care, higher
language proficiency, education, > years in US and
marital status
Lee et al., 2010a
California, US
Breast and Cervical Cancer
Screening
Cross sectional study
Assess cancer screening
disparities among Asian
American women compared to
non-Latina white women
Non-Latina white (88.6%)
Six Asian American (AA)
groups (11.4%
aggregated):South Asian,
0.9% (also Chinese, Filipino,
Korean, Vietnamese,
Japanese)
Random sampling: Telephone
digit-dialling using California
Health Interview Survey
(CHIS)
Predisposing factors: AA, greater % married
Enabling factors: South Asians, high income
Need factors: Vietnamese women reported 2.9-3.7
doctor visits/year
Cancer screening: Asians highest Pap use and
lowest mammography rates (40.3%)
Predictors: More time in US increased screening
Lee et al., 2011
California, US
Colorectal Cancer Screening
Cross sectional study
Examine colorectal cancer
screening uptake in ethnic
minority populations in the US
Asian American and Pacific
Islanders (AAPI): Chinese,
Koreans, Japanese, South
Asians, Vietnamese, Filipinos,
and Pacific Islanders. Male
and female
Random sampling: Telephone
digit-dialling using California
Health Interview Surveys
(CHIS; 2001, 2003, 2005)
Greater females: South Asians, Pacific Islanders
Screening disparities: Filipino, Koreans, and South
Asian significantly lower probability of colorectal
cancer screening vs. non-Latino White reference
group
Lofters et al., 2010
Toronto, Canada
Cervical Cancer Screening
Cross sectional study
Examine cervical cancer
screening rates among
immigrant women
Ontario women (18-69 years)
Immigrants identified: More
likely to be represented among
low income neighbourhoods
Secondary data analysis:
Ontario Physicians‟ Database,
Landed Immigrant Data
System, 2006-2008)
Lowest adjusted rate ratio in both age groups: South
Asia, Middle East, and North Africa
Predictors: Neighbourhood income associated with
Pap; lower Pap rates for those not in primary care
model and <10 years in Canada; 21% had Pap in
older South Asian, lowest income neighbourhoods,
and not in primary care
114
Appendix 1C. Cancer Screening Knowledge and Uptake in South Asian Immigrant Populations
Author (s), year,
location, & topic
Study design, & purpose Study population, & setting Methods Findings
McDonald & Kennedy, 2007
Canada
Cervical Cancer Screening
Cross sectional study
Examine cervical cancer
screening among immigrant
women and other factors that
influence screening
8,327 immigrant women
South Asian, Southeast Asian,
(also White, Black, Hispanic,
Arab/West Asian, Chinese,
Korean, Japanese, Filipino)
Random sampling: 1996
National Population Health
Survey and 2002-2003
Canadian Community Health
Survey
Canadian born women: Lowest Pap rates among
South Asian, Southeast Asian, and West
Asian/Arab women, 15-25% Pap use compared to
>70% for native born White women of similar
socio-economic status
Menon et al. 2014
Chicago, US
Colorectal Cancer Screening
Cross sectional study
Assess predisposing and
enabling factors that influence
CRC screening uptake among
South Asian immigrants
275 1st generation South Asian
immigrants
Male and female
79.1% lived in US 5+ years
Purposive sampling:
Community agency
recruitment
Measures: Cancer beliefs,
medical mistrust,
acculturation, social support
and family resources
2.2 % perceived risk of colorectal cancer; 8% had
FOBT, 13.6% had endoscopy
Enabling predictors of FOBT: Language
acculturation and medical mistrust
Enabling predictors of endoscopy: income and
residence. Predisposing predictors of endoscopy:
Language acculturation, perception of risk, FOBT
Mehrotra et al. 2012
New Jersey & Chicago, US
Health Services Access
Cross sectional study
Examine self-health perception,
health related behaviour, health
services utilization and
satisfaction with medical care
for Asian Indians
1250 participants: Gujarati
(53%), Hindi (14.4%0, Telugu
(9.5%), and others (23.1%)
Males (54.1%)
Purposive sampling: Cultural,
civilian or religious events
2008-2010
Self-administered
questionnaire
73.5% response (n=1250)
83.7% had routine medical visit (2 yrs.); uninsured
(n=543), and 26.5% did not visit physician due to
cost; 47.9% reported Pap use; 37.1% reported BSE;
40.1% reported mammography use
Misra et al. 2011
7 cities in the US
Cancer Screening
Cross sectional study
Determine cancer screening
practices in Asian Indians in US
2900 invitations to Asian
Indians
Males (60.4%), Females
(38.6%)
Purposive sampling: Mailed
invitation and telephone
National Health Interview
Survey/Cancer Control
Module (with 62% response)
62% response
Men more likely to do FOBT (45.2% vs.30.6%)
and colonoscopy (45.5% vs. 32.6%). Predictors:
US ≥ 10 years, greater odds of all screening; >80%
higher education, greater odds Pap and FOBT;
insurance, main predictor
Patel et al. 2012
New York, US
Health Services Needs
Cross sectional study.
Assess needs among a
Bangladeshi sample
184 Bangladeshi women
Response rate, n=167
Random sampling: Household
door-to-door sampling
New York City Community
Health Survey
90.8% response rate: 45.4% (age standardized to
US census) never had Pap; Bangladeshi more likely
to never have received a Pap compared to other
groups
40 + years (age-standardized to US census): 24%
had not received mammogram >2years
Pourat et al. 2010
California, US
[2003]
Breast and Cervical Cancer
Screening
Cross sectional study
Evaluate access and
acculturation related to breast
and cervical cancer screening
for Asian Americans
2161 participants
South Asian (n=199)
(also Chinese, Filipino,
Japanese, Korean,
Vietnamese)
Random sampling: Telephone
digit-dialling
California Health Interview
Survey (CHIS), telephone
survey with Asian Indian staff
Mammogram rates: South Asians (39%) lowest.
English proficiency, South Asians (64%) lowest.
Predictors of CBE in South Asians: Usual source of
care increased likelihood of CBE; lack of insurance
decreased CBE. Pap test in South Asian: Lack of
usual source of care decreased likelihood
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Appendix 1C. Cancer Screening Knowledge and Uptake in South Asian Immigrant Populations
Author (s), year,
location, & topic
Study design, & purpose Study population, & setting Methods Findings
Price et al. 2010
Coventry and Warwickshire,
UK
[15 years tracking]
Breast and Colorectal Cancer
Screening
Cross sectional study
Determine breast and bowel
cancer screening uptake in
women (including South
Asians) in England
72,566 invited to bowel
screening: Non-Asian (n=69,
027); South Asian (n=539)
18,730 women invited to
breast screening: Non-Asian
White British (n=17,857);
South Asian (n=873)
Secondary data analysis:
National Health Services
bowel program data (2000-
2002); Subset of women
invited to breast screening,
rounds 1, 2, 5 (1989-2004)
also used
Greater proportion of South Asians completed only
(1) screening test 44% vs. 27.3% vs. non-Asian
women. South Asian women less likely to complete
FOBT than non-Asian women, 49.5% vs. 82.3%.
South Asian women no more likely to have FOBT
if had mammogram than those who did not have
either test
Quan et al. 2006
Canada
Health Services Access
Cross sectional study
Examine the utilization of
health services by white and
visible minorities in Canada
7,057 visible minorities:
South Asian (n=1447)
(also, Chinese, Japanese,
Korean, Filipino or Southeast
Asian, Arab/West Asian,
Black, Latin American,
White). Male and female
Random sampling:
Household, 12 + years
Canadian Community Health
Survey, cycle 1.1
Minorities significantly younger, more likely
married, completed higher education and have
income < $30,000; 51% in Canada for ≥ 10 years.
Utilization: Less likely to use PSA, mammogram or
Pap test
Rashidi & Rajaram 2000
Nebraska, US
Breast Cancer Screening
Cross sectional study
Examine knowledge and
frequency of breast self-
examination in Middle Eastern
(ME) Asian Islamic immigrant
women
50 Middle Eastern Asian
Islamic women approached
39 (78%) women participated:
Pakistan (n=18)
(also from Afghanistan,
Israel/Palestine, Jordan)
Purposive sampling:
Recruitment from Islamic
Center in Omaha
Knowledge of breast cancer, and BSE: 38 said <1
once a year and one monthly; 85% heard of BSE;
74% did not perform BSE. Learn to do BSE: 79%
not taught. Clinical Breast Exam: 82% never had.
Mammogram: 28% of women ≥40 years
Robb et al. 2010
England, Wales, & Scotland,
UK
Breast, Cervical and Colorectal
Cancer Screening
Cross sectional study
Examine awareness of three
national cancers screening
programs among ethnic groups
in UK
ONS: 2216/3653 (61%)
2208 completed cancer
Ethnibus: 1500, 6 ethnic
groups (October, 48%,
November, 56%): Indian
(n=467); Pakistani (n=333);
Bangladeshi (n=126) (also
Chinese, Caribbean, African)
Male and female
Random sampling:
Households, in-person-
computer aided
Office of National Statistics
Opinion (ONS) and Ethnibus
surveys/New cancer module
ONS survey: White sample, highest knowledge of
breast (89%) and cervical cancer (84%) screening
programs and lowest among Ethnibus sample (69%
breast, 66% cervical) Caribbean had greater
awareness of breast and cervical cancer programs
than Indians
Colorectal cancer screening: Bangladeshi greatest
awareness (40%) compared to other 6 groups
Surood & Lai 2010
Alberta, Canada
Health Services Utilization
Cross sectional study
Examine the effect of multiple
factors on Western health
services utilization in older
South Asian immigrants
220/329 (66.9%) South Asian,
55+ years: Sikh (55.5%);
Muslim (20.5%); Hindu
(20%)
Male (55.5%), females
(44.5%)
Random sampling: Surname
list scan and telephone survey
Predisposing: Age significant explaining 7.2% of
variance in health care utilization
Enabling: Effect of age remained with lower
income. Cultural variables to using more health
services: Hindu, longer residence, more knowledge
and receptiveness of preventive health services
including screening
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Appendix 1C. Cancer Screening Knowledge and Uptake in South Asian Immigrant Populations
Author (s), year,
location, & topic
Study design, & purpose Study population, & setting Methods Findings
Sutton et al. 2001
Wakefield, UK
Breast and Cervical Cancer
Screening
Cross sectional study
Determine breast and cervical
cancer screening uptake in West
Yorkshire, England
852 South Asian women:
5.2% of 16,475 possibilities
South Asian and non-Asian
women matched by age, and
general practice and indirectly
for residence
Secondary data analysis: Eight
physician general practices,
West Yorkshire Central
Services Agency, primary care
health registration of
Wakefield Health Authority
Cervical cancer screening: 67% South Asian and
75% of non-Asians had acceptable cervical
screening histories; for two practices, South Asian
had greater coverage. Breast cancer screening:
53% of South Asian and78% of non-Asians had
acceptable breast screening histories; South Asians
less likely to be screened or to be overdue
Szczepura et al. 2003
UK
Colorectal Cancer Screening
Part 1 Cross sectional study:
Examine colorectal cancer
screening uptake with return of
FOBT kit; Part 2 Cross sectional
study: Understand beliefs and
attitudes with FOBT responders
and non-responders; Part 3
Qualitative study: Assess
reasons for behaviour
Part 1: 132,992 (62%)
Part 2: Hindu-Gujerati
(n=194) ;Hindu-other (n=87);
Muslim (n=191); Sikh-Punjabi
(n=311)
Part 3: Bangladeshi,(n= 44),
Punjabi Sikh (n=35), Gujerati
(n=31), Pakistani/Urdu (n=13)
Male and female
Purposive sampling: Bowel
screening program recruitment
Part 1: South Asian, 30.8%- 43.2% uptake vs.
63.3% in non-Asians; lower than white-Europeans.
Part 2: South Asian, lower perceived susceptibility,
“embarrassing”, “disgusting”, “unhygienic”, low
confidence & social support. Part 3: (1) Knowledge
and fear of cancer, afraid, fatalistic; (2) Attitude
toward screening, lack of knowledge; (3) Reasons
for not screening, lack of knowledge, FOBT not
appealing, language, and not concerned about
health
Szczepura et al. 2008
Coventry & Warwickshire, UK
Breast and Colorectal Cancer
Screening
Cross sectional study
Examine patterns of uptake for
breast & bowel (began in 2000)
cancer screening for two
organized screening
programmes in UK
240,140 participants
(round 1 and 2): South Asians
(n=8,649)-Hindu-Gujarati,
Hindu-Other, Muslim, Sikh ,
an Other South Asian
Male = Female
Secondary data analysis:
Session one (2000–02);
session two (2003–05) of
National Bowel Cancer
Screening Program
South Asians had significant low unadjusted
colorectal screening uptake compared to non-
Asians, 32.8% vs. 61.3% (round 1). South Asians
also had significantly lower breast screening
compared to non-Asians, 60.8% vs.75.4% (round 1)
with disparities reduced slightly over time.
Webb et al. 2004
Manchester, England
Cervical Cancer screening
Cross sectional study
Determine cervical cancer
screening uptake by ethnicity in
women
72,613 records of eligible
women 30-64 years of age
Ethnicity: South Asian
(n=6,7830)
(also Other, and Great Britain)
Secondary data analysis:
Feb 2001 electronic screening
records from Manchester
Health Authority
6,783 (9.3%) women South Asian. Uptake for
South Asian, 69.5% versus 73.0% for non-Asians
(p<0.001). Uptake lower: Indian subcontinent
origin than other South Asian women (65.6 versus
71.4%, p<0.0001); “never-screened” rate 39% for
South Asians from subcontinent
Woltman & Newbold
2007
Montreal, Toronto, &
Vancouver, Canada
Cervical Cancer Screening
Cross sectional study
Examine individual and
neighbourhood factors
associated with cervical cancer
screening among immigrant and
native born women
Immigrant and native born
South Asian women (5.1%)
(also White, Chinese, Other
Asian, Black, Other)
Random sampling:
Household, women 18-69
years
Canadian Community Health
Survey, cycle 2.1 (2003)
Had Pap test: 89% native-born; 65% recent and
88% long-term immigrants
Odds of EVER having a Pap compared to native-
born women: 0.19% recent and 0.56% long-term
immigrants Least likely to EVER have had a Pap:
Chinese, South Asian, or other Asians
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Appendix 1C. Cancer Screening Knowledge and Uptake in South Asian Immigrant Populations
Author (s), year,
location, & topic
Study design, & purpose Study population, & setting Methods Findings
Wong et al. 2005
California, USA
Colorectal Cancer Screening
Cross sectional study
Examine colorectal cancer
screening rates in Asian-
American (AA) groups
55,000 households, 50 years+
South Asians (n=148)
(also Chinese, Filipinos,
Japanese, Korean,
Vietnamese)
Male and female
Random sampling: Telephone
lists from community
organizations
California Health Interview
Survey (CHIS): 2001
64% response rate (AA)
Screening lower in AA: 38% FOBT, 42%
endoscopy and 58% any screen compared to non-
Latino whites, 58% FOBT, 57% endoscopy, and
75% any screen
Wu & Ronis 2009
Michigan, USA
Breast Cancer Screening
Cross sectional study
Examine Asian American
women‟s beliefs, knowledge,
and mammogram use
315 Asian American women;
Asian Indian, 109 (35%)
(also Chinese or Taiwanese,
Korean, Filipino)
Purposive sampling:
Community, festivals, socials,
religious and health fairs
56% had mammogram. Of 253 completed data for
regular mammogram, 33% had mammogram (last 5
years). Barriers: Recent immigrants, and language
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Appendix 2 Thematic Analysis arising from studies and reports regarding cancer screening among SA immigrants Theme Sub-theme Study Distribution and References
1. BELIEFS AND
ATTITUDES
Beliefs and attitudes
toward cancer and
screening.
Family as central
The cultural beliefs and values associated with
family such as cohesiveness, respect and
honour were important findings related to
socio-cultural context of SA immigrants.
11 studies: 1 included samples of both genders
Bottorff et al., 1998; Choudhry, 1998; Bottorff et al., 2001b; Meana et al., 2001a; Ahmad
et al., 2004; Matin & LeBaron, 2004; Thomas et al., 2005; Oelke & Vollman 2007;
Banning & Hafeez 2010; Ahmad et al., 2011; Karbani et al., 2011
Holistic health care
The perception that maintaining health also
occurs informally, and involves lifestyle
balance (diet, physical activity, rest, reduced
stress). These views were in discordance to
those of formal health care systems.
10 studies: 4 included samples of both genders
Bottorff et al.,1998; Choudhry, 1998; Bottorff et al., 2001b; Black & Zsoldas 2003; Matin
& LeBaron 2004; Asanin & Wilson, 2007; Bierman et al., 2009/2010; Lobb et al., 2013;
Menon et al., 2014; Poonawalla et al., 2014
Fatalism
The views associated with cancer emerged as a
strong belief that it was out of individual
control and led to death.
10 studies: 6 included samples of both genders
Bottorff et al., 1998; Choudhry, 1998; Meana et al., 2001a; Black & Zsoldas, 2003;
Szczepura et al., 2003; Pfeffer, 2004; Randhawa & Owens, 2004; Thomas et al., 2005;
Karbani et al., 2011; Gesink et al., 2014
Screening not necessary
The low self-perceived risk that screening was
only indicated for those at risk, or those who
had symptoms.
14 studies: 6 included samples of both genders
Rudat, 1994; Bottorff et al., 1998; Sadler et al., 2001; Szczepura et al., 2003; Pfeffer,
2004; Thomas et al., 2005; Wu et al., 2006; Oelke & Vollman, 2007; Robb et al., 2008;
Amankwah et al., 2009; Austin et al., 2009; Lobb et al., 2013; Menon et al., 2014;
Poonawalla et al., 2014
Emotion-laden perceptions Negative emotional states were reasons for not
engaging in cancer screening.
22 studies: 7 included samples of both genders
Rudat, 1994;Bottorff et al., 1998; Choudhry et al., 1998; Bottorff et al., 2001a; Meana et
al., 2001; Meana et al., 2001b; Sadler et al., 2001; Black & Zsoldas, 2003; Szczepura et
al., 2003; Ahmad & Stewart, 2004; Pfeffer, 2004; Thomas et al., 2005; Wu et al., 2006;
Oelke & Vollman, 2007; Robb et al., 2008; Austin et al., 2009; Taskila et al., 2009;
Banning & Hafeez, 2010; Ahmad et al., 2011; Forbes et al., 2011; Lobb et al., 2013;
Poonawalla et al., 2014
2. LACK OF KNOWLEDGE
Reasons for not engaging in cancer screening included limited knowledge
of cancer type, the causes of cancer, awareness or types of screening tests,
and access points to obtain screening.
23 studies: 7 included samples of both genders
Rudat, 1994; Bottorff et al., 1998; Choudhry et al., 1998; Rashidi & Rajaram, 2000;
Bottorff et al., 2001a; Meana et al., 2001b; Gupta et al., 2002; Szczepura et al., 2003;
Ahmad et al., 2004; Ahmad & Stewart, 2004; Ahmad et al., 2005; Wu et al., 2006; Oelke
& Vollman, 2007; Brotto et al., 2008; Robb et al., 2008; Austin et al., 2009; Wu & Ronis,
2009; Banning & Hafeez, 2010; Robb et al., 2010; Forbes et al., 2011; Karbani et al.,
2011; Lobb et al., 2013; Gesink et al., 2014
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Appendix 2 Thematic Analysis arising from studies and reports regarding cancer screening among SA immigrants Theme Sub-theme Study Distribution and References
3. BARRIERS TO
ACCESS
Individualized or
systematic reasons that
impede the ability to
access cancer
screening.
Individual barriers
The personal and individual factors that
inhibit individuals from accessing cancer
screening, such as language, social support,
time, money and transportation.
18 studies: 9 included samples of both genders
Kernohan, 1996; Bottorff et al., 1998; Meana et al., 2001b; Sadler et al., 2001; Sczepura
et al., 2003; Ahmad et al., 2004; Matin & LeBaron, 2004; Thomas et al., 2005; Asanin &
Wilson, 2007; Oelke & Vollman, 2007; Austin et al., 2009; Szczepura et al., 2008; Wu
& Ronis, 2009; Lee et al., 2010b; Ahmad et al., 2011; Karbani et al., 2011; Lobb et al.,
2013; Gesink et al., 2014
Structural barriers
The systemic factors inherent in the way
health services are organized that limit access
to cancer screening, such as physician gender,
culture, or recommendation.
24 studies:10 included samples of both genders
Rudat, 1994; Bottorff et al., 1998; Bottorff et al., 2001a; Meana et al., 2001a;Gupta et al.,
2002; Black & Zsoldas, 2003; Pfeffer, 2004; De Alba et al., 2005; Thomas et al., 2005;
Wong et al., 2005; Islam et al., 2006; Wu et al., 2006; Asanin & Wilson, 2007; Gomez et
al., 2007; Oelke & Volman, 2007; Glenn et al., 2009; Boxwala et al., 2010; Lee et al.,
2010b; Pourat et al., 2010; Somanchi et al., 2010; Karbani et al., 2011; Misra et al.,
2011; Mehrotra et al., 2012; Lobb et al., 2013
4. GENDER DIFFERENCES
The distinct factors that affect uptake of cancer screening in SA men and
SA women.
40 studies: 11 included samples of both genders
Rudat, 1994; Kernohan, 1996; Choudhry et al.. 1998; Rashidi & Rajaram, 2000; Meana
et al., 2001b; Sutton et al., 2001; Gupta et al., 2002; Chaudhry et al., 2003; Ahmad &
Stewart, 2004; Webb et al., 2004; De Alba et al., 2005; Wong et al., 2005; Islam et al.,
2006; Quan et al., 2006; Gomez et al., 2007; McDonald & Kennedy, 2007; Kagawa-
Singer et al., 2007; Woltman & Newbold, 2007; Brotto et al., 2008; Szczepura et al.,
2008; Glenn et al., 2009; Wu & Ronis, 2009; Amankwah et al., 2009; Boxwala et al.,
2010; Lee et al., 2010a; Lofters et al., 2010; Pourat et al., 2010; Price et al., 2010;
Somanchi et al., 2010; Surood & Lai, 2010; Lee et al., 2011; Misra et al., 2011; Bansal et
al., 2012; Bharmal & Chaudry, 2012; Mehrotra et al., 2012; Menon et al., 2012; Patel et
al., 2012; Hasnain et al., 2014; Marfani et al., 2014; Menon et al., 2014
120
Chapter Three
Colorectal cancer screening behaviours among South Asian immigrants in
Canada: A qualitative study
This chapter presents the second phase of the exploratory sequential mixed method study,
the focus group study. In the spring of 2015, the manuscript was published in the
International Journal of Migration, Health and Social Care (doi: 10.1108/IJMHSC-09-
2014-0037). The manuscript appears in this thesis with permission granted by Emerald Group
Publishing on September 3, 2015. The following copyright statement for the journal states: “This
article is © Emerald Group Publishing and permission has been granted for this version to appear
here (http://www.emeraldinsight.com/doi/abs/10.1108/IJMHSC-09-2014-0037?af=R). Emerald
does not grant permission for this article to be further copied/distributed or hosted elsewhere
without the express permission from Emerald Group Publishing Limited”. The following chapter
is presented as it appears in the manuscript with style changes converted to an American
Psychological Association to adhere to the nursing science style.
3.1 Abstract
Purpose: To gain an in-depth understanding of beliefs, attitudes, and reasons for
decision-making about colorectal cancer screening among South Asian immigrants.
Design: Six focus groups conducted in English, Punjabi, and Urdu were held with 42
South Asian immigrants, 50-74 years old and at average risk for colorectal cancer, from
November 2012 to May 2013. All focus group discussions were audio-taped and transcribed
verbatim. Data analysis used an inductive and systematic approach employing constant
comparison techniques.
Findings: Three dominant themes emerged. Beliefs and attitudes toward cancer and
screening represented South Asian immigrant‟s perceptions that early detection was beneficial;
121
screening was not necessary in the absence of symptoms; cancer was scary; and the loss of
previously established bowel practices upon immigration as potential risks for colorectal cancer.
Knowledge and awareness focused on unscreened participants‟ cancer stories; screened
participants‟ knowledge of colorectal cancer, risk factors, and screening; experiential learning
from focus groups; and screened participants‟ strategies to promote screening. Support and
accessibility concentrated on physician support and responsibility to provide information,
explanation, and recommend screening to facilitate access.
Originality/value: Findings provide novel insights on socio-cultural context, beliefs, and
barriers to colorectal cancer screening among South Asian immigrants. Culturally appropriate
community-based strategies included story-telling, the use of social networks, and greater
physician engagement. Enhancing collaborative partnerships with physicians and public health
may minimize structural barriers and reduce health disparities. Future research could explore
effectiveness of outreach strategies including these collaborations.
3.2 Introduction
South Asian immigrants represent the largest and most rapidly growing minority
population in North America (Ahmad, 2012). In Canada, this population is expected to grow due
to immigration policies motivated by the aging population, low birth rates, and need for skilled
workers. South Asian (SA) immigrants are a diverse population, and identify ethnic origins from
the Indian sub-continent including India, Pakistan, Bangladesh, Sri Lanka, Nepal and Bhutan, as
well as countries including Africa, the Caribbean, and Guyana representing the SA diaspora
(Tran, Kaddatz, & Allard, 2005). The diaspora denotes individuals whose ancestral origins are
from the Indian sub-continent prior to initial migration to countries colonized by the British or
French (Ahmad, 2012).
122
In North America, colorectal cancer (CRC) is the third most common cancer diagnosed
and the second leading cause of cancer deaths (Jemal et al., 2011). The incidence of CRC is
lower in the Indian sub-continent compared to western countries. However, the incidence among
SA immigrants approaches similar rates as western populations with length of time settled.
Epidemiological studies have documented CRC as one of the three most common cancers
diagnosed among SA immigrants in North America and the United Kingdom (UK) (Hislop,
Bajdick, Saroa, Yeole, & Barroetavena, 2007; Hossain, Sehbai, Abrahan, & Abraham, 2008;
Rastogi et al., 2007). This increased incidence has been attributed to post migration factors such
as the adoption of western lifestyles and access barriers to cancer screening (Jain, Mills, & Prikh-
Patel, 2005; Quan et al., 2006).
Evidence-based guidelines recommend CRC screening for average risk people 50 years
of age and older to reduce mortality and morbidity (U.S. Preventive Services Task Force, 2008).
However, screening rates among SA immigrants residing in western countries remain sub-
optimal. South Asian (SA) immigrants who have historically low breast and cervical cancer
screening rates (Lee, Ju, Vang, & Lundquist, 2010a; Quan et al., 2006), also have low rates of
CRC screening (Lee, Lundquist, Ju, Luo, & Townsend, 2011; Szczepura, Price, & Gumber,
2008). In Canada, CRC screening uptake rates are lower among recent immigrants and
individuals residing in low income communities than their counterparts (Honein-Abou Haidar et
al., 2013). In addition to the low screening rates, there is a dearth of literature providing an in-
depth understanding about the factors that influence uptake of CRC screening among SA
immigrants.
Only two qualitative studies conducted in the UK have examined CRC screening
behaviours among SA immigrants (Austin et al., 2009; Szczepura et al., 2003). Austin and
123
colleagues (2009) conducted focus groups with SA immigrants (via interpreters) to explore
barriers to flexible sigmoidoscopy screening, and key findings included: lack of knowledge and
awareness of CRC, low self-perceived susceptibility to CRC, lack of symptoms, lack of
confidence in completing bowel preparation at home, and refusing the test if not recommended
by a physician. Focus groups undertaken by Szczepura and colleagues (2003) found SA
immigrants: had low knowledge of CRC and consequences of the disease; found cancer
worrisome or fatalistic; lacked concern about their health; or had aesthetic issues with the fecal
occult blood test (FOBT). These studies provide useful insights but extrapolating to other
countries is full of uncertainty due to different immigration patterns and socio-cultural contexts.
To address this gap, an exploratory qualitative study using focus groups was conducted with SA
immigrants in Canada to elicit their perspectives of CRC and screening. The overall aim was to
develop an in-depth understanding of beliefs, attitudes, and reasons for decision-making in CRC
screening.
3.3 Methods
This qualitative study used naturalistic inquiry, which is ideally suited to conducting
research with vulnerable communities, such as SA immigrants. Situated in critical social theory,
power differences between participants and the investigator was reduced through group
dynamics (Lincoln, Lynham, & Guba, 2011). For instance, research assistants (RAs) were
immigrants and/or identified with an ethnic minority community, which enhanced the comfort of
participants to have an open dialogue. The investigator was sensitive to and valued the multiple
perspectives of SA immigrants (Lincoln et al., 2011). The principal investigator, also an
immigrant, has training as a public health practitioner, and acknowledges that both investigator
and participants‟ values are intertwined in the presentation of findings.
124
The use of focus group methods precipitated the emergence of participant voices and in
turn, uncovered socially constructed meaning of experiences with CRC and screening (Lincoln et
al., 2011). Focus group methods using open-ended questions assisted participants who knew
each other to engage in dialogue that facilitated rich discussions (Lincoln et al., 2011; Morgan &
Krueger, 1998), and shared knowledge among participants (Kitzinger, 1996). The “cuing
phenomenon” inherent in this method enhanced the investigator‟s ability to uncover multiple
dimensions of participants‟ perspectives without being intrusive (Kitzinger, 1996). Focus group
methods are congruent with critical social theory and fostered empowerment by holding sessions
in settings familiar to participants in their language of choice. Research Ethics Board approval
was obtained from two affiliated universities.
3.3.1 Setting and participants
The research was conducted in a mid-sized urban city in Ontario, Canada, with a
population of 504,000 (Social Planning and Research Council of Hamilton, 2009), home to a
growing immigrant population. According to the 2006 census, ethnic minority populations
increased by 50% over the previous decade in the city. The primary investigator had previous
public health experience and ties with organizations servicing SA immigrants in the city, and
thus the rationale for selecting the study location.
Potential participants representing a diverse sample were identified using purposive
sampling. Eligibility was established using criteria of: self-identification as SA immigrant male
and female; 50 to 74 years of age; average risk for CRC [individuals with no prior personal or
family history, no genetic or familial polyposis syndromes, no inflammatory bowel diseases, and
no bowel symptoms (Winawer, 2005)]; permanent resident in Ontario; language spoken
(English, Urdu, Punjabi or Hindi); and origin from the Indian sub-continent or SA diaspora.
125
Screened (using FOBT, flexible sigmoidoscopy, or colonoscopy) and unscreened participants
were eligible. Temporary or visiting SA immigrants were excluded.
3.3.2 Procedures
Participant recruitment capitalized on pre-established collaborative relationships with
geographically dispersed agencies and used multiple recruitment strategies. Several key
stakeholders encompassing six community-based agencies and a public health unit collaborated
on the recruitment strategy. Three temples and two community centers serving SA immigrants
were recruitment sites where focus groups were held. The primary investigator and male (2) and
female (1) multilingual research assistants (RAs) proficient in English, Hindi, Urdu, and Punjabi
made repeated visits to sites during group activities to recruit potential participants. Eligible
participants registered for a focus group booked around weekly activities or prayers at each site.
Urdu and Punjabi advertisements posted at selected sites during this time period were not as
successful on their own to recruit participants.
Initially, focus groups were to be stratified by gender and CRC screening status but this
was not achieved in the field due to the availability of participants on specific days. Each
recruitment site was made up of pre-established groups and thus, potential participants were
familiar with each other. Consequently, mixed focus groups (men and women; screened and
unscreened) were agreeable to all participating together in the same group, and generated rich
discussions.
The development of an open-ended focus group interview guide was informed by the
Behavioural Reasoning Theory (Westaby, 2005) with an emphasis on both behavioural
constructs and social context; both of which are essential to the assumptions underpinning
critical social theory. The interview guide (Appendix A) was developed in English, translated
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into Punjabi and Urdu; each language translation and back translation involved two RAs fluent in
English, Punjabi and Urdu (Esposito, 2001). In the case of any discrepancies, RAs discussed
issues and reached consensus. The guide was piloted with four SA immigrants and conceptual
revisions made accordingly. Four focus groups were conducted in English with interpretation
facilitated by RAs as needed; one focus group was conducted in Punjabi and another in Urdu.
Six focus groups with 42 SA immigrants were held from November 2012 to May 2013.
Focus groups were on average 70-90 minutes with five to 12 participants per group. Informed
consent was provided including asking permission to audio-tape groups. Participants completed a
socio-demographic form and data was entered into Microsoft Excel 10. Refreshments were
provided and participants received a $20.00 honorarium.
3.3.3 Data collection and rigor
Several strategies were employed to strengthen the rigor and enrich quality of data
collection. Two days of training were provided to RAs on focus group and data collection
procedures to enhance the process and consistency of data collection (Aday & Cornelius, 2006).
Focus groups were audio-taped and transcribed verbatim by RAs in English (Morgan & Krueger,
1998). For focus groups conducted in Punjabi and Urdu, tapes were transcribed and translated by
one RA into English, and back translated by the second RA who made comparisons with original
transcripts. After each focus group, the RA provided a summary of key points and asked
participants for feedback, which served as member-checking (Krueger, 1994). Debriefing among
the RA, co-facilitator RA, and investigator captured additional notes regarding unique aspects of
focus group discussions. Detailed notes obtained during focus groups served as a means to
review subsequent focus group data to ascertain when no new data emerged, and saturation was
reached, which subsequently occurred after the sixth focus group (Glaser & Straus, 1967).
127
Additionally, a peer-audit technique was employed where an external researcher reviewed three
transcripts to identify categories and themes to compare with those identified by the primary
investigator. To organize and manage data, all audio-taped discussions were entered into NVivo
version 8.
3.3.4 Data analysis
An inductive and systematic approach was used to analyze transcribed data and field
notes drawing on techniques from grounded theory methods (Glaser & Straus, 1967; Corbin &
Strauss, 2008), and thematic analysis (Braun & Clarke, 2006). The purpose of analysis was to
explore participants‟ beliefs and attitudes, and decision-making related to CRC screening. The
initial step began with reading through transcripts and notes line by line thoroughly to gain an
understanding of data. During this process, memos of initial ideas and phrases were captured on
paper (Glaser, 1998). A method of open-coding was used and related to participants‟ experiences
with CRC and screening. Coding labels were derived from various sources: participants‟ exact
words, researcher developed phrases, or social or human sciences‟ concepts. Constant
comparison was used to label text phrases or sentences with codes and analyze data further
(Glaser, 1978). Codes were then reduced by grouping them into broader categories. Refinement
of codes and further categorization into themes and sub-themes were represented visually to
further analyze inter-relationships. Final interpretation involved linking findings and discussing
them in relation to the original research question. The integrative use of member-checking,
debriefing, and peer-audit techniques were used to enhance credibility of research findings.
