signature page - simmons university · web view, 2017). while cancer, and specifically breast...

The Multidimensional Impact of Serious Illness on Partners of Young Women with Breast Cancer

Nancy A. Borstelmann

Submitted to the Faculty of Simmons College School of Social Work in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy

2018, Nancy A. Borstelmann

Signature Page

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Abstract

The Multidimensional Impact of Serious Illness on Partners of Young Women with Breast Cancer

Nancy A. Borstelmann, MPH, LICSW

Chair: Peter Maramaldi, PhD, MPH, LCSWSimmons College School of Social Work

Background: Scant research addresses the impact of cancer diagnosis on partners of young

women with breast cancer, their coping, and unmet needs. These younger caregivers may be

particularly vulnerable to the stress of managing the complexity of cancer care along with their

affected partner. Also, little is known about the wellbeing of these partners when active

treatment is completed and the couple has transitioned to survivorship.

Methods: Partners of young women with Stage 0-IV breast cancer, diagnosed at age ≤40 years,

were invited to participate in a survey evaluating psychosocial concerns, coping efforts, and

mental health outcomes with a focus on factors that may be amenable to intervention. Logistic

regression analysis explored predictors of anxiety in partners in survivorship; linear regression

analysis examined predictors of quality of life among parenting partners. Responses to

quantitative measures and an open-ended question were explored among participants with an

affected partner in active treatment.

Results: Analyses revealed a number of individual and relationship related concerns, including

a high proportion of partners with symptoms of anxiety that would benefit from attention. A

strong relationship between maladaptive coping strategies and anxiety was demonstrated; lower

educational attainment was also tied to higher anxiety. Anxiety, parenting concerns, sexual

dissatisfaction, and support needs were significantly linked to poorer quality of life. Post-

traumatic growth as a result of cancer was identified among some partners.

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Conclusion: The results of these exploratory studies have valuable implications for young

breast cancer survivors and their partners, and suggest factors with programmatic and

intervention potential. Ideally, mental health and unmet cancer-related needs in both patients

and partners are identified early and reassessed at nodal points of care, including disease

recurrence, metastatic disease, as well as transition to survivorship and longer-term follow up.

Patients may benefit from attention to partners’ needs, which if not addressed, may have negative

impact on their own, and their children’s, adjustment to illness. There is opportunity to build

upon this research with more diverse populations and longitudinal studies aimed at uncovering

additional insights into factors that influence variations in partners’ adjustment to the impact of

cancer over the course of care.

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Acknowledgements

This project was supported through funding granted to Ann H. Partridge, MD, MPH of

the Dana-Farber Cancer Institute (DFCI): Susan G. Komen for the Cure; The Breast Cancer

Research Foundation; The Pink Agenda.

I would like to offer a special thank you and deep gratitude to my committee members:

Dr. Peter Maramaldi, Dr. Tamara Cadet, and Dr. Ann Partridge for their expertise, feedback, and

guidance over the course of the doctoral process, and for their collective commitment to my

success in completing this project. I am also incredibly appreciative of their flexibility in

response to the unexpected shift in the weather that affected the plan for my dissertation defense.

I also want to acknowledge the invaluable support and thoughtful guidance of Shari

Gelber, MS, and Shoshana Rosenberg, ScD, of the Dana-Farber Cancer Institute, and the Young

Women’s Study team members for their steady assistance. In addition, I want to thank my

social work and other DFCI colleagues for all their incredible encouragement and support. It

truly takes a village.

I deeply thank my spouse, Eric, and my children, Jeffrey, Joel, and Emily, and their

partners, Meghan, Matt, and Jared, for their unconditional love and support through it all.

Finally, I want to thank the young women with breast cancer who granted permission for

contact with their partners, and for those partners who participated and provided the opportunity

to enhance our understanding of their experience.

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Dedication

I would like to dedicate this work to the spouses, partners, children, siblings, relatives, and

friends who are the committed caregivers of cancer patients.

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Table of Contents

Title Page........................................................................................................................................................................ i

Signature Page............................................................................................................................................................ ii

Abstract......................................................................................................................................................................... iii

Acknowledgements................................................................................................................................................... v

Dedication.................................................................................................................................................................... vi

Table of Contents..................................................................................................................................................... vii

Introduction and Conceptual Framework......................................................................................................1

Chapter One: Partners of young breast cancer survivors: A cross-sectional evaluation of psychosocial concerns, coping and mental health......................................................................................9

Figure 1. Flowchart........................................................................................................................................... 25

Table 1. Patient and partner characteristics (N=289).......................................................................26

Table 2. Prevalence of psychosocial concerns in partners (N=289)...........................................27

Table 3. Predictors of anxiety in partners...............................................................................................28

Chapter Two: Psychosocial issues and outcomes of parenting partners of young breast cancer patients......................................................................................................................................................... 29

Discussion.............................................................................................................................................................. 38


Table 1. Parenting partner characteristics (N=219)..........................................................................49

Table 2. Prevalence of parenting partners psychosocial concerns (N=219)...........................50

Table 3. Predictors of partner quality of life..........................................................................................51

Chapter Three: An exploratory study of the psychosocial impact of caregiving on partners of young women with breast cancer in treatment...................................................................................53


Table 1. Patient and partner characteristics (N=25).........................................................................77

Table 2. Prevalence of partners psychosocial concerns (N=25)...................................................78

Figure 2a-f...................................................................................................................................................... 79-84

Conclusion.................................................................................................................................................................. 85

References.................................................................................................................................................................. 92

APPENDIX A............................................................................................................................................................ 102

APPENDIX B............................................................................................................................................................ 123

Introduction and Conceptual Framework

Breast cancer is the most common cancer in women and the second leading cause of

cancer-related deaths among women in the U.S.(Cancer Facts and Figures - Surveillance and

Health Services Research, 2017). While cancer, and specifically breast cancer, is considered a

disease of aging, breast cancer also affects a significant number of younger women. The

physical and emotional effects of the disease and its treatment can be profound, and for young

women and their partners, particularly challenging given age-related factors. Breast tumors in

young women more often have potential to be characterized as aggressive with greater likelihood

of intensive treatment, intensive side-effects, more time spent at the cancer center, and increased

disruption in usual routines (Bloom, Stewart, Oakley-Girvan, Banks, & Shema, 2012). In the

context of their life stage, young patients and partners are more likely to have dependent-age

children at home, as well as other heightened psychological, physical, and social challenges that

may affect their adjustment (Howard-Anderson, Ganz, Bower, & Stanton, 2012; Lebel, Beattie,

Ares, & Bielajew, 2013).

Both patients and partners have the challenge of adjusting to the demands of the illness

and treatment across the continuum of care. The cancer caregiving and couple’s literature

underscores the significance of a cancer diagnosis for both partners, and points to the importance

of further study on the broader interpersonal context in which younger families are coping with

breast cancer. In breast cancer related studies, the majority of caregivers are men. Caregiving

burden has been a focus of research, though less is known about cancer caregiving men in

general, and few studies have included a focus on younger male caregivers (Lopez, Copp, &

Molassiotis, 2012; Nijboer et al., 2000). Younger partners who are cancer caregivers are a

population in need of attention to their experience, the perceived impact, their coping, and unmet

needs. There is a gap in understanding of what specific factors may affect positive and negative

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psychosocial outcomes among partners of young women diagnosed with breast cancer. Not only

is research scarce on younger partners’ subjective experience during diagnosis and treatment,

little is known about the wellbeing of partners when treatment is completed and the couple has

transitioned to survivorship. The purpose of this research was to expand understanding of the

psychosocial adjustment and needs of partners of young women with breast cancer by exploring

the partners’ perceptions of support, psychosocial concerns, coping efforts, post-traumatic

growth, and outcomes including depression, anxiety, and quality of life. Ultimately, the aim was

to identify psychosocial factors associated with variation in quality of life and mental health

outcomes that may be amenable to intervention. Appropriately designed and targeted

psychosocial interventions may be important to support the partner either individually or as part

of a couple adjusting to serious illness. Interventions may also support the woman with breast

cancer herself, who may benefit from attention to the partner’s needs, which if not addressed,

may have negative impact on her own adjustment to illness. Finally, if there are children in the

family, each individual parent’s and the couples’ functioning have the potential to affect the

experience and wellbeing of the children as they too cope with cancer and related changes in the

family.

There were no a priori hypotheses; this research comprises three exploratory, descriptive,

and hypothesis-generating studies on the experience of breast cancer and the associated impact

on partners, their quality of life, and psychological wellbeing. Comprehensive review of

theoretical perspectives and prior research in the area of caregiver, partner, and family

adjustment to the impact of cancer informed the development of a conceptual model for framing

this research and the choice of measures.

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This conceptual model, along with extensive clinical experience and awareness, guided

the development of the partner survey and provided a framework for exploring selected factors in

adjustment to illness. Two survey versions were devised, one for partners in survivorship and

one for partners where the patient was presumed in active treatment. For the simplicity, the term

“partner” will be used to refer to the women’s spousal or intimate relationship. This self-

administered cross-sectional survey was planned for the significant intimate partner or spouse

identified by young women who participated in the Helping Ourselves, Helping Others: The

Young Women’s Breast Cancer Study (YWS). YWS is an ongoing multi-institutional

prospective cohort study established to explore biological, medical, psychosocial, and quality of

life issues in young women with breast cancer. Eligibility requirements for YWS include

diagnosis with breast cancer at or under 40 years of age and being English speaking.

The aims of each of the three studies were as follows:

Study 1: To examine psychosocial concerns, social support, coping efforts, and mental health

outcomes (specifically, depression and anxiety) among partners of young survivors of early stage

breast cancer, with a focus on the wellbeing of these partners when active treatment is completed

and the couple has transitioned to survivorship.

Study 2: To identify socio-demographic, cancer-related, and psychosocial factors among

partners of young women who were co-parenting minor children in the setting of early stage or

advanced breast cancer, and to evaluate the relationship of these factors with their overall quality

of life. This study set out to specifically characterize the experience of well parent partners.

Study 3: To describe the psychosocial concerns and needs of a subset of respondent partners of

young women with breast cancer that met the following criteria: time since diagnosis < 12

months; and/or Stage IV disease (at diagnosis or in metastatic setting); and/or local recurrent

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disease < 12 months. The purpose was to explore the experience of well partners when the

affected partners (i.e., young women with breast cancer) were in active treatment, or had very

recently completed treatment.

Theoretical Perspective: Perception and Coping Efforts

Stress and coping theory is a key framework for understanding the role of stress, coping

behaviors, and social support in adjustment to illness. According to the theory, stress arises

when a situation is appraised as demanding, yet appropriate resources are not available to

maintain psychological equilibrium and cope effectively (Lazarus & Folkman, 1984). Based on

stress and coping theory, Lazarus and Folkman (1984) proposed the transactional model of stress

and coping in which stress is a “person-environment interaction” (e.g. person and aspects of

his/her particular situation) and incorporates the role of perceptions and coping efforts in how

individuals respond to stressful events. Thus, perceptions, not the objective stressor, are the

main determinant of the effect on the person’s thoughts, feelings, and actions. In this model, for

example, person-environment interplay (e.g., well partner-spouse diagnosed with breast cancer)

and the outcome (e.g., heightened anxiety) are based on subjective judgment, the individual’s

personal interpretation of the situation, event, or experience. Two major concepts in the

transactional model have been applied to caregivers’ adjustment: primary and secondary

appraisal (Gaugler, Eppinger, King, Sandberg, & Regine, 2013). Primary appraisal is an

individual’s assessment of the personal meaning of a stressor, event, or situation (Glanz &

Schwartz, 2008). Primary appraisal results in perceiving and identifying an event or

circumstance as a threat, challenge, loss, or having little impact (Glanz & Schwartz, 2008).

Thus, a stressor may be viewed as overwhelming, seriously challenging or more manageable.

Secondary appraisal is the perception of what one can do about the situation, which includes

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ones view of control related to the stressor and perceived capacity to manage emotions and

identify possible coping strategies (Glanz & Schwartz, 2008). Together, primary and secondary

appraisal form the sense of what type of challenge an individual may be dealing with, coupled

with how one conceptualizes dealing with the stressor. These subjective assessments then

inform personal coping efforts, which are the emotional and behavioral responses to stress

(Lazarus & Folkman, 1984).

Social Support and Stress Buffering

A related hypothesized pathway in this conceptual model of stress and coping is through

a person’s belief or perception of social support as available and accessible if needed

(Wethington & Kessler, 1986). Wethington and Kessler (1986) contend that the perception of

viable support affects the appraisal of challenging situations as less stressful and enhances

coping. From this theoretical perspective, social support reduces the impact of stressful

situations through activation or facilitation of more adaptive coping strategies such as open

expression of feelings, engagement in active problem-solving, and cognitive reframing (Thoits,

1986). Social support, defined as “aid and assistance exchanged through social relationships and

interpersonal transactions” (Ashida & Heaney, 2008), has powerful and diverse effects on how

people adapt to stressful events (Moskowitz, Vittinghoff, & Schmidt, 2013). One’s social

network, the interpersonal linkages between people that serve varied functions, may or may not

provide support that is needed (Ashida & Heaney, 2008). In a major review of social support

and social network studies, Cohen and Willis (1985) concluded that the effect of social support

“varied as a function of the conceptualization of social support”. In other words, support and

related interactions are interpreted, shape perceptions, and influence subsequent behaviors

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(Blumer, 1994). Furthermore, even if the social network has intentions to offer support, this

support may or may not be the support that is desired or even actually helpful.

An environment viewed as not supportive can adversely affect one’s ability to cope with

a health threat (Glanz & Schwartz, 2008). Subjective reality (e.g., self-reports of limited

support) appears to be a prime factor in coping efforts and associated with less adaptive

outcomes (Nijboer et al., 2000). Conversely, a caregiver’s belief or perception that social

support is positive and accessible may affect appraisal of a challenging situation as more

manageable or less overwhelming, thus enhancing coping (Linden & Vodermaier, 2012).

Linden and Vodermaier (2012) also highlight that stress reduction is more closely linked to

perceived support and satisfaction with the available support than to the size of the support

network. Furthermore, evidence for stress buffering has appeared to be related not to the

quantity of support, but to the “perceived quality and appropriateness of these social resources”

(Cohen & Wills, 1985). In this context, under circumstances such as the diagnosis of breast

cancer in one’s partner, exploration of perceptions of social support may be highly informative

for understanding caregiver unmet needs and appropriately targeted caregiver and couple

interventions.

Coping Efforts and Psychosocial Health Outcomes

Coping style is defined as the behavior enacted in response to a stressor in an effort to

reduce or resolve stress (Lazarus & Folkman, 1984). Coping efforts are the emotional and

behavioral responses to stress and are related to that style. Two general forms of coping

strategies are problem-focused and emotional-focused coping (Lazarus & Folkman, 1984).

Problem-focused coping attempts to find solutions to resolve the problem by direct action, such

as learning new skills, changing a way of behaving, and finding out answers to questions, while

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emotion-focused coping includes strategies like wishful thinking, minimization, and avoidance

(Lazarus & Folkman, 1984). These approaches are not inherently more or less adaptive or

maladaptive; rather, the degree to which an approach is adaptive is more dependent on the

context and flexibility with which a strategy is applied (Folkman, Lazarus, Dunkel-Schetter,

DeLongis, & Gruen, 1986). Coping flexibility involves the ability to change and adapt coping

strategies over time and across different stressful conditions, as different coping efforts work

more effectively than others under certain circumstances (Folkman et al., 1986).

