The Experiences of Diabetes in Pregnancy among First Nations Women

in Alberta; and the Contributors to a Healthy Pregnancy

Richard T. Oster, Maria J. Mayan and Ellen L. Toth University of Alberta

INTRODUCTION In the current study we aimed at gaining insight into the dramatic differences in rates

of diabetes in pregnancy, and outcomes of such pregnancies, between Canadian

women of First Nations descent and women of the general population (1-3). Our

purpose was to acquire a deeper understanding in this area from the perspective of

First Nations women with real life experience or diabetes in pregnancy. Qualitative

findings among non-Aboriginal women with gestational diabetes (GDM) (4,5),

including a recent review (6), have been published, and suggest areas in need of

improvement for the health care systems to benefit pregnant women and their

families. However, little is known of the experiences of First Nations women.

This study was part of a larger mixed methods plan aimed at examining diabetes in

pregnancy among Aboriginal women, with the ultimate goal of developing

interventions that can effectively improve care for diabetes in pregnancy. A multiphase

mixed methods research approach is being utilized (7), whereby this study

encompassed the initial qualitative phase.

OBJECTIVE To use a focused ethnography to understand the experience of diabetes in pregnancy

and what factors contribute to achieving a healthy pregnancy in First Nations women.

METHODS Sample

Women were recruited via the practices of two physicians, and the allied health

professional members of their diabetes care team, as well as through word of mouth

and a recruitment poster. First Nations (self-reported) adult women (18 years or older)

that had previously had GDM or pregestational diabetes in pregnancy (within five

years) were recruited. All of the participants received care for diabetes in pregnancy

within the same major metropolitan city. Convenience sampling methodology was

utilized. A total of 12 First Nations participants were needed to reach data saturation.

Data Generation

Data were generated over a period of approximately 10 months from May 2012 to

March 2013. Unstructured interviews with participants were carried out at a mutually

selected location. During the interviews, open-ended questions were asked to prompt

unstructured discussion. Interviews were audio recorded and transcribed (verbatim).

Data Analysis

Data were subject to qualitative content analysis using ATLAS.ti for data management

and organization. Data analysis took place concurrently with data collection. Data

collection and analysis ceased on data saturation, when no new information or insight

emerged, and when the categories were well refined and defined. The participants

were invited to a group meeting to hear the results share their views. Each participant

that attended the meeting was provided their transcript for review and the findings

were verified as an accurate portrayal of their collective experiences.

Rigor

Rigor in our study was achieved by adhering to the principles of validity,

generalizability, and reliability (8). Also, throughout the entire research process, a

reflective approach was strived for by keeping a personal journal of thoughts,

emotions, reactions, expectations, assumptions, ‘why’ questions, and so forth.

Ethics

We obtained ethical approval from the Human Research Ethics Board of the

University of Alberta. Participants remained unidentifiable and written informed

consent was obtained. Numerous meetings with interested Aboriginal persons were

undertaken prior to, during, and after data collection. These meetings served to lend

advice and guide the research in a culturally appropriate manner.

RESULTS

What is it like to have diabetes in pregnancy?

What factors might contribute to attaining a healthy pregnancy in women that have

diabetes in pregnancy?

Taken together, the experience of diabetes in pregnancy for First Nations women was

“good and bad”, one wrought with struggle but balanced to some degree by positive

lifestyle changes. A loss of control, and at the same time striving to control blood sugar

levels, permeated living with diabetes in pregnancy. For some women, diabetes in

pregnancy offered a chance to take control of their health. The degree to which the

women felt they could control their diabetes and their health strongly influenced whether

the women felt they had had a positive or a negative pregnancy experience. Having a

strong support system including family, healthcare provider, cultural/community, and

internal support, was crucial to whether the women felt they had a healthy pregnancy or

not. Facing diabetes in pregnancy alone resulted in a daunting and challenging

pregnancy. Most women had the necessary resources to manage their diabetes but when

awareness and preceding knowledge of diabetes in pregnancy was lacking, many of the

women felt overwhelmed with information upon diagnosis.