3.4 Findings
Six focus groups with 42 participants were conducted (see Table 1 focus group
characteristics below). There was a greater proportion of females (62%, n=26) than males (38%,
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n=16). The mean age of participants was 64 years. Sixty-nine percent (n=29) of participants were
born in India, 16% (n=7) originated from other countries including Mauritus, Uganda, Kenya or
Africa, and 14% (n=6) were born in Pakistan and Bangladesh. Mean number of years in Canada
was 24; 38% had lived in Canada for 10 years or less. Forty-eight percent (n=20) reported being
fluent in English. Thirty-eight percent had attained less than a high school education. Almost half
(48%, n=20) lived in households with other members of the family. Most participants had a
family physician (88%, n=36). CRC screening uptake was similar among women and men.
Pakistani/Bangladeshi participants reported lower CRC screening uptake compared to other
participants. Of note, 42% of women had screening for breast or cervical cancer but not CRC.
See Table 2 for participant characteristics.
Table 1 Focus group characteristics
Focus Group
No.
Group 1
(n=5)
Group 2
(n=7)
Group 3
(n=6)
Group 4
(n=12)
Group 5
(n=7)
Group 6
(n=5)
Age
50-59 years
50-69 years
70-74 years
n=0
n=3
n=2
n=0
n=4
n=3
n=0
n=3
n=3
n=7
n=5
n=0
n=2
n=3
n=2
n=1
n=3
n=1
English
Language
Proficiency
Yes
No
n=4
n=1
n=5
n=2
n=4
n=2
n=0
n=12
n=3
n=4
n=5
n=0
Country of
Origin
India
Pakistan
Other
n=3
n=0
n=2
n=3
n=0
n= 4
n=4
n=0
n= 2
n=12
n=0
n=0
n=2
n=5
n=0
n=5
n=0
n=0
Colorectal
cancer
screening
Yes
No
n=1
n=4
n=5
n=2
n=5
n=1
n=4
n=8
n=0
n=7
n=3
n=2
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Table 2 Participant characteristics
Age in years n (%) Level of Education Completed n (%)
50 years and older
50-59 years
60-69 years
70-74 years
Total
Mean age: 64 years
11
20
11
42
26
48
26
100
Less than high school
Completed high school
Completed some college/university
Completed trade, certificate, or diploma
University certificate/diploma
University degree
Post graduate degree
16
7
5
3
2
5
4
38
17
12
7
5
11
10
Gender n (%) Income Status n (%)
Male
Female
Total
Screening status by
gender
Screened: Male, 44%;
Female, 42%
Unscreened: Male, 56%;
Females, 58%
16
26
42
38
62
100
<19,999
20,000-29,999
30,000-39,999
40,000-49,999
50,000-79,999
80,000 or over
Don‟t know
Total
12
3
2
2
3
2
18
42
28
6
5
5
6
5
43
100
Country of Birth n (%) Family Doctor n (%)
India
Pakistan & Bangladesh
Other: 16% [Included
countries such as:
Mauritus, Uganda, Kenya
or Africa]
Total
29
6
7
42
69
14
16
100
Yes
No
Total
37
5
42
88
12
100
Years in Canada n (%) Colorectal Cancer Screening n (%)
10 years or less
11-19 years
20-29 years
30-39 years
40 years or more
Total
Mean years: 24 years
16
3
2
7
14
42
38
7
5
17
33
100
Yes
No
Total
By country of origin
India: Yes, 45%; No, 55%
Pakistan/Bangladesh: Yes,17%; No,
83%
Other: Yes, 57%; No, 43%
18
24
42
43
57
100
Marital Status n (%) Type of CRC screening n (%)
Married
Widowed
Divorced
Total
35
5
2
42
83
12
5
100
FOBT
Colonoscopy
17
11
61
61
Family Household n (%) Other Cancer Screening Tests* n (%)
Alone
Partner/spouse
Parents
Other members of the
family Total
4
17
1
20
42
10
40
2
48
100
Breast
Cervical
PSA
None
*Note: More than one selected
21
9
6
15
41
17
11
31
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Three dominant themes emerged from the focus groups (Figure 1). However, the focus of
discussions varied by distribution of screened and unscreened participants within each group. For
example, in one focus group of mostly screened participants, the discussion centered on
strategies to raise awareness of CRC screening in the SA community. In contrast, the focus
group that had only unscreened participants discussed their lack of knowledge and need for a
physician recommendation.
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Figure 1. Dominant themes, sub-themes, and categories emerging from focus groups
Themes
Themes:
Sub-themes Categories
Beliefs & attitudes toward cancer
and screening
Knowledge and awareness of cancer and
screening
Support and accessibility to information
and screening
Early detection
is good
Screening not
necessary
Cancer is scary
SA bowel
practices
Prevention Sources of
information
Knowledge status
Experiential
learning from
focus groups
Recommendations
to raise SA
community
awareness
Family, friends,
and community
Family
physician
CRC
Healthy lifestyle
Purpose of
screening
Desire to know
Education in
the community
Use of media
Word of mouth
Letter of
invitation
Family
physician
support
Recommendation
Responsibility
Explanation
Enforcement
Ethnicity and
gender of
healthcare
provider
System-level
Issues
Family and
friends
Peace of mind
and relief
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Themes, sub-themes and categories are discussed using verbatim quotes to illustrate
specific perceptions and experiences followed by parentheses containing focus group
number, gender, participant number, and screening status.
3.4.1 Theme 1: Beliefs and attitudes
Sub-theme: Early detection is good.
Prevention. Across all focus groups, both screened and unscreened participants
believed that the detection of CRC was beneficial to finding a problem and for obtaining
early treatment or a potential cure.
Screening was perceived to be important as a preventative measure before cancer
advanced and threatened life: “I think it is a very good thing that we do a stool test every two
years, at least as a precaution. We can catch the disease in the beginning. It doesn't have to go
too far…So I think it's a very good thing” (FG 3 Female 6-screened); and, “The test or
screening is a good thing that lets us know if we are suffering from the disease [cancer] and
then the treatment can be started soon. Not everyone necessarily dies of cancer…” (FG 5
Female 7- unscreened).
Peace of mind and relief. Screened participants believed that an advantage of
screening was knowledge (i.e. results) that cancer was no longer a threat: “When the test
comes back negative, at least you have peace of mind” (FG 2 Female 5- screened); and “You
go for any test, if it is negative, you always feel better” (FG 3 Male 5- screened). For
unscreened participants who learned about screening through the focus group, they
commented on the sense of “relief”, and reduced worry that one would feel if they had
screening: “Once you get it done, then at least you won‟t worry about it. Otherwise, you will
continue to worry about it.” (FG 1 Female 2-unscreened); “… tests made it clear [that you did
not have cancer] and you would be relieved if you don‟t have any complications…” (FG 5
Male 1- unscreened).
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Sub-theme: Screening not necessary. Some unscreened participants believed that
they did not require screening because they did not have symptoms or were healthy.
Participants strongly believed they had to have symptoms to warrant a visit to their physician
or a screening test. These beliefs were unwavering despite other participants‟ assertions that
CRC screening was important: “I say again, that if there are any symptoms, and you go to the
doctor, and he refers you to a test, then I don‟t have any problems getting it done…otherwise,
I don‟t see why” (FG 1 Male 5-unscreened).
The perception of good health and no family history of cancer were other reasons for
not believing that CRC screening was necessary: “I don‟t think I need the test. I stay healthy.
Only, if I get any symptoms, only then, will I go for the test” (FG 1 Male 5-unscreened).
Sub-theme: Cancer is scary. Unscreened and screened participants felt that cancer
was “scary”; however, for screened participants‟, fear was associated with having an invasive
test or waiting for results. The term “cancer”, instilled fear for unscreened participants: “Even
the word cancer scares me a little” (FG 2 Female 6-unscreened). The belief that cancer did
not have a cure or past experience with others who succumbed to cancer may have led to this
perception. Fatalistic beliefs were mentioned in relation to cancer being found in advanced
stages. The fear associated with a diagnosis of cancer or even the mention of the word
“cancer” was also perceived to bring on illness: “…Psychologically, the name of cancer is
so scary and upsetting and a person becomes sick and frightened if he has this diagnosis. As
far as my opinion is concerned, I believe that a person becomes sick even if comes across the
name of cancer” (FG 5 Male 1- unscreened).
Sub-theme: South Asian bowel practices. Screened participants in one focus group
discussed the aversion to FOBT. The discussion centered on caste systems within one‟s
native country and the process of collecting one‟s stool. Those in a higher caste perceived
handling stool as particularly unpleasant because they were not responsible for manual
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labour within the home, and therefore less comfortable with stool collection: “It could be that
in India, we had a different class [that came in to] clean stools [human waste] in our home,
for us. It could be from that we've developed an aversion to it” (FG 3 Female 4-screened).
Additionally, a lack of proper cleansing after bowel movements was perceived to be a risk for
CRC. The act of squatting low to promote complete elimination of feces, and using bidets to
cleanse after each bowel movement were important cultural practices: “… I think the old
fashioned squatting way of eliminating every morning was the best way” (FG 3 Female 2-
screened); and, “…we from India, are in the habit of washing ourselves when we go to the
toilet, you know, we should teach our children. I believe that's a clean habit, rather than
letting feces stay on top [of the skin] and be itchy” (FG 3 Female 4-screened).
3.4.2 Theme 2: Knowledge and awareness
Sub-theme: Sources of information.
Family, friends, and community. Most participants shared past personal experiences
of family or community members who had cancer, the importance of early detection, and the
reasons for engaging in CRC screening: “I was perfectly ready to go for it; I said if it would
help me and help you to diagnose any problem, sure go ahead. My brother passed away due
to lung cancer, so I have seen the bad side of it. I wanted to make sure that cancer did not
come into my family basically” (FG1 Male 3-screened). Narratives of the impact of cancer or
poor outcomes were predominant among those who had not heard of CRC: “Only a few days
ago, the Imam [Religious Leader] of the Mosque delivered his last sermon and the doctors
declared that he had been suffering from cancer... He had only a limited period of his life left
then…” (FG 5 Male 1- unscreened).
Family physician. For some participants, the physician was the most common source
to learn about CRC screening: “I think it's very important and my family doctor told me that
you should go” (FG 3 Female 3- screened); and, “I think that screening is very important. So,
135
every 2 years, the doctor sends us and we should go to the doctor” (FG 6 Male 2-screened).
Sub-theme: Knowledge status.
Colorectal cancer. Among screened participants, there was greater knowledge of
CRC and screening. Knowing about CRC included understanding the implications of the
disease, and an enhanced awareness that early treatment would lead to improved outcomes.
In contrast, unscreened participants in all groups had limited knowledge of CRC and
screening. Some of these participants were hearing about the disease for the first time: “I
heard about lung cancer, but I had not ever heard of this CRC that you're speaking of” (FG 2
Female 4- unscreened).
Healthy lifestyle. One focus group with mostly screened participants discussed factors
associated with a healthy lifestyle and the linkages to CRC. The adoption of western habits
was central to comparisons made between the prevalence of CRC in Canada and SA origin
countries. The discussion focused on lifestyle habits such as diet, physical activity and social
support: “I don't hear that much CRC exists in India… because people don't eat red meat at
all in India” (FG2 Female 5- screened); and “…socialising, people are not as isolated [in
India compared to Canada]” (FG2 Female 2-screened).
Purpose of screening. When asked if participants knew about CRC screening,
screened participants had a good understanding of the test and its rationale: “It [FOBT] finds
blood that you can't see in the feces. So if you have a lesion somewhere it will come through,
you know, and they can pick it out. It could be blood for other reasons also but that sets them
[physicians] thinking. And, then you can have more tests” (FG 3 Female 2 -screened). In
contrast, unscreened participants who heard about screening either knew it was for early
detection: “In Punjab, I know they go around and do these tests in many communities. Even
if people don‟t have symptoms, they do them anyway just as a precaution” (FG 4 Male 3-
unscreened); or they had no knowledge of the test or the purpose, “We have never heard that
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there is any test for cancer, except a urine test for bladder cancer, which I came to know
about when I came to Canada” (FG 5 Male 4-unscreened), and “For me it is the lack of
knowledge. Often, when there is something wrong, we are told to get the test done” (FG 1
Male 4- unscreened).
Desire to know. Most unscreened participants who had never heard about CRC and
screening expressed a keen desire to learn more with only a few who lacked interest. This
desire was expressed by further questions: “How do you feel when you have cancer? How do
you know…what are the symptoms when somebody has this cancer” (FG 4 Female 2-
unscreened). Interestingly, there were some screened participants also expressed a desire to
know more: “When you do this test and they suspect, what criteria do they use to discover
that there is a problem in the colorectal area…? What time is the best time for you to get the
best specimen” (FG 2 Male 1-screened).
Sub-theme: Experiential learning from focus groups. Sharing of experiences
resulted in experiential learning about CRC screening. The influence of others seemed to
motivate unscreened participants to ask their physicians about CRC screening. Two
participants stated: “Now that I know about it, I will go back [to my family physician] and get
it done” (FG 4 Female 8- unscreened); and, “Can you write down the name of this test and I'll
go home and get it done” (FG 2 Female 6- unscreened). A number of screened and
unscreened participants were also motivated by discussions and thought the investigator was
going to provide the test. These perceptions may have been generated by the investigator‟s
presence at recruitment sites several months prior to focus groups: “Yes, we should all get it
done. I see that it is beneficial. If you guys do it, then let‟s get it done” (FG 4 Male 5-
screened).
Sub-theme: Recommendations to raise South Asian community awareness. An
unexpected finding was the rich discussions on strategies to raise awareness about CRC
137
screening among screened participants in five focus groups.
Education in the community. Interestingly, when participants were asked what would
make it easy for them to participate in CRC screening, screened participants provided
suggestions on more public education: “I think community education is important too… They
could have that [education sessions] at different churches and different temples…” (FG 3
Female 2-screened). As well, participants believed that public education was more cost
effective than potential cancer treatment: “Its preventative and you know it's going to cost the
government less to educate their people than treat them” (FG 3 Female 2-screened).
Some unscreened participants stated they preferred seminars provided by SA
community educators to learn about CRC screening: “There is a Pakistani [Peer health
educator] woman… who used to visit us here. She was very good in terms of telling us what
[female cancer screening] tests to do; we need more like her” (FG 4 Female 11-unscreened).
Learning through seminars was preferable to reading: “We get good information at this
centre. I like hearing the information, especially medicine related and doctor related. It's
easier to understand a person talking about it rather than reading from a book.” (FG 2 Female
6-unscreened).
Use of media. Screened participants believed that media could be used to promote
education that was contextually relevant and accessible to SA immigrants, such as a cultural
newspaper: “If you have read about it, or thought about it, or seen it, the actual cases [CRC in
SA immigrants] that have taken place in Canada, then in your mind you think. „I could be one
of them‟, maybe education?”(FG 1 Male 3- screened). Specific TV and radio programs were
also recommended to increase CRC screening awareness: “Like other media, like doing the
radio, some people in Punjabi are doing TV too” (FG 6 Male 2-screened). One participant
proposed using a documentary to highlight advanced CRC: “In public education, I think
people should be shown what a colostomy looks like and/or ileostomy and the bags…If they
138
see all that, then I think they will not [disagree with having the test]... Aversion or no
aversion, you have to get it done” (FG 3 Female 2-screened).
Word of mouth. Another method of dissemination included using social connections
with family and friends to spread the word about CRC screening: “…well mostly, when
people get together they talk about that [CRC screening]. „Oh I went for the test and
everything is normal… you should go‟” (FG 3 Male 5-screened); and, “Sometimes friends
can inspire each other [to have CRC screening]” (FG 3 Male 5-screened).
Letters of invitation. Sending letters of invitation to SA immigrants who were due for
CRC screening was also proposed by screened participants who were well informed of
female cancer screening programs that used this method: “It's just like mammograms you
know; they send you the letter after two years. Then you know you are going” (FG 3 Female
1-screened).
3.4.3 Theme 3: Support and accessibility
Sub-theme: Family physician support. Participant discussions about the family
physician were central to support required to gain access to CRC and screening information,
a recommendation, and the test.
Recommendation. Screened participants had CRC screening because of a physician
recommendation and some were very knowledgeable about age of eligibility, interval timing,
and follow-up. A regular check-up with the physician was perceived to be a facilitator to
CRC screening: “I found out because of regular doctor's check-ups because he's the one who
knows [when the test is due]…” (FG 2 Female 2-screened).
Responsibility. The different physician prescribing practices for CRC screening were
also mentioned. Several unscreened participants felt it was the physician‟s responsibility to
order the test: “To me, if my doctor sent me, I would have gone. But I will not ask my doctor
„oh I want to go for this‟…It's the doctor's job to give it to you – [mimicking] 'Okay, now
139
you're old, you should go for this test - mammogram or Pap test‟. It's not my job!” (FG 2
Female 3- unscreened). Screened participants also believed the physician was responsible for
providing CRC screening information: “The family doctor should be responsible for
disseminating this information...Only then will the general population like us find out about
it, otherwise, we won‟t even know that such a test even exists” (FG 4 Female 6-screened).
Yet, other participants believed the entire health care team was responsible for enabling
access to CRC screening: “I think the main message here is to get these healthcare providers
to have well informed teams who will further inform us about these tests, and recommend it
to us in the timely fashion so we get it done” (FG 4 Male 9-screened).
Explanation. While some participants discussed having had CRC screening, it
seemed they had some knowledge gaps due to insufficient explanation from their physician:
“He didn't say anything. He didn't explain anything. He just said: over 50 years, everybody
has to go for this test‟” (FG 3 Female 3- screened); and, “No, actually, he didn‟t explain to
me anything [about the procedure], but he sent me for the test” (FG 6 Male 5- screened).
Enforcement. A number of participants irrespective of screening status believed the
physician should make CRC screening mandatory to increase uptake in their community:
“Yeah, doctors should enforce. I think it has to come from enforcement from the doctor” (FG
3 Female 6- screened); and, “Yes, but these doctors need to enforce it and be stricter” (FG 4
Female 11-unscreened).
Sub-theme: Ethnicity and gender of healthcare provider. A family doctor of the
same culture and of the same gender was discussed in two focus groups of primarily screened
participants. While cultural understanding was a key aspect in the health care encounter, the
ability to converse using the same language was also identified as important: “…South Asian
doctors, they can openly say or understand their [SA patients‟] feelings. It is not totally
clinical; there is an emotional factor. They will explain to them” (FG 2 Male 1- screened);
140
and, “Having a doctor from your own community is better because I don't understand English
that well. If its Hindi language, then I will understand better, especially if it is about medical-
related issues” (FG 2 Female 6-unscreened). Among several screened participants, there was
a preference for female practitioners because of language and comfort level: “My wife has a
different doctor. She has a female doctor and she speaks the same language” (FG 6 Male 2-
screened). Screened participants with knowledge of the nurse practitioner role believed they
would be ideally suited to provide CRC screening: “They're almost like doctors. A level
above the nurse, but below the doctor… at least they listen to you, not like the doctors” (FG 2
Female 5- screened). In contrast, one participant felt that irrespective of culture or gender, the
physician had to be understanding and treat people with respect and dignity: “As long as the
doctor is qualified and has his degrees and knows what he‟s doing. You know, a good doctor.
Not like a butcher, you know what I mean. As long as he's showing empathy and listening to
you. You're not just a number, you're there as a patient” (FG 2 Female 2- screened).
Sub-theme: System-level issues. Several participants felt the government should
mandate physicians to include CRC screening as part of the renewal process for a driver‟s
license: “I think that is a good idea. For example, making people get the medical test before
they renew their driver‟s license. Or after a certain age, when they are doing their physical,
they have to do this test too…” (FG 1 Male 4 - unscreened).
Time constraints in physician practice were believed to be a source of concern related
to being able to ask questions, especially with regards to screening exams. While physicians
had the authority to order screening tests and they appeared rushed during a visit, one
participant felt adamant that you had to ask about CRC screening: “If you ask them [about the
CRC test], you know there's no way they can tell you, „oh I'm not going to tell you, this is a
big secret.‟ So they have to tell you. So you have to feel important enough. After all, it's your
health. So you ask them questions, get them on a paper before you visit the doctor so that
141
even you don't forget it. Because sometimes it's like, you feel uncomfortable because you feel
the doctor is in a hurry sort of the moment he comes in, or he comes in, and is kind of trying
to see you out” (FG 3 Female 2-screened). Another participant felt that the physician was
unable to address multiple issues at one visit, let alone provide screening information: “My
family doctor always insists that I can only discuss one issue per visit. She does not want to
listen” (FG 5 Female 3– unscreened).
Sub-theme: Family and friends. In all focus groups, participants described the
family as a strong support network for health-related appointments. However, close friends
were also a support for single participants. Social support included family accompaniment to
screening and physician appointments: “…My wife and daughter are there, they will support
me. My family mostly helped me with the test…” (FG 1 Male 3-screened); and, “I have sons
who will take me wherever” (FG 4 Female 8-unscreened).
3.5 Implications for Practice and Research
This study makes new contributions to our understanding of SA immigrant‟s beliefs,
attitudes, and CRC screening behaviours in North America. Three dominant themes related to
CRC screening behaviours emerged: Beliefs and attitudes, Knowledge and awareness, and
Support and accessibility. The SA immigrants in this study represent the diversity of the
population in terms of origin region, religion, education, and socioeconomic status.
Consequently, findings reflect differing levels of knowledge of cancer and screening, and
screening status. SA immigrants provided insights that elucidated their current understanding
of CRC and screening, which may be useful to inform public health practice to increase
uptake.
The positive attitudes toward CRC screening such as “peace of mind” reinforced by
screened participants were expected findings given these individuals had a greater
knowledge-base. These findings align with other CRC screening literature among SA
142
immigrants‟ in the UK (Austin et al., 2009; Szcezpura et al., 2003), other immigrants‟ in the
UK (Robb, Solarin, Power, Atkin, & Wardle, 2008), and African Americans in the US
(Bauerle Bass et al., 2011). Unscreened participants discussed the relief and decreased worry
that would be experienced if one had screening. These findings may have been indirectly
influenced by the interaction between screened and unscreened participants during focus
groups.
Screened participants provided opinions of personal reasons and perceived benefits of
screening, and indirectly role-modeled positive screening behaviours. In contrast, unscreened
participants listened to stories, asked questions, and used learning to formulate decisions
about screening. The collectivist nature of the SA culture is important since family and close
friends provide advice and guidance on decision-making related to health (Ahmad et al.,
2004; Bottorff, Johnson, Venables, Grewal, & Popa, 2001; Oelke & Vollman, 2007). The
social interactions and peer influence within focus groups may have fostered normalization of
screening and perhaps reinforced its acceptability. Similar to other ethnic groups, social
networking and community outreach to under-screened persons were strategies proposed by
ever-screened African Americans (Bauerle Bass et al., 2011) or for health promotion among
SA immigrant women (Ahmad et al., 2004). Another potential strategy includes the use of
peer health educator approaches as they have the potential to increase screening rates among
Asian populations, and in turn, may reduce the gap in disparities with screening (Hou S-I.,
Sealy, & Kabiru, 2011). Our study highlights the potential use of story-telling approaches,
social networks, and peer influence as feasible health promotion programs targeting SA
immigrant communities.
Several attitudes about cancer and the need for CRC screening were related to a lack
of knowledge of prevention or screening, the belief that symptoms had to be present to have a
test, and the fear associated with cancer. A lack of knowledge of preventive care and
143
screening among immigrants may relate to the lack of exposure to this concept in countries of
origin (Oelke & Vollman, 2007; Lee et al., 2010b). Likewise, the belief that one had to have
symptoms or an illness in order to seek out health care or to have screening is a common
belief among immigrants (Austin et al., 2009; Lee et al., 2010b). Fear associated with cancer
was also identified among unscreened participants, a similar finding observed among SA
immigrants in other cancer screening studies (Ahmad, Mahmood, Pietkiewicz, McDonald, &
Ginsburg, 2011; Austin et al., 2009). A novel finding from this study was that several
screened participants believed that complete elimination through squatting and cleanliness
practices were preventive cultural practices lost upon immigration. These findings highlight
the need to incorporate awareness of screening as a form of prevention, cultural beliefs and
myths, and CRC risks when considering strategies to improve CRC screening uptake among
SA immigrants.
Cancer and screening knowledge differed among screened and unscreened
participants. Screened participants were more likely to be long-time residents of Canada,
have a greater knowledge of CRC, the risk factors and screening, as well as a better
understanding of the health care system. Greater years of residence in the host country have
been associated with cancer screening uptake (Glenn, Chawla, Surani, & Bastani, 2009).
Most unscreened participants resided in Canada for a shorter length of time, heard about CRC
and screening for the first time at the focus group, and provided stories of others afflicted
with cancer. Even though ninety percent of participants had a family physician, not all
participants had knowledge of CRC or screening. The general lack of knowledge of CRC
screening was related to a lack of awareness, or a lack of information or recommendation
provided by physicians or other primary health care providers. This is of concern given the
evidence based guidelines for CRC screening (Canadian Task Force on Preventive Health
[CTFPHC], 2001; U.S. Preventive Services Task Force, 2008) and the promotion of the
144
population-based screening program in Canada (Ontario Ministry of Health and Long Term
Care, 2012; Cancer Care Ontario, 2014). A lack of knowledge of CRC screening was a
common barrier to CRC screening among SA immigrants in the UK (Austin et al., 2009;
Szczepura et al., 2003), and for some, there was a reliance on the physician to order the test
(Austin et al., 2009). Involvement of the physician in the promotion of cancer screening was
similar to our findings, in that it was a recommended method to increase screening
knowledge and attendance in other studies (Ahmad et al., 2011; Austin et al., 2009). These
findings emphasize the need to use different strategies for recent and established SA
immigrants to promote CRC screening, and include physicians in the development of
culturally appropriate community-based strategies.
Discussions during focus groups centered on personal knowledge or experiences with
cancer, which were important conversations that facilitated learning more about CRC
screening. While unscreened participants drew mostly on experiences of other cancers
afflicting family, friends or community members, screened participants discussed what they
knew about CRC and screening, and answered others questions. The focus group provided a
social forum that fostered interaction and learning. Other research has shown that SA
immigrants learn about health promotion through social interactions with family, friends, or
community (Ahmad et al., 2004; Choudhry, 1998), and peer outreach (Ahmad et al., 2011).
For screened participants, they were more vocal in advocating for education strategies to
promote CRC screening in their community. Our study findings reinforce others work
showing that social networks, community leaders, community groups, and seminars
involving peer education are culturally appropriate strategies that can be used to disseminate
health promotion and cancer screening (breast, cervical, and CRC) information to SA
immigrants (Ahmad et al., 2004; Austin et al., 2009; Thomas, Saleem, & Abraham, 2005).
Places of worship and community centers were identified venues to promote CRC knowledge
145
and screening among SA immigrants, African Americans, and Spanish immigrants in a
number of qualitative studies (Austin et al., 2009; Banning & Hafeez, 2010; Bauerle Bass et
al., 2011; Thomson & Hoffman-Goetz, 2010). Media dissemination including documentaries
of people diagnosed with CRC was also a strategy proposed by Spanish immigrants in
another CRC screening study (Thomson & Hoffman-Goetz, 2010).
The physician was an important support and mediator to accessing information, and
well positioned to listen and encourage participants to obtain screening; a central thread
across all themes for screened and unscreened participants. The critical role of a physician
recommendation reinforces what others have found in female cancer screening studies among
SA immigrant women (Boxwala, Bridgemohan, Griffith, & Soliman, 2010; Gupta, Kumar, &
Stewart,2002; Somanchi, Juon, & Rimal,2010) and CRC screening among SA immigrants
and African Americans (Austin et al., 2009; Bauerle Bass et al., 2011). Preferences for
physicians of the same cultural background and/or female gender were also attributes echoed
in several screening studies among SA immigrants (Ahmad et al., 2011; Austin et al., 2009;
Oelke & Vollman, 2007). These findings point to structural barriers that ought to be
addressed by taking a systematic approach to improve access to CRC for multilingual and
ethnic minorities, including SA immigrant communities.
The desire for stricter physician enforcement of CRC screening was also an important
finding. The authoritative nature of the physician to recommend cancer screening uptake
among SA immigrants has been reported elsewhere (Austin et al., 2009; Thomas et al., 2005).
The CTPHC (2001) and the U.S. Preventive Services Task Force (2008) guidelines state that
all average risk people 50 years of age and older should have screening using FOBT
annually or biennially with colonoscopy follow-up for positive screens, or flexible
sigmoidoscopy every 5 years, or colonoscopy every 10 years. While this is best practice
based on evidence, screening is voluntary and there is dependence on the physician or other
146
health care provider to recommend screening.
Several screened participants indicated that they did not receive a detailed
explanation of CRC screening from their physician, yet they went for screening. Perhaps,
simply knowing that CRC screening is necessary and recommended by one‟s physician may
be sufficient for some individuals to have the test. Nonetheless, the responsibility of the
physician to inform and recommend CRC screening cannot be discounted, as they play an
important role in facilitating access and equity to increase uptake. Indeed, there is an ongoing
need to enhance socio-cultural training of healthcare providers, especially family physicians
to address the gap in CRC screening uptake at the population level. Key recommendations
from several studies included more physician engagement in the provision of information,
and further physician education to understand cultural beliefs, customs, and needs (Ahmad et
al., 2011; Thomas et al., 2005). As well, the current focus of attention on enhancing the
collaboration between primary care and public health has the potential to improve current
gaps in cancer screening experienced by ethnic and immigrant minorities (Institute of
Medicine, 2012).
Limitations. There were a number of limitations in this study. Participants were
recruited from temples and community centers in a mid-sized urban city in Canada, and may
differ from those who do not attend these social activities or reside in different settings.
Participants also had access to universal health care and most had a family physician, which
may differ from populations in other countries with different health system structures or
processes. The sample of unscreened participants in this study also may differ from other
under-screened or never-screened SA immigrants in other settings. South Asian immigrants
who agreed to participate were highly motivated and may differ from those who did not. The
mixing of the focus groups with screened and unscreened participants may have also
influenced some participants who may not have felt comfortable disclosing information
147
within a group setting. Several strengths of the study were the diversity of the focus group
sample and the fact that groups were conducted in participants‟ preferred languages with
special attention to reduce power differences between the investigator and participants.
3.6 Conclusion
This study is to our knowledge among the first to specifically examine CRC screening
behaviours from the perspective of SA immigrants in North America. Focus groups enabled
the exploration of beliefs and attitudes toward CRC and screening among a diverse SA
immigrant population. Novel findings that can influence screening uptake included: SA
bowel practices, experiential learning in focus groups, community-based strategies, and the
physician role in screening access. These findings provide insights into socio-cultural context
and beliefs, knowledge, barriers and strategies to promote CRC screening among unscreened
and screened SA immigrant communities. Findings such as the contribution of bowel
practices require further explanation to assess their prevalence and importance in diverse SA
immigrant populations.
This study also demonstrated that among a diverse sample, the majority of unscreened
SA immigrants were eager to learn and take up CRC screening. Sharing experiences and
stories of cancer and screening fostered peer learning in the focus groups for unscreened
participants. Unscreened participants who heard about screening for the first time saw its
potential to decrease worry, were motivated to gain further knowledge, and ask their
physician about the test. This was an important finding as it inadvertently promoted
screening. As well, participants felt that community education in common gathering places,
such as temples and community centers were strategies among SA immigrants that
considered collectivist values, and in turn, could increase knowledge and screening. For
some, this method was preferred over written material, thus, overcoming the literacy barrier.
Physicians are influential in providing information of the risks of CRC, explaining
148
the rationale for screening, and facilitating access to the test; all important elements to
increase uptake. While the physician cannot enforce screening, he/she is responsible for
conveying best practices with the aim of increasing screening uptake among under-screened
SA immigrant and other multi-lingual and ethnic populations. For some screened
participants, they took up screening without a full explanation from their physician, another
novel finding. Therefore, future research would be useful to explore if this is the case in a
larger population of SA immigrants. Future efforts should also focus on the development of
community-based strategies involving SA immigrants, family physicians and other health
care providers to increase uptake of CRC screening. Outcomes of these interventions could
then be evaluated through further research.
149
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Appendix A Focus group interview guide
1. Do you feel like you know something about colorectal cancer?
2. Is colorectal cancer a concern for you?
3. Does anybody know or has anyone heard about colorectal cancer screening?
4. Has anyone you know had a colorectal cancer test?
5. How do you feel about colorectal cancer screening in general?
6. What do you think are the benefits of doing colorectal cancer screening?
7. What are the disadvantages/bad things about doing colorectal cancer screening?
8. In your family or network of friends, do you have those who would support you in having
colorectal cancer screening?
9. Are there people in your life who may not support colorectal cancer screening?
10. What are the things that make it easy for you to have colorectal cancer screening?
11. What are the things that make it hard to have colorectal cancer screening?
12. What are the reasons that you have NOT or DO NOT want to have colorectal cancer
screening?
13. What are the reasons that you DID have or WOULD have colorectal cancer screening?
14. For people who had screening: Think back on the most recent experience.
a) What test was it?
b) How did you feel about the process?
c) What concerns or fears did you have?
d) Where there any surprises for you? If yes, what?
e) Was there anything that you think would have made the experience more positive?
15. What would you tell someone who was debating whether or not to be screened?
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Chapter Four
Phase 3 Survey Development Study
Development Process (Part 1)
This chapter reports on the survey development phase of the exploratory sequential
mixed method study. The ultimate use of the survey will be to describe or predict factors that
influence colorectal cancer screening uptake among South Asian immigrants, and to advance
understanding of these factors in order to inform interventions to increase screening uptake in
Ontario. This chapter discusses the methods used to construct the Colon Cancer Screening
Survey developed for use with South Asian immigrants in Ontario, Canada, which is
presented in a manuscript format.
The first objective of this study was to identify key concepts for inclusion in a survey
using the results of the scoping and focus group studies (Chapter 2 and 3). Existing health
behaviour models/theories were then revisited (Chapter 1) to assess if behavioural concepts
within these models/theories aligned well with key concepts (Appendix A Glossary of terms).