With a diagnosis of cancer in a partnered individual, maladaptive patterns of coping and

communication may arise in the unaffected partner for a number of reasons including managing

potentially new or increased competing demands, caregiving for the affected partner and

children, and their own emotional distress (S. Manne & Badr, 2008). The literature points out

the negative consequences of withholding and not communicating concerns, both on the partner

directly and on the partner’s interactions with the patient. In one study focused on younger

women with breast cancer, communication issues related to the partner were identified as the

greatest relationship concern (Avis, Crawford, & Manuel, 2004). Partners of younger cancer

patients, both younger themselves and potentially in their relationship, may have more limited

experience in weathering life stress together as a couple or awareness of how to best provide

support under challenging circumstances. Furthermore, behavior and emotional expression may

not fit expectations, for both partner and patient. When needs are not met, especially during

times of heightened emotional vulnerability, dissatisfaction and conflict may follow (S. Manne &

Badr, 2008; S. Manne et al., 2014). In other investigations focused on couples dealing with

cancer, negative interactions such as avoidance or criticism were associated with increased

distress, maladaptive coping, and intrusive thoughts about cancer (Figueiredo, Fries, & Ingram,

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2004; Kinsinger, Laurenceau, Carver, & Antoni, 2011; Linden & Vodermaier, 2012; S. Manne et

al., 2014). If relationship stress develops, a partner may withdraw as self-protection. This

behavior can lead a patient to perceive that her partner is unsupportive or an unreliable source of

support. As a result, the patient may experience heightened distress, potentially leading the

partner to believe that discussion about cancer-related challenges should be left alone (S. Manne

& Badr, 2008).

These conceptualizations and findings from prior work underscore the value in further

exploration and understanding of the psychosocial issues and needs of partners as they attempt to

cope with cancer. Given the importance of partners’ wellbeing, their critical role in supporting

patients, and the interconnections between partners’ and patients’ functioning in response to

illness-related stress, the findings from this research, and future research based on this work, may

guide the development of interventions for partners and couples. Next steps may include moving

forward with enhanced understanding of modifiable risk factors or supportive needs that can be

addressed to improve and potentially optimize individual, relationship, and family outcomes over

the continuum of cancer care and in survivorship.

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Partners of young breast cancer survivors:

A cross-sectional evaluation of psychosocial concerns, coping and mental health

Many challenges accompany a diagnosis of cancer for individual patients, their families,

and their social networks. Spouses or other intimate partners are most often turned to for support,

yet they too are affected by and dealing with their partner’s serious illness (Gaugler et al., 2013;

Kim & Given, 2008). Partners are also often primarily responsible as caregivers for their loved

ones over the course of illness and treatment, and into survivorship (Given et al., 2004; Williams

& Bakitas, 2012). For young women with breast cancer, the caregiving population is largely

made up of the men who are spouses or partners, and less commonly, parents, siblings and

female partners. Less is known about men in general as cancer caregivers, and scant research has

focused on younger male partners (Lopez et al., 2012; Nijboer et al., 2000).

The role of partner and cancer caregiver is a complex, dynamic experience, which

presents an ongoing challenge in adjusting to caregiving’s many facets (Donovan-Kicken,

Tollison, & Goins, 2012). In addition to the caregiver’s critical role in providing emotional

support for their ill partner, responsibilities may be comprehensive, ranging from coordinating

appointments, fielding concerns from family and friends, and helping with treatment-related

decisions to managing the household, caring for children’s needs, and dealing with financial and

insurance issues. Depending on the pre-morbid relationship of the couple, these activities may be

taken on with little preparation, minimal support, and on top of their usual day-to-day work and

life stressors (Blum & Sherman, 2010; Kim, Kashy, Spillers, & Evans, 2010; van Ryn et al.,

2011). Changes in health care delivery have also contributed to the challenges for caregivers of

cancer patients. As survivorship rates have grown and more cancer care has shifted from

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inpatient to outpatient settings in recent years, the demands on caregivers have increased

accordingly (Trudeau-Hern & Daneshpour, 2012; van Ryn et al., 2011).

Addressing multiple and often competing demands as a caregiver can be overwhelming.

The stress associated with this multidimensional role not only has a psychological impact

(Pitceathly & Maguire, 2003), but may also lead to physical health problems and social

challenges (e.g., employment status change, financial struggles) for caregivers (Blum &

Sherman, 2010; Northouse, Williams, Given, & McCorkle, 2012). Caregivers’ unmet needs for

support can be significant and may result in poorer quality of life and higher levels of subjective

burden (Braun, Mikulincer, Rydall, Walsh, & Rodin, 2007; Printz, 2011). Studies have identified

caregiver burden as an important predictor of anxiety and depression (Rhee et al., 2008; Rivera,

2009). Although many partners are resilient, a significant number appear to experience levels of

distress similar to or even greater than that of patients (Baider, Ever-Hadani, Goldzweig,

Wygoda, & Peretz, 2003; Baucom, Porter, Kirby, Gremore, & Keefe, 2005; Kim & Carver,

2007).

After treatment is over, partners and patients have to navigate the transition to

survivorship and the resumption of “normal” life. Common issues such as fear of cancer

recurrence, existential concerns, and changes in life plans all must be managed as the patient and

partner adjust to survivorship (S. Manne & Badr, 2008). Given the impact of a cancer diagnosis

on caregivers, attention to the partner experience is essential to ensure they can provide the best

possible care to the patient. Additionally, how partners react and respond may affect the

adjustment and functioning of their partners with breast cancer (Borstelmann et al., 2015; S.

Manne et al., 2014; Wimberly, Carver, Laurenceau, Harris, & Antoni, 2005). Patients and

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partners have to adapt and cope, not only individually, but also as a couple and manage their

relationship through these stressful times (Baucom et al., 2012).

Finally, it is important to consider other contextual factors that may affect the experience

of partners, and dyads, in general. An adult developmental framework suggests that life stage is

an influential factor in physical, social, and psychological adaptation to stressors (Rowland,

1990). In the context of their stage in life, these couples may be confronted with a particularly

heightened set of demands: the balance of dependent children and work; concerns about fertility

and future child-bearing; career and educational interruption; compromised financial security;

and worries about physical changes and sexuality (Howard-Anderson et al., 2012; Lebel et al.,

2013). Research has also identified treatment-related issues that may contribute to lower quality

of life among young women with breast cancer and their partners (Baucom et al., 2005; Lebel et

al., 2013). Breast cancer in young women is more often aggressive, potentially leading to multi-

modal therapy including chemotherapy, surgery, and radiation (Partridge et al., 2016). While

intensive treatment can improve cancer outcomes, other consequences include greater likelihood

of side effects, more time spent at the cancer center, and increased disruption in usual routines.

Further, despite often receiving more aggressive therapy, young women remain at higher risk of

recurrence than older breast cancer survivors; awareness of this may compound anxiety and fear

of recurrence for both the patient and partner (Howard-Anderson et al., 2012; Ziner et al., 2012).

Study Aims

The experience of partners who are caregivers to young patients has not been well

addressed, including the perceived impact of their partner’s diagnosis, their coping, and attention

to their unmet needs. Also, little is known about the wellbeing of these partners when active

treatment is completed and the couple has transitioned to survivorship. In the present study, we

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aimed to examine psychosocial concerns, coping efforts, quality of life, and mental health

outcomes (specifically, depression and anxiety) among partners of young survivors of early stage

breast cancer, with a focus on factors that may be amenable to intervention.

Methods

Study participants

The participants in this study were the partners of women enrolled in the Helping

Ourselves, Helping Others: The Young Women’s Breast Cancer Study (YWS), a multi-site

prospective cohort study of young women with breast cancer established to explore their

biological, medical, psychosocial, and quality of life issues (NCT01468246). Eligibility

requirements for the YWS included diagnosis of breast cancer at or under 40 years of age and

ability to speak English. For simplicity, the term “partner” is used to refer to the women’s spouse

or self-defined significant partnered relationship. Relationship status was determined based on

whether women self-reported being married or in a partnered relationship on the most recent

YWS survey they had completed. The institutional review boards (IRB) of the Dana-Farber

Harvard Cancer Center and participating sites approved the partner study as an amendment to the

YWS protocol. IRB review included both scientific and human subjects review. A letter was

mailed to 718 partnered women that described the purpose of the research and asked permission

to contact their partner and for the partner’s contact information. A waiver of written informed

consent was IRB-approved. An invitation, including the required elements of informed consent,

was sent to 494 partners. Per IRB-approval, informed consent was implied by response to this

low risk observational survey study. An online survey (using RedCap, a secure database

platform) was emailed to respondents, with a paper version available for participating partners

who did not have access to, or preferred not to use, the online method. Partners were asked to

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complete the survey without discussion with the patient; 307 surveys were completed, for a

response rate of 66%. Here we report on completed survey findings from the respondent

partners of women without advanced disease (stage 0-3 at diagnosis) at the time of the survey,

for an analytic sample of 289 participants (See Figure 1).

Measures

Patient sociodemographic and clinical characteristics, extracted from the YWS, included

age at diagnosis, stage at diagnosis (determined through medical record and pathology review)

and treatment (surgery, radiation, and/or chemotherapy). Time since diagnosis was recorded as

the number of months between the first pathology report indicating cancer and the return date of

the partner’s survey.

The partner survey included the following:

Partner socio-demographic characteristics assessed current age, education level,

race/ethnicity, gender (male, female), current work status (full-time, part time,

unemployed, on leave of absence, student, homemaker, disabled), number of months/years

in the partnered relationship, and parenting status (yes/no with number and ages of

children).

Perceived social support was assessed by the Medical Outcomes Survey (MOS)- Social

Support Survey (Sherbourne & Stewart, 1991). Partners were asked to think back to the

time after their partner’s diagnosis, and rate how often various kinds of support were

available if needed. Items were rated on a 5-point Likert scale (1 = none of the time to 5 =

all of the time) across four domains of support: emotional/informational, tangible,

affectionate, and positive social interaction. Multi-trait scaling analyses have supported the

dimensionality of the four support scales and the construction of an overall functional

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social support index. Construct validity, reliability ( > 0.91) and stability over time have

also been reported (Sherbourne & Stewart, 1991).

Current caregiver quality of life was determined through the Caregiver QOL Index-Cancer

(CQOLC), a self-administered rating scale (Weitzner, Jacobsen, Wagner, Friedland, &

Cox, 1999) designed to assess cancer caregiver’s mental and emotional burden, life

disruption, positive adaptation and financial concerns. The CQOLC consists of 35 items

rated on a 5-point Likert scale (0 = not at all to 4 = very much) summed to generate a total

score, with higher scores indicating lower quality of life. Internal consistency is calculated

at 0.91, test-retest correlation is 0.95, and moderate correlations with overall mental health

and low corrections with overall physical health have been demonstrated (Weitzner et al.,

1999).

Partner coping was measured using the 28-item Brief COPE (Carver, 1997), asking

partners to think back to the time after diagnosis, regarding different coping behaviors and

thoughts they may have had. Responses for each item are on a 4-point Likert scale (0 = I

didn’t do this at all to 3 = I did this a lot). Items tend to be either generally adaptive or

maladaptive, though may be context or situation dependent (Carver, 1997). The Adaptive

Coping subscale comprises active coping, planning, positive reframing, acceptance, humor,

religion, using emotional support, and using instrumental support (16 items), and the

Maladaptive Coping subscale includes self-distraction, denial, venting, substance use,

behavioral disengagement, and self-blame (12 items). Internal reliabilities for the subscales

range from = 0.57-0.90 (Carver, 1997), and similar results have been found with a

population of parents of children with autism spectrum disorders (= 0.54-0.93) (Benson,

2010).

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Current perceived financial security was assessed through a single item: How would you

describe your household’s financial situation right now? The categories included 1)

enough money for special things, 2) little spare money for special things, 3) money to pay

bills only because cut back, and 4) difficulty paying bills (Gierisch, Earp, Brewer, &

Rimer, 2010). Responses were dichotomized for analysis into financial security (1) or

insecurity (2-4).

Parenting concerns in the time after their partner’s diagnosis was assessed with a partner-

adapted version of the Parenting Concerns Questionnaire (PCQ), which measures the

distress specifically associated with parenting in adult cancer patients (Muriel et al., 2012).

The original PCQ has 15 items, measured on a 5-point Likert scale (1 = not at all concerned

to 5 = extremely concerned). Internal consistency (0.83) and moderate correlations are

found with the constructs of interest. Responses were dichotomized for analysis into not

concerned (1-2) or concerned (3-5). Instrument adaptation was done in collaboration with

the instrument developers (3 items were excluded as not adaptable to partners).

Relationship strain in the past month was measured by two items extracted from the marital

subscale of the Cancer Rehabilitation and Evaluation System (CARES) (Ganz, Schag, Lee,

& Sim, 1992; Schag, Ganz, & Heinrich, 1991): “My partner and I have difficulty talking

about our feelings”, and “My partner and I are not getting along as well as we usually do.”

Items were rated from 0 = not at all to 4 = very much. Responses for each item were

dichotomized for analysis into not strained (0-1) or strained (2-4). A participant

rating “strained” for either item was categorized as “strained”; if rated “not strained” for

both items, the item was categorized as “not strained.”

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Participants were asked if currently sexually active, and overall sexual relationship

satisfaction was measured by the GMSEX, the Global Measure of Sexual Satisfaction

(GMSEX) (Lawrance & Byers, 1992). The GMSEX is comprised of five 7-point

dimensions. Ratings are summed such that possible scores range from 5 to 35, with higher

scores indicating greater sexual satisfaction. In a study comparing several sexual

satisfaction scales and a single-item measure of sexual satisfaction, GMSEX demonstrated

the strongest psychometric properties (Mark, Herbenick, Fortenberry, Sanders, & Reece,

2014).

Anxiety and depression was assessed by the 14-item Hospital Anxiety and Depression

Scale (HADS), a symptom-screening questionnaire (Zigmond & Snaith, 1983). For each

item, participants were asked to choose the response (four-point response scale varies) that

best described how they were feeling in the past week. Each subscale’s score ranges from

0-21 (normal < 8, possible case/borderline 8-10, probable case/clinical 11+). The best

trade-off between sensitivity and specificity has been found to be achieved using a subscale

cut-off point of 8 or above for identifying “cases”; reliability across the subscales has been

found to range from = 0.67-0.93 (Bjelland, Dahl, Haug, & Neckelmann, 2002).

Statistical analysis

Frequencies, percentages, means, and medians were calculated as appropriate for

categorical and continuous covariates. The low prevalence of depression among participants

limited its inclusion as a dependent variable in analysis. Logistic regression was used to evaluate

factors associated with anxiety, defined as an anxiety subscale score > 8 on the Hospital Anxiety

and Depression Scale (HADS). Univariable logistic regression was used to assess the association

between anxiety (dependent variable) and the independent variables: socio-demographic factors

17

(patient and partner age, race/ethnicity, marital status, education, children), coping, caregiver

quality of life, social support, parenting concerns, financial security, relationship concerns, and

being sexually active. Variables significant at p < 0.20 in univariable analysis were included in a

multivariable model to identify independent predictors of anxiety. Analyses were conducted

using SAS Software, Version 9.4 (SAS Institute, Cary, NC).

Results

Table 1 depicts the characteristics of patients and partners. The median age of patients at

diagnosis was 36 years (range, 22-40), and the median time from the patient’s diagnosis to

survey of her partner was 58 months (range, 16-114). The median age of partners at time of

survey completion was 43 years (range, 27-65). Most respondents were male (98%), white

(92%), working full-time (94%), and college educated (78%). More than half of respondents

were partnered > 15 years (54%), and the majority were parenting children < 18 years old (74%).