IMPLICATIONS As high-risk pregnancies and poor outcomes are more common among First Nations

women regardless of diabetes status, efforts must be made to improve pregnancy care.

First Nations women with diabetes in pregnancy are not likely to benefit from ‘broad

brush’ healthcare, rather providers should look to boost the support systems of these

women, add to their sense of autonomy, and raise awareness of diabetes in pregnancy.

Accordingly, providers should strive for a more patient-centered approach. Such an

approach should allow for mutual exchanging of information, shared power and decision

making, and an even patient-provider partnership where providers actively listen to

patients and learn in-depth about their life circumstances.

Healthcare providers should also work to strengthen women’s support systems beyond

solely that of healthcare provider support. Spouses and other family members should be

engaged and involved as much as possible during clinic visits throughout the pregnancy.

Other cultural and/or community supports should also be included if possible and if

required, such as Elders or close friends. Peer support or cultural support programs are

needed, particularly for those that lack family support. Women’s internal drive to protect

their fetus should also be stoked by providers through positive encouragement rather

than fear inducement.

REFERENCES 1. Dyck R et al. Diabetes Care. 2002;25(3):487-93. 2. Liu SL et al. Diabetic Medicine. 2012;29(8):E180-3.

3. Willows N et al. Am J Human Biol. 2011;23(1):126-31. 4. Evans MK & O'Brien B. Qual Health Res. 2005;15(1):66-81.

5. Persson M et al. Scan J Car Sci. 2009;24(3):454-62. 6. Devsam B et al. Women Birth. 2013;26(2):E69-76.

7. Creswell J, Plano Clark VL. SAGE Publications; 2011. 8. 7. Morse JM et al. Int J Qual Meth. 2002;1(2):13-22.

Awareness and Resources:

“There was a lot to learn”

“I didn’t even know what it was”

“A whole lot of information thrown at

me” “I had good access”

“Sometimes you don’t have money

to buy healthy foods”

“Its harder when you are on a

budget”

“I walked a lot”

Control: “A struggle for

control”

“No getting around it”

“No control over my health”

“Just do as your doctor says”

“I had to take control”

“My blood sugars got out of

control”

Positives: “It helped me too”

“It was a real eye-opener”

“It made me take care of myself

better and eat healthier”

“Now I know and I can show my

kids”

“Ever since then me and my kids

diet has changed”

“I’m more knowledgeable”

Support: “I didn’t do it alone”

“Family helped”

“My husband tried to understand”

“Healthcare staff was always there”

“Women like to hear like they are

doing something good, not just that

they are harming themselves”

“Health is more holistic”

“An open ear”

“For my baby”

Challenges: “It was hard”

“Extra stress”

“Extra work”

“Inconvenient”

“Problematic”

“Fear”

“Scared for the baby more than

for myself”

“Many different emotions”

Figure 1. Model of integrated main qualitative findings. “+” denotes increase and “-

“ denotes decrease.

Participant

number

Age during

pregnancy

Diabetes in

pregnancy type

Number of years

between birth and

interview

Total number

of children

Home

community type

1 38 GDM 3 3 Urban city

2 33 GDM 2 5 Urban city

3 28 Pregestational 2 4 Aboriginal

4 27 GDM 4 3 Aboriginal

5 32 GDM 5 6 Aboriginal

6 26 Pregestational 1 5 Aboriginal

7 38 GDM 1 5 Aboriginal

8 30 GDM 1 2 Urban city

9 32 Pregestational 4 4 Aboriginal

10 39 Pregestational 1 1 Aboriginal

11 36 Pregestational 2 3 Aboriginal

12 38 Pregestational 1 6 Aboriginal

Average 33 N/A 2 4 N/A

Table 1. Participant characteristics