A conceptual model was developed, including key concepts, modifying factors and
behavioural outcomes that would need to be included in the survey. A literature search was
conducted to identify articles that reported on pre-existing candidate measures that aligned
well with each of the defined concepts. These candidate measures were then tested for their
conceptual alignment with their intended target using a standardized critical appraisal
technique called: Evaluating the Measurement of Patient-Reported Outcomes (Valderas et al.,
2008). Finally, consultation with expert advisory group and committee members was carried
out for decision-making on candidate measures that aligned best with key concepts, and
additions and modifications to measures to be included in the survey.
158
4.1 Background
Population-based screening programs have been instrumental in promoting colorectal
cancer (CRC) screening to the average risk population. Yet, disparities in CRC screening
uptake exist for South Asian (SA) immigrants. While prior studies have found disparities in
uptake of CRC screening among SA immigrants in the United Kingdom (UK), United States
of America (USA), literature reporting on CRC screening uptake among SA immigrants in
Canada is limited. What is known is that recent residents or immigrants (< 5 years) in Ontario
had persistently lower rates of CRC screening when compared to long-term resident
populations (>5 years) (Honein-AbouHaidar et al., 2013). Though access to screening in a
publically funded health care system should be equitable, factors influencing uptake of cancer
screening are likely to differ between native-born residents and immigrant populations.
A scoping study examining cancer screening behaviours among SA immigrants in the
UK, USA, and Canada identified beliefs related to socio-cultural context of screening,
perceptions of health, self-perceived risk, barriers, knowledge gaps, and gender differences
that influence uptake (Crawford, Ahmad, Beaton, & Bierman, 2015a). Because most studies
undertaken were focused on female cancer screening (i.e. breast and cervical) among SA
immigrants, the literature lacked the male perspective in relation to CRC screening (Crawford
et al., 2015a; see full description of these results in Chapter 2). Several studies from the UK
and the USA assessing CRC screening among SA individuals identified factors that influence
uptake, such as low self-perceived risk, beliefs of CRC and screening, and barriers to
screening (Austin et al., 2009; Menon, Szalacha, Prabhughate, & Kue 2014; Szczepura et al.,
2003). However, these studies may not be transferable to the SA immigrant community in
Canada due to the heterogeneity of migrant populations, economic and political histories, and
socio-cultural context of settlement country.
159
Two studies undertaken in Ontario, Canada focused on the factors that influenced
screening for breast, cervical, and CRC including both genders; however, barriers to
screening were analysed together for all three cancer types and thus, provided limited
understanding of factors that specifically influenced CRC screening (Gesink et al., 2014;
Lobb, Pinto, & Lofters, 2013). Breast, cervical and CRC screening should be examined
individually because factors that influence screening uptake will be dependent on different
screening modalities, individual preferences, and individual or structural specific barriers,
which may differ by test and by gender (Pasick, Hiatt, & Paskett, 2004).
To gain further understanding of factors that influence CRC screening among SA
immigrants in Canada, a qualitative study explored SA immigrants‟ perspectives of CRC and
screening in preparation for survey development (Crawford, Ahmad, Beaton, & Bierman,
2015b). The findings provided new insights into socio-cultural context, beliefs and attitudes,
levels of knowledge, available supports, and access related to CRC and screening among SA
immigrants in Ontario, Canada. Thus, key concepts that would need to be measured in a
survey to assess factors that influence CRC screening among SA immigrants in Canada were
identified (see full description of these results in Chapter 3).
The assembly of measures into a survey that is culturally appropriate requires a clear
understanding of concepts that are relevant and applicable to the SA immigrant populations‟
understanding of CRC screening. The purpose of this survey development paper is to report
on these key concepts, the results of the search for pre-existing candidate measures, and a
description of measures included within a survey that would be most useful in understanding
factors that influence CRC screening among SA immigrants in Ontario, Canada.
4.2 Methods
The overall aim of this project was to develop a culturally adapted Colon Cancer
Screening Survey for average risk SA immigrants 50-74 years of age in Ontario, Canada.
160
To meet this aim, four main objectives needed to be met. The first objective was to identify
relevant concepts, define key concepts, and construct a conceptual model. The second
objective was to identify pre-existing candidate measures that aligned best with the
measurement need, and identified key concepts. For the third objective, candidate measures
were critically appraised for conceptual integrity based on guidelines from the Scientific
Advisory Committee of the Medical Outcomes Trust (2002), and operationalized through the
Evaluating the Measurement of Patient-Reported Outcomes (EMPRO) tool (Valderas et al.,
2008). A final objective was to consult experts for decision-making: an advisory group
provided input on candidate measures that aligned best to key concepts; and, a committee
with expertise in measurement provided feedback on additions to be made to fill missing
content in selected measures, and for modifications to some items. A flow diagram of specific
methods taken to develop the survey is represented in Figure 1.
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Figure 1. Flow Diagram of Methods
Identify factors that influence cancer
screening from prior cancer/CRC
screening among SA immigrants
Reviewed concepts most relevant
to SA immigrants from findings
from scoping study and focus
group study
Concepts
Concepts identified to be
measured that would be included
in the survey (i.e. beliefs and
attitudes, knowledge, barriers,
social support)
Reviewed health behaviour
model/theory
To assess if behavioural
concepts aligned with
key concepts
To operationalize concept
definitions
Conceptual Model
Literature Search
Searches of the literature to identify candidate measures
Selection criteria Articles describing candidate measures (i.e. conceptual
content and measurement properties)
Critical appraisal using EMPRO tool
Candidate measures critically appraised using conceptual
measurement model criteria
Candidate measures that met criteria were selected
Advisory group meeting with three experts for decision-
making on candidate measures to select for inclusion
Expert committee review with three experts in survey
measurement to discuss further content to be added and
modifications to selected measures and items
Initial assembly of survey completed
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4.2.1 Concepts to be included in the screening survey
Key concepts were derived from findings that reported on factors that influenced
cancer and CRC screening screening among SA immigrants in prior studies (Crawford et al.,
2015a, b; Chapter 2 and 3 of this thesis). As an important initial step, it was essential to
identify and define key concepts related to CRC screening that were most salient to SA
immigrants. A scoping study elucidated on factors that influenced cancer screening
behaviours among SA immigrants, such as beliefs related to cancer including fatalism, the
importance of family, low self-perceived risk, low confidence, and peace of mind related to
early detection (Crawford et al., 2015a). A focus group study elaborated on factors
specifically related to CRC and screening and uncovered beliefs that early detection was
beneficial, the belief that cancer was scary or not a risk, varying levels of knowledge, and the
importance of family physician support (Crawford et al., 2015b). The key concepts related to
cancer and CRC screening most relevant to SA immigrants are listed in Table 1.
Situated within Critical Social Theory, the researcher was aware of social processes
and contextual variables that intersect to influence decision-making about health behaviours,
particularly for diverse SA populations (Kincheloe, McLaren, & Steinberg, 2011). Therefore,
contextual factors that influenced screening among SA immigrants included prior history of
screening, regular care provider, long term residence, higher education, and income
(Crawford et al., 2015a).
To guide survey development, a conceptual model was created incorporating
identified key concepts of interest and matched behavioural concepts from health behaviour
theories, contextual factors that influenced screening, and behavioural outcomes. Key
concepts of interest were charted and previously identified health behaviour models and
theories (Chapter 1) were examined to ascertain if key concepts for this study mapped well to
behavioural concept definitions. Behavioural concepts from the Health Belief Model
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(Rosenstock, Stretcher, & Becker, 1988), and the Theory of Planned Behavior (Ajzen, 1991)
aligned best with key concepts, and thus were suitable to use. To operationalize definitions,
behavioural concept definitions remained consistent with the theoretical concepts in the
Health Belief Model (HBM) and the Theory of Planned Behaviour (TPB) with the addition of
the behaviour assessed, CRC screening (i.e. home stool test, and colonoscopy screening), and
of relevance to the target population, SA immigrants (Champion & Skinner, 2008).
4.2.2 Conceptual model
Individual beliefs represent key concepts relevant to SA immigrants, with theoretical
foundations in the HBM and the TPB (see Figure 2). Modifying factors represent contextual
factors, such as history of screening and access, and population characteristics. Each
component of the conceptual model has been shown to relate to behavioural outcomes of
CRC intention and screening uptake or adherence (Ajzen, 1991; Rosenstock et al., 1988). The
proposed relationships between individual beliefs, modifying factors, and behavioural
outcomes are illustrated in Figure 2. The model as depicted is consistent with the exploratory
aims of this work and aligns well with the guiding framework of Critical Social Theory.
Individual beliefs. Each key concept listed under individual beliefs plays a role in
directly influencing CRC screening intention or adherence among SA immigrant populations
(Ajzen, 1991). In the conceptual model, these key concepts equally influence CRC screening
intention or adherence with no clear relationship between concepts. Therefore, it will be
important to test the model and the degree of influence of each key concept over another in
terms of influencing behavioural outcomes because it is not known at present. The influence
of culture may also impact the relationships between key concepts, and in turn behavioural
outcomes, so testing of this model will be important to assess if these relationships relate in
the same way as proposed by the HBM and the TPB (Ajzen, 1991; Rosenstock et al., 1988).
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Figure 2. Conceptual Model: To guide survey development for assessment of factors that influence colon cancer screening
Personal history of
colon cancer
screening
Past history of
other cancer
screening (i.e.
breast and
cervical)
Regular Primary health
care provider
Physician
preferences (i.e.
culture or gender)
Age 50-74 years
Gender (male or
female)
Country of origin
Years in Canada
Ethnic /Religious
Background
Marital status
Family household structure Income
Education
Individual Beliefs KEY CONCEPTS
Perceived
susceptibility
Perceived
severity
Perceived
benefits
Perceived
barriers
Perceived
self-efficacy
Subjective
norm
Behavioural
Outcome
CRC Screening
Uptake or Adherence
(i.e. having ever had,
or current screening)
Modifying Factors HISTORY OF SCREENING &
POPULATION
CHARACTERISTICS
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Behavioural concepts were drawn from the HBM and the TPB and combined in the model to
operationalize key concepts. Combining behavioural concepts from two health behaviour
theories to be used to measure behaviours in survey development is feasible and
recommended as it capitalizes on relevant key measures that explain complex screening
behaviours (Rakowski & Breslau, 2004).
Both the HBM (Rosenstock et al., 1988) and the TPB (Ajzen, 1991) have been used in
prior research to examine CRC screening among diverse populations (Green & Kelly, 2004;
McCaffery, Wardle, & Waller, 2003; Menon et al., 2014; Wardle et al., 2003). The
combination of concepts from the HBM and the TPB within a survey questionnaire is feasible
as they are both derived from explanatory theories (Champion & Skinner, 2008; Montano &
Kasprzyk, 2008). Both the model and theory include the value-expectancy theory where
individual‟s expectations and subjective assessment of the behaviour if it is performed will
result in a specific outcome (Champion & Skinner, 2008). For example, if an individual
places value on preventing disease, then they will expect that screening (the behaviour) will
prevent disease. Similarities of the HBM and the TPB include: attitudinal/behavioural beliefs,
self-efficacy/perceived behavioural control, normative beliefs or subjective norm/cues to
action, and the behavioural outcome (Noar & Zimmerman, 2005). While the HBM contains
perceived susceptibility and perceived severity, the TPB incorporates behavioural intentions
(Noar & Zimmerman, 2005). Several studies have combined concepts from both into a single
survey to assess CRC screening behaviours (Palmer et al., 2007; Zheng, Saito, Takahashi,
Ishibashi, & Kai, 2006). In these studies, the relationships between health beliefs, attitudes,
contextual variables and intention to have CRC screening or adherence were examined.
Key concepts in the conceptual model. The HBM was used to operationalize
definitions for five key concepts, perceived susceptibility, perceived severity, perceived
benefits, perceived barriers, and perceived self-efficacy (Rosenstock et al., 1988). The TPB
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was used to operationalize one concept, subjective norm (Ajzen, 1991). The key concepts
presented in Figure 2 are described further (also see Table 1 for conceptual definitions).
Perceived susceptibility is defined as the self-perceived risks associated with CRC
(Champion & Skinner, 2008). If individuals do not see themselves as being at risk for a
common form of cancer, they will not seek out or take up the behaviour, CRC screening. This
concept emerged from SA immigrant‟s lack of knowledge of risk and low self-perceived
susceptibility to cancer or CRC (Crawford et al., 2015a, b). Perceived severity relates to the
individual belief of the serious nature of CRC, its social or physical impact, and appraisal if
not treated (Champion & Skinner, 2008). Severity and susceptibility of cancer are considered
together in the HBM as the perceived threat of disease. South Asian immigrants believed
cancer was scary because it was associated with poor outcomes and there was a sense of
fatalism because it was perceived to be incurable (Crawford et al., 2015a, b).
Perceived benefits are beliefs that CRC screening results in a benefit, whereby, the
CRC threat would be reduced (Champion & Skinner, 2008). An individual may perceive that
cancer is a threat but they will only have screening if they believe there are benefits. The
benefits of screening for SA immigrants related to early detection and greater odds of
survival, and reduced worry (Crawford et al., 2015a, b). Perceived barriers were linked to
factors that impede decisions to act on CRC screening (Champion & Skinner, 2008).
Individuals will assess benefits and barriers before determining if they will engage in
screening. Individual and structural barriers reported by SA immigrants included lack of
knowledge, language, cost and time, or physician recommendation for screening (Crawford et
al., 2015a, b).
Perceived self-efficacy is concerned with the individual‟s confidence in their ability to
complete CRC screening (Champion & Skinner, 2008). The individual has to feel the threat
of a disease and believe that change will result in a benefit, but they also require confidence
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in overcoming individual barriers to make the change and obtain screening. Self-perceived
confidence was related to findings of low confidence associated with completing the stool
test or preparation for flexible sigmoidoscopy, and high confidence associated with uptake of
mammography screening among SA immigrants (Crawford et al., 2015a). Subjective norm is
related to the normative beliefs of others expectations and influence to perform CRC
screening, and the ability of the individual to comply (Montano & & Kasprzyk, 2008). If an
individual believes their family thinks they should engage in the behaviour and is motivated
to do so, then they have a positive subjective norm. In contrast, if they feel the individual
should not perform the behaviour, they will have a negative subjective norm (Montano &
Kasprzyk, 2008). The family and family physician were important influences that contributed
to cancer screening participation among SA immigrants (Crawford et al., 2015a, b).
Modifying factors. According to the HBM, key socio-demographic factors in a
specific population act as modifiers in that they indirectly influence perceived susceptibility,
perceived severity, perceived benefits, perceived barriers, self-efficacy, and subjective norm.
The modifying factors in Figure 2 are discussed further in the following paragraphs.
History of screening. The collection of data on personal history of CRC screening,
and uptake of other cancer screening tests assesses whether prior cancer screening
participation influences CRC screening uptake. The primary care physician was central to
support and access to CRC screening (Crawford et al., 2015b). Gender and cultural
preferences of family physicians were important to SA immigrants, and also may play a role
in influencing screening uptake. This is also consistent with the emphasis on context by the
overarching paradigm of Critical Social Theory generally guiding this research.
Population characteristics. Socio-demographic characteristics that influenced CRC
screening uptake among SA immigrants were drawn from the literature (Crawford et al.,
2015a). Age may influence screening decision-making, and screening uptake differs among
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SA immigrant males and females. To describe the diversity of SA populations immigrating to
Canada, their country of origin is assessed. Length of residence, a proxy measure for
acculturation has been associated with CRC screening. Self-identification of ethnicity or
religious background describes the population and differences in screening uptake. Marital
status and family household structure provide contextual data of social network systems,
which may influence CRC screening uptake (Crawford et al., 2015a, b). Education,
employment, and income are linked to socio-economic status and related to CRC screening
uptake (Crawford et al., 2015a).
Behavioural outcomes. The HBM and the TPB were instrumental in defining
relationships that lead to CRC screening intention and uptake or adherence, two behavioural
outcomes in the conceptual model.
CRC screening intention and uptake. As depicted in Figure 2, modifying factors and
individual beliefs influence intention or adherence (uptake) to CRC screening. Screening
intention is a precursor to having CRC screening, while adherence is based on compliance
with CRC screening guideline recommendations set out by the Canadian Task Force for
Preventive Health Care (2001) and US Preventive Services Task Force (2008). According to
the HBM, and TPB, key concepts of perceived susceptibility, perceived severity, perceived
benefits, perceived barriers, perceived self-efficacy, and subjective norm directly influence
CRC screening intention and/or screening uptake, while contextual or modifying factors
indirectly influence CRC screening intention and uptake of regular screening (Champion &
Skinner, 2008; Montano & & Kasprzyk, 2008). Factors that influenced cancer screening
uptake among SA immigrant populations included beliefs, attitudes, and barriers, and
contextual factors such as length of residence, education or income (Crawford et al., 2015a).
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4.2.3 Literature search for candidate measures
The search for pre-existing candidate measures was guided by DeVellis framework
(2012) and university librarian support and recommendations. The rationale for searching the
literature was: (a) to determine if it was possible to use pre-existing validated measures that
aligned well to key concepts; (b) to use them as a measure for comparison to defined
concepts; and, (c) to determine boundaries of what is useful and what is not for the purpose of
the survey (Guyatt, Bombardier, & Tugwell, 1986; Kirschner & Guyatt, 1985).
A literature search was undertaken to identify articles that reported on pre-existing
candidate measures that aligned best with concepts in the conceptual model; perceived
susceptibility, perceived severity, perceived benefits, perceived barriers, perceived self-
efficacy, subjective norm, and CRC screening practices and behavioural outcomes (i.e.
knowledge of test, intention and adherence). The purpose was to identify measures that
examined factors that influenced cancer screening among diverse populations. Five databases
were searched: Ovid Medline [1946 to March Week 1 2015], EMBASE [1947 to 2015 March
09], PsychoINFO [1806 to March Week 1 2015], CINHAL [1988 to 2015, March 9], and
Health and Psychosocial Instruments [1985 to March 2015]. Grey literature from websites
was also searched, such as the UK Bowel Screening Program and Cancer Research UK.
Reference lists were also reviewed.
Search terms were grouped into three categories. The first category was focused on
the population and specific disease, for example, the sample of participants who were
questioned about cancer screening. The second category included the type of measures
(instrument), for example key terms related to beliefs, attitudes, and behaviours. The third
category incorporated terms on measurement properties, for example the tests used to assess
reliability and validity of measures (see Figure 3). Key Medical Subject Headings (MeSH)
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terms were exploded, and free key term searches were used, as well as Boolean operators
“or” and “and” to combine results.
An initial search of literature by population and disease, and type of measures resulted
in significant citation returns including literature that was not relevant, such as articles
reporting on cancer screening procedures, exploratory qualitative studies, and effectiveness
studies for different types of cancer or screening interventions. Therefore, a more
focused search including free key terms relating to measurement properties (i.e. reliability)
was conducted following methods and search terms provided by the University of Toronto
librarian (Figure 3). This restricted citation returns to those describing or testing relevant
measures. However, this search strategy may have missed some untested measures.
Figure 3. Literature Search Terms for Ovid Medline
Population and disease
1
2
3
4
5
Neoplasms
colorectal neoplasms
breast neoplasms
early detection of cancer
colorectal cancer screening
6 OR/1-5
Measures (instruments) that assessed beliefs, attitudes,
and behaviours
9
10
11
12
13
attitude to health
health attitudes
health behaviour
health beliefs
patient beliefs
14 OR/9-13
Measurement properties
15
16
17
18
19
20
21
22
23
reproducibility of results
reliability
test- retest
variance
repeatability
stability
Cronbach‟s alpha
Cronbach‟s
Congruence
24 OR/15-23
25 6 and 14 and 24
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A combined total of 426 citations were returned. A review was completed to identify
measures in journal articles that contained concepts that aligned most closely to key concepts
relevant to CRC screening among SA immigrant populations (See Table 1). In selecting
articles, the following inclusion criteria were applied: (a) availability in the English language;
(b) any cancer screening procedure; (c) an examination of beliefs, attitudes, behaviours, or
knowledge using designated measures; and, (d) any population. No restrictions were placed
on the study population at this point because it was more important to identify all potential
measures. Excluded citations were duplicates, dissertations, reviews, conference abstracts,
books, and articles that did not report on relevant measures. A total of 142 citations remained
after applying inclusion and exclusion criteria.
Of the 142 articles reporting on cancer screening, 72 focused on CRC screening, 50
were focused on breast cancer screening, and 20 on other screening such as prostate, cervical,
or skin cancer screening, or on cancer in general. Upon closer examination, 78 articles were
primarily application studies that used a previously developed measure or created one from
prior literature to examine predictors or cancer screening behaviours; therefore, they were
excluded from further review. The remaining 64 articles reported on a newly developed
instrument, previously created measures, or modified/adapted measures. Quite a number of
articles reported on measures that had been initially developed to examine factors that
influenced breast cancer screening and were later adapted by authors to assess CRC screening
(Green & Kelly, 2004; Jacob, 2002; Kharameh, Foroozanfara, & Zamanian, 2014; Rawl et al,
2001). Therefore, it was determined to focus on measures that examined factors that
influenced CRC screening because of the unique difference in screening procedures such as
sensitivity around colon health.
Of the 64 articles, 24 focused on CRC screening and specific measures used to
examine beliefs, attitudes, facilitators, and barriers, thus they were selected for detailed full-
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text review as they were deemed the most likely to produce information on the measurement
instruments to include in the survey. Most studies focused on assessment of one type of
cancer screening. After careful review, 19 articles were excluded because: (1) concepts
measured did not closely align with key concepts, n=15; and (2) there were limited or no
details on conceptual measurement origins or definitions, n=4.
Five published survey questionnaires (Leung, Wong, & Chan, 2014; Ozsoy, Ardahan,
Ozmen, 2007; Rawl et al., 2001; Flight, Wilson, McGillivray, & Myers, 2010; Vernon et al.,
2004) included measures covering 80% of conceptual needs as they closely matched key
concepts relevant to the SA community (see Table 1 for candidate measures). These survey
questionnaires included the most promising measures because: (1) the origins of the measures
were based on health behaviour theory with a long history examining cancer screening
beliefs, attitudes, facilitators, and barriers; (2) the measures were previously validated in
other contexts with different populations; and (3) they were the most well-aligned measures
to the defined concepts, and they provided enough detail to assess conceptual and
measurement model. In selecting pre-existing candidate measures, it is acknowledged that
they would need some modification to be culturally relevant, and therefore, would need to
have testing of psychometric properties in the SA immigrant population. All selected articles
utilized prior measures based on the HBM (Rosenstock et al., 1988) and the TPB (Ajzen,
1991). Rawl et al. (2001) modified perceived benefits and perceived barriers from
Champion‟s (1995) breast cancer screening measures. Ozsoy et al. (2007), and Leung et al.
(2014) used previously adapted CRC screening measures (perceived susceptibility, perceived
severity, perceived benefits, and perceived barriers) originally drawn from Champion (1984)
and Champion and Scott (1997) from breast cancer screening measures, and subsequently
adapted by other authors (Green & Kelly, 2004; Jacobs, 2002). Flight et al. (2010) utilized
prior measures (perceived susceptibility, perceived self-efficacy, and subjective norm) drawn
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from Vernon et al. (1997) that were based on a number of health behaviour theories including
the HBM (Rosenstock et al., 1988) and Theory of Reasoned Action (Ajzen, 1991). Vernon et
al. (2004) developed self-report measures for CRC screening awareness and adherence.
Selection of measures based on measurement need. A measurement need is defined
by the researcher or clinician as their intended application of the measure. This includes their
clear definition of the target concept (perceived susceptibility, perceived severity, perceived
benefits, perceived barriers, perceived self-efficacy, and subjective norm), the intended
population (SA immigrants) and the intended purpose (to describe or predict factors that
influence CRC screening intention and adherence).
The first and often overlooked step in deciding if an existing measure should move
forward is that there must or should be a match between the conceptual focus and content of
the measure and the intended target (measurement need) (Beaton et al., 2015; Scientific
Advisory Committee of the Medical Outcomes Trust, 2002). A standardized critical appraisal
tool is valuable to assess the strengths and weaknesses of the conceptual and theoretical
model, and psychometric properties of measures identified from the literature to determine
whether to utilize pre-existing measures; the EMPRO tool is such a measure (Valderas et al.,
2008). Content used to develop the EMPRO tool was derived from the Scientific Advisory
Committee of the Medical Outcomes Trust (2002), and evaluation metrics were derived from
The AGREE collaboration tool (2003). The EMPRO tool consists of eight attributes
comprised of 39 items including: the conceptual and measurement model, reliability, validity,
responsiveness, interpretability, burden (administrative and respondent), alternative modes of
administration, and cross-cultural and linguistic adaptations (Valderas et al., 2008).
Initially, it was most relevant to assess the conceptual and measurement model of
candidate measures and the alignment to key concepts; therefore, specific criteria from the
EMPRO tool that related to the conceptual match between the measure and measurement
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need were used. This included nine items, a set of cueing statements for what should be
considered in responding and a set of four response options. Seven items assessed adequacy
of description of the concept, intended target population, and associations between concepts
(Valderas et al., 2008; see Table 2). One item was drawn from the EMPRO‟s content validity,
and assessed the degree to which the instrument measures what is intended. A final item was
drawn from the burden criteria on response burden; the demands placed on the participant in
completing the measure.Therefore, the following description relates to the critical appraisal
of the conceptual match, content validity, and response burden used to assemble a survey;
however, this stage is only the preliminary step in a full review of measurement properties
that would be required. Further assessment of reliability and validity of conceptually derived
measures in the survey would need to be conducted at a later date.
To ensure robust evaluation, two appraisers (one with expertise in development,
validation, and/or use of patient reported outcome measures, and one with expertise in CRC
screening content, and working with SA populations) independently reviewed the first set of
articles reporting on two measures. Critical appraisal using EMPRO‟s approach to conceptual
match, content validity, and response burden (along with calculation of scores) was then
completed independently by the two appraisers. After independent assessment, a meeting to
discuss results was held among the two appraisers where a consensus was reached.
The remaining critique of articles of candidate measures was completed by one
assessor and for each of the nine criteria used, scoring ranked adequacy of meeting each
criteria. As shown in Table 3, of the 15 measures assessed, all met EMPRO criteria for
conceptual match, albeit with some variability in scores ranging from two to the highest
possible score of four. For content validity and response burden criteria, scores were lower
ranging from one to three. Overall assessment was determined and measures received either a
“strong recommendation” or “recommendation with potential alterations”, which were
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considered acceptable to include as candidate measures. Although measures provided a good
overall match, the critical appraisal identified that seven measures assessed required
additional content to fully capture the measurement needs. Further decision-making on which
measures were most aligned to key concepts in the conceptual model were determined
through expert advisory group consultation, and thereafter through committee review with
measurement experts. Table 4 provides a summary of candidate measures that were discussed
with an expert advisory group to select relevant measures to include in the survey.
4.2.4 Consultation with experts
The final objective was facilitated through consultation using an advisory group
meeting with public health experts (n=3) with a long history promoting outreach for cancer
screening, and conducting participatory research with immigrant communities in Ontario,
Canada. These experts contributed to decision-making on selected candidate measures to be
included in the survey. Consultation used a nominal group technique; a feasible structured
approach to obtain input about CRC screening measures developed for the SA immigrant
population (Luboldt et al., 2004; Potter, Gordon, & Hamer, 2004). The objective of the
meeting was first to present the purpose of the meeting, and provide an overview of studies
reporting on factors that influenced cancer and CRC screening (Crawford et al., 2015a, b).
The next objective was to discuss key concepts and their alignment to candidate measures.
Feedback was also obtained on other contextual variables and measures for behavioural
outcomes. The final objective was to discuss outcomes of voting and selections.
The process of determining the best candidate measure involved providing the
specific definition of key concepts for review through a presentation and an accompanying
hand-out. Each candidate measure was then reviewed to ascertain the best well-articulated
measure for selecting key concepts that assessed beliefs, attitudes, facilitators, and barriers
that influenced CRC screening intention and adherence. The goal was for advisory group
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members to identify if candidate measures chosen aligned to defined concepts. Advisory
group members were cautioned that the measures would not be perfect, but they had to be as
close as possible to key defined concepts. Voting cards were given to each member, and they
were to mark their selections along with any additional comments. Comments were discussed
among the group once voting was completed. Throughout the meeting, notes were taken to
record all aspects of the decision-making process. Results of the advisory group meeting are
provided in Table 5. Advisory group members provided input on measures that were easy to
understand and aligned with defined concepts, or excluded measures that were too lengthy,
not clear, or lacked alignment to key concepts. They also provided feedback on where
problems may arise with selected items of measures that would be included in the survey.
This feedback was noted for later use during pre-testing with cognitive interviews.
Expert committee review. While content expert advice was very important, the final
decision lay with the researcher and measurement experts involved in the research (DeVellis,
2012). After the advisory group meeting, experts in community and measurement convened
for decision-making regarding additions and modifications to be made on measures in the
survey. Additional items (20%) were needed for measures to cover content from key concepts
that were missing (discussed further in next section), as well as modifications were made to
select items in measures (see Table 5 for additions and modifications). The English language
survey, known as the Colon Cancer Screening Survey includes 84 questions (Appendix B).
4.3 Colon Cancer Screening Survey
The survey is comprised of four sections (see Appendix B). Section one and two
includes nine items assessing self-report knowledge and uptake of colon cancer screening
(i.e. fecal occult blood test and colonoscopy), and future intention to get colon cancer
screening drawn from measures in the literature (Vernon et al., 2004). The third section
contains six measures (perceived susceptibility, perceived severity, perceived benefits,
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perceived barriers, perceived self-efficacy, and subjective norm) representing the key
concepts within the conceptual model. Perceived susceptibility (5 items, #10-14 in survey)
and perceived severity (7 items, #16-22 in survey) measures were drawn from Ozsoy, et al.,
(2007). Measures of perceived benefits (5 items each; home stool test, #25-29 in survey; and
colonoscopy, #31-35 in survey) and perceived barriers (8 items for home stool test, #37-44 in
survey; and 10 items for colonoscopy, #48-57 in survey) were drawn from Rawl et al. (2001).
Self-efficacy (5 items, #58-62 in survey) and subjective norm (4 items, #65-68 in survey)
measures were drawn from Flight et al. (2010). The fourth section contained items capturing
population characteristics.
Additional questions to fill content. While good conceptual matches of measures
were found after EMPRO assessment and advisory group decision-making, some measures
were missing important content identified in prior research that were most relevant to SA
immigrants in relation to CRC screening (Crawford et al., 2015a, b). To address these gaps, it
was important to return to the literature in search of measures that addressed the missing
content. Returning to prior literature that reported on cancer screening beliefs, attitudes, and
behaviours enabled the identification of specific items to fill missing content. The items were
then added to the appropriate measure.
Added items. Eleven items that represented additional content in six measures were
added to the survey (see Appendix B). One item was added to perceived susceptibility (#15 in
survey) that considered the age of risk for CRC (Messina, Lane, & Grimson, 2005) and two
items addressing fatalistic views were added to perceived severity (#23 and #24 in survey;
Shokar et al., 2008; Straughan & Seow, 1998). Two items, one for the home stool test and
one for colonoscopy were added to perceived benefits (#30 and #36 in survey) to reflect
peace of mind related to CRC screening (McGregor et al., 2015). Three items were added for
perceived barriers (#45, #46, and #47 in survey) related to the home stool test in relation to
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lack of knowledge and access, language barrier, and lack of physician recommendation
(Menon, Szalacha, Prabhughate, 2012; Menon et al., 2014). Two items were added for
perceived self-efficacy (#63 and #64 in survey) to reflect confidence in properly completing
the home stool test and regular adherence to screening (Beydoun et al., 2014; McGregor et
al., 2015). For subjective norm, an additional item was added (#69 in survey) that was
developed by the researcher to capture the influence of family and friends on decision-
making related to health and uptake of CRC screening (Crawford et al., 2015a, b).
CRC practices and socio-demographic additions. Three additional items were added
to assess intention to have CRC (see Appendix B); two items taken from prior literature (#4
and #5 in survey; Myers et al., 1994), and one item developed by the researcher (#6 in
survey). Four additional demographic items were added to mirror important variables
identified in prior studies in relation to SA immigrants: preference for a family physician of
the same culture or gender (items #81, #82 and #83 in survey); and the influence of prior
population-based cancer screening tests such as breast and cervical cancer screening (item
#84 survey) on participating in CRC screening (Crawford et al., 2015a, b).
Modifications to questions from existing measures and added items. A number of
modifications were required related to the wording of some items across measures (see
Appendix B). Colorectal cancer and colon cancer were used in selected measures, and in
order to simplify and be consistent, colon cancer was used throughout the survey. For tests,
the “fecal occult blood test”, and “stool blood test” were used, and these were modified
throughout the survey to “home stool test” to simplify terms, and also to be inclusive of
different types of stool tests (i.e. fecal immunochemical test). To align with the fecal occult
blood test process in Canada, one question in the self-efficacy measure was changed from
“testing two separate bowel movements” to “testing with three separate bowel movements”.
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Modifications were also made to added items so that they resembled wording in other
related items within the measure. For example, “you are less likely than other people…” was
changed to “I am less likely than other people…” (item #15 in survey) to align with items in
the perceived susceptibility measure. An added item to the perceived severity measure was
modified from “If you are fated`...” to “If I am fated...” (item #23 in survey); and, “Colon
cancer is like a death sentence; if you get it, you will surely die from it”`was modified to
“Colon cancer is like a death sentence; if I get it, I will surely die from it” (item #24 in
survey). Other wording related changes were completed to align with items in the perceived
benefits measure, for example, “Doing a stool test will give you peace of mind” was modified
to “A home stool test will give you peace of mind” (item #30 in survey); and, “Doing a
colonoscopy will give you peace of mind” was modified to “A colonoscopy will give you
peace of mind” (item #36 in survey). For perceived self-efficacy, the item “I am confident
that I could have colorectal cancer screening on a regular schedule” was modified to “I am
confident that I could do a home stool test on a regular basis” (item #64 in survey). The
researcher developed question “I want to do what my extended family and friends think I
should do about colon cancer screening” (item #69 in survey) was also formatted to align
with other items in the subjective norm measure.
Summary. The changes made to the published measures were considered necessary
to cover the key concepts, and to make them attributable to relevant concepts being studied.