Table 2 presents the prevalence of partners’ psychosocial concerns. Forty-two percent of

partners were categorized as having symptoms of anxiety (> 8 on HADS anxiety subscale), and

21% as having symptoms of depression (> 8 on HADS depression subscale). Parenting concerns

were reported by 36%, and among all participants, 32% identified relationship concerns.

Twenty-nine percent of partners identified some level of financial insecurity. Twenty percent of

partners reported not currently being sexually active; the mean sexual satisfaction summary score

(5-item GMSEX scale) for these partners was 15. Higher scores reflect higher levels of sexual

satisfaction, with a score range of 5-35. Of those reporting being sexually active, the mean

GMSEX score was 28. With respect to coping style, 44% were identified as having utilized

maladaptive coping strategies.

Aim Results from the regression analyses are included in Table 3. In the univariable analysis,

18

higher parenting concerns score (odds ratio [OR]= 1.04, 95% confidence interval [CI] = 1.00-

1.07), lower MOS social support score (OR= 0.99, 95% CI = 0.97-1.00), lower education level

(less than college graduate vs. college graduate) (OR= 0.42, 95% CI = 0.23-0.77), full-time work

status (vs. other employment options) (OR= 4.80, 95% CI= 1.05-21.91), and maladaptive coping

(vs. adaptive coping) (OR = 2.70, 95% CI= 1.57-4.63) were all significantly associated (p <

0.05) with anxiety. In multivariable analysis, only maladaptive coping and having less than a

college education remained significantly associated with anxiety. Race/ethnicity, age, breast

cancer stage, financial insecurity, relationship strain, sexually active status (yes/no), and sexual

satisfaction score were not significantly associated with anxiety in either analysis.

Discussion

To our knowledge, this study is unique in its focus on the partners of young breast cancer

survivors, their experience post-diagnosis and their mental health in survivorship. The results of

this study highlight that partners experience anxiety at levels warranting attention even several

years after their partner’s diagnosis. Our analysis found that partners who reported using

avoidant coping strategies during treatment had significantly higher levels of anxiety in the

survivorship phase compared to those reporting more adaptive behaviors during active treatment.

These findings are consistent with the conclusions of Dalton, Nelson, Brobst, Lindsay and

Friedman (2007) linking avoidant coping and more difficulties with partner adjustment to breast

cancer several months after diagnosis. In prior work, Lambert, Jones, Girgis and Lecathelinais

(2012) found that cancer caregivers reporting higher levels of anxiety or depression at 6-months

post-diagnosis generally retained these levels at 24 months, suggesting that this subset of

caregivers may not experience much relief from distress over time. Additionally, avoidant coping

and lower emotional/informational support at 6 months predicted continued higher anxiety or

19

depression over the first two years post-diagnosis (Lambert, Girgis, Lecathelinais, & Stacey,

2013). Although it is not possible to determine causality in a cross-sectional study, the strong

relationship of avoidant coping with anxiety demonstrated in the present analysis is not

surprising. Other studies have shown that avoidance and lower reliance on social support (both

factors in maladaptive coping) are associated with poorer psychological adjustment in caregivers

(Fitzell & Pakenham, 2010) and in breast cancer patients (Stanton, Danoff-Burg, & Huggins,

2002) in the first year after diagnosis.

Cancer-related concerns and their impact on individuals and relationships do not

necessarily end when treatment is over. The literature suggests that survivors diagnosed with

breast cancer at younger ages have significantly greater fear of recurrence and other cancer-

related worries compared with those aged 55 and older (Howard-Anderson et al., 2012; Ziner et

al., 2012). When patients’ supportive needs continue into the survivorship phase, caregivers have

been found to experience greater anxiety or depressed mood (Kim & Given, 2008; van Ryn et

al., 2011). Other studies have demonstrated that higher levels of emotional distress among

patients and continued disruption to usual routines predict greater partner distress (Pitceathly &

Maguire, 2003). Such ongoing worries, fears, and other cancer-related stressors have been linked

with disengaging patterns of communication between breast cancer survivors and their partners

(Hodgson, Shields, & Rousseau, 2003). Disengagement is associated with generally maladaptive

coping and less effective adjustment to significant stressors (Kim & Carver, 2007). It is possible

that partners who have coped during treatment with more maladaptive behaviors such as

avoidance or behavioral disengagement may continue to use these same strategies while dealing

with post-treatment cancer-related stress.

20

Certain psychosocial factors, such as social support, parenting, and relationship strain,

were not robustly associated with anxiety in this analysis. More than 30% of partners, however,

identified some strain in aspects of their relationship with the patient; that is, not getting along as

well as they usually do or having difficulty talking about their feelings with each other. Prior

research has shown that common issues among couples coping with cancer include the tendency

for partners to avoid or withdraw from discussion of concerns, fears, and other stressors (S. L.

Manne, Ostroff, Winkel, Grana, & Fox, 2005). Others may cope by criticizing the patient’s

coping behavior or attempting to offer solutions when a feelings-based response is actually

desired, thereby potentially increasing disconnection (Baucom et al., 2005). These partner

behaviors are often linked to a misplaced wish to protect the patient, to limit their own emotional

pain, or a desire to avoid conflict (S. L. Manne et al., 2005). Twenty percent of partners in our

study also reported not being sexually active. Sexual problems (or dysfunction) have been found

to persist years after diagnosis with breast cancer (Ganz et al., 2002). These findings highlight

another quality of life impact of breast cancer on women and their partners, and underscore the

importance of addressing the consequences of treatment on sexuality and intimate relationships

prior to and during treatment, as well as into survivorship.

Financial stress was also relatively common, with nearly 30% of young partners reporting

some level of financial insecurity. Partners may struggle to maintain adequate employment and

balance attention to their job while also providing support to their spouse and family (van Ryn et

al., 2011). Previous research has found that while some caregivers have adequate personal,

social, and economic resources, others have very few (Printz, 2011). One particular personal

resource, education, was revealed as noteworthy in the current study, given that less education

was tied to higher levels of anxiety. The importance of education and informational support in

21

adjustment to cancer has been well described (Wilson et al., 2012), and lack of awareness or

barriers to understanding may affect coping and adaptation in the transition to survivorship. This

finding is also consistent with results suggesting lower socioeconomic status as a predictor of

partner psychological stress and poor adjustment (Kim & Carver, 2007). Education level may be

associated with fewer financial resources, less employment flexibility (e.g., paid leave, flexible

hours), and greater distress. There is also the potential for education level to impact access to

informational and supportive resources, including communication with the health care team. This

possibility is consistent with findings from Lambert et al (2012) that lower emotional and

informational support at 6 months predicted continued higher anxiety or depression over the first

two years after diagnosis. Baucom et al (2012) suggest one factor in the variability in how

partners cope may be due to feeling “ill equipped, unsure, and helpless” to meet the demands of

illness on themselves and their family. In the unique situation of breast cancer in the family,

typical strategies for dealing with stress may be less effective, with possible adverse impact over

time. While these issues may be relevant for any partner dealing with cancer, it is also important

to note the potential impact of gender on behavior given this study’s nearly all-male analytical

sample. Addressing male gender socialization and gender-sensitive issues (e.g., emotional

expression, help-seeking) was not a focus of this study, but the role of gender in partner

adjustment to illness may be a valuable consideration in future research.

Limitations

The findings of this study, while expanding survivorship research to include a focus on

partners of young women, also need to be considered within the context of certain limitations.

First, the design of the study was cross-sectional, thus the direction of effects and causality

cannot be determined. Partners’ pre-cancer level of mental health was unknown and may be a

22

factor that affects adjustment to the experience during and after treatment. For example, partners

dealing with anxiety prior to their spouse’s diagnosis may perceive the experience more

negatively, tend to cope with maladaptive behaviors, and continue to report anxiety after cancer

treatment has ended. The current study examined select potential contributors to partners’

anxiety; other contributory factors could be present that we did not measure. Partners’ distress

may be related to the way survivors cope and their level of need. The current analysis did not

link the partners to their survivors’ functional and emotional status, thus it was not possible to

determine what role these may have played in the mental health of partners.

Generalizability is limited by the race and socio-economic background of the study

population. The demographics of the men who participated were generally similar to the women

in the YWS: largely white, financially secure, college educated. It was not possible to explore the

experiences of same-sex partners given the very small number of these participants. Research

with more diverse subjects and lesbian couples is needed and may reveal different outcomes and

concerns.

Retrospective data collection from partners in survivorship recalling aspects of their

experience post-diagnosis is another limitation. Although the response rate reached 66%, the

final analytical sample, along with the impact of missing data, resulted in limited power to

measure less prevalent psychosocial outcomes (e.g., depression). There is a potential for

selection bias if women experiencing more personal or relationship challenges did not grant

permission to invite their partner, or if partners with these characteristics declined participation.

This study largely used standard measures that have positive psychometric attributes, but some

measures have not been validated in this population (e.g., parenting concerns).

Conclusions

23

The results of this study have potentially valuable implications for young breast cancer

survivors and their partners. First, there needs to be heightened awareness to intervene earlier

with partners identified as having coping challenges and other stressors such as parenting

concerns and low perceived social support. Focused intervention may be needed to support these

partners either individually or as part of a couple adjusting to serious illness. Survivors may

benefit from attention to partners’ needs, which if not addressed, may have negative impact on

their own adjustment to illness. Likewise, if a survivor is reporting higher levels of distress,

potential targets for intervention might focus not only on the patient, but also on the

partner/couple. To the extent that coping and distress have interdependence, a skills-building

approach that addresses unsupportive behaviors (some of which may be unintentional), increases

realistic expectations, and bolsters constructive communication will enhance adjustment for the

patient and partner as a couple, as well as individually. The association between lower

educational attainment and higher levels of anxiety may also inform components of intervention

to ensure all partners have adequate information, understanding, and access to supportive

resources.

The findings from this study add to understanding of the impact of cancer on partners of

breast cancer survivors and have programmatic and intervention implications. Mental health and

unmet cancer-related needs should be identified early and reassessed at nodal points of care,

including transition to survivorship and longer term follow up. Interventions aimed at

constructive coping strategies for partners, and ensuring all partners have information about, and

access to, supportive resources will likely benefit both partners and the young breast cancer

survivors. There is also opportunity to build upon this study with longitudinal research aimed at

uncovering additional insights into factors that affect variations in partner stress, vulnerabilities,

24

and mental health over time. Such research has the potential to foster further appropriately

designed and targeted patient and family-centered psychosocial care.

25

Figure 1. Flowchart

N=494YW granted permission, surveys sent to partners

N=18Survey incomplete

N=289 Analytical sample

N=187Not eligible, n=3**

Non-responders, n=158Declined, n=1

Stage 4/active tx, n=25

N=307 Surveys completed

N=224Not eligible, n=18*


N=718YW asked for permission

to invite partners

*Not partnered during treatment (9), not partnered at time of survey (7), patient deceased (2) ** Not partnered during treatment (3)

26

Table 1. Patient and partner characteristics (N=289)

Median (range)

Partner age at survey (years) 43 (27-65)

Patient age at diagnosis (years) 36 (22-40)

Time from BC diagnosis to survey completion (months) 58 (16-114)

Length of partnership (years) 15+ (2-15+)

Partner Characteristics N (%) Missing N

Gender (male) 284 (98) 0

White non-Hispanic 248 (92) 18

Working full-time 257 (94) 17

College educated 213 (78) 17

Parenting children < 18 years old 208 (74) 7

BC Stage N (%) 4

0 23 (8)

1 99 (35)

2 125 (44)

3 38 (13)

BC, breast cancer

27

Table 2. Prevalence of psychosocial concerns in partners (N=289)

Concern N (%) Missing N

Anxiety (HADS subscore ≥8) 106 (42) 39

Depression (HADS subscore ≥8) 47 (21) 60

Parenting concerns (N=208 with children) 74 (36) 4

Relationship strain 89 (32) 12

Financial insecurity 79 (29) 17

Not sexually active 55 (20) 12

Maladaptive coping style 120 (44) 19

Social support (MOS-SS summary score) Median (range)

67 (19-95)

15

HADS, Hospital Anxiety and Depression Scale; MOS-SS, Medical Outcomes Survey-Social Support Survey

28

Table 3. Predictors of anxiety in partners

Variable Univariable p Multivariable p

OR (95% CI) OR (95% CI)

Months from BC diagnosis to survey completion

0.99 (0.98-1.00) 0.11

Financial security (ref=at least some financial insecurity)

0.59 (0.34-1.03) 0.06

Full-time employment (ref=other than full-time employment)

4.80 (1.05-21.91) 0.04

College graduate (ref=less than college graduate)

0.42 (0.23-0.77) 0.005 0.48 (0.26-0.90) 0.02

Maladaptive coping (ref=adaptive coping)

2.70 (1.57-4.63) 0.0003 2.39 (1.38-4.15) 0.002

Children 1.64 (0.92-2.93) 0.10

Parenting concern 1.04 (1.00-1.07) 0.05

Social support 0.99 (0.97-1.00) 0.05

YW BC Stage (ref=3)

0 2.13 (0.68-6.65) 0.19

1 1.49 (0.66-3.36) 0.34

2 1.40 (0.63-3.10) 0.41

BC, breast cancer; OR, odds ratio; CI, confidence interval; YW, young women’s

29

Psychosocial issues and outcomes of parenting partners of young breast cancer patients

A significant number of young women are diagnosed with breast cancer every year.

Among the 252,710 estimated new invasive breast cancer cases in the U.S. in 2017,

approximately 11,160 are among women under the age of 40 (Cancer Facts and Figures -

Surveillance and Health Services Research, 2017). The diagnosis and treatment of cancer have

significant impact on both patients and their families (Osborn, 2007). When cancer is diagnosed

at a younger age, it is also a time when families are more likely to have school-aged and other

children at home. Families with minor children may be particularly vulnerable to emotional and

practical stressors while managing the complexity of cancer diagnosis and treatment (Muriel et

al., 2012; Schmitt et al., 2008). For younger women who are parenting, cancer poses particular

additional challenges for them and for their co-parenting partners. Prior studies have

underscored the central role of family caregivers, particularly spouses, in providing emotional

and practical support for cancer patients (Kim & Given, 2008), yet little attention has been given

to the experience of younger partners. In the setting of having both a partner with cancer and

minor children, the stress of the well parent related to caregiving demands may be amplified

(Gotze, Ernst, Brahler, Romer, & von Klitzing, 2015). Partners may assume new or expanded

roles in the family, and find themselves shouldering additional responsibilities as the co-parent of

minor children. These transitions may also challenge partners with unanticipated or unfamiliar

practical and emotional needs of their children, while also managing work demands, coping with

their own reactions to cancer, and providing critical support to the patient.

How each individual parent (patient and spouse/partner) functions affects the experience

and wellbeing of children as they too cope with cancer in the family (Huizinga et al., 2011).

Prior work in this area suggests that children may experience elevated distress with a range of

30

emotional, cognitive, social, and behavioral impacts (Barkmann, Romer, Watson, & Schulte-

Markwort, 2007; Osborn, 2007; Visser, Huizinga, van der Graaf, Hoekstra, & Hoekstra-

Weebers, 2004). Other studies have identified the impact of parental illness on child distress

through its effect on parenting behaviors (Thastum et al., 2009; Vannatta, Ramsey, Noll, &

Gerhardt, 2010). Less effective parenting has been found to be associated with poorer child

outcomes, especially among adolescents (Huizinga et al., 2011). More specifically, Lewis and

Darby (2004) reported that adolescents with poor relationships with an ill mother and a well

father had greater anxiety compared with those with a positive relationship with one or both

parents (Lewis & Darby, 2004).