Changing survey measures could alter their measurement properties, so further review of
measurement properties was halted knowing that its relevance was limited due to these
modifications. Through modification, it is also possible that these alterations may improve
the measures because of the relevancy of them to assess CRC screening among SA
immigrants; however, they could also weaken measures. Therefore, the new measures will
need to be tested to assess the measurement properties. The developers of the measures that
180
were adapted and modified to meet the purpose of this survey will be contacted to obtain
copyright permissions and approval to utilize them within the survey at a future date.
4.4 Discussion
This paper reports on the development of an initial version of the Colon Cancer
Screening Survey. The purpose of the survey is to describe or predict colon cancer screening
beliefs, attitudes, facilitators, and barriers that influence intention and uptake among SA
immigrants 50-74 years of age in Ontario, Canada. The survey will also be useful to identify
opportunities for intervention and improvement of screening uptake and future research. A
rigorous process was used to develop the survey. Prior research informed on concepts most
relevant to SA immigrants in relation to CRC screening (Crawford et al., 2015a, b) and
together with health behaviour theories informed operational definitions of concepts and the
conceptual model. The conceptual model includes key contextual variables associated with
CRC screening, such as history of CRC screening and other screening, and population
characteristics. Theoretical foundations of health behaviour theory and Critical Social Theory
enhanced the rigor of survey development involving the target population (DeVellis, 2012).
The directed literature review to search for previously validated candidate measures was not
only important but also feasible. Critique of measures using conceptual and measurement
model, content validity, and response burden criteria, and consultation with experts to select
candidate measures, make additions, and modifications to survey measures were
recommended procedures that strengthened this research.
The process of survey development was comprehensive and reported explicitly from
where measures were drawn and how decisions were made so that those embarking on future
research can learn from the process and adapt the survey questionnaire for their context using
a similar approach. The Colon Cancer Screening Survey was cross culturally translated and
adapted into the Urdu language. Afterwards, the English and Urdu language surveys were
181
pre-tested using cognitive interviews with SA immigrants. Outcomes of cross-cultural
translation and adaptation of the survey into the Urdu language, and pre-testing of the English
and Urdu language survey using cognitive interviews with SA immigrants in Hamilton,
Ontario are reported in another paper (Chapter 5 of this thesis). Modified measures
incorporated within the survey will require assessment of psychometric properties through
additional research. Future research will also be required to test the relationship between key
concepts and behavioural outcomes in the conceptual model.
4.5 Conclusion
A rigorous process was used to develop a survey that incorporated concepts on cancer
and CRC screening most relevant to SA immigrants. The use of prior research to identify
factors that influence CRC screening among SA immigrants informed key concepts to
measure and conceptual definitions to be included within a conceptual model in order to
guide survey development. The steps involved in developing this survey ensured that there
was a conceptual match between key defined concepts and previously developed measures.
Future work will field the survey in a sample of SA immigrants to assess beliefs, attitudes,
facilitators, and barriers that influence colon cancer screening intention or uptake. As well,
measures in the survey will need to be tested for reliability and validity.
182
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Table 1 Key concepts derived from studies, conceptual definitions that fit with key
concepts, and candidate measures from articles Key concepts
Scoping Study (Crawford et
al., 2015a)
Key concepts
Focus Group Study
(Crawford et al., 2015b)
Conceptual Definition
From behavioural model/theory
to define my concepts
Candidate measures
(Selected articles
with measures)
Low self-perceived risk of
colorectal cancer (CRC)
Not a risk - more prevalent in
western populations
Not necessary because no
symptoms
Lack of knowledge of risk
Screening not necessary: No
symptoms or healthy
Perceived susceptibility
[HBM]
Is concerned with the self-
perceived risk of a cancer
diagnosis (CRC).
Leung et al., 2014
Ozsoy et al., 2007
Fear of cancer and diagnosis
CRC not curable
Consequences of cancer
(stigma)
Cancer is scary: fear
associated with test or
waiting for results, and
diagnosis
Consequences of cancer
(bring on illness or poor
outcomes)
Perceived severity [HBM]
An individual‟s belief of the
serious nature of a disease, its
impact (medical, clinical, social,
and physical) and evaluation if
not treated.
Leung et al., 2014
Ozsoy et al., 2007
Screening increases chance of
survival or cure
Early detection is good
Start treatment soon
Better survival and cure
Screening reduces worry
Perceived benefits [HBM]
An individual‟s belief that a
change of behaviour will result
in a benefit; whereby a
condition could result in
reducing the threat (CRC). This
could relate to health and social
consequences (i.e. detect polyp
early, reduced worry or appease
family by doing screening),
which can also influence
decision-making.
Leung et al., 2014
Ozsoy et al., 2007
Rawl et al., 2001
Lack of knowledge - not heard
about cancer, risks or
screening, and do not know
how to do test
Pain, fear, nervous, worry,
embarrassment, or unpleasant
Language, cost, time, and no
transportation
Lack of physician
recommendation
No problems
Lack knowledge – have not
heard about CRC, risks, or
screening
Aversion to collecting stool
Language of physician
Perceived barriers [HBM]
Is linked to factors that impede
decisions to act on a behaviour;
the pros and cons are weighed.
Leung et al., 2014
Ozsoy et al., 2007
Rawl et al., 2001
Low confidence in completing
screening
Confidence to do test
Stool test: Embarrassment,
unpleasant, & lack time
Perceived self-efficacy [HBM]
An individual‟s confidence in
ability to complete a home stool
test or preparation for
colonoscopy.
Flight et al., 2010
Family as central – provide
advice and support
Loss of social support
Physician recommendation
Influence of:
Family and friends
Family physician, nurse
practitioner or other HCP
Physician recommendation,
responsibility, explanation
and enforcement
Subjective norm [TPB]
The individuals perception of
others expectations of
performing the behaviour, and
the ability of the individual to
conform or comply with others.
Flight et al., 2010
Ozsoy et al., 2007
Screening for breast, cervical
and CRC low among SA
immigrants
Not heard of or had cancer
screening
Not heard of CRC, risks and
screening
Not had CRC screening
(fecal occult blood test or
colonoscopy)
CRC Screening practices
Self-report information that
reflects having heard of and use
of the home stool test and
colonoscopy screening.
Vernon et al., 2004
190
Table 2 EMPRO Critical Appraisal Tool: Criteria on conceptual and measurement model,
content validity, and response burden (Valaderas et al., 2008)
Concepts and measures assessed
EMPRO criteria
1. The concept to be measured is clearly stated.
2. The conceptual and empirical basis for
obtaining the items for the instrument and for
combining them into one or more dimensions
is clearly stated and appropriate
3. The dimensionality and distinctiveness of the
scales is specifically described and well-
supported.
4. The involvement of the target population for
obtaining the final content of the instrument is
clearly described, the methods are appropriate
and the results are satisfactory.
5. Evidence of scale variability in the population
is specifically described and appropriate to its
intended use.
6. The intended level of measurement is clearly
defined and supportive evidence is provided
7. The rationale and procedures for deriving
scale scores from raw scores is clearly
described.
16. Sufficient evidence is presented
regarding content-related validity of the instrument
for its intended use.
28. The skills and time needed to complete the
instrument are clearly described and acceptable.
Overall Assessment and recommendation
Reviewers: 1 or 2
Ratings
Strongly agree (4), (3), (2), (1) Strongly disagree
„No information available‟ exists - information in the documentation is insufficient to be able to
make the evaluation.
„Not applicable‟- the item does not apply in the case of the instrument they are evaluating Overall assessment and recommendation
Researcher determination if the measure is recommended for measuring intended concepts or outcomes.
1. Strongly recommended; 2. Recommend with alterations; 3. Would not recommend; 4. Not enough
information to determine degree of recommendation
191
Table 3 EMPRO Scores as a result of critical appraisal using nine criteria
Concepts and measures assessed Perceived benefits Perceived barriers Perceived
susceptibility
Perceived
severity
Perceived
benefits
Perceived
barriers
Perceived
self-efficacy
EMPRO Criteria [below] and reference [right] Rawl et al., 2001
(2 articles) Rawl et al.,
2001(2 articles) Ozsoy et al.,
2007
(3 articles)
Ozsoy et al.,
2007
(3 articles)
Ozsoy et
al., 2007
(3 articles)
Ozsoy et al.,
2007
(3 articles)
Ozsoy et al.,
2007
(3 articles)
1. The concept to be measured is clearly stated. R 1 R2 R 1 R2 R 1 R 1 R 1 R 1 R 1
4 4 4 4 4 4 4 4 4 2. The conceptual and empirical basis for
obtaining the items for the instrument and for
combining them into one or more dimensions is
clearly stated and appropriate
R 1 R2 R 1 R2 R 1 R 1 R 1 R 1 R 1
3.5 4 3.5 4 3 3 3 3 3
3. The dimensionality and distinctiveness of the
scales is specifically described and well-
supported.
R 1 R2 R 1 R2 R 1 R 1 R 1 R 1 R 1
3.5 4 3.5 4 4 4 4 4 4
4. The involvement of the target population for
obtaining the final content of the instrument is
clearly described, the methods are appropriate
and the results are satisfactory.
R 1 R2 R 1 R2 R 1 R 1 R 1 R 1 R 1
2.5 3 2.5 3 2.5 2.5 2.5 2.5 2.5
5. Evidence of scale variability in the population is
specifically described and appropriate to its
intended use.
R 1 R2 R 1 R2 R 1 R 1 R 1 R 1 R 1
3 4 3 4 4 4 4 4 4
6. The intended level of measurement is clearly
defined and supportive evidence is provided
R 1 R2 R 1 R2 R 1 R 1 R 1 R 1 R 1
2.5 2 2.5 2 3 3 3 3 3
7. The rationale and procedures for deriving scale
scores from raw scores is clearly described.
R 1 R2 R 1 R2 R 1 R 1 R 1 R 1 R 1
3 3 3 3 3 3 3 3 3 16. Sufficient evidence is presented regarding
content-related validity of the instrument for its
intended use.
R 1 R2 R 1 R2 R 1 R 1 R 1 R 1 R 1
2 2 2 2 2 2 2 2 2
28. The skills and time needed to complete the
instrument are clearly described and acceptable.
R 1 R2 R 1 R2 R 1 R 1 R 1 R 1 R 1
2 2 2 2 3 3 3 3 3
Overall assessment and recommendation 1 1 1 1 2 2 2
192
Table 3 EMPRO Scores as a result of critical appraisal using nine criteria
Concepts and measures assessed Perceived
susceptibility
Perceived
severity
Perceived
benefits
Perceived
barriers
Perceived
susceptibility
Perceived
self-efficacy
Subjective
norm
CRC screening
practices
EMPRO Criteria [below] and reference [right] Leung et al.,
2014
(3 articles)
Leung et al.,
2014
(3 articles)
Leung et
al., 2014
(3 articles)
Leung et al.,
2014
(3 articles)
Flight et al.,
2010
(2 articles)
Flight et
al., 2010
(2 articles)
Flight et
al., 2010
(2 articles)
Vernon et al.,
2004
1. The concept to be measured is clearly stated. R 1 R 1 R 1 R 1 R 1 R 1 R 1 R 1
4 4 4 4 4 4 4 4 2. The conceptual and empirical basis for obtaining
the items for the instrument and for combining
them into one or more dimensions is clearly
stated and appropriate
R 1 R 1 R 1 R 1 R 1 R 1 R 1 R 1
3 3 3 3 3 3 3 4
3. The dimensionality and distinctiveness of the
scales is specifically described and well-
supported.
R 1 R 1 R 1 R 1 R 1 R 1 R 1 R 1
3 3 3 3 4 4 4 3
4. The involvement of the target population for
obtaining the final content of the instrument is
clearly described, the methods are appropriate
and the results are satisfactory.
R 1 R 1 R 1 R 1 R 1 R 1 R 1 R 1
2.5 2.5 2.5 2.5 2 2 2 3
5. Evidence of scale variability in the population is
specifically described and appropriate to its
intended use.
R 1 R 1 R 1 R 1 R 1 R 1 R 1 R 1
3 3 3 3 3 3 3 1
6. The intended level of measurement is clearly
defined and supportive evidence is provided R 1 R 1 R 1 R 1 R 1 R 1 R 1 R 1
4 4 4 4 3 3 3 1 7. The rationale and procedures for deriving scale
scores from raw scores is clearly described. R 1 R 1 R 1 R 1 R 1 R 1 R 1 R 1
3 3 3 3 3 3 3 2 16. Sufficient evidence is presented regarding
content-related validity of the instrument for its
intended use.
R 1 R 1 R 1 R 1 R 1 R 1 R 1 R 1
1 1 1 1 1 1 1 3
28. The skills and time needed to complete the
instrument are clearly described and acceptable. R 1 R 1 R 1 R 1 R 1 R 1 R 1 R 1
3 3 3 3 3 3 3 1 Overall assessment and recommendation 2 2 2 2 2 1 1 1
193
Table 4 Candidate Measures
Concept Articles reporting on candidate measures
Perceived
susceptibility
Ozsoy et al., 2007
1. It is extremely likely I will
get colon cancer in the
future.
2. I feel I will get colon
cancer in the future.
3. There is a good possibility
I will get colon cancer in
the next 10 years.
4. My chances of getting
colon cancer are great.
5. I am more likely than the
average person to get colon
cancer.
Leung et al., 2014
1. It is extremely likely that
I will get CRC.
2. My chances of getting
CRC in the next few
years are great.
3. I feel I will get CRC
some time in my life.
4. Developing CRC is
currently a possibility
for me.
5. I am concerned about
the likelihood of
developing CRC in the
near future.
Flight et al. 2010
1. The chance that I might
develop colorectal cancer
is high.
2. Compared with other
persons my age, I am at
lower risk for colorectal
cancer.
3. It is very likely that I will
develop colorectal cancer
or polyps.
4. The chances that I will
develop colorectal polyps
are high.
Perceived
severity
Ozsoy et al., 2007 1. The thought of colon cancer scares
me.
2. When I think about colon cancer, my
heart beats faster.
3. I am afraid to think about colon
cancer.
4. Problems I would experience with
colon cancer would last a long time.
5. Colon cancer would threaten a
relationship with my partner.
6. If I had colon cancer my whole life
would change.
7. If I developed colon cancer, I would
not live longer than 5 years.
Leung et al., 2014
1. The thought of getting CRC scares me.
2. When I think of CRC I feel nauseated.
3. If I had CRC, my career (life) would change.
4. When I think of CRC my heart beats faster.
5. CRC would endanger my marriage
(relationship)
6. CRC is a hopeless disease.
7. My feelings about myself would change if I got
CRC.
8. I am afraid to even think of CRC.
9. My financial security would be endangered if I
got CRC.
10. Problems I would experience from CRC would
last a long time.
11. If I got CRC, it would be more serious than
other diseases.
12. If I got CRC, my whole life would change
Perceived
benefits
Rawl et al., 2001
1. Finding CRC early will
save your life.
2. The treatment for CRC
may not be as bad if the
cancer is found early.
3. A (FOBT, FS,
colonoscopy) will help
find CRC early.
4. A (FOBT, FS,
colonoscopy) will
decrease your chances
of dying from CRC.
5. A (FOBT, FS,
colonoscopy) will help
you not worry as much
about CRC.
Leung et al., 2014
1. CRC can be found early
if screening.
2. Treatment not as bad if
screening.
3. Best way to find
smaller cancer if
screening.
4. Screening decreases
chance of dying of
CRC.
5. Screening doing
something to take care
of myself.
Ozsoy et al., 2007
1. If I had regular check-ups to
detect colon cancer, I would
feel good.
2. If I had regular check-ups to
detect colon cancer, I wouldn‟t
worry as much about colon
cancer
3. Having regular check-ups to
detect colon cancer will allow
me to find cancer early.
4. If I have regular check-ups to
detect colon cancer, I will
decrease my chance of dying
from colon cancer.
5. If I have regular check-ups to
detect colon cancer, I will
decrease my chances of
requiring radical or disfiguring
surgery if colon cancer occurs.
6. If I have regular check-ups to
detect colon cancer, it will
help me to detect something
that may be cancer early.
194
Table 4 Candidate Measures
Concept Articles reporting on candidate measures
Perceived
barriers
Rawl et al., 2001
Fecal occult blood test (FOBT)
1. Do not know how to do a
stool blood test.
2. Collecting a stool sample is
unpleasant.
3. Do not need stool blood test
because you have no
problems.
4. Stool blood test is
embarrassing.
5. Afraid to do a stool blood
test because you might find
something wrong.
6. Do not have time to do a
stool blood test.
7. Cost would keep me from
doing stool blood test.
8. Do not have privacy to do a
stool blood test.
Colonoscopy (or FS)
1. You feel anxious about
having a colonoscopy
because you don‟t really
understand what will be
done.
2. Having a colonoscopy is
painful.
3. Having to follow a special
diet and taking a laxative
would keep you from
having a colonoscopy.
4. You are afraid to have
colonoscopy because of the
possibility there may be
bleeding or tearing of the
colon.
5. Transportation problems
would keep you from
having a colonoscopy.
Ozsoy et al., 2007
1. I feel uncomfortable
talking about colon
cancer.
2. Having regular check-
ups to detect colon
cancer will make me
worry about colon
cancer.
3. Regular check-ups to
detect colon cancer
will be embarrassing
to me.
4. Regular check-ups to
detect colon cancer
will take too much
time
5. Regular check-ups to
detect colon cancer
will be unpleasant.
6. Having regular check-
ups to detect colon
cancer will cost too
much money.
Leung et al., 2014
1. CRC is embarrassing.
2. I am afraid I will find out there
is something wrong with me
when I have CRC screening.
3. I am afraid to have CRC
screening because I don‟t
understand what will be done in
the test.
4. I don‟t know how to go about
scheduling CRC screening.
5. Having CRC screening would
take too much time
6. CRC screening exams may be
painful.
7. People doing CRC screening
may be rude.
8. Having CRC screening would
expose me to too much
radiation.
9. It is difficult to get
transportation to get CRC
screening.
10. I have other problems that are
more important than getting
CRC screening.
11. CRC screening would interfere
with my activities.
12. Having CRC screening costs too
much money.
13. I cannot remember to schedule
an appointment for CRC
screening.
Subjective
norm
Flight et al. 2010
1. I want to do what members of my immediate family think I should do about CRC screening
2. Members of my immediate family think I should have CRC screening
3. My doctor or health professional thinks I should have CRC screening
4. I want to do what my doctor or health professional thinks I should do about CRC screening
Perceived
self-
efficacy
Flight et al. 2010
1. I am confident that using an FOBT
screening kit would be easy.
2. I am confident that testing 2 separate
bowel movements would not be
inconvenient
3. I am confident that I will not find using
the kit embarrassing.
4. I am confident that I would not find the
test distasteful.
5. I am confident that I would find time in
the day to complete the test.
Ozsoy et al., 2007
1. I know how to get regular check-ups to detect
colon cancer.
2. I am confident that I could schedule regular check-
ups to detect colon cancer if I needed them.
3. If I were to develop colon cancer, I would
continue to get regular check-ups.
4. I can recognize normal and abnormal changes in
my bowel habits.
5. I will be able to detect colon cancer early if I have
regular check-ups.
195
Table 4 Candidate Measures
Criteria: CRC screening practices
Vernon et al. 2004
Fecal occult blood test (FOBT)
Before this test was described, had you ever heard of a
fecal occult or stool blood test?
• Yes; No; Not sure/do not know
If yes, to “ever heard”:
Have you ever done a stool blood test using a “home” test
kit?
• Yes; No; Not sure/do not know
If yes, to “ever had”:
How many home stool blood tests have you done in the
last 5 years
• ___________(number 1 to 5)
• Not sure/do not know
When did you do your most recent home stool blood test
• A year ago or less
• More than 1 but not more than 2 years ago
• More than 2 but not more than 5 years ago
• More than 5 years ago
• Not sure/do not know
If you did you most recent test within the past year, what
was the month and year: Month________
Year__________
Why did you do you most recent home stool blood test
• Part of a routine examination or check up
• Because of a symptom or health problem
• Follow-up of an earlier abnormal test
• Not sure/do not know
When did you do the home stool blood test before your
most recent one
• None before the most recent
• A year ago or less
• More than 1 but not more than 2 years before
• More than 2 years before
• Not sure/do not know
Why did you have that home stool blood test
• A year ago or less
• More than 1 but not more than 2 years ago
• More than 2 but not more than 5 years ago
• More than 5 years ago
• Not sure/do not know
Colonoscopy Before these tests were described, had you ever
heard of colonoscopy?
• Yes; No; Not sure/do not know
If “yes” to “ever heard”:
Have you ever had a colonoscopy?
• Yes; No; Not sure/do not know
If “yes” to “ever had”:
How many colonoscopic examinations have you
had in the last 10 years:
• 1; 2; >2; Not sure/do not know
Was your most recent colonoscopy:
• A year ago or less
• More than 1 but not more than 2 years
ago
• More than 2 but not more than 5 years
ago
• More than 5 years ago
• Not sure /do not know
What was the month and year of your most recent
colonoscopy
Month__________ Year__________
Why did you have your most recent colonoscopy?
• Part of a routine examination or check up
• Because of a symptom or health problem
• Follow-up of an earlier abnormal test
• Not sure /do not know
When did you have the colonoscopy before your
most recent one?
• None before the most recent
• More than 1 but not more than 2 years
before
• More than 2 years before
• Not sure/do not know
•
Why did you have that colonoscopy?
• Part of a routine examination or check-up
• Because of a symptom or health problem
• Follow-up of an earlier abnormal test
• Not sure/do not know
196
Table 5 Expert advisory group and expert committee review: Outcomes on selection of
best candidate measures, and additions and modifications
Measure Source and
measure
Best
candidate
measure that
is aligned to
my concept to
use in SA
immigrant
population.
Rationale
Ranked
1 – First, most aligned
2 – Second, somewhat
aligned but may be
unclear, confusing, or
too long
Additions and
modifications
A-Number of
additions
B-Modification to
questions
Perceived
susceptibility
Ozsoy et al.,
2007
√ Ranked #1
Other two measures
(Leung et al., 2014;
Flight et al., 2010) had
more difficult or
confusing terms.
A-1
B-yes to added
question
Perceived
severity
Ozsoy et al.,
2007
√ Ranked #1
The other measure
(Leung et al., 2014) was
long and had terms that
were not culturally
sensitive.
A-2
B-yes to additional
item added to
measure
Perceived
benefits
Rawl et al.,
2001 √ Ranked #1
Other two measures
(Leung et al., 2014;
Ozsoy et al., 2007) were
long, too many words or
missing items
A-2
B- yes to additional
item added to
measure; and to
existing question
(fecal occult blood
test/stool blood test
& colorectal cancer
modified)
Perceived
barriers
Rawl et al.,
2001
√ Ranked #1
Other two measures
(Leung et al., 2014;
Ozsoy et al., 2007) were
long, confusing, or not
clear.
A-3
B-yes (stool blood
test modified)
Self-efficacy
Flight et al.,
2010
√ Ranked #1
Other measure (Ozsoy et
al., 2007) was confusing
or not clear.
A-2
B-yes (colorectal
cancer screening
modified with home
stool test)
Subjective
norm
Flight et al.,
2010 √ Ranked #1
Emphasis on family and
physician.
A-1
B-no
CRC
screening
practices
Vernon et al.,
2004 √ Ranked #1
Addressed basic
knowledge, CRC
screening intention, and
adherence
A-3
B-yes (fecal occult
blood test or stool
blood test modified)
197
Appendix A Glossary of terms
Concepts
Concepts represent knowledge and understanding about a topic (Aday & Cornelius, 2006).
Item
A single question contained in a series of questions, for example presented in a measurement
instrument or scale, or survey (Aday & Cornelius, 2006).
Measures
“Proxies for variables that we cannot directly observe” (DeVellis, 2012, p. 17)
Measurement instruments
“A collections of items combined into a composite score and intended to reveal levels of
theoretical variables not readily observable by direct means are often referred to as scales”
(DeVellis, 2012, p. 11)
Survey
A survey represents a compilation of questions, responses, and instructions. Within a survey,
there may be multiple instruments (Aday & Cornelius, 2006).
198
Appendix B Colon Cancer Screening Survey
Thank you for your interest in participating in this research study. Your contributions will help us to
learn more about colon cancer screening practices among South Asian immigrants in your
communities. This information will be important to public health and health services who promote
screening programs in Ontario.
Colon cancer is a disease that affects the large intestine including the colon and rectum, and it is a
common cancer in Canada. Men and women have the same chance of getting the disease. Colon
cancer screening is a way to check for pre-cancer or cancer even if you do not have symptoms. By
having a screening test, you can stop the disease from developing or find it early to treat it or cure it.
Screening is important for all Canadians including immigrants.
SECTION ONE
I would first like to begin by asking you about screening for colon cancer.
Screening for colon cancer means having a test to check for cancer even if you do not
Have symptoms or problems with your bowels.
The following questions are about the home stool test, a test to check for colon cancer. In your home,
you take a sample of fecal matter or stool (poop) and follow the instructions to complete the test. The
test checks for small amounts of blood that you cannot see in the stool.
1. Before this test was described, had you ever heard of a home stool test?
Yes
No
Not sure/do not know
1a. If “yes” to “ever heard”:
Have you ever had stool test using a “home” test kit?
Yes
No
Not sure/do not know
1b. If “yes” to “ever had”:
How many home stool tests have you done in the last 5 years?
___________ (number 1 to 5)
Not sure/do not know
2. When did you do your most recent home stool test?
A year ago or less
More than 1 but not more than 2 years ago
More than 2 but not more than 5 years ago
More than 5 years ago
Not sure/ do not know
Participant ID ____________________
Date Completed ___________________
Surveyor Initials _________________
Go to question 1a.
Go to question 1b.
Go to question 4
Go to question 4
199
3. Why did you do your most recent home stool test?
Part of a routine examination or check up
Because of a symptom or health problem
Follow-up of an earlier abnormal test
Not sure/do not know
4. Have you thought about doing a home stool test in the future?
Yes
No
Not sure/do not know
5. Do you plan to have a home stool test in the future?
Yes
No
Not sure/do not know
6. Do you plan to go for any other type of colon cancer screening test in the future?
Yes
No
Not sure/do not know
SECTION TWO
This next group of questions will also ask about screening for colon cancer.
Screening for colon cancer means having a test to check for cancer even if you do not have symptoms
or problems with your bowels.
The following questions are about colonoscopy, another test to check for colon cancer. This test is
done in a clinic setting to examine the entire colon using a narrow tube with a light that is inserted
into the rectum (your bottom). The day before the test, special instructions on how to flush out the
colon are given to you, such as using a laxative to make sure the colon is empty. The preparation
makes a person go to the bathroom often. During the test, you may be given medicine through a
needle in your arm to make you sleepy. You will need someone to drive you home. You may need to
take the rest of the day off from your usual activities.
7. Before these tests were described, had you ever heard of colonoscopy?
Yes
No
Not sure/do not know
7a. If “yes” to “ever heard”:
Have you ever had a colonoscopy?
Yes
No
Not sure/do not know
Go to question 7a.
Go to question 7b.
Go to Section 3, question 10
Go to Section 3, question 10
200
7b. If “yes” to “ever had”:
How many colonoscopy examinations have you had in the last 10 years?
1
2
>2
Not sure/do not know
8. Was your most recent colonoscopy:
A year ago or less
More than 1 but not more than 2 years ago
More than 2 but not more than 5 years ago
More than 5 years ago
Not sure/ do not know
9. Why did you have your most recent colonoscopy?
Part of a routine examination or check up
Because of a symptom or health problem
Follow-up of an earlier abnormal test
Not sure/ do not know
SECTION THREE
The following group of questions will ask you about your feelings and beliefs about colon cancer.
Please tell me whether you agree or disagree with the following statements about colon cancer in
general.
Responses Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
10. It is extremely likely I
will get colon cancer in the
future.
11. I feel I will get colon
cancer in the future.
12. There is a good
possibility I will get colon
cancer in the next 10 years.
13. My chances of getting
colon cancer are great.
14. I am more likely than
the average person to get
colon cancer.
15. I am less likely than
other people my age to get
colon cancer.
16. The thought of colon
cancer scares me.
17. When I think about
colon cancer, my heart
beats faster.
18. I am afraid to think
about colon cancer.
201
Responses Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
19. Problems I would
experience with colon
cancer would last a long
time.
20. Colon cancer would
threaten a relationship with
my partner.
21. If I had colon cancer,
my whole life would
change.
22. If I developed colon
cancer, I would not live
longer than 5 years.
23. If I am fated to get
colon cancer, I will get
colon cancer; there is
nothing I can do to change
fate.
24. Colon cancer is like a
death sentence; if I get it, I
will surely die from it.
The following group of questions will ask you about your reasons for having colon cancer screening
using a home stool test. Please tell me whether you agree or disagree with the following statements.
Responses Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
25. Finding colon cancer
early will save your life.
26. The treatment for colon
cancer may not be as bad if
the cancer is found early.
27. A home stool test will
help find colon cancer
early.
28. A home stool test will
decrease your chances of
dying from colon cancer.
29. A home stool test will
help you not worry as
much about colon cancer.
30. A home stool test will
give you peace of mind.
202
The following group of questions will ask you about your reasons for having colon cancer screening
using colonoscopy. Please tell me whether you agree or disagree with the following statements.
Responses Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
31. Finding colon cancer
early will save your life.
32. The treatment for colon
cancer may not be as bad if
the cancer is found early.
33. A colonoscopy will
help find colon cancer
early.
34. A colonoscopy will
decrease your chances of
dying from colon cancer.
35. A colonoscopy will
help you not worry as much
about colon cancer.
36. A colonoscopy will
give you peace of mind.
The following group of questions will ask you about why you would NOT having colon cancer
screening using a home stool test. Please tell me whether you agree or disagree with the following
statements.
Responses Strongly
Disagree
(1)
Disagree
(2)
I neither agree
or disagree (3)
Agree
(4)
Strongly
Agree (5)
37. You are afraid to have a
home stool test because you
might find out something is
wrong.
38. A home stool test is
embarrassing.
39. You do not have time to
do a home stool test.
40. The cost would keep
you from having a home
stool test.
41. You do not need to do a
home stool test because you
have no problems.
42. You do not know how
to do a home stool test.
43. You do not have
privacy to do a home stool
test.
44. Collecting a stool
sample to do home stool
test is unpleasant to you.
203
Responses Strongly
Disagree
(1)
Disagree
(2)
I neither agree
or disagree (3)
Agree
(4)
Strongly
Agree (5)
45. You don‟t know where
to go to get a home stool
test.
46. There is no one who
speaks your language at the
doctor‟s office.
47. The doctor never told
you to have a home stool
test.
The following group of questions will ask you about why you would NOT having colon cancer
screening using colonoscopy. Please tell me whether you agree or disagree with the following
statements.
Responses Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
48. You are afraid to have a
colonoscopy because you
might find out something is
wrong.
49. A colonoscopy is
embarrassing.
50. You do not have time to
do a colonoscopy.
51. The cost would keep
you from having a
colonoscopy.
52. You do not need to do a
colonoscopy because you
have no problems.
53. You feel anxious about
having a colonoscopy
because you don‟t really
understand what will be
done.
54. Having a colonoscopy is
painful.
55. Having to follow a
special diet and taking a
laxative would keep you
from having a colonoscopy.
56. You are afraid to have
colonoscopy because of the
possibility there may be
bleeding or tearing of the
colon.
57. Transportation problems
would keep you from
having a colonoscopy.
204
The following group of questions will ask you about you confidence in completing the home stool
test. Please tell me whether you agree or disagree with the following statements.
Responses Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
58. I am confident that
using the home stool test
screening kit would be
easy.
59. I am confident that
testing three separate bowel
movements would not be
inconvenient
60. I am confident that I
will not find using the home
stool test embarrassing.
61. I am confident that I
would not find the home
stool test distasteful.
62. I am confident that I
would find time in the day
to complete the home stool
test.
63. I am confident that I
could do the home stool test
correctly.
64. I am confident that I
could do the home stool test
on a regular basis.
The following group of questions will ask you about the people in your life who would help you to
have colon cancer screening. Please tell me whether you agree or disagree with the following
statements.
Responses Strongly
Disagree
(1)
Disagree (2) I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
65. I want to do what
members of my immediate
family think I should do
about colon cancer
screening.
66. Members of my
immediate family think I
should have colon cancer
screening.
67. My doctor or health
professional thinks I should
have colon cancer
screening.
205
Responses Strongly
Disagree
(1)
Disagree (2) I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
68. I want to do what my
doctor or health
professional thinks I should
do about colon cancer
screening.
69. I want to do what my
extended family and friends
think I should do about
colon cancer screening.
SECTION FOUR
I would now like to ask you questions about your background. Your responses will be kept
completely confidential.
70. What is your age in years (or date of birth)? _______________________
71. What is your gender?
Male
Female
72. What is your country of birth?
India
Pakistan
Bangladesh
Other country________________
73. How many years have you lived in Canada? ____________________________________
74. Which of the following categories best describes your ethnic/religious background?
Please select all that apply:
Bangladeshi
Pakistani
Sikh
Sri Lankin
Tamil
Bengali
Hindu
Punjabi
Nepali
Gujarati
Other , please tell me_____________________
75. What is your current marital status?
Married
Living as married
Divorce
Separated
Widowed
Never married
Have a partner but do not live with them
206
76. In your household, tell us the individuals who make up your family: Mark all that apply.
Live alone
Live with my partner/spouse
Live with my parents
Live with my friends
Live with my in-laws
Live with other members of my family (not listed above)
77. What is the highest level of education you have completed?
Less than high school
Completed high school
Completed some college/university
Completed trade, certificate, or diploma
University certificate/diploma
University degree (Bachelor‟s)
Post graduate degree
78. What is your employment status?
Employed outside the home full-time (over 30 hours per week)
Employed outside the home part-time (up to 30 hours per week)
Looking after a home/family
Unemployed
Not working but seeking work
I am retired
On disability or government program
Other, please specify __________________
79. What is your household (combined family members incomes) yearly income before taxes?
<19,999
20,000-29,999
30,000-39,999
40,000-49,999
50,000-59,999
60,000-79,999
80,000- 99,999
More than 100,000
Don‟t know or prefer not to answer
80. Do you have a family doctor that you can see regularly?
Yes
No
Other, please specify
81. Is your family doctor:
Male
Female
82. Is your family doctor from a similar culture as yourself?
Yes
No
207
83. If you are female and have a male physician, would you prefer a female health care provider, such
as a female doctor or female nurse practitioner for health exams?