These concerns and outcomes related to parenting with cancer in the family highlight the

clinical importance of developing better understanding of the psychosocial issues for parenting

partners and their perceived quality of life. Quality of life is a multidimensional construct that

includes physical, mental, emotional, and social domains, all of which can be affected in the

setting of cancer (Kim & Given, 2008). It is essential then to help partners feel supported and

prepared, address their needs as co-parents, and promote their own physical and mental health.

In addition, there is value in identifying those partners and families most in need of support, with

the goal of proactively assessing and addressing concerns. With appropriate intervention,

partners have the potential to more effectively assume their critical role in helping patients and

their children manage the impact of cancer.

Study Aims

The experience of partners who are caregivers to younger breast cancer patients and also

parenting minor children through cancer has been given limited attention. This study focused on

identifying socio-demographic, cancer-related, and psychosocial variables that may be associated

31

with parenting partners’ quality of life, focusing on factors that may be amenable to intervention.

Specifically, the current exploratory study sought to examine mental health (anxiety and

depression), parenting concerns, coping style, perceived social support, post-traumatic growth,

and overall quality of life of these partners.

Methods

Study participants

The participants in this study were the partners of women enrolled in the Helping

Ourselves, Helping Others: The Young Women’s Breast Cancer Study (YWS), a multi-site

prospective cohort study of young women with breast cancer established to explore their

biological, medical, psychosocial, and quality of life issues (NCT01468246). Eligibility

requirements for the YWS included diagnosis of breast cancer at or under 40 years of age and

ability to speak English. For simplicity, the term “partner” is used to refer to the women’s spouse

or self-defined significant partnered relationship. Relationship status was determined based on

whether women self-reported being married or in a partnered relationship on the most recent

YWS survey they had completed. The institutional review boards of participating sites approved

the partner study as an amendment to the YWS protocol. A letter was mailed to 718 partnered

women that described the research purpose and requested permission to contact their partner and

for their partner’s contact information. An invitation, including the elements of informed

consent (a waiver of documentation of consent was approved), was sent to 494 partners. An

online survey (using RedCap, a secure database platform) was emailed to respondents, with a

paper version available for participating partners who did not have access to, or preferred not to

use, the online method. Partners were asked to complete the survey without discussion with the

patient; 332 surveys were completed, for a response rate of 67%. Here we report on survey

32

findings from 219 respondent partners who reported parenting at the time of their spouses’

diagnosis (See Figure 1).

Measures

Patient sociodemographic and clinical characteristics extracted from the YWS included age

at diagnosis and stage at diagnosis (determined through medical record and pathology review).

Time since diagnosis was recorded as the number of months between the first pathology report

indicating cancer and the return date of the partner’s survey.


Partner sociodemographic characteristics assessed included current age, education level,

race/ethnicity, gender (male, female), current work status (full-time, part- time,

unemployed, on leave of absence, student, homemaker, disabled), number of months/years

in the partnered relationship, and parenting status (yes/no with number and ages of children

at diagnosis).

Perceived social support after diagnosis was assessed by the 19-item Medical Outcomes

Survey (MOS)- Social Support Survey (Sherbourne & Stewart, 1991). Thinking back to

the time after diagnosis, partners were asked to rate how often various kinds of support

were available if needed. Items were rated on a 5-point Likert scale (1 = none of the time

to 5 = all of the time) across four domains of support: emotional/informational, tangible,

affectionate, and positive social interaction. Multi-trait scaling analyses have supported the

dimensionality of the four support scales and the construction of an overall functional

social support index. Construct validity has been supported for these measures, as well as

reliability ( > .91) and stability over time (Sherbourne & Stewart, 1991).

Quality of life perceived as impacted since cancer diagnosis was determined through the

33

Caregiver QOL Index-Cancer (CQOLC), a self-administered rating scale (Weitzner et al.,

1999) designed to assess cancer caregiver’s mental and emotional burden, life disruption,

positive adaptation and financial concerns. The CQOLC consists of 35 items rated on a 5-

point Likert scale (0 = not at all to 4 = very much) summed to generate a total score, with

higher scores indicating lower quality of life. Internal consistency is calculated at 0.91,

test-retest correlation is 0.95, and moderate correlations with overall mental health and low

corrections with overall physical health have been demonstrated (Weitzner et al., 1999).

Partner coping after diagnosis was measured using the Brief COPE (Carver, 1997) and

asked partners to identify their different coping behaviors and thoughts in response to

breast cancer diagnosis. The Brief COPE comprises 14 subscales of two items each.

Responses for each item are on a 4-point Likert scale (0 = I didn’t do this at all to 3 = I did

this a lot). Items tend to be either generally adaptive or maladaptive, though may be

context or situation dependent (Carver, 1997). The Adaptive Coping subscale comprises

active coping, planning, positive reframing, acceptance, humor, religion, using emotional

support, and using instrumental support (16 items), and the Maladaptive Coping subscale

includes self-distraction, denial, venting, substance use, behavioral disengagement, and

self-blame (12 items). Internal reliabilities for the subscales range from = 0.57-0.90

(Carver, 1997), and similar results have been found with a population of parents of children

with autism spectrum disorders (= 0.54-0.93) (Benson, 2010).

Perceived financial security was assessed through a single item: How would you describe

your household’s financial situation right now? The categories included: 1) enough money

for special things, 2) little spare money for special things, 3) money to pay bills only

because cut back, 4) difficulty paying bills (Gierisch et al., 2010). Responses were

34

dichotomized for analysis into financial security (1) or insecurity (2-4).

Parenting concerns at the time of partner’s cancer diagnosis were assessed with a partner-

adapted version of the Parenting Concerns Questionnaire (PCQ), which measures the

distress specifically associated with parenting in adult cancer patients not fully identified

by standardized tools for general distress, anxiety, or depression (Muriel et al., 2012). The

original PCQ has 15 items, measured on a 5-point Likert scale (1 = not at all concerned to 5

= extremely concerned). Internal consistency is 0.83 and moderate correlations are found

with the constructs of interest. Responses were averaged, with higher scores indicating

greater parenting concerns, and dichotomized for prevalence analysis into not concerned

(1-2) or concerned (3-5). Instrument adaptation was done in collaboration with the

instrument developers to fit this study focused on partners. Two subscales were retained

(emotional and practical); the three items of the third subscale were excluded as not

adaptable to partners.


subscale of the Cancer Rehabilitation and Evaluation System (CARES) (Ganz et al., 1992;

Schag et al., 1991): “My partner and I have difficulty talking about our feelings”, and “My

partner and I are not getting along as well as we usually do.” Items were rated from 0 = not

at all to 4 = very much. Responses for each item were dichotomized for prevalence

analysis into not strained (0-1) or strained (2-4). A participant rating “strained” for either

item was categorized as “strained”; if rated “not strained” for both items, the item was

categorized as “not strained.”

Participants were asked if currently sexually active, and overall sexual relationship


35


dimensions: good–bad, pleasant–unpleasant, positive–negative, satisfying–unsatisfying,

valuable–worthless. Ratings are summed such that possible scores range from 5 to 35, with

higher scores indicating greater sexual satisfaction. In a study comparing several sexual


the strongest psychometric properties/attributes (Mark et al., 2014).

Anxiety and depression were assessed by the 14-item Hospital Anxiety and Depression







found to range from = 0.67-0.93 (Bjelland et al., 2002).

The Posttraumatic Growth Inventory – Short Form (PTGI-SF) was used to assess the

degree to which partners, as a result of the crisis of cancer in their life, reported possible

areas of growth and change (e.g., I changed my priorities about what is important in life)

(Cann et al., 2010). This 10-item self-report questionnaire reduces the length of the original

PTGI. The scale contains two items for each the five subscales of the original PTGI.

Responses are made on a 6-point scale (0 = I did not experience this change, to 5 = I

experienced this change to a very great degree). It is considered psychometrically sound,

with reliability in the range of .90 across a range of sample populations (Cann et al., 2010).

Statistical analysis

36

Frequencies, percentages, means, and medians were calculated as appropriate for

categorical and continuous covariates. Linear regression was used to evaluate factors associated

with lower quality of life (higher scores on the CQOLC). Univariable linear regression was used

to assess the association between quality of life (dependent variable) and the following

independent variables: socio-demographic factors (partner age, patient age at diagnosis,

race/ethnicity, marital status, education, employment, relationship duration, number of children,

age of youngest child at time of diagnosis), cancer-related factors (breast cancer stage, time since

diagnosis), and psycho-social factors (coping style, parenting concerns, financial security,

anxiety, depression, post-traumatic growth, social support, sexual activity [yes/no], sexual

satisfaction). Variables significant at p < .20 were included in a multivariable linear regression

model to identify independent predictors of partner quality of life. Analyses were conducted

using SAS Software, Version 9.4 (SAS Institute, Cary, NC).

Results

The demographic characteristics of parenting partners are shown in Table 1. The median

time from the patient’s diagnosis to survey of her partner was 60 months (range, 9-114). The

majority of parenting partners (94%) had been in their partnered relationship for at least 10 years.

All parenting partners in this analysis were male. The median age of parenting partners at the

time of survey completion was 44 years (range, 32-65). The majority of those parenting were

white (94%) and employed full-time (96%); 77% were college educated. Family size (range, 1-

6) included 22% with one child, 54% with two, 19% with three, and 5% with four or greater.

The median number of children was two. At the time of diagnosis, the oldest children ranged in

age from less than 1 year to 26 years old, with a median age of 6.9 years, and a mean of 7.3

years. The median age of patients at diagnosis was 37 years (range, 26-40). Six partners did not

37

provide birthdates for the number of children they reported, so these children’s ages could not be

included. The number of women diagnosed with breast cancer Stage 0-4 were as follows: Stage

0 (17, 7.9%), Stage 1 (74, 34.3%), Stage 2 (90, 41.7%), Stage 3 (27, 12.5%), and Stage 4 (8,

3.7%).

Table 2 depicts the prevalence of parenting partners psychosocial concerns and issues.

Forty-four percent reported symptoms of anxiety (> 8 on the HADS anxiety subscale), and 19%

reported symptoms of depression (> 8 on the HADS depression subscale). Financial strain was

reported by 30%, and 35% of all parenting partners were experiencing relationship strain. The

quality of life mean score was 42.4 with higher score indicating lower quality of life (range, 11-

116; SD, 17.5). Parenting concerns were reported by 46%, with a mean score of 28.2 (range, 12-

53; SD, 9.0), indicating mild to moderate concerns. The practical subscale included questions

such as concerns about the impact on children’s daily routines or on the time patients spent with

children, while the emotional subscale included concerns such as about children’s worry about

the patient dying and children’s distress related to parents talking about the illness. The scores of

the practical (mean, 11.2; range, 5-25; SD 4.2) and emotional (mean, 10.9; range, 5-22; SD, 4.4)

subscales were also in the mild to moderate range. The social support scale mean score was 65.9

(range, 19-95; SD, 19.65) with higher scores indicating greater levels of support. Maladaptive

coping style was reported by 54%. These behaviors included avoidance, denial, substance use,

and self-criticism.

Twenty-one percent indicated they were not sexually active. All partners (those sexually

active and not sexually active) were asked to complete the sexual satisfaction scale, and scores

ranged from 5 to a high of 35 (indicating more satisfaction), with a mean score of 25.1 (SD, 8.3).

The post-traumatic growth short-form inventory mean score was 22 (range, 3-48; SD, 10.2).

38

Higher scores indicate respondents reported experiencing greater levels of positive change as a

result of their partners’ cancer diagnosis.

Table 3 shows the results from the univariable and multivariable linear regression

analyses. In the univariable analysis, greater parenting concerns, maladaptive coping style,

financial strain, partner younger age, HADS depression subscale score > 8, HADS anxiety

subscale score > 8, lower post-traumatic growth score, lower MOS social support score, not

sexually active, and lower GMSEX sexual satisfaction score were all significantly associated (p

< .05) with lower caregiver quality of life. Race/ethnicity, patient age at diagnosis, time since

diagnosis, breast cancer stage, education, marital status, number of children, age of youngest

child, and relationship duration were not significantly associated at p < .05 with quality of life in

univariable analysis; variables significant at p < .20 were included in the multivariable linear

regression model.

In multivariable analysis, younger partner age, higher parenting concerns score, HADS

anxiety subscale score > 8, lower post-traumatic growth score, lower MOS social support score,

and lower GMSEX sexual satisfaction score were all significantly associated (p < .05) with

lower caregiver quality of life. Time from diagnosis, breast cancer stage, financial strain,

employment, age of youngest child, HADS depression subscale score > 8, maladaptive coping,

and not sexually active were not significantly associated with quality of life in multivariable

analysis.

DiscussionLittle is known about the level of distress and quality of life of young cancer caregiver

partners who have minor children. This exploratory study specifically advances the current

literature on the experience of parenting partners of young women diagnosed with breast cancer.

Notably, the study findings revealed that a majority of partners have concerns about the impact

39

of cancer on their children, and greater parenting concerns were highly associated with lower

partner quality of life. The two subscales of the parenting concerns questionnaire (PCQ) indicate

concerns were drawn from both the practical (e.g., on children’s daily routines, on time patient

spent with children) and the emotional domains (e.g., worry about patient dying, upset related to

parents talking about illness). These results are consistent with young breast cancer survivors’

reports of parenting challenges and children’s adjustment as prominent and priority concerns

(Connell, Patterson, & Newman, 2006; Semple & McCance, 2010). While children can be a

source of great joy and support, adding significant comfort and meaning over the course of

cancer care, the responsibility for their diverse needs in the context of cancer may heighten

distress and affect quality of life in this population (Baucom et al., 2005; Bloom, Stewart, Chang,

& Banks, 2004; Muriel et al., 2012). Common themes from research on the parental experience

of cancer highlight some of the specific struggles, including how best to communicate with

children, how to be a “good parent” under these circumstances, and the challenge of maintaining

the routines from which children derive comfort and security (Semple & McCance, 2010).

While age and number of children were not significantly associated with partner quality

of life, psychosocial factors had a more robust association, including the finding that lower

caregiver quality of life was linked to clinically relevant levels of anxiety in these co-parents. In

a longitudinal study of cancer patients, their children and partners, Gotze et al (2015) also

identified higher levels of anxiety as having a significant impact on partners’ quality of life.

Further, Huizinga et al (2011) note that in the setting of cancer, the healthy parent can serve a

significantly protective function for the wellbeing of children. If the healthy parent, however, is

overwhelmed or struggling to cope with the partner’s cancer, while also attending to the day-to-

day needs of children and family, he or she may not have the capacity to provide the level of

40

emotional support their children or the patient need (Thastum et al., 2009). In a systematic

review of studies examining children’s psychosocial adjustment when a parent has cancer,

specific illness-related factors (e.g., stage, treatment, time since diagnosis), with the exception of

worsening disease status, were not identified as related to lower adjustment (Krattenmacher et

al., 2012). Better family functioning or family environment, however, was positively associated

with greater adjustment in children. In other research on children’s functioning when a parent

has cancer, higher levels of anxiety among both ill and well parents were associated with greater

symptoms of stress among adolescents (Huizinga, Visser, van der Graaf, Hoekstra, & Hoekstra-

Weebers, 2005).

Other psychosocial factors among partners, such as depression and maladaptive coping,

were not robustly associated with quality of life in this analysis, but deserve attention.

Depression was not a significant independent factor in quality of life, yet almost 20% of partners

reported clinically relevant symptoms of depression. Prior work exploring family functioning

among cancer patients, partners, and children has revealed a significant association of parental

depression with impairment in family functioning (Schmitt et al., 2008). In addition, these

authors identified that among parenting ill and well partners, fathers perceived greater

impairment in family functioning including individual roles (e.g., provision of support, managing

the family, sexual intimacy) and communication. Parental factors such as depression have also

appeared to have negative impact on children’s psychosocial adjustment and wellbeing in the

setting of cancer (Krattenmacher et al., 2012).

Another finding to highlight was the substantial proportion of parenting partners that

identified using predominantly maladaptive coping behaviors in response to cancer-related

stressors. These behaviors included avoidance, denial, substance use, behavioral disengagement,

41

venting, and self-criticism. Although coping style was not retained as significantly associated

with quality of life in the multivariable analysis, the prevalence of this coping style strongly

suggests a point of potential intervention related not only to partners’ personal adjustment and

functioning as a partner, but also to how partners are functioning as parents in the setting of

cancer. Maladaptive behavioral and emotional coping efforts, as measured in this study, would

not be consistent with positive parental functioning in serious illness, such as open and direct

expression of feelings and active problem-solving skills (Schmitt et al., 2008). These types of

strategies for dealing with stress may be less effective in managing the demands of illness on

both partners and their families, with possible adverse impact over time. Fathers also tend to

perceive greater impairment in roles and communication than mothers (Schmitt et al., 2008).

Low ratings of patients’ and well partners’ parenting efficacy (i.e., confidence in one’s

capabilities to meet children’s needs), for example, have been associated with the highest levels

of concern about the impact of cancer on their children (Moore, Rauch, Baer, Pirl, & Muriel,

2015). Partners maladaptive coping efforts that include disengagement, denial, and other

“holding back” behaviors, may translate into less effective interactions with their children or co-

parent, and heighten stress in the already challenging environment of cancer. These types of

strategies may also result in less attention on addressing the emotional impact of cancer and

drive more intensive focus on accomplishing tasks and “getting through it” (Baucom et al., 2012;

Duggleby et al., 2015). Barriers to open communication in families are particularly important to

explore, as quality of communication has been identified as an important predictor of positive

family functioning (Huizinga et al., 2011; Osborn, 2007). Thastum, Johansen, Gubba, Olesen,

and Romer (2008) found in their qualitative study of children of parents with cancer that well

parents, particularly fathers, though more able to offer factual information, struggled to talk

42

about emotions with their children. When communication with the healthy parent was more

open, teenaged children also appeared to suffer from fewer mental health and other negative

outcomes (Huizinga et al., 2005). These findings emphasize the critical role the healthy parent

may have in providing some counterbalance for changes in a child’s relationship with an ill

parent and in promoting overall family functioning (Moore et al., 2015).

While these issues may be relevant for any partner dealing with cancer, it is also

important to note the potential impact of gender on behavior given this study’s all-male

analytical sample. Addressing male gender socialization and potentially gender-sensitive issues

(e.g., emotional expression, help-seeking) was not a focus of this study, but the role of partner

gender in adjustment to illness while parenting minor children may be a valuable consideration

in future research. The struggles identified in prior research of younger families with parenting

challenges such as communication with children, managing emotions, and how to balance

personal needs with those of children (Ares, Lebel, & Bielajew, 2014), underscore the value in

family-oriented approaches to psychosocial oncology care. It is also important to assess

parenting concerns, coping behaviors, and overall functioning in both patients and well-parent

partners, as successful interventions to improve adjustment in this setting may need to be

considered, at least to some extent, in the context of partner gender and potentially gender-

sensitive issues.

Several other findings should also be highlighted. Our results suggest that as the age of

partners decreased, overall quality of life was significantly more likely to be perceived

negatively. This finding is supported by prior studies indicating that younger age is associated

with lower quality of life among partners of cancer patients (Gotze et al., 2015). As with young

breast cancer patients, partners’ cancer experience is developmentally out of sync, coming at a

43

time when very few peers are confronted with this particular set of demands. In the setting of

parenting, younger partners may be more vulnerable to the stress of a life-altering experience

such as cancer, and may have had fewer experiences working through challenges as an

individual and as a couple.

Social support was also found to be significantly associated with parenting partners’

quality of life. Partners with lower perceived social support were found to have poorer quality of

life, which is consistent with other research identifying associations between greater quality of

life in partners reporting higher levels of social support (Gotze et al., 2015). Social support in

the setting of cancer has well-documented benefits and potential to be protective for mental

health, including opportunities to express thoughts, feelings, and needs as well as receive

practical assistance and emotional support (Hasson-Ohayon, Goldzweig, Braun, & Galinsky,

2010; Helgeson & Cohen, 1996). Factors such as low social support and higher anxiety may

impact important interpersonal behaviors that influence how a family copes with cancer,

however, longitudinal studies would be needed to delineate directionality of effects.

Given the importance of sexual activity in most partnered relationships (Wimberly et al.,

2005), it was not surprising to find that lower sexual satisfaction score (among all parenting

partners) was significantly associated with lower quality of life. Young women experience a

wide range of sexual functioning difficulties due to breast cancer (Baucom et al., 2005).

Additionally, young mothers with breast cancer have reported greater interference with sexual

intimacy (Ares et al., 2014), and more problems in their relationship with their partner (Avis et

al., 2004) than those without children. Although it is not possible to disentangle the impacts of

various factors in the present analysis, partners’ lower sexual satisfaction may create more

emotional distress, and affect their wellbeing and response to the stress of illness and the

44

demands of parenting. For example, if sexual dissatisfaction contributes negatively to the quality

of the partnered relationship (e.g., communication suffers) and to the partners’ overall

adjustment to the impact of illness, such difficulties may interfere indirectly with the partners’

capacity to provide needed emotional support for both the patient and their children.

The competing needs of children and employment, as well as financial concerns, may

place additional stress on the caregiver (Braun et al., 2007; Girgis, Lambert, Johnson, Waller, &

Currow, 2013). In our analysis, however, full time employment and financial strain were not

independently associated with reduced quality of life. Full-time employment may have a

protective function to some extent by providing a consistent level of income (and health

insurance in many families), lending some degree of normalcy and structure in a disrupted life

trajectory, and offering a potential source of emotional and social support (Gotze et al., 2015;

Kim, Baker, Spillers, & Wellisch, 2006).

The construct of post-traumatic growth is supported by a body of research investigating

the potential for an individual to develop a new beneficial (transformative) level of psychological

functioning and perspective in response to adversity (Calhoun & Tedeschi, 2006; Tedeschi &

Calhoun, 1996). Positive change has been identified most significantly in three main areas:

perception of self, relationships with others, and general philosophy of life (Cormio et al., 2014).

In the current study, higher post-traumatic growth scores were strongly associated with greater

quality of life. Previous research has suggested that caregivers of cancer patients experience

post-traumatic growth, and underscores the perspective that while cancer is associated with stress

and negative outcomes, personal growth is possible as well (S. Manne et al., 2004; Morris,

Shakespeare-Finch, & Scott, 2007; Zwahlen, Hagenbuch, Carley, Jenewein, & Buchi, 2010).

The elements of posttraumatic growth may be particularly relevant in the parenting context if the

45

experience of growth contributes positively to well partner adjustment and functioning (e.g.,

greater confidence in one’s ability to handle difficulties, greater sense of closeness to others).

Given the potentially protective role of the healthy parent (Huizinga et al., 2011; Visser et al.,

2004), such growth may serve to buffer stress and affect the overall family emotional

environment, including the wellbeing of children (Krattenmacher et al., 2012).

Limitations

The findings of this study, while expanding research with a focus on partners who are

parenting dependent children in the setting of cancer, also need to be considered within the

context of certain limitations. The study design was cross-sectional; thus, the direction of effects

and causality cannot be determined. Partners’ pre-cancer level of mental health, coping style,

and functioning within the family were unknown and may be factors that affect adjustment to the

experience and their perceptions of quality of life during and after treatment. For example,

partners experiencing parenting stress or dealing with mental health challenges prior to their

spouse’s diagnosis may perceive their post-diagnosis quality of life more negatively. The current

study examined select potential contributors to partners’ quality of life; other contributory factors

could be present that we did not measure. Partners’ distress may be related to the way patients

cope and their level of need. The current analysis did not link the partners to the patients’

functional and emotional status, thus it was not possible to determine what role these may have

played in the mental health and overall quality of life of their co-parenting partners.

Generalizability is limited by the race and socio-economic background of the study

population. The demographics of the men who participated were generally similar to the women

in the YWS: largely white, with the majority financially secure and college educated. Research

46

with more diverse subjects and lesbian couples is needed and may reveal different outcomes and

concerns.

Retrospective data collection from partners recalling certain aspects of their experience

after the time of diagnosis is another limitation. The length of time from diagnosis to survey

completion also varied among participants; the extent to which this may affect aspects of

partners’ retrospective reporting is not known. There is a potential for selection bias if women

experiencing more personal, relationship, or family challenges did not grant permission to invite

their partner, or if partners with these characteristics declined participation. Further, this study

largely used standard measures that have positive psychometric attributes, but some measures

have not been validated in this population (e.g., parenting concerns).

Conclusions

These findings highlight the psychosocial needs of partners dealing with cancer when

parenting minor children and the potential value of focused attention to address them.

Comprehensive oncology care should extend psychosocial care to those who may not be as

visible to the system, such as partners who are parenting and their children, especially when

there are indicators that quality of life is suffering. Recommendations include asking cancer

patients how their partners are managing, and if they have children at home, how they are coping

as a family. If attention is directed to partners and patients who are parenting with cancer, both

are likely to benefit from feelings of greater self-efficacy in their parenting roles. From a family

systems’ perspective, individuals with cancer in the family affect each other directly and

indirectly, and this mutuality of impact extends to how having children affects both parents and

the relationship of these parents with their children. Given the highlighted interdependence of

partners and patients in a variety of prior studies (Hagedoorn, Buunk, Kuijer, Wobbes, &

47

Sanderman, 2000), there may be reason, for example, to recommend supportive couples-based

interventions to help parenting partners communicate more openly with each other, address

partners’ psychosocial concerns, and enhance their capacity to effectively co-parent. An

important facet of care would be offering guidance on relevant parenting concerns such as

approaches for talking with children of different ages about cancer, understanding

developmentally-appropriate feelings and behavior, dealing with role changes and consistency in

communication, and strong encouragement to ask for support where and when needed.

Attention to the needs of parenting partners may have an important impact, not only for

partner mental health and quality of life, but also for children who are living with cancer, or a

recent history of cancer, in their family. Oncology care clinicians need to help partners talk

about their experience so they can be offered both practical and emotional support. This focus

may enhance the quality of individual, relationship, and family functioning. The goal is to reduce

the burden of illness and the strain on the parenting partner, while also strengthening and

expanding the resources for coping for the entire family.

48

Figure 1. Flowchart

N= 219Parenting at diagnosis



N= 314Partners (parenting + non-

parenting)



N=332 Surveys completed




N=718YW asked for permission to

invite partners

49

Table 1. Parenting partner characteristics (N=219)Median (range)

Partner age at survey (years) 44 (32-65)Time from patient diagnosis to survey completion (months) 60 (9-114)Age of children at diagnosis (years) 6.9 (<1-26)Number of children at diagnosis 2 (1-6)

N (%) Missing (n)

Gender (male) 219 (100) 0White non-Hispanic 200 (94) 6Working full time 204 (96) 6College educated 162 (77) 8Length of partnership > 10 years 204 (94) 1

50

Table 2. Prevalence of parenting partners psychosocial concerns (N=219)Concern N (%) Missing (n)Anxiety (HADS subscore > 8) 89 (44) 18Depression (HADS subscore > 8) 38 (19) 16Relationship strain 74 (35) 5Financial insecurity 63 (30) 6Not sexually active 45 (21) 5Maladaptive coping style 112 (54) 12

Mean (Range, SD)Parenting concerns 28.2 (12-53, 9.0) 6Post-traumatic growth 21.5 (3-48, 10.2) 16Caregiver quality of life 42.4 (11-116, 17.5) 29Sexual satisfaction 25.1 (5-35, 8.3) 0Social support 65.9 (19-95, 19.7) 11HADS, Hospital Anxiety and Depression Scale; SD, standard deviation

51

Table 3. Predictors of partner quality of lifeVariable Univariable*

Estimate (95% CI)p Multivariable**

Estimate (95% CI)p

Time from BC dx to partner survey (months)

-0.06 (-0.15, 0.02) 0.15

Financial security(ref = financial strain)

-7.42 (-12.61, 2.22) 0.005

Full-time employment(ref = < full-time employ)

-10.77(-23.39, 1.88)

0.09

Partner age (years) -0.49 (-0.97, -0.01) 0.05 -0.46(-0.80, -0.12)

0.008

Maladaptive coping(ref= adaptive coping)

9.43 (4.71, 14.15) 0.0001

Parenting concerns summary score

0.87 (0.64, 1.09) <0.0001 0.66 (0.48, 0.85) <0.0001

Age youngest child (years) -0.57 (-1.36, 0.23) 0.16HADS depression > 8(ref= depression <8)

14.50(8.60, 20.40)

<0.0001

HADS anxiety > 8(ref = anxiety <8)

14.71(10.23, 19.19)

<0.0001 12.20 (8.63, 15.77) <0.0001

PTGI summary score -0.35(-0.59, -0.11)

0.005 -0.34(-0.51, -0.17)

0.0002

MOS-SS summary score -0.34(-0.45, -0.24)

<0.0001 -0.19(-0.28, -0.10)

<0.0001

GMSEX summary score -0.58(-0.86, -0.30)

<0.0001 -0.43(-0.64, -0.23)

<0.0001

Sexually active(ref = not active)

-11.65(-17.28, -6.02)

<0.0001

Breast Cancer Stage 1(ref = Stage 0)

3.19(-5.77, 12.16)

0.48


1.37(-7.39, 10.12)

0.76


10.13(-0.26, 20.51)

0.06


3.71(-10.99, 18.42)

0.62

* identifies those variables entered into the multivariable linear regression model**identifies those variables significant at p < 0.05 in the multivariable linear regression model

52

BC, breast cancer; CI, confidence interval, dx, diagnosis; GMSEX, the Global Measure of Sexual Satisfaction; HADS, Hospital Anxiety and Depression Scale; MOS-SS, Medical Outcomes Survey-Social Support Survey; PTGI, Posttraumatic Growth Inventory.

53

An exploratory study of the psychosocial impact of caregiving on partners of young women with breast cancer in treatment

Cancer and cancer treatment has significant impact not only on those diagnosed, but also

on their family members. The short- and long-term life changes that cancer imposes may be

particularly challenging for those who are younger in age. For younger women diagnosed with

breast cancer, prior studies have indicated higher levels of distress and lower quality of life,

poorer adjustment to diagnosis and in long-term survivorship among this patient population

compared with those who are older (Baucom et al., 2005; Howard-Anderson et al., 2012).

Cancer diagnosis and early treatment may also have wide-ranging consequences for a woman’s

spouse or partner, who provide critical social, emotional, and practical support for the patient

during this time (Hasson-Ohayon et al., 2010).