Male
Female
Do not care
84. If you are female, what OTHER cancer screening tests have you had in the past?
Breast cancer: Mammography
Cervical cancer: Pap test
Do you have any comments or questions for me?
_____________________________________________________________________________
_____________________________________________________________________________
_____________________________________________________________________________
_____________________________________________________________________________
You have come to the end of the questions.
Thank you for completing the survey!
208
Chapter Five
Phase 3 Survey Development Study
Cross cultural translation and adaptation and pre-testing of survey (Part 2)
This chapter presents part two of the survey development study and reports on cross-
cultural translation and adaptation of the English version of the Colon Cancer Screening
Survey into the Urdu language, and pre-testing of both versions using cognitive interviews
with a sample of South Asian immigrants in Hamilton, Ontario. The purpose of the survey is
to describe or predict colon cancer screening beliefs, attitudes, facilitators, and barriers that
influence intention and uptake among South Asian immigrants in Ontario, Canada. The
chapter contains a background and an overview of survey development, along with two main
sections reporting on cross-cultural translation and adaptation and pre-testing of the survey
using cognitive interviews. The first section presents cross-cultural translation and adaptation
methods, and highlights findings and subsequent revisions. The second section discusses the
pre-testing of the English and Urdu language survey using cognitive interviews with South
Asian immigrants and includes methods and design, ethics, participant selection, cognitive
interviewers and training, data analysis, findings, discussion, strengths and limitations, and
conclusions.
5.1 Background
To understand colorectal cancer (CRC) and screening behaviours among South Asian
(SA) populations, an understanding about socio-cultural context, barriers and facilitators to
participation is required. Knowledge gained may then be used to inform selection of relevant
measures to assess the factors that influence CRC screening. More importantly, the
engagement and inclusion of SA perspectives in research is imperative to ensure that
measures are relevant and appropriate to the target population (Aday & Cornelius, 2006).
Prior studies were conducted to develop a survey targeted for use in the SA immigrant
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population to assess beliefs, attitudes, facilitators, and barriers to CRC screening (Crawford,
Ahmad, Beaton, & Bierman, 2015a; Crawford, Ahmad, Beaton, & Bierman, 2015b).
One study enhanced understanding of factors that influenced cancer screening among
SA immigrants residing in the United Kingdom (UK), the United States of America (USA),
and Canada (Crawford et al., 2015a). This initial work provided knowledge on socio-cultural
context including values of family and holistic views of health care (Crawford et al., 2015a).
Additional beliefs related to risk perception, low knowledge, and barriers to screening. Most
studies primarily focused on female cancer screening, and thus, were limited in terms of
understanding beliefs, barriers, and gender-related factors that influence CRC screening.
A qualitative study elicited the perspectives of SA immigrants in order to gain a more
focused understanding of CRC and screening perceptions within the Canadian context
(Crawford et al., 2015b). The findings informed on socio-cultural beliefs and attitudes related
to CRC and screening. There was also greater understanding of sources of knowledge and
awareness from social networks, support and access to CRC screening uptake, and strategies
to promote CRC screening in SA communities. In summary, both studies were essential to
gain knowledge to inform the development of a survey targeted for SA immigrants.
5.2 Survey Development
In survey development, the concepts of interest (Crawford et al., 2015 a, b) were
charted, and key concepts defined (see Chapter 4). Theoretical and empirical literature was
used to guide conceptual definitions. The following behavioural concepts from the Health
Belief Model (Rosenstock, Stretcher, & Becker, 1988) aligned best to five key concepts:
perceived susceptibility, perceived severity, perceived benefits, perceived barriers, and
perceived self-efficacy. The behavioural concept, subjective norm, from the Theory of
Planned Behaviour (Ajzen, 1991) aligned well to the key concept related to social influences
of family, friends and family physician. A conceptual model was created to highlight
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contextual factors and key concepts that influenced behavioural intention and CRC screening
uptake or adherence (see Chapter 4). Rather than develop new items or measures for the
survey, the next step was to conduct a literature review of articles that reported on pre-
existing candidate measures that were good conceptual matches to key concepts and
conceptual definitions. Critical appraisal used nine criteria that assessed conceptual integrity,
content validity, and response burden drawn from the Evaluating the Measurement of Patient-
Reported Outcomes (EMPRO) tool (Valderas et al., 2008). This assessment facilitated further
validation that the selected measures had conceptual match. Consultation with experts
enabled: the selection of candidate measures that aligned well with key concepts and
conceptual definitions; additions to fill missing content in selected measures; and,
modifications for consistency and simplification of wording (see Chapter 4).
The Colon Cancer Screening Survey consists of 84 questions. The purpose of the
survey is to describe colon cancer screening beliefs, attitudes, facilitators, and barriers that
influence intention and uptake among SA immigrants in Ontario, Canada. The survey may
also be used in future to predict factors that influence colon cancer screening uptake and in
turn, inform intervention planning. As developed, the survey was intended for in-person or
telephone interviewer-led administration. The rationale is the interviewer can present the
questions verbally to overcome the literacy barrier that may exist in some groups of SA
immigrants. As well, it will minimize errors or missing responses (Aday & Cornelius, 2006).
To reach diverse communities, a common practice is to translate and administer a
survey developed for native-born populations without consideration of cultural
appropriateness of questions and responses or function of the survey, which may not be
conceptually equivalent or relevant to the community characteristics (Pasick, Stewart, Bird,
& D‟Onofrio, 2001). Controversy exists in terms of reaching conceptual equivalence, which
typically occurs with time and testing of the source and target versions of the survey after
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cross-cultural translation and adaptation (Acquadro, Conway, Hareendran, & Aaronson,
2008). A method to address these issues would be to pre-test the Urdu and English language
versions of the survey using cognitive interviews in a diverse SA immigrant population. Pre-
testing with cognitive interviews may uncover issues with comprehension of questions and
responses, design layout, or translation, as was the case for Pasick et al. (2001) in their study
assessing breast and cervical cancer screening among diverse ethnic populations in the USA,
where conceptual, translation and contextual issues arose.
This paper reports on the cross-cultural translation and adaptation of the Colon Cancer
Screening Survey into the Urdu language, and the pre-testing of the English and Urdu version
of the survey using cognitive interviews with SA immigrants in Hamilton, Ontario.
5.3 Cross-Cultural Translation and Adaptation
The main objective of cross-cultural translation and adaptation was to produce an
accurate version of the survey in the Urdu language for use among SA immigrants not
proficient or comfortable completing the survey in the English language. This also enabled
underserved populations with language barriers to participate in research. To make the survey
accessible, it was determined that cross-cultural translation and adaption into the Urdu
language would be the best option. The rationale is that the Urdu language is widely spoken
among SA populations settling in Canada. Because the survey would be in-person and
interviewer administered, it was also a preferred language choice in Ontario because spoken
Urdu is understood across many diverse SA population groups. Similarities exist between
Urdu, Punjabi, and Hindi spoken languages, although in the written form, they differ
significantly (R. Alvi, personal communication, May 20, 2015).
5.3.1 Methods
The survey was translated into the Urdu language using cross-cultural translation
and adaptation methods and included the following steps: two individual forward translations,
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a synthesis report of the two forward translators‟ meeting to discuss issues and resolutions,
and expert committee review (Beaton, Bombardier, Guillemin, & Ferraz, 2000).The decision
to forgo back-translation, a common second step in cross-cultural translation and adaptation
was made because of the literature reporting that expert committee review produces more
accurate cross-cultural translation and adaptation (i.e. face validity and conceptual relevance)
when compared to back-translation (Epstein et al., 2015). Epstein et al. (2015) described that
back translators could return the survey to the original wording skipping over incorrect terms
in the forward translation, and thus provide unwarranted confidence in the translated version.
The first step required two translations (T1 and T2) from two individual translators.
These individuals were bilingual, emigrated from the Indian sub-continent, and were native
speakers of Urdu; one had lay knowledge of the topic, and another had a health science
background. Documentation was provided on each translation. In step two, a synthesis of the
two independent translations (T1 and T2) was created and documented. Discrepancies were
resolved by consensus through the process of returning to the synthesized documentation
report, and discussing the issue among the two translators. The source and target versions of
the survey were examined using the following criteria: (a) semantic equivalence, the meaning
ascribed to words used by SA populations; (b) idiomatic equivalence, the idioms or
colloquialisms used by the SA population; (c) experiential equivalence, the context of the
activity, CRC screening; and (d) conceptual equivalence, the meaning of concepts examined
and defined within the culture (Beaton et al., 2000; Guillemin et al., 1993; Price et al., 2009).
The next step involved an expert committee review of the combined translations (T1
and T2) synthesis report of the survey including written documentation that outlined
decision-making processes that took place during translation (Epstein et al., 2015). To avert
problems related to accurate linguistic and cultural translations of key medical terms during
expert committee review, a bilingual clinical expert was brought in to discuss issues that
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arose when reaching consensus on translated concepts (Price et al., 2009). The expert
committee was comprised of the two individual translators, a bilingual clinical expert, and a
content expert in cancer screening and public health. The expert committee played a vital role
in the final step of cross-cultural translation and adaptation before pre-testing the survey. This
was accomplished through discussion of each individual‟s interpretation, and reaching a
consensus on any issues or discrepancies. To log results of cross-cultural translations, three
forms were used, one for each step (Beaton, Bombardier, Guillemin, & Ferraz, 2007).
5.3.2 Cross-cultural and adaptation findings
After two forward translations were completed, both translators met to review each
translation (Appendix A). A small number of discrepancies were detected that were related to
correct translation and meaning during the synthesis meeting of T1 and T2 translations. For
example, the word “recent” was translated differently in T1 and T2 translations. A decision
was made to keep T1 translation of “more fresh” because it was more conceptually aligned to
the English term. Appendix B provides details of the Synthesis report for T1 and T2
translations and resolution of discrepancies.
Expert committee review. During expert committee review, a bilingual clinical
expert reviewed the synthesis document of T1 and T2 translations and compared it to the
source English language survey. This allowed issues of translation to be further assessed, and
the subsequent discussion of key translated terms that needed to be conceptually aligned with
the source language (see Appendix C Expert committee report of discrepancies and their
resolution). One issue arose during expert committee review from the synthesis report with
the question: “Before this test was described, had you ever heard of a home stool test” as it
was translated without the word “before”, and thus the meaning differed. Therefore, the
wording was changed to be clear on what the question was asking with the inclusion of a
word that made the question conceptually aligned.
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Another issue was the use of different translation terms for a specific question. The
translated word for “not as bad” was “difficult” and assessed to be too harsh; therefore, it was
decided to literally translate the word “bad” rather than keep the translated term “difficult”.
Another example of an issue that arose during expert committee review was the omission of
key terms, such as “not sure” in applicable response categories. Consequently, this term was
translated and inserted into the appropriate places in the survey. Incorrect translation of
“yours” was also identified, as it was translated as “mine”; this was corrected in the survey.
Another translated term discussed was “painful” as it was translated to be “tortuous”,
which was considered to be too severe, and it did not truly represent the context of screening
colonoscopy. Therefore, the expert committee review discussion led to the decision to replace
the translated term for “painful” to a term that translated into “less severe”. A final issue that
emerged was the use of “professional” in the context of health professionals. Discussion led
to the resolution that the term was representative of medical professionals not professionals in
general, and thus was retained. While the expert committee review revealed key issues, some
translated terms would need to be tested during cognitive interviews to assess conceptual
understanding. For example, the literal translation of “bad” would have to be assessed to
determine if it was correctly understood as intended.
Summary. The Colon Cancer Screening Survey was cross culturally translated and
adapted into the Urdu language using a rigorous process. In the next stage, the survey was
pre-tested using cognitive interviews.
5.4 Cognitive Interviewing
The pre-testing of the Colon Cancer Screening Survey involved cognitive
interviewing to evaluate the survey in two languages, Urdu and English. The two main
objectives of cognitive interviewing were: (1) to determine if cross-cultural cognitive
interviews using scripted and emergent verbal probes were effective cognitive interview
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methods among Urdu and English speaking SA immigrants in Hamilton, Ontario; and, (2) to
pre-test the Urdu and English language versions of the survey for comprehension, and to
identify problems with questions and responses while comparing unique issues that emerged
between each group, and, to make revisions.
5.5 Methods
Cognitive interviewing has its foundations in social and cognitive psychology and
focuses on an individual‟s cognitive processing of questions and responses (Collins, 2003).
Testing the function of a survey using cognitive interview methods provides a logical first
step to evaluate a newly developed survey (Aday & Cornelius, 2006). The overall aims are to
reduce systematic error, and improve the functioning of the measures (Willis, 2005).
Cognitive interviewing does not merely collect answers to questions but elicits information
about the questions themselves (Boeije & Willis, 2013). This report of the pre-testing with
cognitive interviews used the Cognitive Interviewing Reporting Framework as a guide
(Boeije & Willis, 2013).
Cognitive interviewing for this study was conducted using a question-and-answer
process (Collins, 2003). The intent was to generate information by probing the participant
about each question to determine whether a specific question did or did not successfully meet
the intended measurement purpose of the researcher. The use of a question-and-answer
process uncovers evidence of problems to be addressed. These techniques may detect issues
of comprehension, processing or communication, and serves to complement subsequent field
testing (Collins, 2003). The use of qualitative methods to analyze cognitive interview data is
flexible and enables the collection of rich data on how well or consistent questions and
responses work in a survey prior to pilot testing.
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5.5.1 Cognitive interview framework
For a systematic approach, Tourangeau‟s (1984) theoretical framework was used.
This framework proposes a question-and-answer model that has four processing actions
involved in answering a question: comprehension, retrieval, judgement, and response. The
first process is “comprehension” of the question and reflects the level of understanding
among individual respondents compared to the researcher‟s intended meaning of the question
(Collins, 2003). Essentially, a question should be well understood, equally, by all potential
participants as the developer intended. Problems with comprehension may be related to the
meaning of the question or the term, and thus, requires further evaluation. The second process
involves “retrieval” of information from one‟s long-term memory, whether it is attitudinal or
informational detail (Collins, 2003). To assist with retrieval, questions should be designed to
assess ease to retrieve the information, specific detail of what is required, and use context to
assist participants with their individual recall strategies.
The third process is “judgement”, the stage by which participants provide a response
to the question posed. When determining a response, participants will go through their
understanding of the question, its relevance to them, their ability to respond, details and
accuracy required, and modification (Collins, 2003). The final process is the “response” that
involves internal conversion of an individual‟s thought process of what they plan to choose as
a response, and their verbal response. Cognitive processing of questions may entail numerous
steps that are fluid and involves moving between steps (Collins, 2003). As well, cognitive
processes used for responses may be conscious or automatic, and depend on the specific
question, for example, recall of autobiographic information affects retrieval processes (Willis,
1999). The objective of cognitive interviewing is to provide opportunities to elicit evidences
of these processes.
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5.5.2 Cognitive interview techniques
A number of techniques are used for cognitive interviews: (1) think-aloud
interviewing; and (2) scripted verbal probes and emergent verbal probes (Willis, 2005). The
use of think-aloud interviewing involves the participant verbalizing thinking as they respond
to a question while the interviewer records information. Participant training is typically
involved prior to the actual interview (Willis, 2005). The advantages of think-aloud is that it
limits interviewer induced bias, little training is required of the interviewer, and open-ended
questions elicit rich data. However, the disadvantages of think-aloud is that participants: (1)
will require time for training, which may be a deterrent; (2) may be resistant to following the
technique despite training efforts; (3) may experience greater burden; and (4) have greater
control, which may lead the individual to stray from the interview objectives (Willis, 1999).
Verbal probing is another common technique utilized in cognitive interviewing to
probe a specific question, a term, or the path that led to the response (Willis, 1999; Willis,
2005). There are variations of how verbal probes are used. An identified concern with a
question prior to pre-testing using cognitive interviews allows the researcher to develop a
scripted verbal probe for the cognitive interview protocol to assess the issue during
interviewing. Probes may also be scripted based on expert committee reviewers‟ assessment
of a problematic question or response (Willis, 2005). Using a standardized process, the
interviewer is responsible for following the flow of question and answers, and scripted verbal
probes using a protocol. Scripted verbal probes are ideal when cognitive interviewers do not
have extensive training or experience in cognitive interviewing. The verbal probe questions
formulated follow the Tourangeau‟s (1984) four step process (Willis, 1999).
Another form of verbal probing is emergent verbal probes that occur from
observations made during an interview, for example, if a participant hesitates, is confused, or
makes a query about a question or response. This involves the interviewer being attuned to
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these issues throughout the interview and formulating verbal probes as needed to elicit more
information from the participant on the problem with a question or response (Willis, 2005).
The advantages of verbal probing are that it: (1) is led by the interviewer who has
control; (2) allows the interviewer to probe when problems occur; and (3) involves a
straightforward training process for interviewers on how to administer a protocol with
scripted and emergent verbal probes. Disadvantages of verbal probes include artificial
responses related to the nature of probing, and potential for bias in responses (Willis, 1999).
5.5.3 Cross-cultural cognitive interviews
Cross-cultural cognitive interviewing is a variant of standard cognitive interviewing
described earlier in terms of the overall objective, the iterative testing, and the probing
techniques used (Willis, 2015). A unique feature of cross-cultural cognitive interviewing is
that it assesses cross-cultural equivalence between the source language and target language
survey measures and aims to determine if the variation of interpretation of items between
both is acceptable given the measurement goals.
Cross-cultural cognitive interviewing was an appropriate method to pre-test the Colon
Cancer Screening Survey to identify problems (covert and overt) and make modifications, as
well as assess previously developed and tested questions initially developed for other diverse
populations. Additionally, the survey was evaluated to assess if it was understood in the same
way in both Urdu and English languages. During the development phase of the survey (see
Chapter 4), expert review uncovered some issues in several items of key measures. A number
of anticipated problems related to comprehension of key questions and terms, judgement and
recall, and response selection were identified. Therefore, these were used to develop scripted
verbal probes for the cognitive interview protocol.
As the survey incorporated multiple measures as well as other individual items on
CRC screening knowledge, behaviours, and socio-demographics, there were additions and
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modifications to measures/items during survey development to make them relevant and
comprehensible to diverse SA immigrants (see Chapter 4). These modifications and additions
altered measures/items, and would require further testing. The newly developed survey had
not undergone cognitive testing; although, items on CRC screening practices drawn from
Vernon et al. (2004) were tested using cognitive interviews with diverse USA residents.
5.5.4 Cognitive interview methods used in this study
The methods of cognitive interviewing used for this study were scripted and emergent
verbal probes (Willis, 2005). The rationale for using these methods were because they were
the most feasible to use among ethno-cultural populations as it placed less responsibility on
the participant (Napoles-Springer, Santoyo-Olsson, O‟Brien, & Stewart, 2006; Levin et al.,
2009; Willis, 2005). The scripted verbal probe technique provided a structured method that
was useful and practical for the interviewer with limited skills in cognitive interviewing. To
prevent bias during the interview, scripted verbal probes were worded so they did not lead to
a particular response. Training of the interviewer was also an important aspect to minimize
bias in administration of the survey. Standardized construction of scripted verbal probes was
guided by consultations with the investigator, public health advisory group, and other
measurement experts (Willis, 2005). Given the length of the survey, the use of scripted verbal
probes focused attention on completing the survey in a timely manner.
Emergent verbal probes were also used by the cognitive interviewers to capture any
unanticipated problems within the survey and included observation of body language, such as
confusion or hesitation with a question or response category. Emergent verbal probing has
been found to be effective as a testing method among a variety of cultures and language
groups (Willis, 2015). Typical emergent verbal probe statements were: “Tell me more
about…”, “so you are saying…?”, and “I noted that you said…., can you tell me why”
(Willis, 2005). Combination verbal probing techniques using scripted and emergent verbal
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probes are the most effective to use during cognitive interviewing (Willis, 1999). Additional
space on the paper survey was provided after items that did not have a scripted verbal probe
to document emergent verbal probe details or participant feedback.
A cognitive interview protocol was developed and consisted of questions followed by
scripted verbal probes. There were 12 scripted verbal probes imbedded within the survey.
The process of survey administration incorporating scripted verbal probes utilized concurrent
probing; each item that had an attached probe was asked, responded to, and immediately
followed by the scripted verbal probe (Willis, 2005). The scripted verbal probe in the
protocol was formatted in the following way: (a) survey item; verbal probe appropriate to
examine the item and/or concept, or response options; (b) a description of the nature of the
issues or challenges detected; and (c) the decision to resolve issues based on testing (Willis,
1999). See Appendix D for the cognitive interview protocol that contains scripted verbal
probes and notes for documentation of emergent verbal probes.
5.5.5 Design
The cognitive interview survey protocol was organized into four sections: (1) items on
the home tool test assessing knowledge, uptake, and overall intention to have screening in the
future (items 1-6); (2) items on the colonoscopy procedure assessing knowledge and uptake
(7-9); (3) multi-item measurement instruments derived from the literature exploring
behavioural concepts relevant to colon cancer screening with inclusion of FOBT and
colonoscopy test questions (item 10-69); and, (4) socio-demographic questions (items 70-84)
(Appendix D). The survey protocol was administered in person, where the cognitive
interviewer led the administration using pen and paper. The cognitive interviewer read each
question out loud from the survey protocol while the participant listened. Time was given for
the participant to respond, and the cognitive interviewer manually recorded responses.
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The Colon Cancer Screening Survey was tested using the Urdu and English language
versions with SA immigrants in Hamilton, Ontario. The difference between the two groups
was only related to language and not specifically to pre-defined sub-groups; therefore, the
sample size of 30 participants was anticipated to be sufficient to meet study objectives
(Willis, 1999; Willis, 2005; Beatty & Willis, 2007). Pre-testing using cognitive interviews
were conducted in three rounds: an initial practice round, round one and round two, similar to
the process reported by Levin and colleagues (2009).
The initial practice round consisted of six interviews using the Urdu language survey
conducted with six SA immigrant participants in Hamilton, Ontario. Minor format and
wording edits were made to the cognitive interview protocol after the practice round and prior
to round one testing. The interviews during the practice round were meant to provide both a
source of training for the cognitive interviewer and the opportunity to modify the cognitive
interview protocol if needed. Round one consisted of 12 cognitive interviews with SA
immigrant participants: six with the Urdu language survey and six with the English language
survey. After round one and joint collaborative analysis and modification to the cognitive
interview protocol, round two cognitive interviews were conducted with 12 SA immigrant
participants; six with the Urdu language survey and six with the English language survey
(See Figure 1).
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Figure 1. Cognitive Interview Process
Ethics. Research Ethics Board (REB) approval was received from two affiliate
universities; University of Toronto, and Brock University. Informed consent was provided
verbally. Those who agreed to participate in the study signed a consent form. Participants
were informed that data collected would be safeguarded and that the cognitive interviewer
and researcher would maintain confidentiality. One cognitive interviewer was responsible for
conducting interviews in the Urdu language, and another cognitive interviewer in the English
language. Interviews were conducted at a time and location determined by the participant,
which was primarily in the evening or weekend day at their home. Audio-taping was not
undertaken because the interview was conducted in the participant‟s home and audio-taping
in the home would not have been respectful or culturally appropriate (R. Naheed, personal
communication, May 20, 2015). Participants were also informed that identification would be
removed from the survey and that findings would be reported in the aggregate form. A
$20.00 honorarium was given to each participant to thank them for their time.
5.5.6 Participant selection
Purposive sampling was used by the cognitive interviewers predominately via word-
of-mouth. The rationale for using word-of-mouth was that it provided more success in
Initial Practice Round
Interviewer-led in-person cognitive interviews
6 South Asian immigrants - Urdu
Minor revisions for format issues
Round 1
Interviewer-led in-person cognitive interviews
12 South Asian immigrants - 6 Urdu and 6 English
Joint collaborative analysis [initial practice round + round 1]
Modifications: Design, cultural and gender
Round 2
Interviewer-led in-person cognitive interviews
12 South Asian immigrants - 6 Urdu and 6 English
Joint collaborative analysis
No further modifications
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recruitment of participants who met eligibility criteria (Liu, Sha, & Park, 2013). Also,
cognitive interviewers were respected members of the community with good interpersonal
and communication skills, so this method was feasible. Participants were recruited from
community contacts and/or snowball sampling in select Hamilton, Ontario communities
where SA immigrants lived, worked, or congregated. Eligibility for inclusion was assessed
using the following criteria: 50 to 74 years of age, at average risk for colorectal cancer [no
personal or family history of colorectal cancer, no inflammatory bowel diseases, no
symptoms or bowel problems (Winawer, 2005)], origin country of birth from the Indian sub-
continent or SA diaspora, permanent residency, and Urdu and English language speaking
An eligibility form for each potential participant was developed for use by the
cognitive interviewers to ensure inclusion criteria were met. Participants were asked about
their language ability (English, Urdu, and other SA languages), for instance, were they more
comfortable being interviewed in Urdu language or English language. Participants who
preferred to be interviewed in Urdu spoke this language on a more frequent basis than
English. During recruitment, attempts were made to recruit participants with varying years of
residence in Canada, a proxy measure used to assess acculturation (Willis & Zahnd, 2007).
The rationale for using years of residence was because it provided an estimate of resident
status, enabled the inclusion of diverse perspectives, and allowed comparisons to be made
across language groups.
5.5.7 Cognitive interviewers and training
Two Urdu and English speaking research assistants were hired to conduct cross-
cultural cognitive interviews. Cognitive interviewer A had no prior cognitive interview
training. However, she had prior experience working in the SA immigrant community with a
public health worker from the Chronic Disease Prevention Program at Hamilton Public
Health Services. Cognitive interviewer A was a well-respected member of the community
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with good interpersonal and communication skills, and had resided in Canada for over 15
years. Cognitive interviewer B also had no prior cognitive interview training and had resided
in Canada for approximately two years. She was a gynaecologist in her native country
(Pakistan), and currently in training to obtain her medical doctor equivalence in Canada.
Cognitive interviewer B also had good interpersonal and communications skills. Interviewer
training was an iterative process and was provided prior to interviews, after the initial
practice round, and after round one.
Training of cognitive interviewers took place at a community center. Initial training
was comprised of three hours and an additional two hours provided throughout the testing
rounds. Training material covered how to administer survey questions exactly as worded in
English, or as they were translated in Urdu. Content in training encompassed: (a) the use of
scripted verbal probes; (b) data collection procedures; (c) the detection of problems or issues
through non-verbal or observed behaviours; (d) the use of emergent verbal probes; (e) the
interview process and a mock demonstration; and (f) joint collaborative analysis with
subsequent decision-making processes. The interviewer training session provided details on
how to observe and note participant‟s hesitations in responding to questions, inconsistencies
in responses, concerns raised by a participant, and how to frame emergent verbal probes.
Cognitive interviewers‟ were instructed to be clear, unbiased or leading when using scripted
and emergent verbal probes (Willis, 2005).
The cognitive interview protocol was formatted, and cognitive interviewers were
encouraged to adhere to the protocol in the language of the interview, Urdu or English. First,
the cognitive interviewers explained the consent form verbally including the research,
objectives, and purpose. After the consent was signed by the participant, the cognitive
interviewer provided a clear introduction to the survey and the purpose of the interview to
familiarize each participant with what they would be asked to do. The cognitive interviewer
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then discussed the verbal probes that would be used. Thereafter, she provided a sample
question to familiarize participants with a typical question that may be used: “Do you believe
that you eat a healthy diet?”, and responses were “yes”, “no”, and “not sure/do not know”.
The participant then responded accordingly while the interviewer documented their response.
Verbal probes that included paraphrasing and comprehension were then provided: “Can you
tell me in your own words what that question is asking?” and “What, to you, does eat a
“healthy diet” mean? Participant responses were recorded, as were any reactions or
observations. The interviewer then asked if the participant had any further questions before
moving on in the interview with the full administration of the survey.
The cognitive interviewers aimed to be consistent and asked questions in the order
presented concurrently using the cognitive interview protocol including scripted verbal
probes, adding notes for emergent verbal probes, and making detailed annotations. The
cognitive interviewers used note-taking during the interview. All documented responses or
behaviours were recorded. The cognitive interviewer who conducted interviews in the Urdu
language completed two surveys, one in Urdu, and one in English. For the Urdu language
survey, the cognitive interviewer conducted the interview in the target language while
simultaneously taking notes and documenting them on an English version of the survey. Any
critical issues from the target language were also documented to assess language and
translation, or other related issues. These two reports were retained to be referred back to as
necessary. The cognitive interviewer who conducted interviews in the English language made
notations on one document.
5.5.8 Data analysis
Analysis of data from the practice round, round one and two was conducted using a
joint collaborative analysis process involving data reduction and interpretations (Miller,
Mont, Maitland, Altman, & Madans, 2011). This process involved each cognitive interviewer
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reviewing results after the interview, and then meeting with the lead researcher to discuss
individual review results. This allowed a joint process of sharing information and
interpretation so that all were involved in determining question functioning at the individual
level. The framework proposed by Willis (2005) for data analysis was used to undertake joint
collaborative analysis.
The first step involved the use of the cognitive interview protocol by the cognitive
interviewer as a recording tool to write participant responses and comments during the
interview. This data formed the “case history” and was taken by the lead researcher who
input data into an electronic copy and documented summary information with participation
identification code under each item (Willis, 2005). The second step was the aggregation of
results by each interviewer from all individual interviews by questions to assess if there were
common themes. This was facilitated as a separate joint collaborative analysis meeting with
both cognitive interviewers and the lead researcher. The third step entailed a joint
collaborative meeting between cognitive interviewer and the lead researcher to discuss
aggregate of results for the practice round, round one, and round two. All interview data were
brought together to examine the results more closely. The purpose was to discuss results
across all interviews; first overall, and then item-by-item separately for the Urdu language
interviews, and for the English language interviews. Discussion involved the observation of
patterns or recurrent themes in the identification of problems, similarities, or unique
interpretations.
A final step involved the lead researcher utilizing a qualitative method to analyze data
using data reduction procedures and confirm main issues that emerged (Patton, 2002). A
problem was deemed important if two or more participants identified an issue with a question
or response category; however, individual issues were also captured. A written summary was
then developed reporting on the main issues and revisions that were required using previously
227
reported categories of general design, culture, gender, and translation issues (Willis &
Zahand, 2007).
5.6 Cognitive Interview Findings
A total of 30 participants completed an interview that was on average an hour. Age,
gender and years in Canada were similar across Urdu language and English Language
participants. Mean age of participants in both groups was 59 years. Over 50% of participants‟
self-identified ethnic or religious background was Pakistani. Similarly, most participants‟
country of birth was Pakistan with 40% reporting India as their country of birth. All
participants had a family physician, and of these, 63% reported their physician was of the
same cultural background. See Table 1 for demographic characteristics of participants.
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Table 1 Demographic characteristics of cognitive interview participants
Characteristic Language of
participants
Characteristic Language of
participants
Urdu
(n=18)
English
(n=12)
Urdu
(n=18)
English
(n=12)
Gender Self-Report Ethnic/Religious background
Male 8 7 Bangladeshi
Female 10 5 Pakistani 12 5
Sikh 3 1
Age Sri Lankan
Mean 58.8 59 Tamil
Bengali
Country of Birth Hindu 2 5
India 6 6 Punjabi 1
Pakistan 11 5 Nepali
Bangladesh Gujarati
Other 1 Other 1
Years in Canada Education completed
Mean 19 years 20 years Less than high
school
4 1
>30 years (n) 3 3 Completed high
school
4 1
21-30 years(n) 2 1 Completed some
college/university
4 0
11-20 years(n) 11 6 Completed trade,
certificate, or
diploma
0 0
6-10 years(n) 0 2 University
certificate/diploma
0 0
Less than 1 years(n) 2 0 University degree 3 4
Post graduate
degree
3 6
Family Physician
n % Family Physician
Cultural
background
n %
Yes
No
30
0
100
0
Yes
No
NA
19
7
4
63
23
13
Qualitative findings. Scripted and emergent verbal probing were effective methods
for use among Urdu and English language speaking SA immigrants. The participants were
assessed on how well they understood a particular question or interpreted a term
(comprehension) by first paraphrasing the question into their own words and describing the
term of concern. While the use of think-aloud technique was avoided because of prior reports
indicating that there were difficulties with this technique among some ethno-cultural
229
populations (Pasick et al., 2001; Pan, 2004), it was interesting to note that a good proportion
of participants provided think-aloud responses in all rounds of cognitive interviews.
Participants came to anticipate verbal probes throughout the interview. Based on Willis
(1999), the use of verbal probes may come to bear a resemblance to think-aloud techniques.
Some participants‟ spontaneously responded with their thoughts about the rationale for their
responses or merely to provide opinions based on the particular question. Consequently,
think-aloud responses were recorded in questions that did not have scripted verbal probes,
where Urdu language participants provided responses to 56% of questions during interviews,
and English language participants provided responses to 63% of questions during interviews.
The interview summaries included qualitative data and provided the main data source
for analysis. The analysis focused on item level results of each individual interview, and
aggregated results across each round of interviews. Qualitative analysis of the practice round
and round one were combined because no problems aside from word or format issues were
encountered in the practice round. Using a joint collaborative analysis process, interviews
were analyzed separately for Urdu and English language results for each round. There was no
necessity to go beyond round two as the major problems were identified in round one, and no
new issues emerged after round two, thus saturation was reached (Glaser & Straus, 1967).
General design, cultural, gender specific, and translation issues were identified.
5.6.1 General design issues
Qualitative analysis of interview data revealed a number of general design concerns
equally for Urdu and English language interviews. The majority of issues surfaced in round
one and revisions were made for further testing in round two (see Table 2 for general design
issues and revisions). The type of revisions included the provision of instructions for the
interviewer of the first item in the survey related to having heard about CRC screening (see
Appendix D). The rationale was that several participants had not initially realized that the
230
term, “home stool test” related to screening; however, when they were questioned about
having a screening test, they were aware of having the test ordered at some point in their past.
Therefore, interviewer instructions were added to ensure that information was captured
correctly because participants may not have heard the specific name of a test but it may have
been completed because it was ordered by their physician. Another issue that arose related to
the position of an item in the survey. Item 6 asked about participation in other colon cancer
screening procedures and this item was placed directly after items about the home stool test.
At this point in the survey, participants provided feedback that they did not know of other
colon cancer screening tests. Therefore, the item was moved to item 9, after the colonoscopy
description and related items were introduced.