Partners of young breast cancer patients are a unique population whose experiences and

needs are not well understood. These caregivers provide diverse supports throughout the process

of diagnosis and treatment and into survivorship. Given the age cohort, many also have

dependent children (age < 18) living at home. Caregiver support is often in high demand during

diagnosis and active treatment, and may be particularly in need when cancer is metastatic or has

recurred (Romito, Goldzweig, Cormio, Hagedoorn, & Andersen, 2013). In the former situation,

the patient will continue in treatment for the foreseeable future, and in the latter, treatment that

was considered over will be resumed. Due to advances in breast cancer treatment, women with

metastatic or recurrent disease have a greater likelihood of longer survival (Howard-Anderson et

al., 2012). The scope and intensity of the caregiving role under these circumstances may need to

be sustained or amplified, as active treatment continues into the future and the potential for

additional physical, emotional and practical support expands (Trudeau-Hern & Daneshpour,

54

2012; Ugalde, Krishnasamy, & Schofield, 2012; van Ryn et al., 2011). Other concerns such as

uncertainty about the future may rise into higher relief early in diagnosis as well as in the setting

of metastatic or recurrent disease. Partners are at risk to develop emotional, physical, and social

difficulties, with impact not only on their quality of life, but also on their capacity to provide

support and care for the patient (Northouse et al., 2012). In addition, the reality of a recurrence

or advanced cancer may trigger significant stress, and has been associated with increased

psychological and practical burden among caregivers (Grunfeld et al., 2004; Hasson-Ohayon et

al., 2010).

Prior qualitative research has reported on the well partners’ experience 1-3 years post

treatment, or has been related to a specific aspect of care, such as post-mastectomy reactions, but

few studies have focused on partners’ responses and concerns following initial diagnosis and

treatment (i.e., 13 or fewer months) (Zahlis & Lewis, 2010). Limited attention also has been

given to the particular experience of younger cancer caregiving partners. Spousal caregivers and

partners, in comparison with other caregivers (e.g., adult children, other relatives) may be more

vulnerable to negative physical and mental health effects during this time (S. Manne, Badr,

Zaider, Nelson, & Kissane, 2010). Earlier research has underscored the central role of spouses in

providing emotional and practical support for cancer patients during treatment, which may be

compromised if spouses are struggling themselves (Kim et al., 2008). Younger caregivers have

been found to have greater unmet needs and higher levels of distress compared with those who

are older (Kim et al., 2010). Additionally, the reactions and responses of partners who are

struggling through treatment may not only shape the adjustment of their partner with breast

cancer during this time, if not addressed, may lead to more difficulties in adjustment in both

55

short and longer-term follow up (Lambert et al., 2012; S. Manne et al., 2014; Stanton et al.,

2002).

Study Aims

This study was conducted as part of a larger cross-sectional survey of partners of young

women with breast cancer. The majority of the partners at the time of the survey were in the

survivorship phase of care with the patient. The purpose of the current study was to explore the

experience of partners when patients were in active treatment for breast cancer, or had very

recently completed treatment, with the intention of enhancing understanding of this subset of

partners’ psychosocial concerns and needs. The results of this study will help guide future

development of targeted interventions to support partners in their caregiving role.

Methods

Study participants

The participants in this study were the partners of women diagnosed with Stage 0-IV

breast cancer enrolled in the Helping Ourselves, Helping Others: The Young Women’s Breast

Cancer Study (YWS), a multi-site prospective cohort study established to explore biological,

medical, psychosocial, and quality of life issues in young women with breast cancer

(NCT01468246). Eligibility requirements for the YWS included diagnosis with breast cancer at

or under 40 years of age and ability to speak English. The term “partner” is used to refer to the

women’s spouse or self-defined significant partnered relationship. Relationship status was

determined based on women’s self-report (married or in a partnered relationship) on the most

recently completed YWS survey. The institutional review boards (IRB) of participating sites

approved the partner study as an amendment to the YWS protocol. A letter was mailed to 718

partnered women that described the research purpose and asked permission to contact their

56

partner. An invitation, including the elements of informed consent (a waiver of documentation

of consent was IRB-approved), was sent to 494 partners. An online survey (using RedCap, a

secure database platform) was emailed to respondents, with a paper version available for those

who did not have access to, or preferred not to use, the online method. Partners were asked to

complete the survey without discussion with the patient; 332 surveys were completed, for an

overall response rate of 67%. The current analysis focuses on a subset of respondent partners of

women who met the following criteria: time since diagnosis < 12 months; and/or Stage IV

disease (at diagnosis or in metastatic setting); and/or local recurrent disease < 12 months. These

criteria presumed the affected partner (i.e., woman with breast cancer) would be in active

treatment, or had very recently completed treatment. The final analytic sample fitting these

criteria included 25 participants (Figure 1).

Measures

Patient sociodemographic and clinical characteristics were extracted from the YWS and

included age at diagnosis and stage at diagnosis (determined through medical record and

pathology review). Time since diagnosis was recorded as the number of months between the first

pathology report indicating cancer and the return date of the partner’s survey.


Partner sociodemographic characteristics assessed on the survey included current age,

education level, race/ethnicity, gender (male, female), current work status (full-time, part-

time, unemployed, on leave of absence, student, homemaker, disabled), number of

months/years in the partnered relationship, and parenting status (yes/no, with number and

ages of children at the time of diagnosis).

Perceived social support was assessed by the 19-item Medical Outcomes Survey (MOS)-

57

Social Support Survey (Sherbourne & Stewart, 1991). Partners were asked to rate how

often various kinds of support would be available if needed. Items were rated on a 5-point

Likert scale (1 = none of the time to 5 = all of the time) across four domains of support:

emotional/informational, tangible, affectionate, and positive social interaction. Multi-trait

scaling analyses have supported the dimensionality of the four support scales and the

construction of an overall functional social support index. Construct validity has been

supported for these measures, as well as reliability ( > .91) and stability over time

(Sherbourne & Stewart, 1991).

Caregiver quality of life was determined through the Caregiver QOL Index-Cancer

(CQOLC), a self-administered 35 item rating scale (Weitzner et al., 1999) designed to

assess cancer caregiver’s mental and emotional burden, life disruption, positive adaptation

and financial concerns. Using an anchor of the past week and a 5-point Likert scale (0 =

not at all to 4 = very much), the CQOLC items are summed to generate a total score, with

higher scores indicating lower quality of life. Internal consistency is calculated at 0.91,

test-retest correlation is 0.95, and moderate correlations with overall mental health and low

corrections with overall physical health have been demonstrated (Weitzner et al., 1999).

Partner coping was measured using the Brief COPE (Carver, 1997), which asked partners

to rate how often they have used different coping behaviors/strategies. The Brief COPE

comprises 14 subscales of two items each. Responses for each item are on a 4-point Likert

scale (0 = I didn’t do this at all to 3 = I did this a lot). Items tend to be either generally

adaptive or maladaptive, though may be context or situation dependent (Carver, 1997).

The Adaptive Coping subscale comprises active coping, planning, positive reframing,

acceptance, humor, religion, using emotional support, and using instrumental support (16

58

items), and the Maladaptive Coping subscale includes self-distraction, denial, venting,

substance use, behavioral disengagement, and self-blame (12 items). Internal reliabilities

for the subscales range from = 0.57-0.90 (Carver, 1997), and similar results have been

found with a population of parents of children with autism spectrum disorders (= 0.54-

0.93) (Benson, 2010).

Perceived financial security was assessed through a single item: How would you describe

your household’s financial situation right now? The categories included: 1) enough money

for special things, 2) little spare money for special things, 3) money to pay bills only

because cut back, 4) difficulty paying bills (Gierisch et al., 2010). Responses were

dichotomized for analysis into financial security (1) or insecurity (2-4).

Parenting concerns in the past month were assessed with a partner-adapted version of the

Parenting Concerns Questionnaire (PCQ), which measures the distress specifically

associated with parenting in adult cancer patients not fully identified by standardized tools

for general distress, anxiety, or depression (Muriel et al., 2012). The original PCQ has 15

items, measured on a 5-point Likert scale (1 = not at all concerned to 5 = extremely

concerned). Internal consistency is 0.83 and moderate correlations are found with the

constructs of interest. Higher scores indicate greater parenting concerns. Instrument

adaptation was done in collaboration with the instrument developers to fit this study

focused on partners (3 items were excluded as not adaptable to partners). Two subscales

were retained (emotional and practical); the items of the third were excluded as not

adaptable to partners.


subscale of the Cancer Rehabilitation and Evaluation System (CARES) (Ganz et al., 1992;

59

Schag et al., 1991): “My partner and I have difficulty talking about our feelings”, and “My

partner and I are not getting along as well as we usually do.” Items were rated from 0 = not

at all to 4 = very much. Responses for each item were dichotomized for analysis into not

strained (0-1) or strained (2-4). A participant rating “strained” for either item was

categorized as “strained”; if rated “not strained” for both items, the item was categorized as

“not strained”.

Participants were asked if currently sexually active (yes/no), and overall sexual relationship



dimensions: good–bad, pleasant–unpleasant, positive–negative, satisfying–unsatisfying,

valuable–worthless. Ratings are summed such that possible scores range from 5 to 35, with

higher scores indicating greater sexual satisfaction. In a study comparing several sexual


the strongest psychometric properties/attributes (Mark et al., 2014).

Anxiety and depression was assessed by the 14-item Hospital Anxiety and Depression







found to range from = 0.67-0.93 (Bjelland et al., 2002).

Perceived social support was also assessed with the Cancer Perceived Agents of Social

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Support (CPASS) (Goldzweig et al., 2010). The CPASS is a 12-item self-rating

questionnaire for cancer patients and partners/spouses that combines two theoretical

content facets of social support- agent of support (spouse, partners, family, friends, and

spiritual or religious beliefs) and type of support (emotional, cognitive, and instrumental).

Higher score indicates more support. Each item is a combination of these two facets (e.g.,

to what extent do you feel you are supported emotionally by your spouse?). Cronbach’s

alpha for agent of support has been reported as 0.80-0.95 and for type of support, 0.45-

0.72.

The Posttraumatic Growth Inventory-Short Form (PTGI-SF) was used to assess the degree

to which partners, as a result of the crisis of cancer in their life, reported possible areas of

growth and change (e.g., I changed my priorities about what is important in life) (Cann et

al., 2010). This 10-item self-report questionnaire reduces the length of the original PTGI.

The scale contains two items for each the five subscales of the original PTGI. Responses

are made on a 6-point scale (0 = I did not experience this change, to 5 = I experienced this

change to a very great degree). It is considered psychometrically sound, with reliability in

the range of .90 across a range of sample populations (Cann et al., 2010).

An open-ended question was included to further explore partner’s experience and needs:

“Looking back, what guidance and/or information would have been helpful at the time of

your partner’s diagnosis and treatment?”

Results

The demographic and clinical characteristics of patients and partners are shown in Table

1. The median age of partner at time of survey was 44 years (range, 28-69), and the median age

for patients at diagnosis was 38 (range, 25-40). The median time from the patient’s diagnosis to

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the survey of her partner was 60 months (range, 9-103). The patients’ breast cancer stages at

diagnosis were Stage 1 (7, 28%), Stage 2 (6, 24%), Stage 3 (2, 8%), Stage 4 (10, 40%). The

average duration of the partnered relationship was 12.6 years (range, 2-16). Most (72%) were

parenting minor children; the mean number of children was 2 (range, 1-4), with a range of ages

of the oldest child from less than one year to age 17 (median, 6.7 years old). All partner

respondents were white males, and the majority (86%) had at least a college education. Most

(91%) were employed full time.

Table 2 depicts the prevalence of partners’ psychosocial concerns and issues. Many

(57%) reported symptoms of anxiety (> 8 on the HADS anxiety subscale). Fewer (22%) were

categorized as having symptoms of depression (> 8 on the HADS depression subscale). Thirty-

nine percent reported not being sexually active. Maladaptive coping was reported by 41%, and

close to one-third (30%) relayed financial strain. Relationship strain was identified by 30%.

Figures 2a-f (bar graphs) show the distribution of scores on the quantitative scales:

CQOLC, CPASS, MOS-SS, PCQ, GMSEX, and PTGI-SF. Caregiver quality of life (CQOLC,

2a) ranged from 22 to 116, with a mean score of 52.5 (SD, 23.9); higher scores indicate lower

quality of life. Two measures identified partners’ ratings of social support. The CPASS (2b)

summary score ranged from 20 to 52, with a mean score of 33.6 (SD, 9.3), and the MOS-SS (2c)

summary score ranged from 41 to 95, with a mean score of 78.3 (14.6). The higher scores

indicate greater levels of social support. Parenting concerns (PCQ, 2d) scores were generally

low, with a range of 12 – 35, and a mean of 20.5 (SD, 7.6). The mean sexual satisfaction

(GMSEX, 2e) score was 22.1 (range, 5-35; SD, 9.5), with higher ratings indicating greater sexual

satisfaction. The post-traumatic growth inventory (PTGI-SF, 2f) mean score was 20.7 (SD, 7.4),

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with a range of 4 to 33, with higher scores indicating greater personal growth and change as a

result of their partner’s cancer diagnosis.

The responses to the open-ended question further illustrate partners’ experiences. Eleven

out of twenty-five partners responded to this question: “Looking back, what guidance and/or

information would have been helpful at the time of your partner’s diagnosis and treatment?”

Several partners noted that they had interest in connecting with other men dealing with a similar

situation, and one stated that it would have been helpful “having more contact with people that

had similar procedures.” One mentioned that he and another spouse had created an online group,

which would “then be available when men need advice or need to vent.” Another partner stated,

“there aren’t many resources that I have found to support caregivers,” and one partner stated

“none,” which is difficult to interpret; it could mean that no guidance or information were

offered, that nothing would have been perceived as helpful at that time, or something else

entirely.

Others, however, relayed believing that they were provided with needed medical

information, and “the right helpful guidance at the time.” One partner also noted that he “was

pointed to caregiver support resources,” and given medical information, so “I felt well prepared.”

Information while helpful, needs to be titrated, as reflected in a comment by one respondent: “At

the time I felt that we were being overwhelmed by information, so I don’t think we could’ve

taken in much more than we received.”

For some partners living in the context of metastatic breast cancer, there seemed to be a

keenly felt absence of support. One partner shared that “my wife is metastatic, so there’s a very

small pool of caregivers who can offer support.” Another responded: “This (lack of support) is

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especially true for the circumstances surrounding my wife’s diagnosis. She has metastatic

cancer…”

Caregivers expressed how breast cancer challenged them personally and in their

relationship with their spouse. One partner shared the following, “…we as men internalize much

and turn to other things like exercise and alcohol to get through day to day.” This partner also

revealed the impact of cancer on him personally and the challenge of spousal commitment, with

a comment about other men in a similar situation: “My wife is metastatic. It’s a hard reality to

face, but I’m really only maintaining my marriage because I couldn’t live with myself if I left

her. Many men feel this way.” Another partner expressed his perspective on the limits of his

spousal caregiving to manage his own self-care: “Learn to say no, even in an emotionally

difficult situation. There is nothing beneficial about physiologically destroying yourself for the

sake of another person. Not only are you then no good to the other person, but you must also

bear the consequences for the rest of your own life.”

Partners also relayed struggling with uncertainty about the future. One commented on

the positive strides in treatment for metastatic breast cancer and related challenges: “She…is

beginning to look at surviving longer but having to continue treatment. This has led to a great

deal more stress about dealing with the future as time has gone on.” This uncertainty, and a wish

for reassurance, was reflected in another partner’s response to what would have been helpful at

the time of diagnosis: “Magically predict the future and tell me things would be fine?” Hope and

reassurance about the future was underscored in one partner’s comment “to maintain faith that all

will be okay.” To another partner, belief in cancer treatment outcomes supported having a

positive outlook on their future: “The realization that this type of cancer happens a lot, the chemo

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will positively affect the cancer she had. There is a very good chance that we will never have to

deal with this again.”

Discussion

The findings of this descriptive study on the partners of young women with breast cancer

who were in active treatment or had recently completed treatment (with and without recurrent or

metastatic disease) highlight a range of experiences and psychosocial issues within this

population. Although the overall size of this sample is small, the relative number of partners

dealing with emotional concerns and their own mental health is noteworthy. Fifty-seven percent

reported clinically significant symptoms of anxiety, and almost one-quarter (22%) endorsed

symptoms of depression. In the setting of recurrent or more advanced cancer (Stage 3 or 4),

partners’ distress has been reported to exceed that of patients, most notably in the areas of

depression, anxiety, fatigue, and work-related stress (Braun et al., 2007; Northouse et al., 2012).

In a longitudinal study of the economic, occupational, and psychosocial impact of caring for a

patient with advanced stage breast cancer, levels of anxiety and depression in cancer family

caregivers were reported at 30% and 35%, respectively, exceeding that of the patient with cancer

(Grunfeld et al., 2004). Among various caregiver relationships, spouses have been identified as

reporting higher levels of distress and lower quality of life than patients (Braun et al., 2007).

These negative effects have also been associated with patients having higher levels of physical

symptoms (Pitceathly & Maguire, 2003), which themselves may be more pronounced and

pervasive in the setting of active treatment. The quality of life scale scores (Figure 2a,

distribution of CQOLC scores) also suggest that a number of partners are experiencing burden

and impact on their overall well-being, with a few reporting notably higher scores indicating

lower quality of life. Partners may feel the weight of multiple, competing needs including

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emotional, physical, and practical support related to diagnosis and active treatment, while

dealing with their own reactions and other responsibilities (e.g., work, children). As some of the

open-ended responses suggest, despite the impact, caregivers do not always get the help they

need. Vanderwerker, Laff, Kadan-Lottick, McColl, and Prigerson (2005) reported on this gap,

revealing that among caregivers meeting criteria for a psychiatric disorder, less than half

accessed mental health services or treatment for it. In the current study, a noteworthy proportion

of partners suffer with anxiety and depression, and may have other unmet needs, pointing to

clear opportunities for devising clinical intervention efforts that reach out to partners to explore

the demands of their role and consider with them what might help.

Close to three-quarters of the partners were parenting minor children, with many in the

school-age range. There were no open-ended responses about parenting; other issues featured

more prominently in partners’ responses. Partners largely indicated low levels of concern about

the impact of cancer on their children, with parenting concerns’ scores generally falling in the

mild range (Figure 2d, PCQ). A small number reported slightly higher levels of concerns,

falling more in the moderate range of concern. Future research would ideally include specific

questions and measures about parenting that have been validated among cancer caregivers.

Given the likelihood that partners of patients in this age cohort have minor children, clinicians

need to both identify parenting concerns and explore partners’ perceptions of their capabilities

and support needs related to parenting. Those parenting partners dealing with recurrent and/or

metastatic cancer in their spouse may benefit from clinicians proactively addressing how they are

managing emotionally and practically as they face ongoing treatment and the uncertainty in their

family’s future.

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The unpredictable nature of cancer treatment and uncertainty of the future are additional

stressors for caregivers along with the disruptions in personal life, work, and their family

household (Northouse et al., 2012). Partners’ responses in this study also spoke to the unknown

trajectory of cancer, a theme consistent with the current cancer caregiver literature (Williams &

Bakitas, 2012). Caregivers may struggle with worrying about the extent of their loved one’s

future (which may be substantial), while also attempting to cope with the day-to-day demands of

their situation. This form of ‘double awareness’ (Nissim et al., 2012) can lead to unexpected

stress. As one partner noted in his response, receiving news of a more sustained future than

expected, while positive, also created an unexpected challenge of living while holding awareness

of the unknown future. Such duality can impose ongoing strain on caregivers, potentially

impeding their focus on the present. Studies have also suggested that greater sense of

uncertainty about the illness is associated with lower quality of life and poorer psychological

adjustment (Baucom et al., 2005). Partners may experience a shift from what was known and

understood to a new reality constructed by cancer and its treatment, and feel a sense of

helplessness and loss of control in response (Trudeau-Hern & Daneshpour, 2012). The

uncertainty of the future and the emotional impact of living with this unknown is a key domain

to address in clinical care. Interventions that focus on decreasing feelings of helplessness and

enhancing sense of control are central to improving quality of life for both patients and partners,

especially in the setting of advanced disease.

Greater sense of burden has been associated not only with increased levels of anxiety,

depression, fatigue, and social isolation, but also with reduced quality of life and financial

difficulties (Girgis et al., 2013; Ugalde et al., 2012). Of note, thirty percent of partners reported

financial strain, and this economic impact (e.g., out-of-pocket costs for prescription medications,

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lost income and benefits, other unexpected expenses), can place sizable, additional stress on

partners. The financial burden of cancer is a growing concern among cancer patients, families,

and the health care system (Girgis et al., 2013). For those who are struggling in this way, timely

referral to cancer center or community resources that may provide some relief is essential, as

well as counseling services to assist with exploration of other potential sources of support and

problem-solving.

Although partners did not specifically mention use of mental health services (e.g.,

therapist, social worker, psychiatrist, psychologist) or other support services, concerns related to

support are underscored in the responses to the open-ended question. The social support scales

(Figure 2c, MOS-SS; Figure 2b, CPASS) suggest that many, though not all, partners report

receiving, or having access to, moderate or greater levels of social support. The distribution of

both summary scales suggests, however, that a small number of partners have a perception of

particularly low levels of social support. Perception of social support is a key factor in its

buffering role in cancer-related psychological distress (Hasson-Ohayon et al., 2010). Through

the open-ended question, partners shared their personal emotional challenges and feelings of

lacking social support particularly in the setting of metastatic cancer. As illness-related needs

increase, spousal caregivers can be highly affected. Caregivers with more limited social

networks have also reported greater caregiver burden (Girgis et al., 2013). In the setting of

active treatment and advanced cancer, their need for social support, an important factor in

distress management in cancer, may be heightened (Pitceathly & Maguire, 2003). The social

support network can be a source of great strength, but some partners may not have cultivated

these relationships, may find family members difficult or burdensome, or may not be able to

reach out for help (Williams & Bakitas, 2012). These challenges highlight the need for

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clinicians to carefully explore caregivers’ beliefs, perceptions, and experiences related to key

others who might have potential to assist them.

Cancer diagnosis can also have impact on spousal relationships. Even in the setting of

good pre-cancer relationships, couples may struggle to manage through the difficulties that a

cancer diagnosis imposes (S. Manne et al., 2014). In the current study, close to one-third of

partners reported relationship strain. Regardless of how well functioning pre-cancer, partners

coping with cancer may be challenged with greater conflict and tensions within their relationship

(Fergus & Gray, 2009). Partners’ previous ways of thinking and behaving in response to stress

might not necessarily be as effective when grappling with the demands on them as a cancer

caregiver. In one striking response, a partner noted his struggle to maintain his relationship in

the setting of metastatic cancer, yet feeling constrained by guilt at the thought of leaving her.

Research on couples coping with breast cancer suggests that despite relationship discord and

other complexities, divorce rates are not higher in this population (Dorval, Maunsell, Taylor-

Brown, & Kilpatrick, 1999), and has not revealed evidence that partners abandon women with

breast cancer (Taylor-Brown, Kilpatrick, Maunsell, & Dorval, 2000). Relationships and role

functioning, however, can be disrupted and diminished, particularly in the setting of active

treatment involving systemic chemotherapy (Ahles et al., 2005). It is also noteworthy that 41%

of partners endorsed behaviors identified with a maladaptive coping style (e.g., self-distraction,

denial, venting, substance use, behavioral disengagement, and self-blame). Other research has

provided supporting evidence that spouses may cope with their own emotional reactions by

holding back their feelings, attempting to be hopeful and “positive,” and may thus increase their

own sense of isolation, and inadvertently, contribute to relationship discord (Zahlis & Lewis,

2010). Negative interactions such as partner avoidance, distancing, or criticism have been

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associated with heightened patient distress (Avis et al., 2004; Baucom et al., 2005). Patients

need both emotional and practical forms of support from their partners, but emotional support

has been found to be most critical in the setting of coping with cancer (Helgeson & Cohen,

1996). While it is not possible to determine the specific impact of coping style in this report,

other studies have underscored the importance of spousal support on patients’ quality of life and

adjustment to illness. Partner support not only has potential to be protective for women’s

emotional health, but suboptimal support may be a source of distress and relationship strain

(Gremore et al., 2011). Additionally, patient perception of unsupportive partner behavior has

been associated with heightened patient anxiety (Borstelmann et al., 2015). As clinicians, a

nonjudgmental stance is critical, as partners themselves may feel emotionally challenged, unsure,

and overwhelmed, and may tend to rely on more avoidant coping and communication choices to

increase their sense of control in such a complex situation.

Several open-ended responses highlighted a desire for connection with others for support,

particularly someone to talk to who would understand what they were going through. This need

for connection is a prominent theme in studies on spousal caregiver health and wellbeing

(Romito et al., 2013; Trudeau-Hern & Daneshpour, 2012). Some partners noted, in addition,

challenges in finding the type of support they were looking for. Partners’ need for support and

connection expressed in response to the open-ended question included information sharing, with

some stating satisfaction with this aspect of their care, and others reporting unmet needs.

Information overload noted by one partner highlights a different form of challenge- information

management. In addition, spousal caregivers may have difficulty identifying their own needs or

asking for help (Ugalde et al., 2012). Physicians, nurses, social workers, and others have a

critical role in proactively addressing information needs at key points in care and guiding

70

patients and family members to the most relevant information for enhancing understanding and

decision-making. Although supportive resources exist in many cancer centers and through

cancer and disease-specific organizations (e.g., American Cancer Society, CancerCare; Breast

Cancer Alliance), those who may benefit are not necessarily aware of what is available to assist

them in their caregiving role. If there are barriers or gaps between needs and the resources to

address them, greater outreach to the community and the caregiver’s social network may be

warranted to prevent or mitigate distress.

Given the known prevalence of sexual intimacy related issues both during and after

cancer treatment (Ganz et al., 2002), it was not surprising to find overall moderate level sexual

satisfaction scores (Figure 2e, GMSEX) along with 37% of partners indicating they were not

currently sexually active. In the setting of breast cancer, individual, relationship, and physical

functioning may all influence sexual intimacy (Baucom et al., 2005). As identified more

generally among cancer caregivers, partners not only have concerns about the impact of cancer

on their wives’ physical well-being (e.g., pain, fatigue), but also on aspects of their partnered

relationship including sexual intimacy (Baucom et al., 2012; Hagedoorn et al., 2000). Despite

the prevalence of sexuality-related issues, however, this topic is too often overlooked. In a

summary of prior work on the construct of sexual satisfaction (also called sexual quality), Shaw

and Rogge (Shaw & Rogge, 2016) noted the strong existing evidence linking the quality of an

individual’s sex life to other areas of functioning such as relationship quality and mental health.

These authors highlight that the GMSEX, as with other well-validated measures of sexual

quality, includes inter-related elements of satisfaction and dissatisfaction (i.e., both positive and

negative aspects of sex life). Clinicians need to explore this important topic thoughtfully to gain

clarity and not miss essential issues, such as fulfilling sexual activity yet dissatisfaction with

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frequency, or diminished sexual desire given changes in emotional closeness and body image

issues (Shaw & Rogge, 2016). These findings underscore the potential benefit of increasing

patients’ and partners’ awareness of common sexual functioning difficulties and related

communication challenges. In a complex context such as cancer, care providers and other

clinicians need to ask directly and sensitively about sexual intimacy and functioning, as this topic

can be difficult for patients and their partners to raise, with the hope to provide a supportive

environment in which to discuss and address any existing concerns.

Although cancer caregiving can be a stressful, demanding experience, many partners

appear to adapt and adjust without elevated rates of distress (Hagedoorn, Sanderman, Bolks,

Tuinstra, & Coyne, 2008). A number of partners in this study did not report significant distress

or psychosocial concerns, and these results suggest some fundamental level of adjustment to

their situation. Several open-ended comments suggested hopefulness and acceptance. In other

research, caregivers have expressed positive aspects of the caregiving role, including making a

difference, expressing love and caring, feeling a sense of accomplishment and purpose (Nijboer

et al., 2000). Finding meaning in the experience may influence post-traumatic growth, the

capacity to develop positive psychological insights, functioning, and perspective in adversity

(Tedeschi & Calhoun, 1996). The range of scores of the post-traumatic growth inventory

(Figure 2f) indicated that a number partners experience some level of positive consequences as a

result of cancer (e.g., greater confidence in ability to handle difficulties, greater sense of

closeness to others, changing priorities in what is important in life). Caregivers of cancer

patients may experience post-traumatic growth, and prior research suggests that personal growth

is possible despite other negative cancer impact (S. Manne et al., 2004; Zwahlen et al., 2010). As

clinicians, it is important to note that these positive outcomes also need to be distinguished from

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defensive denial (i.e., protecting oneself from personal concerns or deeper feelings of

helplessness, etc.) or social desirability responses (Tedeschi, Calhoun, & Cann, 2007). Striving

for open communication is a critical goal.

Limitations

The findings of this study, while expanding understanding of partners in the setting of

active treatment, including those who are living with recurrent or metastatic breast cancer

affecting their spouse, also need to be considered within the context of certain limitations. There

is a potential for selection bias if women experiencing more personal, relationship, or family

challenges did not grant permission to invite their partner. If partners with these characteristics

(e.g., more burdened or distressed) declined participation, this report may underestimate the level

of concerns and needs. The definitive reasons for nonparticipation are not known. This report is

based on a small, non-representative sample. Open-ended responses were not ample enough for

qualitative analysis and were used for illustrative purposes only.

The study design was cross-sectional; thus, the direction of effects and causality cannot

be determined. Partners’ pre-cancer level of mental health, coping style, and functioning within

the family were unknown and may be factors that affect perceptions, attitudes, and adjustment.

The current study examined select potential contributors to partners’ experience; other

contributory factors could be present that we did not measure. Distress, for example, may be

related to the extent of disease, spectrum and demands of roles taken on, the value of the role to

the caregiver, and level of belief in their capabilities to fulfill these roles. Partners’ distress may

also be related to the way patients cope and their level of need.

The length of time from diagnosis to survey completion varied among participants; the

extent to which time may affect aspects of this analysis is not known. Retrospective data

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collection from partners recalling certain aspects of their experience post-diagnosis is another

limitation. This study largely used standard measures that have positive psychometric attributes,

but some measures have not been validated in this population (e.g., parenting concerns).

Generalizability is limited by the demographics of the participants: white men, with the majority

financially secure and college educated. Research with more diverse subjects and lesbian

couples is needed. The ability to generalize is also limited by the disease characteristics of the

women in this subset whose partners participated: many were metastatic or had recurrent breast

cancer versus those in treatment for early stage disease.

Conclusions

This study has some potentially important clinical implications. While some partners

appear have adjusted to the impact of cancer from the standpoint of these descriptive measures,

there is a subset that is clearly struggling with issues such as relationship strain, sexuality

concerns, need for support, finances, and signs of anxiety and depression needing attention.

While definite conclusions cannot be drawn from these results, it is likely that partners would

benefit from proactive attention to providing clear, timely information about the challenges that

can arise with cancer, both for patients and for them (and children, when appropriate). Partners

need acknowledgement that cancer has impact on all those close to the patient, especially

partners, and they too have often been immersed into this experience without any preparation.