Another design issue related to the exclusion of children in the responses of socio-
demographic item 76 about family members in the household. Given the collectivist nature of
SA immigrants, it was important to distinguish this, so an additional response category was
added to include “living with my children”. Another issue arose in relation to the response
categories. Participants provided comments that they did not know whether colonoscopy was
painful or that it may result in complications; however, they responded correctly using the “I
neither agree or disagree” response category. Therefore, the response categories did not need
to be revised.
In round one and two, there was discussion to consider the removal of items 40 and
41 related to cost of screening, as they were not seen as relevant in the Canadian context
because of universally funded health plan coverage. These items aligned with a socio-cultural
contextual issue related to the cost of screening tests. Given that the item was drawn from
measures used to assess barriers to screening in the USA context, this was understandable.
However, the decision was to retain this item for future research assessing measurement
properties to determine if the item would be conceptually relevant to a larger sample of the
231
SA immigrant population in Canada. Overall, modifications improved general design issues
because in round two, no further issues arose.
Table 2 General Design Issues and Revisions
General Design
Issue Description Revisions
Skip pattern
Urdu language
English language
Item 1: Two participants, one in each group
indicated that while they had not heard of the
home stool test and perhaps did not recognize it,
they had the procedure at some time.
Cognitive interviewers instructions
were inserted after item 1: “If
participant did not hear about it but
had the procedure, please go to
1a)”
Format and
position of item in
survey
Urdu language
Item 6: “Do you plan to go for any other type of
colon cancer screening test in the future?” was
problematic for a number of participants (Urdu,
n=3) because at this point in the survey,
colonoscopy had not been explained. These
participants provided comments that they did not
know about any other tests. Additionally, during
the joint collaborative analysis, it was determined
that participants provided the rationale that they
would only do a test with physician
recommendation. Given that the test requires a
doctor‟s order in Canada, it was noted that
additional information regarding this would be
important to include.
Item 6 was relocated and became
item 9, after the description of
colonoscopy and related questions.
Modification of the question was
also indicated to include doctor
advice. “Do you plan to go for any
other type of colon cancer
screening test if your doctor
ordered the test (for example, a
colonoscopy)?”
Missing response
category
Urdu language
English language
Most participants in both groups stated they also
lived with children. This was not included in the
response categories for socio-demographic item
76. During the interview, the cognitive
interviewer added this with written notes.
An additional response was added
to item 76 response categories:
“Living with own children”.
Response category
English language
Items 54-56 referred to specific details about
colonoscopy and English language participants
who lacked knowledge provided additional
comments that they “did not know”. Responses
were in line with what was expected, “I neither
agree or disagree”.
Revising the response category for
items 54-56 was not indicated. The
rationale was that participant‟s
responses were in line with the
goals of testing the items. Only
English language participants and
no Urdu language participants had
this issue related to their not having
had a colonoscopy.
Item relevance
Urdu language
English language
Items 40 and 51: Cost was clear for all
participants. One issue arose for both Urdu and
English language participants; their general
knowledge of the test was that it was paid for by
the Ontario Health Insurance Plan (Round 1
English, n=3; Round 2 Urdu, n=3 and English,
n=2). During joint collaborative analysis
discussions, it was felt that some participants‟
may be confused and not know if there was a
cost, especially if they lacked knowledge.
Further discussion was undertaken
and it was decided to retain items
40 and 51 so that further testing
could be done in future through
research.
5.6.2 Cultural issues
Several culture-related issues emerged with items related to beliefs that may differ
between cultures (See Table 3 for examples of cultural issues and revisions). One cultural
232
issue that arose among both Urdu and English language participants was the culturally
appropriateness of item 19 related to the experience of colon cancer (see Appendix D). The
question “Problems I would experience with colon cancer would last a long time” inferred
that one had CRC. Therefore, the question was changed to be more culturally sensitive by
adding “if” so that the item was more in line with the possibility of a cancer diagnosis. No
further issues with this item arose at round two.
Another issue arose with item 66 regarding the influence of family and friends on
CRC screening decision-making. A number of participants believed that their doctor had
greater influence and that they would not discuss CRC screening with family or friends, and
responses reflected these perceptions. The suggestion was made by one participant to add a
“not applicable” response. No modification was made because recommendations have
postulated that “not applicable” responses compromise data collection (Krosnick et al., 2002).
Table 4 Cultural Issues and Revisions
Cultural Issues
Issue Description Revisions
Culturally
appropriateness
of item wording
Urdu language
English language
Item 19. “Problems I would experience with
colon cancer would last a long time”. One
participant who completed the English
language version indicated that the wording
was suggestive and intoned that the
individual had colon cancer, which was a
culturally sensitive issue for those who
believed there were connotations to being
diagnosed. As well, quite a number of Urdu
language participants (n=5) also used “if” in
their qualitative statements.
To better place item 19 in the
context of the meaning, and
make it more culturally
appropriate, the wording was
modified to: “Problems I would
experience if I had colon cancer
would last a long time”. This
was made for round two, and no
further problems emerged.
Topic not
discussed among
family members
English language
Item 66: “Members of my immediate family
think I should have colon cancer screening.”
Among English language participants (n=3),
comments provided indicated that the topic
of colon cancer was not discussed in the
family. However, for two participants, the
responses were in line with their selection.
Only one participant insisted on having a
“Not applicable” option. Perhaps, the fact
that this item was near the end of the survey
and motivation to complete the survey was
decreased, it resulted in the participant
asking for this option.
No modifications were made to
item 66 response categories.
Including a “not applicable”
response would seriously
compromise data quality as
having this option tends to
increase its selection in surveys
(Krosnick et al., 2002). Most
importantly, participants would
not employ cognitive processes
to come to a response and this
in turn may lead to satisficing
results.
233
5.6.3 Gender issue
A gender-related issue arose with the Urdu and English language interviews, whereby,
male participants did not have the option to select gender preferences for a health care
provider in item 83 (see Appendix D); however, they responded even though they were not
applicable (Table 4 for gender related issue and revision). This may have been due to the
limited experience of the cognitive interviewer or their lack of reading the item correctly. The
question was intended for female participants mainly because prior studies with SA
immigrant women reported on the preference for health care providers of the same gender
(Crawford et al., 2015a, b). Therefore, this was an item added to the survey for female
participants only. Revision of the item was done to be inclusive of both male and female
preferences for gender of health care providers. Minor re-wording modification addressed
this issue for round two and no further problems were noted.
Table 4 Gender Issue and Revision
Gender Specific Issue
Issue Description Revisions
Item wording was
gender specific
Urdu language
English language
Item 83, “If you are female and have a male
physician, would you prefer a female health
care provider, such as a female doctor or
female nurse practitioner for health exams?”
Responses categories included male, female,
and do not care. While this item was
intended for only females to respond, a
number of males (Urdu, n=2; English, n=2)
responded to the item indicating that they
preferred a male. Both cognitive
interviewers inadvertently asked this item,
which was of value because we would not
have picked up on this issue.
Item 83 was reworded for round
two to: “For health exams,
would you prefer a health care
provider who is?” The
responses categories also were
modified to: male, female, and
no preference.
5.6.4 Translation issue
During joint collaborative analysis, only one translation issue was revealed with item
59 (see Appendix D) from the English language survey: “I am confident that testing three
separate bowel movements would not be inconvenient” (Table 5 for translation issue and
234
revision). In the Urdu language, there was no literal term that could be used for
“inconvenient”; therefore, the translation term decided upon during cross-cultural translation
and adaptation was “hard to do”. Verbal probes involved participants frequently paraphrasing
the term “inconvenient”; however, there were times when English language participants
repeated the word with no further elaboration of the meaning. Examples of the meaning
ascribed to the term “inconvenient” among most Urdu language participant responses were:
“difficult for me”, “not easy to take test on different time because I am very busy and have
day care”, and “takes me out of my way to get it”. While the word “inconvenient” was not
overly challenging, we felt responses could have been elaborated upon for English language
participants. During joint collaborative analysis discussion, it was decided that rather than
change the word “inconvenient”, interviewer instructions would be added to the protocol.
These instructions would guide the cognitive interviewer to probe the participant further to
elicit more meaningful responses. In round two, the issue was resolved for English language
participant interviews as responses provided more paraphrasing of the term similar to the
Urdu language participant responses in round one.
235
Table 5 Translation Issue and Revision
Translation
Issue Description Revisions
English source
language term did
not incite further
elaboration in
probing as did the
translated term
English language
Item 59: “I am confident that testing three
separate bowel movements would not be
inconvenient.” The word “inconvenient” was
translated as “hard to do” in the Urdu
version. “Inconvenient” is an English term to
convey problematic or difficulty. In the
translation of the term, the expert committee
review of the term within the question was
translated into another comparable term: “I
am confident that testing 3 separate bowel
movements would not be hard to do.” This
was comprehensible in Urdu and resulted in
participants using the word “hard” when
paraphrasing but it also resulted in other
meaningful responses during verbal probes
such as: “difficult for me”, “not easy to take
test on different time because I am very busy
and have day care”, “a problem”, “not easy,
takes time‟, and “takes me out of my way to
get it”. In English, the word “inconvenient”
did not provide as meaningful responses to
verbal probing, for example: “too much
trouble”, “uncomfortable”, “uncomfortable
feeling”. Upon further discussion at the joint
collaborative analysis meeting, the CI
indicated that “uncomfortable” related to the
stool collection process and the impact on
the individual to do this in a given day.
No modification to the English
version of item 59 was made.
As this was a minor issue, it
was decided that providing
additional training to
interviewers on non-leading
probing was satisfactory.
Therefore, interviewer
instructions were added to
stimulate more meaningful
responses, particularly for
English language participants.
We used Urdu participants‟
responses to refer to in terms of
the appropriate probing
descriptors that should emerge.
5.6.5 Additional findings
An interesting observation that arose from the cognitive interviews included the
participants‟ use of think-aloud techniques. Often, participants provided rationale for why
they selected a response or merely wanted to comment on the question, and in doing so most
frequently referred to their family doctor. In round one, there were equal mentions of the
doctor among both the Urdu and English language interviews (Urdu n=13, English n=12);
however, in round two, English language interviews had 13 comments versus only five
comments from Urdu language interviews. While this was not a problem, it sheds light on the
importance of the family doctor in either seeking out information or their advice, or playing a
236
role in screening recommendations. Further, prior research supports the importance of
physician recommendation for access to CRC screening.
5.6.6 Summary of findings
The cognitive interview methods (i.e. scripted and emergent verbal probe techniques)
utilized to pre-test comprehension of questions and responses in the Colon Cancer Screening
Survey were successful among a sample of SA immigrants. A number of issues were
identified through three rounds of testing. Five general design issues were uncovered and
revisions included adding interviewer instructions, the relocation of an item to a different part
of the survey, and adding another response category. Two cultural issues and one gender
specific issue emerged and revisions included minor rewording of an item, and modification
to an item to include both male and female responses for family physician preference. One
translation related issue arose and no revisions were made, rather further instructions for the
cognitive interviewers were added. Modifications made to the survey were completed after
round one, and no further issues arose in round two.
5.7 Discussion
The development of the Colon Cancer Screening Survey involved a multi-stage
process that valued the perspectives of the SA population drawing on findings from prior
studies (Crawford et al., 2015a, b) and incorporated previously developed measures from the
extant literature. This study adds to the body of literature through the use of a rigorous
process of cross-cultural translation and adaptation, and pre-testing using cognitive
interviews of the Colon Cancer Screening Survey for future testing, research, and use among
Urdu and English language speaking SA immigrants.
Cross-cultural translation and adaptation of measures into another language have
been undertaken in a number of studies (Leung, Wong, & Chan, 2014; Ozsoy, Ardahan, &
Ozmen, 2007), however, they did not provide details of the framework used in the process. In
237
particular, no prior studies have been found that cross culturally translated and adapted a
colon cancer survey into the Urdu language. Menon, Szalacha, Prabhughale, and Kue (2014)
translated their CRC screening survey measures into Hindi and Gujarati in Chicago, Illinois.
They used a bilingual-bicultural committee translation approach derived from translation
methods proposed by Harkness and Mohler (2002). However, it is not clear if these methods
have undergone rigorous evaluation. In another study, Manne, Steinberg, Delnevo, Ulpe, and
Sorice (2015) administered their CRC screening survey in English, and no information was
provided on whether it was culturally adapted for the SA population in the Metropolitan New
York/New Jersey region.
In this study, cross-cultural equivalence was assessed by determining if interpretations
varied by two distinct language groups (English and Urdu). Literature reporting on pre-
testing of colon cancer screening measures that used standard cognitive interviews among
diverse samples are available (Fisher et al., 2009; Vernon et al., 2004), although,
comprehensive details of the processes are not always provided (Wolf et al., 2005). In studies
that have conducted cognitive interviews for CRC screening measures, the populations
included veterans, African American, Native American, Asian and White samples from the
USA, consisting of 18-36 participants, and used retrospective probing (Fisher et al., 2009;
Vernon et al., 2004). Retrospective probing has limitations because participants may not
recall what they were thinking when they responded to a specific question earlier when the
survey question was initially administered and this could lead to fabricating a probe response
(Willis, 1999). Cross-cultural cognitive interviewing has been undertaken to explore other
health related topics (i.e. work life, dietary, general health survey) among different ethno-
cultural groups and provided substantial details of the process (Fujishiro et al., 2010; Levin et
al., 2009; Willis & Zahnd, 2007).
238
The nature of general design issues were simple to correct and were equally evident in
both the English and Urdu language survey. Culture specific issues included culturally
sensitive wording. English language participants in round one, who were longer term
residents of Canada discussed the sensitivity of discussing colon cancer with family by
commenting when they were asked the question (item 66): “Members of my immediate
family think I should have colon cancer screening.” This revealed the diversity of individual
beliefs and practices in the cognitive interview sample. This aligns with prior studies, where
some SA immigrants did not believe it was appropriate to discuss cancer or screening with
family or friends (Crawford et al., 2015a), while others believed that family was supportive in
health decisions including CRC screening (Crawford et al., 2015a,b). Participants in this
study were able to respond using the appropriate response category and only one participant
wanted a “not applicable” response added; however, this was not considered an issue that
needed revision.
A gender specific issue also arose during round one regarding gender preferences of
the family physician. Prior research uncovered an issue related to the preferences for a female
physician among female SA immigrants (Crawford et al., 2015a). While it was not the intent
of the developers to exclude the male perspective, it was beneficial that cognitive interviews
identified the issue. Perhaps, the length of the survey was considerable as it was the second to
last question, and both the interviewer and participant were becoming fatigued. However, all
interviews were completed within approximately one hour, which is expected for cognitive
interviews (Willis, 2005). One participant provided comments during the interview on the
length of the survey; however, cognitive interviewers did say that several others made verbal
comments. The length of the survey will be considered in future iterations because for this
testing round it was important to assess benefits and barriers to two screening tests (home
stool test and colonoscopy), and this contributed to the length of the survey.
239
One translation issue arose in the English language survey concerning the term
“inconvenient” in item 59, and this most likely represented interviewer error in verbal
probing during English language interviews because it was no longer an issue for English
language participants in round two.
The additional finding related to participant mentions of their family physician. This
may have reflected their perceptions of the relationship, or general beliefs and values
associated with the family physician role. Perhaps, the family physician role in promoting
colon cancer screening is more important than their culture or ability to communicate in the
language of choice.
5.7.1 Strengths
The cross-cultural translation and adaptation and pre-testing of the Colon Cancer
Screening Survey resulted in key strengths to consider in future research with this population
or other ethno-cultural groups. A cross-cultural translation and adaptation method that
included two individual forward translations, a synthesis report of two forward translations,
and expert committee review was used in this study (Beaton et al., 2000; Epstein et al., 2015).
This enhanced rigor and possibly was related to the lack of translation issues found during
cognitive testing.
The cognitive interviews were conducted in the field and face-to-face. Participants
were interviewed in their home by cognitive interviewers, which is preferable to a cognitive
lab because it emulates real survey administration practices that are likely to take place when
the survey is fielded (Willis, 1999). The opportunity to use a cognitive lab was not an option
because it was not available or feasible due to limited financial resources. While conducting
cognitive interviews in the field were done out of convenience, it is better to conduct
cognitive interviews that deal with sensitive topics in the field to facilitate more comfort,
accuracy, and encourage more truthful responses (Willis, 1999). We believe that the sensitive
240
nature of questions in the survey related to bowel habits was more conducive, appropriate,
and promoted more accurate responses during testing in the field.
The evaluation illustrated that the cognitive interview process proved to be successful
among SA immigrants who completed both an Urdu language and English language version
of the survey. Overall, participants were enthusiastic and responded to verbal probes that
provoked follow up to their responses with rationale for selection, or comments that took on
aspects of think-aloud techniques. This supports findings from one review that most studies
employing verbal and emergent probing were effective across diverse language and cultural
groups (Willis, 2015).
The use of a joint collaborative process in analyzing data was a method considered to
be favourable in comparing results within a group and the decision-making process involved
in assessing the function of each question individually for each interview (Willis, 2015). This
strategy was beneficial to use due to the limited experience of cognitive interviewers, and
also to promote incremental training moments. During the interviews, the lead researcher was
in constant communication with cognitive interviewers to provide support, to share
information, and to assess if there were any issues at multiple time points. For example,
during the practice round, the cognitive interviewer was in communication regarding a query
about several process issues with conducting the interviews, and the lead researcher assisted.
There were multiple meetings held for training purposes and for joint collaborative analysis
(n=6). Additional time was also required for analysis and review of themes by the lead
researcher. The goal was to work together for the purpose of not only further processing of
data, interpretation, and aggregation but also to support cognitive interviewers with their
work (Miller et al., 2011). Depending on the experience of cognitive interviewers, the
continuing support by the lead researcher may prove more beneficial in detection of issues for
those conducting research with novice cognitive interviewers.
241
5.7.2 Limitations
In this study, there were several limitations. The cognitive interviews were not audio
and video recorded for later review. The audio or video recording may have uncovered more
problematic issues than handwritten notes by cognitive interviewers. The coordination of
using audio and video taping would have been problematic because it would have involved
more time for cognitive interviewer training as well as additional costs. Furthermore, asking
permission to audio or video tape may not have been culturally appropriate because
interviews were held in participant‟s homes. If audio or video recording was feasible, it may
have been beneficial to use for quality control measures to assist cognitive interviewers to
improve cognitive verbal or emergent probing techniques.
Similarly, a second limitation was that the cognitive interviewers lacked substantial
training or any experience with cognitive interviewing despite their fluency in both languages
and good interpersonal and communication skills. However, hiring expert cognitive
interviewers was not an option given the limited availability of qualified experts in the area.
In keeping with Willis‟ (2015) recommendations, it is acceptable to hire a cognitive
interviewer who is not as experienced in cognitive interviewing but capable of speaking the
target language well as long as he/she has access to scripted verbal probes and of course,
receives appropriate and adequate training.
A third limitation was related to participant recruitment for cognitive interviews as
there were only 13% of participants who had been in Canada for less than 10 years. While the
cognitive interviewers attempted to recruit participants who were more recent immigrants,
there were issues with lack of familiarity with the topic and comfort with the cognitive
interviewer. A greater proportion of newer immigrants may have uncovered problems with
the Urdu language survey as newer immigrants may not be as familiar with preventive health
practices such as cancer screening (Oelke & Vollman 2007). This may relate to socio-cultural
242
adaptation in the new society. Gaining cultural knowledge and skills occurs over time;
therefore, those settled for less time may be in the process of continuing to develop socio-
cultural knowledge and skills related to the adoption of preventive health practices (Berry,
1997). A lack of familiarity with the term “screening” may have also been related to
acculturation (Vernon et al., 2004). In future, the recruitment of more recent immigrants will
be of importance when further testing the Colon Cancer Screening Survey.
Lastly, cognitive interviews presented a good method to uncover issues of
comprehension and function. The Colon Cancer Screening Survey will require pilot testing to
examine beliefs, attitudes, facilitators, and barriers that influence colon cancer screening
uptake among SA immigrants in Canada. As well, key measures in the survey will need to be
tested for reliability and validity in future research.
5.8 Conclusion
The development of a Colon Cancer Screening Survey that was relevant and
culturally appropriate for use among Urdu and English language speaking SA immigrants
contributes to knowledge and understanding of factors that influence CRC screening
behaviour. This paper sought to describe cross-cultural translation and adaptation, and pre-
testing using cognitive interview techniques. Survey development involved many iterative
steps and the inclusion of the SA immigrant population in research was undertaken using an
evidence-based and rigorous approach. The process of cross-cultural translation and
adaptation into the Urdu language was conducted to reach a broader and diverse sample of
SA immigrants. The cognitive interviews using scripted and emergent verbal probes were
successful methods utilized among a sample of the SA immigrant population in Hamilton,
Ontario. Pre-testing of the Urdu and English language survey versions among SA immigrants
evaluated the conceptual basis of previously developed measures. Further testing will entail
pilot testing the survey in a sample of SA immigrants in Ontario, Canada. Future research
243
will also be required to assess psychometric properties of key measures in the survey. Once
reliability and validity of measures in the survey have been established, the Colon Cancer
Screening Survey will be utilized in a larger cross sectional study to advance understanding
of factors that influence colon cancer screening uptake among SA immigrants in Canada.
244
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Appendix A Results of two forward translations Translator # 1: RN Translator #2: ND
Original Version Item:
Forward
Translated Version
T-1
Forward
Translated
Version
T-2
I would first like to begin by asking you about
screening for colon cancer.
Screening for colon cancer means having a test to
check for cancer even if you do not have symptoms
or problems with you bowels.
√ √
The following questions are about the home stool
test, a test to check for colon cancer. In your home,
you take a sample of fecal matter or stool (poop)
and follow the instructions to complete the test.
The test checks for small amounts of blood that you
cannot see in the stool.
√ √
1. Before this test was described, had you ever
heard of a home stool test?
Yes
No
Not sure/Do not know
√
Response
√
√
Response
√
1a. If “yes” to “ever heard”:
Have you ever had stool test using a “home” test
kit?
Yes
No
Not sure/Do not know
√
Response
√
√
Response
√
1b. If “yes” to “ever had”:
How many home stool tests have you done in the
last 5 years?
___________ (number 1 to 5)
Not sure/do not know
√
Response
√
√
Response
√
2. When did you do your most recent home stool
test?
A year ago or less
More than 1 but not more than 2 years ago
More than 2 but not more than 5 years ago
More than 5 years ago
Not sure/ do not know
√
Response
√
√
Response
√
3. Why did you do your most recent home stool
test?
Part of a routine examination or check up
Because of a symptom or health problem
Follow-up of an earlier abnormal test
Not sure/do not know
√
Response
√
√
Response
√
4. Have you thought about doing a home stool test
in the future?
Yes
No
Not sure/Do not know
√
Response
√
√
Response
√
5. Do you plan to have a home stool test in the
future?
Yes
No
Not sure/Do not know
√
Response
√
√
Response
√
251
Original Version Item:
Forward
Translated Version
T-1
Forward
Translated
Version
T-2
6. Do you plan to go for any other type of colon
cancer screening test in the future?
Yes
No
Not sure/Do not know
√
Response
√
√
Response
√
Section Two This next group of questions will also ask about
screening for colon cancer.
Screening for colon cancer means having a test to
check for cancer even if you do not have symptoms
or problems with you bowels.
√
Response
√
√
Response
√
The following questions are about colonoscopy,
another test to check for colon cancer. The test is
done in a clinic setting to examine the entire colon
using a narrow tube with a light that is inserted
into the rectum (your bottom). The day before the
test, special instructions on how to flush out the
colon are given to you, such as using a laxative to
make sure the colon is empty. The preparation
makes a person go to the bathroom often. During
the test, you may be given medicine through a
needle in your arm to make you sleepy. You will
need someone to drive you home. You may need to
take the rest of the day off from your usual
activities.
√ √
7. Before these tests were described, had you ever
heard of colonoscopy?
Yes
No
Not sure/Do not know
√
Response
√
√
Response
√
7a. If “yes” to “ever heard”:
Have you ever had a colonoscopy?
Yes
No
Not sure/Do not know
√
Response
√
√
Response
√
7b. If “yes” to “ever had”:
How many colonoscopy examinations have you
had in the last 10 years?
1
2
>2
Not sure/do not know
√
Response
√
√
Response
√
8. Was your most recent colonoscopy:
A year ago or less
More than 1 but not more than 2 years ago
More than 2 but not more than 5 years ago
More than 5 years ago
Not sure/ do not know
Word “recent” –
provided translation
that meant “more
fresh”
Word “recent” –
provided a translation
with meaning of
“when”
252
Original Version Item:
Forward
Translated Version
T-1
Forward
Translated
Version
T-2
9. Why did you have your most recent
colonoscopy?
Part of a routine examination or check up
Because of a symptom or health problem
Follow-up of an earlier abnormal test
Not sure/ do not know
√
Response
√
√
Response
√
Section Three
The following group of questions will
ask you about your feelings and
beliefs about colon cancer.
Please tell me whether you agree or
disagree with the following statements
about colon cancer in general.
√
√
Strongly disagree
Disagree
Neither agree nor disagree
Agree
Strongly agree
√ These survey
response options are
the most recognized in
native countries, so
they are well translated
√
10. It is extremely likely I will get colon cancer in
the future.
√ √
11. I feel I will get colon cancer in the future. √ √
12. There is a good possibility I will get colon
cancer in the next 10 years.
“10 years” translated in
the statement.
The terms “10 years”
was not translated in
the statement.
13. My chances of getting colon cancer are great. √ √
14. I am more likely than the average person to get
colon cancer.
√ √
15. I am less likely than other people my age to get
colon cancer.
√ √
16. The thought of colon cancer scares me. √ √
17. When I think about colon cancer, my heart
beats faster.
√ √
18. I am afraid to think about colon cancer. √ √
19. Problems I would experience with colon cancer
would last a long time.
√ √
20. Colon cancer would threaten a relationship with
my partner.
√ √
21. If I had colon cancer, my whole life would
change.
√ √
22. If I developed colon cancer, I would not live
longer than 5 years.
√ √
23. If I am fated to get colon cancer, I will get
colon cancer; there is nothing I can do to change
fate.
√ √
24. Colon cancer is like a death sentence; if I get it,
I will surely die from it.
√ √
253
Original Version Item:
Forward
Translated Version
T-1
Forward
Translated
Version
T-2
The following group of questions will
ask you about your reasons for having
colon cancer screening using a
home stool test. Please tell me
whether you agree or disagree with the
following statements.
√ √
25. Finding colon cancer early will save your life. √ √
26. The treatment for colon cancer may not be as
bad if the cancer is found early.
√ √
27. A home stool test will help find colon cancer
early.
√ √
28. A home stool test will decrease your chances of
dying from colon cancer.
√ √
29. A home stool test will help you not worry as
much about colon cancer.
√ √
30. A home stool test will
give you peace of mind.
√ √
The following group of questions will ask you
about your reasons for having colon cancer
screening using colonoscopy. Please tell me
whether you agree or disagree with the following
statements.
√ √
31. Finding colon cancer early will save your life. √ √
32. The treatment for colon cancer may not be as
bad if the cancer is found early.
√ √
33. A colonoscopy will help find colon cancer
early.
√ √
34. A colonoscopy will decrease your chances of
dying from colon cancer.
√ √
35. A colonoscopy will help you not worry as
much about colon cancer.
√ √
36. A colonoscopy will
give you peace of mind.
√ √
The following group of questions will ask you
about why you would NOT having colon cancer
screening using a home stool test. Please tell me
whether you agree or disagree with the following
statements.
√ √
37. You are afraid to have a home stool test
because you might find out something is wrong.
√ √
38. A home stool test is embarrassing. The word
“embarrassing” was
translated using a
different term “upset”.
The word
“embarrassing” was
translated into
another word
“shameful”.
39. You do not have time to do a home stool test. √ √
254
Original Version Item:
Forward
Translated Version
T-1
Forward
Translated
Version
T-2
40. The cost would keep you from having a home
stool test.
√ √
41. You do not need to do a home stool test
because you have no problems.
√ √
42. You do not know how to do a home stool test. √ √
43. You do not have privacy to do a home stool
test.
√ √
44. Collecting a stool sample to do a home stool
test is unpleasant to you.
√ √
45. You don‟t know where to go to get a home
stool test.
√ √
46. There is no one who speaks your language at
the doctor‟s office.
√ √
47. The doctor never told you to have a home stool
test.
√ √
The following group of questions will ask you
about why you would NOT having colon cancer
screening using a colonoscopy. Please tell me
whether you agree or disagree with the following
statements.
√ √
48. You are afraid to have a colonoscopy because
you might find out something is wrong.
√ √
49. A colonoscopy is embarrassing. The word
“embarrassing” was
translated using a
different term “upset”
The word
“embarrassing” was
translated into
another word
“shameful”.
50. You do not have time to do a colonoscopy. √ √
51. The cost would keep you from having a
colonoscopy.
√ √
52. You do not need to do a colonoscopy because
you have no problems.
√ √
53. You feel anxious about having a colonoscopy
because you don‟t really understand what will be
done.
√ √
54. Having a colonoscopy is painful. √ √
55. Having to follow a special diet and taking a
laxative would keep you from having a
colonoscopy.
√ √
56. You are afraid to have
colonoscopy because of the
possibility there may be
bleeding or tearing of the
colon.
√ √
57. Transportation problems
would keep you from having a
colonoscopy.
√ √
255
Original Version Item:
Forward
Translated Version
T-1
Forward
Translated
Version
T-2
The following group of questions will ask you
about you confidence in completing the home stool
test. Please tell me whether you agree or disagree
with the following statements.
√ √
58. I am confident that using the home stool test
screening kit would be easy.
√ √
59. I am confident that testing three separate bowel
movements would not be inconvenient
√ √
60. I am confident that I will not find using the
home stool test embarrassing.
The word
“embarrassing” was
translated using a
different term “upset”.
The word
“embarrassing” was
translated into
another word
“shameful”.
61. I am confident that I would not find the home
stool test distasteful.
√ √
62. I am confident that I would find time in the day
to complete the home stool test.
√ √
63. I am confident that I could do the home stool
test correctly.
√ √
64. I am confident that I could do the home stool
test on a regular basis.
√ √
The following group of questions will ask you
about the people in your life who would help you
to have colon cancer screening. Please tell me
whether you agree or disagree with the following
statements.
√ √
65. I want to do what members of my immediate
family think I should do about colon cancer
screening.
√ √
66. Members of my immediate family think I
should have colon cancer screening.
√ √
67. My doctor or health professional thinks I
should have colon cancer screening.
√ √
68. I want to do what my doctor or health
professional thinks I should do about colon cancer
screening.
√ √
69. I want to do what my extended family and
friends think I should do about colon cancer
screening.
√ √
I would now like to ask you questions about your
background. Your responses will be kept
completely confidential.
√ √
Demographic Questions: T1 and T2 in agreement with no modifications required
256
Appendix B: Synthesis report for T1 and T2 and resolution of discrepancies
Issue: (specify item # and describe issue) Resolution Question 8: “Was your most recent
colonoscopy:”
Word “recent”: Different translations
T1 translation: “More fresh”
T2 translation: “When”
T1 translation retained as per consensus.
Question 12: “There is a good possibility I will
get colon cancer in the next 10 years.” T1 translated “10 years”
T2: Omitted “10 years” in translation of item
T1 translation retained as this was correct.
Question 38: “A home stool test is
embarrassing.”
Word “embarrassing” was translated
differently for T1 and T2
T1: “upset”
T2: “shameful”
T2 translated term was retained as per
consensus.
Question 49: “A colonoscopy is embarrassing.”
Word “embarrassing” was translated
differently for T1 and T2
T1: “upset”
T2: “shameful”
T2 translated term was retained as per consensus.
Question 60: “I am confident that I will not
find using the home stool test embarrassing.”
Word “embarrassing” was translated
differently for T1 and T2
T1: “upset”
T2: “shameful”
T2 translated term was retained as per
consensus.
257
Appendix C: Expert Committee report of discrepancies and their resolution
Expert Committee Membership
Role Name
Methodologist/Content expert – Nurse, and
PhD Candidate
Joanne
Bilingual expert – South Asian Health
Educator at Public Health
RA
Translator 1 – Lay Person RN
Translator 2 – Masters in Nutrition ND
Report of discrepancies and their resolution
Issue: Specify item # and describe issue Resolution
Question 1
The word “described” was not clear as posed
in the statement. It did not clearly state what
the question is asking “before” as in prior to
the test being described by the interviewer.
The question was reworded to be
conceptually correct in meaning and
congruent to the English version by the
Clinician with agreement by all.
Question 1
Response category “Not sure/Do not know”
translation did not include “Not sure”
Translation of “Not sure” added.
Question 1a
The term “kit” was not required in the
translation.
The term “kit” was removed because it was
clear without it in the translation.
Question 1a
Response category “Not sure/Do not know”
translation did not include “Not sure”
Translation of “Not sure” added.
Question 1b
Response category “Not sure/Do not know”
translation did not include “Not sure”
Translation of “Not sure” added.
Question 2
Response category “Not sure/Do not know”
translation did not include “Not sure”
Translation of “Not sure” added.
Question 3
Response category “Not sure/Do not know”
translation did not include “Not sure”
Translation of “Not sure” added.
Question 4
Response category “Not sure/Do not know”
translation did not include “Not sure”
Translation of “Not sure” added.
Question 5
Response category “Not sure/Do not know”
translation did not include “Not sure”
Translation of “Not sure” added.
Question 6
Response category “Not sure/Do not know”
translation did not include “Not sure”
Translation of “Not sure” added.
258
Question 7
The word “described” was not clear as posed
in statement. It did not clearly state that the
question is asking “before” as in prior to the
test being described by the interviewer.
The question was reworded to be conceptually correct in meaning and
congruent to the English version by the
Clinician with agreement by all.
Question 7
Response category “Not sure/Do not know”
translation did not include “Not sure”
Translation of “Not sure” added.
Question 7a
Response category “Not sure/Do not know”
translation did not include “Not sure”
Translation of “Not sure” added.
Question 7b
Response category “Not sure/Do not know”
translation did not include “Not sure”
Translation of “Not sure” added.
Question 8
Response category “Not sure/Do not know”
translation did not include “Not sure”
Translation of “Not sure” added.
Question 9
Response category “Not sure/Do not know”
translation did not include “Not sure”
Translation of “Not sure” added.
Question 26
Word “bad” was determined to be a bit harsh,
and translated as “difficult”.
The suggestion was to translate using the
literal word in Urdu, which is “bad” to make
it more conceptually relevant.
Question 28
Word “your” was incorrect as its meaning
was “mine”.
This was corrected to be conceptually
correct, to “yours”.
Question 32
Word “bad” was determined to be translated
into another word, such as “hard”
Suggestion was to translate to a word that
was more literal to make it more
conceptually relevant.
Question 34
Word “your” was incorrect as its meaning
was “mine”.
This was corrected to be conceptually
correct, to “yours”.
Question 54
The word “painful” was translated using a
more severe word, “tortuous”.
The word was modified to be more in line
with pain experience. The translated term
was modified to “less severe”
Question 68
The word “professional” was discussed
because Clinician felt it represented more of
professional experience.
The word was retained because T12 version
of “professional” was translated to be
representative of medical professionals.
259
Appendix D Colon Cancer Screening Survey Cognitive Interview Protocol
Thank you for your interest in participating in this research study. Your contributions will help us to
learn more about colon cancer screening practices among South Asian immigrants in your
communities. This information will be important to public health and health services who promote
screening programs in Ontario.
Colon cancer is a disease that affects the large intestine including the colon and rectum, and it is a
common cancer in Canada. Men and women have the same chance of getting the disease. Colon
cancer screening is a way to check for pre-cancer or cancer even if you do not have symptoms. By
having a screening test, you can stop the disease from developing or find it early to treat it or cure it.
Screening is important for all Canadians including immigrants.
SECTION ONE
I would first like to begin by asking you about screening for colon cancer. Screening for colon cancer
means having a test to check for cancer even if you do not have symptoms or problems with you
bowels.
The following questions are about the home stool test, a test to check for colon cancer. In your home,
you take a sample of fecal matter or stool (poop) and follow the instructions to complete the test. The
test checks for small amounts of blood that you cannot see in the stool.
PROBE for statement above
Can you tell me in your own words what this introduction is saying?
What, to you, does “fecal matter or stool” mean to you?
Results
Suggested revisions
1. Before this test was described, had you ever heard of a home stool test?
Yes
No
Not sure/do not know
PROBE for 1 [Note: ONLY ask people the question below who respond with “Not sure/do not
know”]
Can you tell me in your own words what that question is asking?
Tell me why you chose “Not sure/do not know”?
Results
Suggested revisions
1a. If “yes” to “ever heard”:
Have you ever had a stool test using a “home” test?
Yes
No
Not sure/do not know
Go to question 1a.
Go to question 1b.
Go to question 4
Go to question 4
260
1b. If “yes” to “ever had”:
How many home stool tests have you done in the last 5 years?
___________ (number 1 to 5)
Not sure/do not know
Notes for 1a. or 1b. [If the person has any problems with the question or responses]
2. When did you do your most recent home stool test?
A year ago or less
More than 1 but not more than 2 years ago
More than 2 but not more than 5 years ago
More than 5 years ago
Not sure/ do not know
Probe for 2.
Can you tell me in your own words what the question is asking?
How sure of you of your answer?
How hard was this to answer?
Results
Suggested revisions
3. Why did you do your most recent home stool test?
Part of a routine examination or check up
Because of a symptom or health problem
Follow-up of an earlier abnormal test
Not sure/do not know
Notes for 3.
4. Have you thought about doing a home stool test in the future?
Yes
No
Not sure/do not know
Notes for 4.
5. Do you plan to have a home stool test in the future?
Yes
No
Not sure/do not know
Notes for 5.
6. Do you plan to go for any other type of colon cancer screening test in the future?
Yes
No
Not sure/do not know
Notes for 6.
261
SECTION TWO
This next group of questions will also ask about screening for colon cancer. Screening for colon
Cancer means having a test to check for cancer even if you do not have symptoms or problems with
you bowels.
The following questions are about colonoscopy, another test to check for colon cancer. The test is
done in a clinic setting to examine the entire colon using a narrow tube with a light that is inserted
into the rectum (your bottom). The day before the test, special instructions on how to flush out the
colon are given to you, such as using a laxative to make sure the colon is empty. The preparation
makes a person go to the bathroom often. During the test, you may be given medicine through a
needle in your arm to make you sleepy. You will need someone to drive you home. You may need to
take the rest of the day off from your usual activities.
7. Before these tests were described, had you ever heard of colonoscopy?
Yes
No
Not sure/do not know
7a. If “yes” to “ever heard”:
Have you ever had a colonoscopy?
Yes
No
Not sure/do not know
7b. If “yes” to “ever had”:
How many colonoscopy examinations have you had in the last 10 years?
1
2
>2
Not sure/do not know
Notes for 7a. and 7b.
8. Was your most recent colonoscopy:
A year ago or less
More than 1 but not more than 2 years ago
More than 2 but not more than 5 years ago
More than 5 years ago
Not sure/ do not know
PROBES for 8.
How sure of you of your answer?
How hard was this to answer?
Results
Suggested revisions
Go to question 7a.
Go to question 7b.
Go to Section 3, question 10
Go to Section 3, question 10
262
9. Why did you have your most recent colonoscopy?
Part of a routine examination or check up
Because of a symptom or health problem
Follow-up of an earlier abnormal test
Not sure/ do not know
Notes for 9.
SECTION THREE
The following group of questions will ask you about your feelings and beliefs about colon cancer.
Please tell me whether you agree or disagree with the following statements about colon cancer in
general.
Item Responses
10. It is extremely likely I
will get colon cancer in the
future.
Strongly
Disagree (1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes 10.
11. I feel I will get colon
cancer in the future. Strongly
Disagree (1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
PROBES for 11.
Can you repeat the question in your own words?
What, to you, does “feel” mean? Alternate question: What did you understand by the word “feel”?
Results
Suggested revisions
12. There is a good
possibility I will get colon
cancer in the next 10 years.
Strongly
Disagree (1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 12.
13. My chances of getting
colon cancer are great.
Strongly
Disagree (1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 13.
14. I am more likely than
the average person to get
colon cancer.
Strongly
Disagree (1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
PROBES for 14.
Can you repeat the question in your own words?
What, to you, does “average person” mean?
Results
Suggested revisions
15. I am less likely than
other people my age to get
colon cancer.
Strongly
Disagree (1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 15.
16. The thought of colon
cancer scares me. Strongly
Disagree (1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 16.
263
Item Responses
17. When I think about
colon cancer, my heart
beats faster.
Strongly
Disagree (1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
PROBES for 17.
Can you repeat the question in your own words?
What, to you, does “heart beats faster” mean?
Results
Suggested revisions
18. I am afraid to think
about colon cancer. Strongly
Disagree (1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 18.
19. Problems I would
experience with colon
cancer would last a long
time.
Strongly
Disagree (1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 19.
20. Colon cancer would
threaten a relationship with
my partner.
Strongly
Disagree (1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
PROBES for 20.
Can you repeat the question in your own words?
What, to you, does “threatens” mean?
Results
Suggested revisions
21. If I had colon cancer,
my whole life would
change.
Strongly
Disagree (1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
PROBES for 21
In your own words, what do you think this question is trying to ask?
What, to you, does “whole life would change” mean?
Results
Suggested revisions
22. If I developed colon
cancer, I would not live
longer than 5 years.
Strongly
Disagree (1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 22.
23. If I am fated to get
colon cancer, I will get
colon cancer; there is
nothing I can do to change
fate.
Strongly
Disagree (1)
Disagree (2) I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 23.
24. Colon cancer is like a
death sentence; if I get it, I
will surely die from it.
Strongly
Disagree (1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 24.
264
The following group of questions will ask you about your reasons for having colon cancer screening
using a home stool test. Please tell me whether you agree or disagree with the following statements.
Item Responses
25. Finding colon cancer
early will save your life. Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 25.
26. The treatment for colon
cancer may not be as bad if
the cancer is found early.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
PROBES for 26
Can you repeat the question in your own words?
What, to you, does “not as bad” mean?
Results
Suggested revisions
27. A home stool test will
help find colon cancer
early.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 27.
28. A home stool test will
decrease your chances of
dying from colon cancer.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 28.
29. A home stool test will
help you not worry as much
about colon cancer.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 29.
30. A home stool test will
give you peace of mind. Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 30.
The following group of questions will ask you about your reasons for having colon cancer screening
using colonoscopy. Please tell me whether you agree or disagree with the following statements.
Item Responses
31. Finding colon cancer
early will save your life. Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 31.
32. The treatment for colon
cancer may not be as bad if
the cancer is found early.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 32.
33. A colonoscopy will help
find colon cancer early. Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 33.
265
Item Responses
34. A colonoscopy will
decrease your chances of
dying from colon cancer.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 34.
35. A colonoscopy will help
you not worry as much
about colon cancer.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 35.
36. A colonoscopy will
give you peace of mind. Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 36.
The following group of questions will ask you about why you would NOT having colon cancer
screening using a home stool test. Please tell me whether you agree or disagree with the following
statements.
Item Responses
37. You are afraid to have a
home stool test because you
might find out something is
wrong.
Strongly
Disagree
(1)
Disagree
(2)
I neither agree
or disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 37.
38. A home stool test is
embarrassing. Strongly
Disagree
(1)
Disagree
(2)
I neither agree
or disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 38.
39. You do not have time to
do a home stool test. Strongly
Disagree
(1)
Disagree
(2)
I neither agree
or disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 39.
40. The cost would keep
you from having a home
stool test.
Strongly
Disagree
(1)
Disagree
(2)
I neither agree
or disagree (3)
Agree
(4)
Strongly
Agree (5)
PROBES for 40.
Can you repeat the question in your own words?
What, to you, does “cost” mean?
Results
Suggested revisions
41. You do not need to do a
home stool test because you
have no problems.
Strongly
Disagree
(1)
Disagree
(2)
I neither agree
or disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 41.
42. You do not know how to
do a home stool test. Strongly
Disagree
(1)
Disagree
(2)
I neither agree
or disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 42.
266
Item Responses
43. You do not have privacy
to do a home stool test. Strongly
Disagree
(1)
Disagree
(2)
I neither agree
or disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 43.
Item Responses
44. Collecting a stool
sample to do a home stool
test is unpleasant to you.
Strongly
Disagree
(1)
Disagree
(2)
I neither agree
or disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 44
45. You don‟t know where
to go to get a home stool
test.
Strongly
Disagree
(1)
Disagree
(2)
I neither agree
or disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 45.
46. There is no one who
speaks your language at the
doctor‟s office.
Strongly
Disagree
(1)
Disagree
(2)
I neither agree
or disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 46.
47. The doctor never told
you to have a home stool
test.
Strongly
Disagree
(1)
Disagree
(2)
I neither agree
or disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 47.
The following group of questions will ask you about why you would NOT having colon cancer
screening using a colonoscopy. Please tell me whether you agree or disagree with the following
statements.
Item Responses
48. You are afraid to have a
colonoscopy because you
might find out something is
wrong.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 48.
49. A colonoscopy is
embarrassing. Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 49.
50. You do not have time to
do a colonoscopy. Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 50.
51. The cost would keep
you from having a
colonoscopy.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 51.
52. You do not need to do a
colonoscopy because you
have no problems.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 52.
267
Item Responses
53. You feel anxious about
having a colonoscopy
because you don‟t really
understand what will be
done.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 53.
54. Having a colonoscopy is
painful. Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 54.
55. Having to follow a
special diet and taking a
laxative would keep you
from having a colonoscopy.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 55.
56. You are afraid to have
colonoscopy because of the
possibility there may be
bleeding or tearing of the
colon.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 56.
57. Transportation problems
would keep you from
having a colonoscopy.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 57.
The following group of questions will ask you about you confidence in completing the home stool
test. Please tell me whether you agree or disagree with the following statements.
Item Responses
58. I am confident that
using the home stool test
screening kit would be
easy.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 58.
59. I am confident that
testing three separate bowel
movements would not be
inconvenient.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
PROBES for 59.
Can you repeat the question in your own words?
What, to you, does “inconvenient” mean?
Results
Suggested revisions
60. I am confident that I
will not find using the home
stool test embarrassing.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 60.
268
Item Responses
61. I am confident that I
would not find the home
stool test distasteful.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 61.
62. I am confident that I
would find time in the day
to complete the home stool
test.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 62.
63. I am confident that I
could do the home stool test
correctly.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 63.
64. I am confident that I
could do the home stool test
on a regular basis.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 64.
The following group of questions will ask you about the people in your life who would help you to
have colon cancer screening. Please tell me whether you agree or disagree with the following
statements.
Item Responses
65. I want to do what
members of my immediate
family think I should do
about colon cancer
screening.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 65.
66. Members of my
immediate family think I
should have colon cancer
screening.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 66.
67. My doctor or health
professional thinks I should
have colon cancer
screening.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 67.
68. I want to do what my
doctor or health
professional thinks I should
do about colon cancer
screening.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 68.
69. I want to do what my
extended family and friends
think I should do about
colon cancer screening.
Strongly
Disagree
(1)
Disagree
(2)
I neither
agree or
disagree (3)
Agree
(4)
Strongly
Agree (5)
Notes for 69.
269
SECTION FOUR
I would now like to ask you questions about your background. Your responses will be kept
completely confidential.
70. What is your age in years (or date of birth)? _______________________
71. What is your gender?
Male
Female
72. What is your country of birth?
India
Pakistan
Bangladesh
Other country________________
73. How many years have you lived in Canada? ____________________________________
74. Which of the following categories best describes your ethnic background?
Please select all that apply:
Bangladeshi
Pakistani
Sikh
Sri Lankin
Tamil
Bengali
Hindu
Punjabi
Nepali
Gujarati
Other , please tell me_____________________
75. What is your current marital status?
Married
Living as married
Divorce
Separated
Widowed
Never married
Have a partner but do not live with them
76. In your household, tell us the individuals who make up your family: Mark all that apply.
Live alone
Live with my partner/spouse
Live with my parents
Live with my friends
Live with my in-laws
Live with other members of my family (not listed above)
270
77. What is the highest level of education you have completed?
Less than high school
Completed high school
Completed some college/university
Completed trade, certificate, or diploma
University certificate/diploma
University degree (Bachelor‟s)
Post graduate degree
78. What is your employment status?
Employed outside the home full-time (over 30 hours per week)
Employed outside the home part-time (up to 30 hours per week)
Looking after a home/family
Unemployed
Not working but seeking work
I am retired
On disability or government program
Other, please specify __________________
79. What is your household (combined family members incomes) yearly income before taxes?
<19,999
20,000-29,999
30,000-39,999
40,000-49,999
50,000-59,999
60,000-79,999
80,000- 99,999
More than 100,000
Don‟t know or prefer not to answer
80. Do you have a family doctor that you can see regularly?
Yes
No
Other, please specify
81. Is your family doctor:
Male
Female
82. Is your family doctor from a similar culture as yourself?
Yes
No
83. If you are female and have a male physician, would you prefer a female health care provider, such
as a female doctor or female nurse practitioner for health exams?
Male
Female
Do not care
271
84. If you are female, what OTHER cancer screening tests have you had in the past?
Breast cancer: Mammography
Cervical cancer: Pap test
Do you have any comments or questions for me?
_____________________________________________________________________________
_____________________________________________________________________________
_____________________________________________________________________________
_____________________________________________________________________________
You have come to the end of the questions.
Thank you for completing the survey!
272
Chapter Six
Summary of the Exploratory Sequential Mixed Method Study
This thesis used a rigorous exploratory sequential mixed method approach that
incorporated the most appropriate reseach methods to explore factors that influence colorectal
cancer screening among South Asian immigrants in Canada. The final chapter of this thesis
provides a summary and discussion of the findings. The scoping study findings enhanced
understanding of socio-cultural context, beliefs, limited knowledge, barriers, and gender
differences in screening uptake, as well as identified important gaps in the literature and
subsequently served to inform the focus group study. Findings from the focus group study
provided insights on socio-cultural beliefs, knowledge and awareness, social support and
access in relation to colorectal cancer screening in the Canadian conext. Collectively, the
findings from the scoping and focus group studies were complementary because they
enhanced understanding of factors that influence the uptake of colorectal cancer screening in
South Asian immigrants. Most importantly, these findings advance the field through the
development of a survey as part of this research to assess colorectal cancer screening in this
population. This survey may be adapted for other similar western contexts across Canada and
internationally.
This chapter is organized into seven sections. The first section provides a summary of
findings for each study and contributions that informed the next phase. The second section
discusses the integration of findings to better understand colorectal cancer screening in the
broader context of the current body of knowledge. Discussion in this section includes
contributions of findings to inform on locally relevant strategies to promote screening access,
and a discussion of health behavioural concepts in survey development. The main
conclusions drawn from the exploratory sequential mixed method study and contributions to
practice and research are highlighted as well as dissemination of study findings in the third
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and fourth section of this chapter. The fifth section outlines the strengths and limitations of
the exploratory seqeuntial mixed method study. Implications for pracice, policy and research
is discussed in the sixth section, and lastly, future research directions are presented.
6.1 Summary of Main Findings
The exploratory sequential mixed method study involved three separate phases; a
scoping study, a focus group study, and a survey development study (Figure 1). In the
following, a summary of key findings from each is presented.
Figure 1. Exploratory Sequential Mixed Methods Study: Each study‟s contribution in achieving
overall goals of the thesis
6.1.1 Phase one, scoping study
The scoping study explored cancer screening among South Asian (SA) immigrants
residing in the United Kingdom (UK), United States of America (USA), and Canada
(Crawford, Ahmad, Beaton, & Bierman, 2015a; Chapter 2 of this thesis). This study
identified relevant literature on beliefs, attitudes, barriers, and cancer screening uptake
that contribute to understanding socio-cultural context of cancer screening (i.e. breast,
cervical and colorectal cancer) among SA immigrants.
A total of 70 quantitative and qualitative studies and reports were included in the
review; most were descriptive and/or exploratory with two thirds using cross sectional
designs, and one third using qualitative designs. Two thirds of all studies and reports focused
on female cancer screening (i.e. breast and cervix) including predominantly SA immigrant
women in their samples. Overall, 21% of studies reported on CRC screening (Crawford et al.,
Phase Two
Focus Group Study
Findings
Phase One
Scoping Study
Findings
Phase Three
Survey Development Study
Findings
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2015a). Narrative and thematic analysis uncovered important and recurrent themes. First,
beliefs and attitudes emphasized the socio-cultural context and beliefs surrounding the
importance of family, and holistic views of health. Reasons for not screening included
fatalistic views, low self-perceived risk of cancer, and emotional responses (i.e. fear or peace
of mind) associated with cancer and screening. Second, a general lack of knowledge was
prevalent among SA populations regarding cancer, risk factors, screening modalities (i.e.
mammography, Pap, fecal occult blood test, colonoscopy) and screening programs in the
settlement country (Crawford et al., 2015a). Third, unique barriers to access of information
and cancer screening were identified. Individual barriers included language, low literacy, loss
of social support, time and cost associated with screening, and transportation. Structural
barriers within the health care system included SA immigrants‟ preferences for a physician of
the same culture or gender, accessibility to health education programs and screening
programs, lack of physician recommendation, and no health insurance (Crawford et al.,
2015a). The last theme centered on gender differences in screening uptake and emphasized
lower rates among SA women compared to SA men. Factors that influenced uptake of cancer
screening among SA populations included length of time in the settlement country,
acculturation level, a usual source of health care, and income and education level (Crawford
et al., 2015a).
In summary, the scoping study provided valuable insights of the socio-cultural context
of cancer screening among SA immigrants, and the factors that influence uptake. These
findings can inform strategies that may reduce barriers, and prove useful in promoting access
to cancer screening in key SA communities in western countries. The scoping study
literature, however, was limited in that there was an identified gap in understanding beliefs,
barriers or gender-related factors that influence colorectal (CRC) screening. Screening for
CRC can be achieved with the fecal occult blood test (FOBT), flexible sigmoidoscopy and
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colonoscopy, which requires understanding for individuals to complete or prepare for these
tests. As well, there may be differences in CRC screening test preferences across genders
(Crawford et al., 2015a). The diversity of SA populations settling in the UK and the USA,
and different socio-cultural contexts necessitated further study to inform on CRC screening in
the Canadian context. To address this gap, qualitative inquiry was instrumental to further
understand beliefs, barriers, and gender-related factors that influence CRC screening prior to
developing a survey.
6.1.2 Phase two, focus group study
The focus group study explored SA immigrants‟ beliefs, attitudes and reasons for
decision-making in relation to CRC screening in Hamilton, Ontario (Crawford, Ahmad,
Beaton, Bierman, 2015b; Chapter 3 of this thesis). A total of six focus groups were held with
42 SA immigrants. Among participants, the average number of years in Canada was 24 with
38% in Canada for 10 years or less. Less than half (48%) reported English language
proficiency. Self-reported CRC screening was similar across genders: screened 42% in
females, 44% males; and, unscreened, 56% in males, and 58% in females. Guided by Critical
Social Theory and the Behavioral Reasoning Theory (Westaby, 2005), qualitative inquiry
elicited meaningful and rich data, and through thematic analysis three main themes emerged.
The first theme was beliefs and attitudes toward cancer and screening, such as the
perceived benefits of screening including early detection that would lead to early treatment
and possible cure, and peace of mind and relief when test results were negative. The reasons
for not screening centered on beliefs that it was not necessary if one had no symptoms or was
healthy. As well, unscreened SA immigrants perceived a diagnosis of cancer to be scary,
while screened participants expressed fear with having an invasive test or awaiting a test
result (Crawford et al., 2015b). Aversion to the stool test and perceived increased CRC risk
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because of loss of bowel practices on immigration were novel findings emerging from focus
group data.
The second theme was knowledge and awareness and focused on sources of
information where SA immigrants learned about cancer and screening, for example, through
family, friends, community members, and the family physician (Crawford et al., 2015b).
Different levels of knowledge of cancer and screening among participants expanded further
that those who had screening were more aware of CRC, risks and the purpose of screening. A
lack of knowledge was more prevalent among those who had not heard or had CRC screening
(Crawford et al., 2015b). These participants also were eager to know more and this was
reflected by their asking questions during focus groups. Another finding was the experiential
learning about CRC and screening from peers during focus groups. Lastly, recommendations
to raise SA community awareness of CRC and screening uncovered important culturally
appropriate strategies relevant to the Canadian context such as: community education, ethnic
media dissemination (i.e. TV, newspapers), word of mouth through family, friends and
community, and invitation letters sent by an organized screening program (Crawford et al.,
2015b). Both the experiential peer learning and recommendations of strategies to promote
community awareness were unanticipated findings.
The final theme was support and accessibility to information and screening that
centered on family physician recommendation (Crawford et al., 2015b). Those who were
screened had a physician recommendation, while those who had not been screened revealed
that the physician had not discussed it with them. A doctor of the same gender and language
facilitated cultural understanding and communication in one‟s native language, which was
particularly important to SA immigrant women. Physician time constraints and being rushed
during a health care encounter were concerns expressed by some participants. Lastly, the role
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of family and friends were important social supports that enabled access to health care
appointments and screening (Crawford et al., 2015b).
In summary, the findings from the focus group study contributed to understanding
socio-cultural beliefs, facilitators, knowledge levels, supports to access, and strategies to
promote CRC screening among SA immigrant communities in the Canadian context
(Crawford et al., 2015b). These findings were complementary with scoping study findings
because themes in focus groups reflected factors that facilitated or may impede access to
screening. Collectively, both studies contributed to the final phase, the survey development
study; to develop a culturally adapted survey for SA immigrants in Canada.
6.1.3 Phase three, survey development study
The scoping study and focus group study findings were fundamental to inform the
development of an empirically-based survey to examine factors that influence CRC screening
among SA immigrants (Chapter 4 and 5 of this thesis). The goal of the survey development
study was to include measures whose content and wording is verified for relevance to SA
populations. The purpose of the survey is to describe or predict factors that influence CRC
screening uptake among SA immigrants. Scoping study and focus group study findings were
used in the development process beginning with the identification of key concepts.
Behavioural concepts from the Health Belief Model (Rosenstock, Stretcher, & Becker, 1988)
and the Theory of Planned Behavior (Ajzen, 1991) that matched key concepts were selected
to operationalize definitions. A conceptual model was created and included key defined
concepts, modifying factors, and behavioural outcomes to be measured.
A literature search was undertaken to identify pre-existing candidate measures; this
resulted in 426 citations retrieved with 142 citations remaining after inclusion and exclusion
criteria were applied. Further exclusion of application articles resulted in 64 articles
remaining. Of the 64, 24 articles reporting on measures and psychometric properties
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specifically related to CRC screening were retained because they would be most pertinent to
the measurement needs. Five articles reporting on survey questionnaires met inclusion criteria
and were selected as they contained candidate measures to cover 80% of key concepts
required to examine factors that influence CRC screening (Flight, Wilson, McGillivray, &
Myers, 2010; Leung, Wong, & Chan, 2014; Ozsoy, Ardahan, Ozmen, 2007; Rawl et al., 2001;
Vernon et al., 2004). The next step was to review measures for their concept and fit with the
intended use in the SA immigrant population using an established critical appraisal tool, the
Evaluating the Measurement of Patient-Reported Outcomes EMPRO (Valderas et al., 2008).
The appraisal revealed that measures in selected articles were generally a good match;
however, seven measures needed specific content added to fully capture the findings from
prior studies (Crawford et al., 2015a, b). Consultation for decision-making on candidate
measures to be included in the survey was accomplished with an expert advisory group
meeting. Subsequent consultation with experts in measurement resulted in additional items
added to key measures to fill missing content, as well as modifications to items for
simplification or consistent wording.
The Colon Cancer Screening Survey was cross culturally translated and adapted into
the Urdu language using two independent translations, consensus of two forward translations
and expert committee review (Beaton, Bombardier, Guillemin, & Ferraz, 2000; Epstein,
Osborne, Elsworth, Beaton, & Guillemin, 2015). Importantly, back translation was not
carried out, an omission felt by Epstein et al. (2015) to be a step that could lead to over
confidence in the translation. Having the final Urdu and English language versions prepared,
it was important to verify that SA immigrants would understand the items and responses in
the same way that was intended. Pre-testing the surveys was achieved by conducting 30
cognitive interviews. The participants in each language group were similar in age, gender,
and years of residence in Canada. Findings revealed that cognitive interviewing using verbal
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probes were feasible to test the new Colon Cancer Screening Survey among a sample of SA
immigrants. The three rounds of testing (practice round, round one and round two) resulted in
issues related to general design, culture, gender, and translation. All revisions were
determined based on joint collaborative analysis with cognitive interviewers and the lead
researcher. Revisions were made after round one, and no issues arose in round two of testing.
Minor revisions were made for design issues such as the provision of further
interviewer instructions, moving an item about other screening tests later when participants
had learned more to be able to respond, and the addition of a response category related to
living with children in the household. One item was modified to be more culturally sensitive;
the item was revised to intone a potential diagnosis of cancer rather than assuming a
diagnosis. A gender-related issue that only included female participant views for preference
of the family physician was modified to be inclusive of males. Participants provided
additional spontaneous think-aloud comments frequently related to their family physician,
providing some knowledge about perceptions of the family doctor in terms of CRC screening.
In summary, pre-testing using scripted and emergent verbal probes was effective for
use among a SA immigrant sample, and revisions to address general design, culture and
gender issues improved the survey. The sample was small but sufficient to meet objectives of
pre-testing the survey. This study resulted in a final product, the Colon Cancer Screening
Survey (English and Urdu languages) that includes important concepts relevant to the SA
immigrant population, which has been cognitively tested and is now ready for pilot and
psychometric testing that will be undertaken in post-doctoral work.
6.2 Discussion of Findings
The findings from the exploratory sequential mixed method study contribute to the
body of knowledge of CRC screening among SA immigrants. This research enhanced
understanding of the socio-cultural context of factors that influence CRC screening among
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SA immigrants, and strategies that might be used to reduce inequities and improve uptake.
Additionally, a survey was developed based on findings from the scoping and focus group
studies specifically for SA immigrants in Canada, which once tested will be useful to other
researchers. The following paragraphs discuss the integration of findings from this study that
have contributed to better understanding CRC screening among SA immigrants in Ontario.
6.2.1 Low screening among SA immigrants
Based on findings from the scoping study, CRC screening was lower among SA
populations residing in the UK and USA when compared to non-Asian born populations with
more disparities experienced by SA immigrant women (Crawford et al., 20015a). There was a
lack of available data on specific rates of CRC screening among SA immigrants in Canada, as
most data systems aggregate population sub-groups under broader categories (Krzyzanowska
et al., 2009). One study used area-level data and reported lower rates of CRC screening in
specific census tract communities; whereby, approximately 40% had self-identified as
belonging to the SA descent (Lofters, Gozdyra, & Lobb, 2013). Yet, these findings have
limitations because data sources used for screening rates were aggregated with all population
groups, less recent census data was used, and CRC screening procedures may have also
included tests ordered for diagnostic evaluation. Another study evaluated outcomes from the
organized screening program in Ontario, Canada, and found that greater health inequities
existed in CRC screening uptake among recent immigrants who had lower rates of FOBT
uptake compared to long term residents (Honein-AbouHaidar et al., 2013). While these
findings provide indirect evidence of low CRC screening among immigrants in Canada, the
lack of available data sources that provide CRC screening uptake stratified by ethno-cultural
groups is a particular challenge in understanding the extent of disparities among SA
immigrants.
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To address health inequities, several organizations have recommended improvements
to provincial data collection systems to better document health status and health behaviours
including socio-economic status, ethno-cultural groups, and geographical boundaries (Cancer
Care Ontario and the Ontario Agency for Health Protection and Promotion, 2012; Council of
Agencies Servicing South Asians [CASSA], 2010). These improvements would provide a
more informed understanding of potential health inequities related to CRC screening among
SA immigrant groups. The Colon Cancer Screening Survey will be used in future research to
assess screening uptake, beliefs and attitudes, and socio-contextual factors that influence
screening among a larger sample of SA immigrants; thereby contributing some data to inform
on the prevalence of screening uptake in these communities.
Length of residency, a proxy measure for acculturation in the new settlement country
is of particular interest as it has also been associated with CRC screening uptake (Honein-
AbouHaidar et al., 2013).
Acculturation and screening. Based on scoping study findings, SA immigrants with
longer residence had higher rates of cancer screening (Crawford et al., 2015a). An
assumption is that long term immigrants are more acculturated and take up similar behaviours
of the settlement country; yet, this may not always be the case, particularly for CRC
screening. In the focus group study, some participants who had been in Canada for many
years did not know about CRC and screening (Crawford et al., 2015b). For some, they were
motivated to consider screening after hearing about it for the first time at the focus group.
The lack of access to information about CRC screening from the family physician may have
been a reason why participants did not hear about or obtain screening. Therefore, screening
promotion may be necessary across the spectrum of migrants from more recent and long term
immigrants because we cannot assume that length of residence is always associated with
greater knowledge, awareness and uptake of screening among some SA populations.
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While greater acculturation has been associated with screening uptake, structural
barriers to access may have more influence on screening behaviours. Because acculturation is
a distal factor to health care use, it differs from proximal factors such as health services
access and skills of navigation (Kagawa-Singer, 2012). In one study examining female cancer
screening with diverse Asian groups, acculturation measures (i.e. nativity, length of
residence, and language use at home) were compared to health services access ( i.e. usual
source of care, and insurance) (Pourat, Kagawa-Singer, Breen, Sripipatana, 2010). Findings
from this study reported that access barriers were more powerful to predict health services
use than acculturation measures alone for Asian American women. Examples of structural
barriers in the scoping study included a lack of physician recommendation, preference for a
female health care provider by SA women, and lack of local access to screening (Crawford et
al., 2015a). This is of significance because primary care and cancer care organizations can
make changes to reduce structural barriers. Tailored strategies that focus on reducing
structural barriers to access at a local level for the SA community of interest will likely prove
more beneficial to increase CRC screening rates. Primary care and public health nurses are
ideally suited to promote health, provide culturally appropriate information and facilitate
access to screening. One example is the nurse-led mobile “Screen for Life” coach that
provides screening in the community at different sites, specifically targeted at under-screened
or never-screened communities to promote breast, cervical, and CRC screening in Hamilton,
Ontario (Hamilton, Niagara, Haldimand & Brant (HNHB) Regional Cancer Program, 2015).
The exploratory sequential mixed method study uncovered key barriers and
facilitators to access of cancer and CRC screening, and strategies that may be used among SA
immigrants in Ontario, Canada or other similar settings. The survey developed also creates an
opportunity to examine factors that influence screening in a larger SA population, as well as
further testing to identify priorities for intervention.
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6.2.2 Access in the context of CRC screening
This discussion is situated within a health equity and social justice lens because it
aligns with my overarching worldview of Critical Social Theory, and initial assumptions and
reasons for undertaking this research. In Ontario, Canada, a key priority is to increase CRC
screening rates among the eligible average risk population with some initiatives aimed at
reaching under-screened and never-screened groups (Cancer Quality Council of Ontario,
2015; Spayne, Rabeneck, & Guerriero, 2015). This study, therefore, highlights the need for
targeted and tailored, culturally appropriate outreach strategies to increase screening among
SA immigrants, an under-screened group.
Each phase of this research uncovered important factors that influence CRC screening
and health disparities among SA immigrants. Health disparities are differences that
disadvantage some populations because of social, economic, or environmental obstacles to
health or health services access based on gender, age, ethnicity, religion, socio-economic
status, geography, and other diverse historically influenced characteristics (U.S. Department
of Health and Human Services, 2012). Health inequities are “systematic differences in health
status between socio-economic groups” (Whitehead & Dahlgren, 2006, p. 2). While
systematic differences relate to biology, social processes reflect differences between groups
that are created in society. Inequities are socially produced and amenable to change, and
health equity is the lens by which to advocate for a reduction in health disparities that exist in
accessing health care services (Braveman, 2014).
Access is not merely the act of health service provision in terms of obtaining CRC
screening, rather it includes a number of factors: (a) equal access to appropriate information;
(b) relevant and sensitive services that meet unique individual needs; (c) the ease by which
individuals are able to use health services; and, (d) the assurance that individuals will receive
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respectful treatment (Atkinson et al., 2001). To facilitate access, it is important to match the
services to the needs of the population (Whitehead & Dhalgren, 2006).
This study contributes knowledge of socio-cultural beliefs and attitudes, and supports
that enable access as well as community-based strategies that meet the needs of SA
populations in Ontario, Canada. To improve access to CRC information and screening
services, Atkinson et al.‟s (2001) equity framework was used to integrate and guide the
discussion of findings from the scoping and focus group studies in the following paragraphs.
The potential use of the Colon Cancer Screening Survey in assessing factors that influence
screening behaviours among SA immigrants in Canada is also considered.
Equal access to appropriate information. All eligible average risk populations
should have equal access to appropriate information about CRC and screening services.
Based on the scoping and focus group studies, there were knowledge gaps related to
understanding of cancer and screening (Crawford et al., 2015a, b). The prevalence of
knowledge gaps may reflect dissemination methods to promote CRC screening, which may
not be sufficient for SA populations to understand and make a decision. Language was a
common barrier to access of information on cancer or screening. Health communication
campaigns deliver messages that are accessible to the general population; however, targeted
messages in different languages to reach diverse populations may not be available.
The Ministry of Health and Long Term Care [MOHLTC] (2015) provides information
about CRC and screening on their website, along with other partner agencies, such as Cancer
Care Ontario and the Public Health Agency of Canada; however, for those who have a
language barrier, this information is not necessarily accessible. To address language barriers,
FOBT instruction sheets are provided in key SA languages, such as Urdu, Hindi, Gujarati,
and Punjabi (MOHLTC, 2015). The scoping and focus groups studies contributed to
understanding of culturally appropriate outreach. Strategies that address language barriers
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included: community education delivered in SA community settings such as temples or
community activities, dissemination of CRC screening information through ethnic media (i.e.
TV), the use of social networks to learn about CRC and screening, and peer health advisors
from the same culture (Crawford et al., 2015a, b). The Colon Cancer Screening Survey was
cross culturally translated and adapted into the Urdu language to make it accessible to those
with limited English language proficiency. The needs of those with low literacy levels may
very well differ from those with good English language proficiency. Therefore, the survey
will be able to assess beliefs, attitudes, facilitators, and barriers to inform tailored
interventions for specific populations, including those with language barriers.
Another finding from scoping and focus group studies was low self-perceived risk of
cancer including CRC (Crawford et al., 2015a, b). This may be related to lack of knowledge
of cancer and risk factors. In order to target messages that provide culturally appropriate
information related to risks of CRC, it may be important to explain the convergence of risks
with time settled in Canada. This will enhance understanding of the rationale for screening
and the necessity to have it even with no symptoms or if one is in good health.
The scoping and focus group studies identified the family physician as a support to
access information and CRC screening (Crawford et al., 2015 a, b). However, some SA
immigrants in the focus groups revealed that their physician had not told them about CRC, or
screening. Typically, the family physician plays an integral role in providing access to
information on CRC, risks, and screening guidelines during the routine health exam.
However, inequities may exist due to: barriers associated with perceived lack of evidence on
efficacy of the FOBT (McGregor, Hilsden, & Yang, 2010); lack of trained healthcare
providers to perform screening or follow-up on FOBT results in general practice (Damery,
Clifford, & Wilson, 2010); and, a lower priority placed on preventive care and CRC
screening (O‟Malley, Beaton, Yabroff, Abramson, & Mandelblatt, 2004). Based on the focus
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group study, participants felt that the physician and their health care team were responsible
for providing CRC information and screening. Therefore, strategies for SA immigrant
populations will need to involve the physician, primary care nurses, and nurse practitioners
that collectively may use a team-based approach to improve access to CRC screening.
Relevant and sensitive health services. Access to screening services should be
relevant and sensitive to meet the individual needs of SA immigrants. The values of family
resonated with the collectivist nature of SA populations (Crawford et al., 2015a). As well,
family, friends, and community were identified as important sources of information to learn
about cancer, CRC, and screening (Crawford et al., 2015b). The beliefs related to holistic
views of health care reported among SA immigrants reflect traditional views of health
maintenance, such as diet, physical activity, and rest (Crawford et al., 2015a). In efforts to
promote CRC screening among SA immigrants, program planners should involve family and
friends, as well as valuing of alternative health practices to ensure that strategies are relevant
and culturally sensitive. This aligns with recommendations proposed by CASSA (2010) for
the inclusion of family in the development of tailored approaches that aim to reduce health
inequities in Ontario, Canada.
Beliefs that cancer was fatalistic or scary also emerged from scoping study and focus
group study findings (Crawford et al., 2015a, b). This may represent the general lack of
knowledge of cancer or CRC. Therefore, strategies to enhance knowledge require culturally
sensitive efforts that should involve consideration of these beliefs. Peer-to-peer interactions
during focus groups fostered sharing of screening experiences and learning, including
sensitive information about colonoscopy (Crawford et al., 2015b). Peer-based approaches,
therefore, may be ideal in promoting screening to those who hold beliefs of fear or fatalism.
In one systematic review, peer health educators who were matched by race and ethnicity to
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the target population had statistically better uptake of mammography screening compared to
routine care (Wells et al., 2011).
The attitudes toward the FOBT test itself also require sensitivity to meet needs of SA
immigrants. In the scoping and focus group studies, barriers to FOBT included
unpleasantness, unhygienic nature of the test, and aversion to handling stool (Crawford et al.,
2015a, b). In moving forward, the fecal immunochemical test (FIT) may replace FOBT in the
Ontario CRC screening program (Rabeneck et al., 2012). This may prove more acceptable to
SA populations because it will likely require only one sample. In one intervention study, two
arms consisted of a FIT and a colonoscopy intervention that included a letter, reminder call,
and telephone assistance were compared with usual care, and FIT uptake was three times
higher than the colonoscopy intervention or usual care in a diverse population (i.e. Black,
Hispanic) in the USA (Gupta et al., 2013). While the study consisted of a diverse underserved
population of English language speaking participants, it demonstrated that among those who
encountered access barriers, FIT was acceptable.
Ease of Access. South Asian populations should be able to access CRC screening
without difficulties. Findings from the scoping and focus group studies highlighted that SA
immigrants encountered structural barriers to access of primary health care or CRC screening
services (Crawford et al., 2015a, b). Other structural barriers included: education programs
that promoted screening but did not address literacy, or limited dissemination of information
in familiar cultural settings; and difficulties with local access or transportation (Crawford et
al., 2015a). These findings point to the need to engage SA immigrants in the community of
interest to develop locally driven strategies. Recommendations made by CASSA (2010) to
reduce health inequities among SA communities also reinforced the need for community
engagement in local initiatives. One promising project has engaged a network of members
including SA residents, community organizations, health care institutions, and screening
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programs for the planning of a multi-level intervention targeted at SA residents in Ontario,
Canada with an aim of increasing screening uptake for breast, cervical and CRC (Lobb,
Carothers, & Lofters, 2014). Cancer Care Ontario has also supported five community-based
projects to meet the specific needs of under-screened and never-screened populations through
the development of locally tailored interventions to promote uptake of breast, cervical and
CRC screening among Aboriginal communities and other diverse peoples, such as
immigrants (Spayne et al., 2015). The findings from the scoping and focus group studies
elucidate on the socio-cultural beliefs, attitudes, lack of knowledge, and strategies to promote
uptake of CRC screening, which may be of value to others working with SA communities
and provincial cancer care organizations to contribute to the development of strategies to
promote CRC screening uptake.
The family physician was integral in supporting access to information and screening
in the focus group study; however, common reasons for not having screening were lack of
physician recommendation, and time constraints to discuss screening (Crawford et al., 2015a,
b). Recent literature has reinforced the physician role in facilitating access to health services.
The family physician was the highest influencing factor for having CRC screening in a recent
study among SA English speaking residents in the USA (Manne, Steinberg, Delnevo, Ulpe,
& Sorice, 2015). Likewise, physicians were a valuable source of information for a SA
English speaking sample in another study examining health-related behaviours (Vyas,
Chaduhary, Ramiah, & Landry, 2013). While SA populations in these USA studies represent
different socio-cultural contexts of settlement, varying language ability, and acculturation
levels, this does highlight a common influence of the family physician in promoting uptake of
CRC screening among these populations.
In Ontario, Canada, the CRC screening program facilitates linkages to family
physicians for ease of follow-up. However, some family physicians have reported challenges
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in promoting CRC screening. In one report, family physician difficulties in promoting CRC
screening included: limited understanding or training, reservations of the significance of
screening, and other system-level issues such as limited time to provide explanation of the
test or other competing administrative duties (Aubir-Auger et al., 2011). In contrast, another
study found that physicians of Asian/Asian ethnicity were more positive about promoting
CRC screening using FOBT compared to the White physician group in the UK (Damery et
al., 2010). Thus, physician attitude toward screening will influence CRC screening uptake.
An invitation letter endorsed by family physicians also aims to increase access to
screening within the CRC screening program in Ontario, Canada (Tinmouth et al., 2011).
This strategy has been used with other population-based programs in the USA, Australia and
France (Barthe et al., 2015; Cole, Young, Byrne, Guy, & Morcom, 2002; Ling et al., 2009;
Walsh, Salazar, Terdiman, Gildengorin, & Pérez-Stable, 2005; Zajac et al., 2010). However,
the literature on the effectiveness of this strategy has resulted in different results. In a more
recent cluster randomized control trial, there were no differences in uptake with the addition
of an invitation letter endorsed by the family physician when compared to the usual standard
CRC screening invitation letter (Barthe et al., 2015).
An invitation letter from the screening program was identified in the focus group
study (Crawford et al., 2015b); although, the endorsement of the letter by the family
physician was not discussed. We cannot be sure if SA immigrants who receive an invitation
letter endorsed by their family physician will be effective to increase CRC screening rates
among SA populations in Ontario, Canada. There may be some SA populations with
language barriers or low literacy levels (Crawford et al., 2015a). Perhaps, the invitation letter
will need to be made more accessible to some populations through translation of the
document into key SA languages. This was done for one study, where an invitation was sent
in English and Spanish (Gupta et al., 2013). Alternatively, further engagement of the family
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physician may be needed to reduce structural barriers. In the focus group and survey
development studies, 88% and 100% of participants reported having a primary care
physician, respectively (Crawford et al., 2015b; Chapter 5). However, it is not known if
physicians were part of a team-based comprehensive care model that includes nurses and
nurse practitioners, or if they were independent practitioners (Government of Ontario, 2015).
Engaging family physicians who serve these populations as sole practitioners may be
necessary to enable access to CRC screening. Ease of access to CRC and screening
information may also be provided through community-based strategies.
South Asian immigrants felt most comfortable receiving information about cancer and
CRC screening through community education sessions, seminars or discussion circles in
temples, recreation centers, or specific SA community programs, and peer health educators
(Crawford et al., 2015a, b). Dissemination of culturally appropriate information through
ethnic media (i.e. TV and newspapers) was also recommended to promote CRC screening to
SA populations. The effectiveness of strategies to promote uptake of CRC screening reported
in one paper indicated that group education provided encouraging evidence, especially for
special populations with barriers to access (Brouwers et al., 2011). Likewise, peer health
educators combined with other interventions (i.e. small media or invitation) significantly
increased CRC screening uptake (Brouwers et al., 2011). Public health nurses may lead
community-based strategies that promote CRC screening as this is a primary role function.
Additionally, public health nurses scope of practice enables them to conduct research to
evaluate the effectiveness of tailored community-based strategies for SA communities and
contribute to the current body of intervention research on CRC screening (Baron et al., 2008).
Respectful care. Access to CRC information and screening should entail the
provision of respectful care by family physicians and health care team members including
primary care nurses. Findings from the scoping and focus group studies identified barriers
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related to a lack of valuing or accommodating for cultural beliefs and traditions, time
constraints, and physician behaviours that were not respectful within the health care system
(Crawford et al., 2015a, b). Recognizing the unique diversity of individuals and equalizing
power within the health care encounter that incorporates respectful care may be achieved by
integrating the concept of cultural safety within practice and tailored approaches.
Cultural safety considers the context of an individual‟s life world, and how this shapes
health and illness experiences and access to care (Browne et al., 2009). Grounded within a
social justice lens, cultural safety pushes health care providers to scrutinize health care
structures, power relations, and individual assumptions that lead to institutional racism,
discrimination, or demeaning behaviours (Browne et al., 2009; Anderson et al., 2003). The
assessment and disclosure of structural, social, political and historical contexts of health care
are required to uncover health inequities (Smye & Browne, 2002). In providing culturally
safe care, health care providers must move beyond distinguishing individuals by cultural
static qualities or stereotypes; rather, they must gain an understanding and awareness of
unequal distribution of power within health care settings, to equalize power in order to
develop a respectful mutual relationship with the patient and family (Bearskin, 2011;
Richardson, Williams, Finlay, & Farrell, 2009).
The concept of cultural safety has been applied more specifically to practice nurses.
However, it is emerging as an important aspect of health care delivery among practitioners in
occupational therapy (Gerlach, 2012), and Canadian Family Medical practitioners (Baker &
Giles, 2012). There are challenges to implementing principles of cultural safety. Cultural
safety is a relatively new concept to health care providers and populations in Canada,
therefore, the meaning may be misinterpreted as cultural competence or safe clinical care
(Johnstone, & Kanitsaki, 2007). Due to the lack of clarity in defining cultural safety, health
care providers may use generalized descriptions about diverse populations that do not
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consider the heterogeneity of groups or critical reflection of their social, political, or
historical experiences (Williamson & Harrison, 2010). As well, they may revert to a
simplistic interpretation of cultural safety, and misinterpret it for patient safety related to
issues such as medication safety (Browne et al., 2009).
6.2.3 Health behavioural concepts in survey development
Health behaviour theory was re-examined (Chapter 1) for potential use in survey
development to identify behavioural concepts that fit well with key concepts. Based on the
National Cancer Institute (2005), a good fit of theory to a health care issue requires careful
deliberation to find theory that is: logical, consistent with observations seen in everyday life,
comparable to what has been utilized effectively in other programs, and reinforced by prior
research in a similar topic area. For my purposes, the behavioural concepts from the Health
Belief Model (Rosenstock et al., 1988) and the Theory of Planned Behavior (Ajzen, 1991)
were a good fit to key target concepts uncovered from the scoping and focus group studies.
Conceptual definitions were used to operationalize concepts to be measured. Combining
health behaviour theoretical concepts was important because of the multiple factors
uncovered that influenced CRC screening behaviour among SA immigrants (National Cancer
Institute, 2005; Rakowski & Breslau, 2004). Integration of theory in the survey maximized
the use of measures that were relevant to SA immigrants in explaining factors that influence
CRC screening intention and uptake.
Health Belief Model. The Health Belief Model (Rosenstock et al., 1988) was used to
develop measures to examine benefits and barriers related to CRC screening in other studies
(Green & Kelly, 2005; Manne et al., 2015; Rawl et al., 2001). In an earlier critique of the
Health Belief Model (Chapter 1), it was evident that the model was limited because context
was not considered (Champion & Skinner, 2008). For the survey development study, the
behavioural concepts from the Health Belief Model were a good fit to identified key
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concepts; therefore, it was essential to integrate socio-contextual factors within the
conceptual model to guide survey development.
Context. The unique differences of SA immigrant populations (compared to western
populations) in relation to CRC risk factors, incidence and mortality, and social context were
considered (discussed in Chapter 1) when applying health behaviour theory to guide this
exploratory sequential mixed method study, and to develop survey measures (National
Cancer Institute, 2005). Socio-contextual factors that influenced cancer screening among SA
immigrant populations were identified in the scoping study (Crawford et al., 2015a). The
Behavioral Reasoning Theory (Westaby, 2005) guided the development of the focus group
interview protocol and incorporated an exploration of context or “reasons” for CRC screening
decision-making; whereby, findings were also incorporated in the survey development
process. Collectively, these activities enabled the inclusion of socio-contextual factors in the
conceptual model that guided survey development. In prior review (Chapter 1), the Theory of
Planned Behavior was also limited in considering context (Montano & Kasprzyk, 2008).
Theory of Planned Behavior. The behavioural concept of subjective norm (Ajzen,
1991) aligned well to the key concept related to the social influence of family, friends and
physician on cancer screening uptake (Crawford et al., 2015a, b). The subjective norm
concept highlights the significance of relationships to influence behaviours, and according to
Pasick and colleagues (2009) is “a step toward integration of social context” (p. 107S). The
authors assessed mammography screening behaviour from the relational cultural perspectives
of Filipina and Latina women in the USA (Pasick et al., 2009). The behavioural concept of
subjective norm was examined more closely to understand women‟s interpretations, and
qualitative findings revealed that the conceptual meaning as stated in Ajzen‟s (1991) theory
was not viewed as intended by Filipina and Latina women. Rather than being influenced by
the normative beliefs of important others and motivation to comply, subjective norm was
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viewed as a more implicit form of decision-making (Pasick et al., 2009). The conversations,
advice, and decision-making process among these populations and their important social
supports occurred through informal discussions. The authors suggested that the behavioural
concept of subjective norm as defined in Ajzen‟s (1991) theory may be misinterpreted as
offensive because the consultation and deliberations with important others are unconscious,
and naturally occurring (Pasick et al., 2009). Interestingly, the influence of family for
screening decision-making in SA immigrants varied in the scoping study, the focus group
study, as well as the survey development study (additional comments). While some believed
the family provided advice, others did not discuss screening or health matters with family,
and some believed the family doctor was the most influencing person to promote screening
(Crawford et al., 2015a, b; Chapter 5).
In another study, subjective norm was examined more closely to test the association of
the concept to intention and mammography screening uptake among ethnically diverse
populations (i.e. African American, Chinese, Filipina, Latina, and White) (Stewart,
Rakowski, & Pasick, 2009). Subjective norm influenced screening through normative beliefs
of the importance of regular mammography screening from important others. There was a
significant association between recent mammography screening and complying with
normative beliefs of a sister or a physician (Stewart et al., 2009). These studies underpin the
importance of testing the subjective norm concept and its theoretical associations as this will
assist in determining its relevance to SA immigrant populations and whether it has influence
over and above other behavioural concepts in the Colon Cancer Screening Survey.
6.3 Main Conclusions
The exploratory mixed method study contributed to understanding factors that
influence CRC screening uptake and resulted in the development of the Colon Cancer
Screening Survey for SA immigrants in Ontario, Canada. As well, findings provided
295
knowledge of culturally relevant strategies that may inform the development of community-
based strategies targeted at SA immigrants. The following paragraphs provide main
conclusions from each phase of study.
Scoping study. The scoping study enhanced understanding of factors that influenced
cancer screening among SA immigrants and provided initial exploratory data that informed
on the socio-cultural beliefs of family and holistic views of health care, and reasons for not
screening among SA populations residing in the UK, USA, and Canada (Crawford et al.,
2015a). The gaps in knowledge, barriers, gender differences in screening and factors
associated with uptake were also important to inform practice and future research (Crawford
et al., 2015a). Despite the fact that there was no direct data on CRC screening rates among
SA immigrants in Canada, the low rates of screening from the UK and USA provided
knowledge of disparities in uptake. Of course, these findings need to take into consideration
the heterogeneity of SA populations as they are influenced by historical, political, social,
economic, religious, and migration patterns within the settlement country (Crawford et al.,
2015a). Differences in health care systems and organization of screening also need to be
considered, and therefore, unique strategies to promote CRC screening among SA
populations will be required to be culturally relevant to the settlement context. These findings
are of significance to public health and cancer care practitioners who strive to reduce health
inequities and barriers to access of cancer screening. The scoping study also uncovered a
significant gap in understanding the beliefs, barriers and gender-related factors that influence
CRC screening, and the need for further research (Crawford et al., 2015a).
Focus group study. The findings from the focus group study expanded on socio-
cultural context, beliefs and attitudes, knowledge, supports to access, and strategies to
promote uptake of CRC screening among screened and unscreened SA immigrants in
Hamilton, Ontario (Crawford et al., 2015b). The focus group study had more weight in the
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exploratory sequential mixed method study because of the necessity to gain rich and
meaningful data from SA immigrants‟ perspectives in Canada.
Unique findings that emerged from the focus group study included the aversion to
collecting a stool sample, and perceived increased CRC risk due to loss of prior bowel
practices upon immigration (Crawford et al., 2015b). Experiential learning from peers in
focus groups was also an unanticipated finding as sharing screening stories were beneficial to
unscreened participants and this learning motivated them to talk to their physician about the
test (Crawford et al., 2015b). Another unexpected finding was the brainstorming that
occurred and subsequent recommendations to promote CRC screening in the SA community,
such as community education delivered in SA gathering places, dissemination through ethnic
media, and story-telling through word of mouth discussions.
Family physician support in the provision of information and access to screening was
also a significant finding (Crawford et al., 2015b). The level of explanation provided by
physicians was interesting because some screened participants had CRC screening without a
full explanation of the test, while others had good explanations provided. Determining if this
is common among this population may be achieved through further research. Engaging
physicians, other health care providers, and SA immigrants from local communities in the
development of community-based strategies will be of benefit to increasing CRC screening
uptake in this population (Crawford et al., 2015b). Those who would benefit from this
knowledge include public health and other community health providers to understand
contextually relevant issues and to use recommended strategies to reduce barriers and
improve access to CRC screening in the Canadian context. As well, the findings would be of
benefit to Cancer Care Ontario or other cancer organizations that work to reduce inequities
and promote screening outreach to SA immigrants.
297
Survey development. The findings from the scoping and focus group studies
contributed to the identification of key concepts relevant for use among SA immigrants to
inform the survey development study. The purpose of the survey is to describe or predict
factors that influence colon cancer screening intention and uptake among SA immigrants in
Canada, in order that they could be used for future program planning and interventions. Key
concepts were a good match to behavioural concepts from the Health Belief Model
(Rosenstock et al., 1988) and the Theory of Planned Behavior (Ajzen, 1991). A measurement-
focused literature search enabled the identification of candidate measures that aligned best
with key concepts. Consultation with experts facilitated further decision making on candidate
measures, and additions and modifications to specific measures or items. The Colon Cancer
Screening Survey was cross culturally translated and adapted using two translators, a
synthesis report of two translations, a consensus meeting of two forward translations, and
expert committee review. Pre-testing using cognitive interviews and scripted and emergent
verbal probes were successful among the sample of SA immigrants. Revisions were made to
improve the survey for future pilot testing in post-doctoral work.
Summary. The exploratory sequential mixed method study resulted in a product, the
Colon Cancer Screening Survey. Findings from this research served to provide the
foundational steps to move the field forward and the English and Urdu language version of
the survey is ready to conduct further research to advance understanding of factors that
influence CRC screening intention and uptake among SA immigrants in Canada.
6.4 Dissemination of Study Findings
The dissemination of research findings from this exploratory sequential mixed
method study have been carried out through publication of the scoping study (Chapter 2) and
focus group study (Chapter 3). Additionally, four oral presentations have been completed to
report on study findings during various phases of completion this past year: (1) University of
298
Toronto, Doctoral Symposium for Lawrence S. Bloomberg Faculty of Nursing, May 4, 2015;
(2) Public Health 2015, May 25, 2015; (3) International Conference of Cancer Nurses, July 8,
2015; and (4) Canadian Association of Nurses in Oncology, October 4, 2015. Plans for future
dissemination include reporting back to key SA immigrant communities. As well,
consultation with the regional cancer center in Hamilton, Ontario that coordinates the mobile
van for promotion of population-based cancer screening will be initiated to discuss plans for a
possible presentation for nursing staff. The opportunity to present the results of these studies
to Cancer Care Ontario‟s under-screened and never-screened working group will also be
sought. Collaboration with public health in Hamilton, Ontario will continue; first, to
disseminate results from this research; and second, to explore opportunities for future
research.There will also be further dissemination through submission of manuscripts (Chapter
4 and 5) to measurement journals.
6.5 Strengths and Limitations of the Exploratory Sequential Mixed Method Study
The exploratory sequential mixed method study was particularly conducive to
studying complex phenomenon, such as the social and behavioural aspects of CRC screening
and inequities in uptake among SA populations residing in westernized countries (Creswell &
Plano Clark, 2011). This method allowed a broader and more complete process involving
multiple research questions grounded within Critical Social Theory, an Acculturation Model,
and health behaviour theories. The mixed method approach used in this study also employed
rigorous research methods that considered social context and culture to examine CRC
screening among diverse SA populations.
In this study, findings from the first two phases informed the development of a
survey. The qualitative components of this study were very important contributions because it
allowed the most relevant key concepts related to CRC screening among SA immigrants to be
identified. The survey development study involved rigorous methods of development
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including cross-cultural translation and adaptation and pre-testing of the Urdu and English
language versions of the survey using cognitive interviews. The cross-cultural translation and
adaptation of the survey was a challenge initially in terms of finding two individuals who
were qualified to undertake this task. Three translation firms were contacted with no
responses; however, through public health and SA immigrant community contacts, two
qualified individuals were found.
The focus group study and the survey development study elicited SA immigrant‟s
perspectives by engaging, valuing and respecting their contributions in the exploration of an
important public health issue. Previously established relationships and connections with
public health and the community facilitated ease of access to the SA immigrant population in
Hamilton, Ontario. Most importantly, this research addressed a key recommendation set out
by CASSA (2010), to conduct research with SA immigrants that examines health inequities
related to access to health services.
Although the research was led by one individual, the ongoing level of expertise
provided from the thesis committee, and community advisory group members were
consistent, and enriched the research by facilitating training of the researcher, and adding to
the rigor and validity of findings. The thesis committee members contributed their
backgrounds and expertise in: (1) conducting health equity research with immigrant
populations; (2) cross-cultural research knowledge; (3) health promotion and prevention
background; and (4) qualitative, quantitative, and measurement methods. The community
advisory group members were also an integral aspect to this research contributing their
expertise including: public health work in collaboration with SA immigrants; the promotion
of cancer screening outreach; and the development and implementation of region-wide
tailored interventions to reach under-screened and never-screened populations in the
community.
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The engagement of SA community members to be research assistants was an
additional strength in this study. Research assistants provided support to facilitate access
through language interpretation and data collection for both the focus group study and survey
development study; however, they also gained training and skills for future job opportunities.
The commitment and engagement of research assistants was positive. As the lead researcher,
it also facilitated reciprocal learning because it enhanced my understanding about the
diversity of SA populations in Hamilton, Ontario and of the research assistant‟s experiences
with settlement.
There were limitations in this exploratory sequential mixed method study. The first
limitation was the time-consuming nature of undertaking research of this level led by a sole
researcher. In fact, data collection in the audit trail reflected these particular challenges,
which in reality were important aspects of the learning process. This research took a number
of years to complete for one individual, and represented the inherent challenge of conducting
a multiphase study. For example, the focus group study involved time to first immerse myself
into the communities of recruitment taking more time than anticipated. While access to the
communities was facilitated with ease, the need to build rapport and trust in each recruitment
site was imperative prior to conducting focus groups on a sensitive topic, CRC and screening.
Initially, four research assistants (two males and two females) were hired to support
data collection for focus groups; however, one resigned, and other challenges became
apparent with the remaining research assistants such as conflicts with health or other work or
personal commitments. This presented some delays in relation to data collection.
Cost was also a challenge during this research study. Graduate awards received were
important contributions to this research and supported most but not all costs. In-kind
contributions of time provided by community or service members required additional
consideration because this was extremely beneficial to my conducting this research, and very
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much appreciated. Therefore, to thank community members and other community service
providers who supported my research through collaboration or linkages to other community
contacts, an honorarium was provided.
The scoping and focus group studies used proxy measures for acculturation, such as
years of residence in the western country, and language. The assessment of language assists
in determining if the dominant language of the settlement country has been taken up by new
residents. Language ability was assessed by asking participants to respond to the following
categories: “understand”, “speak”, “read”, and “write” for English, Urdu, or other SA
languages. The drawback is that proxy measures may miss variations in cultural qualities that
influence health decision-making or behaviour. For instance, differences in contextual factors
or beliefs of health and illness may not accurately assess the impact of acculturation on health
if a proxy measure is used (Salant & Lauderdale, 2003).
A number of acculturation instruments have been used in health services research
(Suinn, Rickard-Figueroa, Lew, & Vigil, 1987; Palmar et al., 2007). These instruments have
numerous domains and are useful to assess the level by which acculturation predicts use of
health services (Salant & Lauderdale, 2003). However, they also place greater burden on
participants. In the very beginning stages of this research, this instrument was considered but
due to the importance of concepts that emerged in the scoping and focus group studies, and
the necessity to measure multiple concepts, it was determined that an additional scale with
multiple items would place greater burden on respondents (Aday & Cornelius, 2006).
6.6 Implications for Practice, Policy, and Research
This exploratory sequential mixed method study contributed to practice by enhancing
understanding of cancer and CRC screening beliefs, attitudes, facilitators, and barriers to
uptake that may be used to inform locally relevant strategies for SA immigrants. As well, it
addressed an important gap in CRC screening literature of factors that influence uptake
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among SA immigrant men and women in Canada. Culturally relevant community-based
strategies that emerged from the focus groups study provided useful information for primary
care nurses, public health nurses and other health care providers who strive to improve CRC
screening uptake among diverse SA immigrant communities.
The findings may be of importance to the ColonCancerCheck program, Cancer Care
Ontario, and Public Health units across Ontario in relation to barriers that persist despite the
implementation of a population-based CRC screening program. Culturally relevant strategies
reported from this research may augment program design to meet the needs of SA
immigrants. For example, the endorsement of the family physician in the promotion of CRC
screening through invitation letters may be augmented through other methods, such as
encouraging collaboration between health sectors to develop targeted and tailored
community-based strategies.
A current focus of attention is for primary care and public health to capitalize on
individual strengths and work towards building relationships to improve population health
(Institute of Medicine, 2012). The recommendation of more family physician engagement in
community-based strategies was an important finding from this research, and aligns well with
the potential for collaborative work between primary care and public health. Primary care and
public health have a common goal to promote the organized CRC screening program in
Ontario, Canada. Collaboration may lead to the development of locally relevant community-
based strategies with the aim of reducing barriers to CRC screening and improve access, and
potentially uptake. While leadership across disciplines is necessary, the role of nurses may be
integral in strengthening the development of community-based strategies. Nurses are ideally
positioned to lead initiatives that facilitate outreach and awareness of CRC and screening to
reduce barriers, and in turn promote uptake. This may be achieved through community
education in common gathering places of SA immigrants, such as temples, or developing
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strategies that incorporate storytelling through social networks. As well, public health nurses
are well positioned to evaluate strategies through research.
6.7 Future Research Directions
The exploratory sequential mixed method study was foundational to enhancing
understanding of factors that influence uptake of CRC screening. Additionally, it provided a
basis for a continued program of research. The main outcome of this research was the
development of a product, the Colon Cancer Screening Survey. In the survey development
study, the Urdu language survey was used to make it accessible to SA populations that
reported low English proficiency. This provided an opportunity to conduct research with
populations who are under-represented in research due to language barriers. In cognitive
interviews, a number of Urdu speaking participants did provide additional comments during
the interview by expressing gratitude for providing information on CRC and screening
because they had not heard of or had CRC screening.
The English and Urdu language survey will be fielded with SA immigrants in
Hamilton, Ontario in post-doctoral work. The anticipated findings from the pilot study will
enable integration (i.e. mixing) to validate findings that emerged from the scoping and focus
group studies (Creswell & Plano Clarke, 2011). As well, reliability and validity testing will
also need to be completed in post-doctoral research. The long term goal will be to conduct a
larger population-based study to further advance understanding of factors that influence CRC
screening intention and uptake among SA immigrants in Ontario, Canada, and in turn to plan
for interventions.
Future research will require that measures in the survey be tested for reliability and
validity (Aday, & Cornelius, 2006). This research will build on findings from the cognitive
interviews. Reliability will assess stability and internal consistency of each measure
separately, and for validity, strategies for assessing construct validity will be used (DeVellis,
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1996; Kirshner & Guyatt, 1985). In determining the sample size for reliability, a confidence
interval approach will be used to ensure that the sample is sufficiently powered to accurately
test for reliability (Streiner, & Norman, 2008). To examine internal consistency reliability of
the measures, Cronbach‟s alpha will be used. Construct validation of the measures will be
used to assess if the instrument is measuring what it intends to measure. Furthermore, this
process will uncover unique aspects of concepts related to CRC screening in the SA
immigrant population that may not have been previously tested in other instruments. To test
for construct validity, there are several methods to use in determining if a measure is valid.
Validation can be achieved using a known group experiment (Streiner, & Norman, 2008). In
testing using known groups, the aim will be to select distinct groups based on the presence or
absence of a behaviour or trait, and develop logical, a priori hypotheses of the expected scale
scores for each group (Streiner, & Norman, 2008). Future testing for predictive validity of
measures may also be undertaken to determine how well individual measures predict CRC
intention or screening uptake.
Once the Colon Cancer Screening Survey has gone through reliability and validity
testing, then it will be ready to administer to a larger population to further advance
understanding of factors that influence CRC screening in Ontario, Canada. Findings from a
larger cross sectional study will be useful to guide the development of interventions that
provide equitable access and aim to increase CRC screening among SA immigrants.
The key concepts developed for survey development produced an initial conceptual
model; however, it is not known how key concepts interact and influence CRC intention or
screening uptake. The importance of each concept will vary among SA immigrants in terms
of influencing CRC screening intention or uptake. For instance, perceived barriers or
subjective norm may be of greater importance than perceived self-efficacy in relation to
influencing CRC screening intention or uptake. Prior studies with SA immigrants have
305
utilized several of these key concepts to examine predictors of CRC screening, but they have
had different results. South Asians were more apt to have ever had CRC screening if they:
had higher education and income levels; resided in the USA longer; had accessed a physician
within the year; had higher rates of perceived benefits; and reported lower perceived barriers
(Manne et al., 2015). Menon and colleagues (2014) reported that perceived benefits and
perceived barriers did not significantly predict FOBT or endoscopy use (i.e. flexible
sigmoidoscopy or colonoscopy). The contextual variables that influence screening include
social, cultural, economic, political, legal, historical and structural forces, and there will be
unique differences between SA populations residing in the USA and those residing in
Canada. Therefore, there may be differences in which beliefs or barriers have more influence
on CRC screening uptake among SA immigrants in Canada. Additionally, the Health Belief
Model (Rosenstock et al., 1988) was developed for western populations; therefore, it will be
imperative to test the relationships between key concepts in the conceptual model with SA
immigrant populations in Canada.
An interesting finding that emerged from the focus group study that requires further
exploration is the role of primary care nurses, public health nurses or nurse practitioners in
terms of promoting population-based CRC screening. Nurse-led specific CRC screening
initiatives that target the SA community could be developed and evaluated through research
to examine if uptake improves.
Finally, another potential area for future study is to further assess acculturation. This
may be achieved by incorporating an acculturation scale into the survey to assess more
closely if acculturation influences CRC screening (Suinn et al., 1987; Palmar et al., 2007).
This may serve to distinguish between influencing factors of acculturation and other
unidentified barriers.
306
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