Ideally information is targeted to specific identified needs and concerns, and is offered at key

points in care (e.g., at diagnosis, treatment initiation, change in status or treatment plan, etc.).

The subset of partners whose quality of life and psychological wellbeing is more

negatively affected points to the importance of oncology teams strengthening their efforts to

identify those who are more at risk. When partners are not available to ask directly, clinicians

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need to explore with patients how their partners are managing and if they have concerns, taking

care to normalize and acknowledge the common spectrum of challenges for patients and

families. Universal psychosocial distress screening is being implemented in many cancer

centers, and presents an opportunity for identifying patients and families with greater levels of

distress and cancer-related concerns. Screening is a mechanism through which there is the hope

to offer clinical services and supportive programs to those at risk that may otherwise not come to

early attention. In the case of young women with breast cancer who are partnered, oncology care

would ideally incorporate partners into clinical interventions with these patients, or at a

minimum, offer individualized guidance on how to care for, support, and relate to their spouse

under these life-altering circumstances.

Given that partners are such an important source of support for young women as they

navigate this life-changing experience, it is important to understand not only the risk factors for

increased distress among partners, but also resilience and protective factors. From a strengths-

based perspective, it is essential to understand both risk and protective factors to aid in the

development of interventions that promote adjustment and coping through treatment and into the

future. The extent to which post-traumatic growth, for example, is one of these protective factors

is not known, but presents an opportunity for future study.

For partners dealing with recurrent or metastatic cancer, they will have to continue to

manage the process of ongoing treatment and the challenges into the future, knowing in some

cases that they are facing a life-limiting disease. This report underscores an important clinical

opportunity for outreach to these partners, who may be unsure how to identify the support they

need or feel hesitant to ask for help. Other partners, if moving forward into survivorship, have

their own set of adjustments to a post-treatment reality, which can present new, often unexpected

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challenges, such as fears of cancer recurrence and feelings of isolation given the loss of regular

contact with the oncology team.

Future research is needed to explore the most effective ways to engage partners and

identify their dynamic needs, concerns, and challenges through the course of care. When

partners are working full time, managing a host of other cancer-related responsibilities, or who

are more geographically distant from the cancer center, while ideal to offer in-person social work

and other services, this is not always feasible and/or sustainable. Telephone-based counseling

and technology-assisted approaches (e.g., online support groups, apps) offer opportunities to

leverage cancer center resources. Areas of focus highlighted through this report include

increasing partner awareness of the spectrum of resources available to address cancer and

treatment related impacts, providing guidance on effective ways to communicate with and

support their spouse with breast cancer, and how to balance those needs with their own.

Improving the fundamental approach to the care of young women with breast cancer would

include greater information and supportive resource support for all partners, with targeted

clinical intervention for those at higher risk, with the goal of enhancing family coping,

decreasing burden, and improving overall quality of life for both patients and partners.

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Figure 1. Flowchart

N=289Patient stage 0-3 and not

active treatment

N= 25Patient in active treatment

or recent completion



N= 314Completed surveys



N=332 Surveys returned




N=718YW asked for permission to

invite partners

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Table 1. Patient and partner characteristics (N=25)

Median (range)

Partner age at survey (years) 44 (28-69)Patient age at diagnosis (years) 38 (25-40)Time from diagnosis to survey completion (months) 60 (9-103)Age of children at diagnosis (years) 6.7 (<1-17)Number of children at diagnosis 2 (1-4)Length of partnership (years) 15+ (2-15+)Partner N (%) Missing (n)

Gender (male) 24 (100) 1White non-Hispanic 23 (92) 2Working full-time 21 (91) 2College educated 19 (86) 3Parenting (children < 18 years old) 18 (72)Patient breast cancer stage N (%) 1 7 (28) 2 6 (24) 3 2 (8) 4 10 (40)

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Table 2. Prevalence of partners psychosocial concerns (N=25)

Concern N (%) Missing N

Anxiety (HADS subscore > 8) 13 (57) 2Depression (HADS subscore > 8) 5 (22) 2Relationship strain 7 (30) 2Financial insecurity 7 (30) 2Not sexually active 9 (39) 2Maladaptive coping style 9 (41) 3

Mean (Range, SD)

Parenting concerns (N= 18 with children) 20.5 (12-35, 7.6) 3Post-traumatic growth 20.7 (4-33), 7.4) 2Caregiver quality of life 52.5 (22-116, 23.9) 3Sexual satisfaction 22.1 (5-35, 9.5) 0Social support (MOS-SS) 78.3 (41-95, 14.6) 2Social support (CPASS) 33.6 (20-52, 9.3) 1HADS, Hospital Anxiety and Depression Scale; MOS-SS, Medical Outcomes Survey-Social Support; CPASS, Cancer Perceived Agents of Social Support

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Figure 2a.

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Figure 2b.

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Figure 2c.

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Figure 2d.

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Figure 2e.

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Figure 2f.

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Distribution of Summary Scores: PTGI

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Conclusion

The results of these three studies expand current understanding of the psychosocial

concerns, coping efforts, quality of life, and mental health of partners of young women with

breast cancer. The first study focused on the partners of young breast cancer survivors, their

experience post-diagnosis, and their mental health in survivorship. The second study identified

factors in the quality of life of partners who were parenting minor children. The third study was

an exploration of the impact of caregiving on partners of young women during treatment for

early stage, recurrent, and metastatic breast cancer.

The findings of the first study highlight that a subset of partners experience anxiety and

depression at levels warranting attention even several years after their partner’s diagnosis.

Additionally, a strong relationship of maladaptive coping (e.g., avoidance, denial, substance use,

disengagement, venting, and self-criticism) with anxiety was demonstrated. This finding is

consistent with other studies indicating significant association of maladaptive coping behaviors

such as avoidance and low reliance on social support with poorer psychological adjustment post-

diagnosis in both the short and long term. It is possible, and indeed likely, that partners who

coped with more maladaptive behaviors such as avoidance or behavioral disengagement during

treatment may continue to use these same strategies when dealing with post-treatment cancer-

related stress. Earlier intervention with partners who are struggling may not only shape their

adjustment during treatment, but also potentially improve coping and reduce difficulties in short

and longer-term follow up. Among partners of survivors in study one, lower educational

attainment (less than college) was also significantly tied to higher anxiety. This result may

inform intervention to reduce potential barriers that less education may impose on aspects of care

such as communication with the health care team, treatment-related understanding, and access to

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information and support. The findings from the first study also revealed that the majority of

partners who were parenting minor children had concerns about the impact of cancer on their

children in the time after diagnosis.

The second study was specifically focused on partners parenting minor children at

diagnosis and identified signs of anxiety and depression in a substantive proportion of well

parents. In addition, the second study, found that among parenting partners, higher levels of

parenting concerns, lower sexual satisfaction, lower post-traumatic growth, greater anxiety,

lower levels of social support, and younger age were all significantly linked with poorer quality

of life. Prior research has highlighted the potential for the well parenting partner to serve an

important protective role in the psychosocial adjustment of children, with the capacity to

influence more positive family functioning. Those partners who experience lower quality of life

may be less effective in their partner and parental functioning, possibly having negative impact

on the overall family environment and children’s wellbeing. The prevalence of mental health,

parenting, and support needs, and their connection to quality of life, indicates a potential

opportunity to direct greater intervention efforts to identifying concerns and reducing distress

among parenting partners.

The findings from the third study suggest that a notable proportion of partners have

support-related concerns, may suffer with anxiety and depression, and experience poor quality of

life while their partner is undergoing treatment for breast cancer. Emotional struggles and

interpersonal distress appear to be amplified when the ill partner has recurrent or metastatic

cancer. Although the overall size of the sample was small, the open-ended responses and other

measures illustrate that this subset of partners may have unmet mental health, informational, and

social support needs, and would benefit from targeted attention to their psychosocial distress.

87

Across all three studies, a large proportion of partners identified predominantly

maladaptive behaviors as coping responses to cancer-related stressors. The prevalence of this

coping style suggests a point of potential intervention related to partners’ personal adjustment, to

their functioning in their partnered relationships, and when applicable, as parents in the setting of

cancer. Approximately one third of partners also reported relationship strain across all three

studies, specifically defined as not getting along as well as usual or having difficulty talking

about their feelings with each other. This finding is consistent with prior research among

couples with cancer that has identified various relationship challenges during treatment and into

survivorship. Pre-cancer ways of thinking and behaving in response to stress may not be as

effective when grappling with the impact of serious illness both individually and interpersonally.

Across the studies, a notable subset of partners also indicated not being sexually active or

reported sexual relationship quality and satisfaction concerns. Lower sexual satisfaction was

also significantly associated with lower quality of life in parenting partners. Sexual activity has

an important role in most partnered relationships, and cancer-related sexual concerns among

women with breast cancer have been well described in other work. These results underscore the

importance of directly and sensitively addressing the impact of cancer and treatment on sexuality

and intimate relationships with patients and partners early in care, during treatment, and into

survivorship.

While this body of work was focused on identifying psychosocial issues, concerns, and

needs that may be amenable to intervention, it has also revealed that some partners, both in the

treatment phase of care and in survivorship, experience post-traumatic growth as a result of

cancer. This finding is consistent with other research indicating positive effects of cancer on

patients and their caregivers. The second study also revealed that higher levels of post-traumatic

88

growth were strongly associated with better quality of life among parenting partners. It is

possible that despite the challenges that cancer and treatment impose, personal growth such as

positive psychological insights, closer family relationships, new perspectives, and shifted

priorities may occur. Additionally, not all partners reported significant psychosocial concerns,

poor quality of life, or negative mental health outcomes. Within the limits of what can be

concluded from these studies, some proportion of partners appears to have adjusted without

elevated rates of distress or cancer-related concerns.

The study design for the current body of research was cross-sectional, thus the direction

of effects and causality cannot be determined. Partners’ pre-cancer mental health, coping style,

and functioning as a partner was unknown, and may have affected adjustment and coping during

treatment and in survivorship. Partners may be anxious and overwhelmed, and thus attempt to

manage their feelings and the impact of cancer in ways that are more maladaptive. Others may

be unsure how to find support or hesitate to ask for help. The potential tendency for partners to

withdraw, avoid discussion, and choose less effective coping strategies may be multifactorial and

arise from feeling unprepared or unsure of how to meet the demands on them and their family.

These thoughts and behaviors may inadvertently and unintentionally contribute to greater

distress, personal isolation, and relationship discord.

These studies did not link the partners to the patients’ functional and emotional status,

therefore, it was not possible to determine what role these may have played in the partners’

wellbeing. Additionally, selection bias is possible if young women experiencing more or fewer

personal or family challenges did not grant permission to invite their partner, or if partners with

these characteristics declined to participate. Generalizability is also limited by the race and

socio-economic background of the study participants: male, largely white, financially secure,

89

and college-educated. The number of same-sex partners was very small; thus, it was not possible

to explore their specific experiences. Research is needed with more diverse subjects and

couples. Recall bias is another limitation, with most partners in survivorship recalling aspects of

their experience in the early post-diagnosis period for some areas assessed. The length of time

from diagnosis to survey completion varied among participants, thus the extent to which time

may affect aspects of this analysis is not known.

Nevertheless, the results of these studies provide valuable information on modifiable

factors in the experience of young breast cancer patients and their partners. Increased attention is

needed for partners and couples who are identified as having coping or communication

challenges or other stressors such as parenting concerns or low social support. Parenting

partners with unaddressed distress and concerns may be limited in their capacity to support both

their partner with breast cancer and their children. Mental health and unmet cancer-related needs

of caregiving partners should be identified early and reassessed at important nodal points of care,

such as when cancer recurs or is metastatic, as well as in transition to survivorship and in longer-

term follow up. Clinicians might more proactively address how partners dealing with advanced

cancer are managing emotionally and practically, as they may particularly benefit from this

attention, as they face ongoing treatment and uncertainty in the future. More research will be

needed to identify the specific needs of partners of patients in early treatment to determine if

there are additional concerns and issues that arise.

These studies also underscore the value in engaging partners to share their experience so

they can be offered both practical and emotional support with the goal of reducing distress,

limiting role strain, and enhancing functioning for the partner, couple, and family.

Recommendations from this research include strengthening efforts to explore partners’ support

90

needs and capacities, especially given that social support is a protective factor for mental health

of both patients and partners. These findings, consistent with prior work, suggest that partners

would benefit from guidance on effective ways to support their ill partner, including

acknowledgement that they too have needs worthy of attention. Support groups or forums to

meet other caregivers are a valuable resource, though attendance may not always be feasible for

some partners, especially those with work and family obligations. Groups and other

opportunities for connection might be important resources for some partners who may not have a

developed or accessible network of support. Innovations such as online support and other

technology-assisted approaches are growing as viable alternatives to in-person support, though

not yet well developed for younger cancer caregivers. Online support may also help with stigma

about mental health and help-seeking, and provide an alternative or supplement to in-person

support given geographical distance and competing demands for partners’ time and attention.

The findings from these studies add to the understanding of the impact of cancer on

partners of young women with breast cancer. Moving forward, there is opportunity to build

upon them with longitudinal research aimed at revealing those factors that most affect variations

in partners’ stress, coping, and mental health over time. Longitudinal study, with a larger and

more representative sample of partners, is needed to investigate and determine the most salient

factors that may contribute to more adaptive functioning for partners, and when applicable, as

parents, across the continuum of cancer care. Given the importance of partners’ wellbeing and

their critical role in supporting patients, from a strengths-based perspective, future research

might also focus on greater understanding of resilience and protective factors. There is a need

for heightened attention to the development of well-designed and appropriately targeted

interventions for partners and couples, especially when there are modifiable risk factors or

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supportive needs that can be addressed. To the extent that distress in a patient and partner have

interdependence, potential interventions would ideally include couples-based supportive

counseling, and if there are children, guidance to support effective co-parenting and children’s

wellbeing. This focus may improve individual, relationship, and family functioning, with the

goal of reducing the burden of illness, strengthening resources for coping, and enhancing overall

quality of life for patients and their partners and children across the dynamic and challenging

trajectory of cancer care.

92

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APPENDIX A

Partner Survey

Thank you, in advance, for filling out this survey. This survey contains questions about the following:

Your background

Support and other help that others may provide

Your quality of life

Impact of your partner’s breast cancer experience on you and different aspects of your life.

All of your answers will be kept private, and you can skip any questions that you do not feel comfortable

answering. Unless otherwise directed, please choose only one answer for each question. Your answers to the

survey questions will not be shared with your partner and will not affect her medical care in any way.

We hope that the information gained from this research project will improve the understanding of how the

cancer experience impacts partners of young women with breast cancer.

If you have any questions, please call the Young Women’s Study team at 617-632-6341 or e-mail [email protected]

Study ID _____ v3-10-16A Page 102

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Date Survey Completed: _________________

SECTION 1

We are going to begin with some questions about your background.

1. Which of the following best describes your current partner relationship with the woman who referred you to this survey study? Please check one response.

married living as married or domestic partner not living as married or domestic partner, but in a partnered relationship not currently partnered *(see note below)

*The following survey does not apply to you. You do not need to complete any of the following questions, but we kindly ask that you return your survey in the enclosed envelope provided. Thank you for your time.

2. How long have you been in your current partnered relationship? Please check one response and round to the closest year, if necessary (e.g. if you have been in your relationship for 2 years and 5 months, check “2 years.” If you have been in your relationship for 2 years and 6 months, check “3 years.”)

< 12 months 8 years 1 year 9 years

2 years 10 years3 years 11 years 4 years 12 years5 years 13 years6 years 14 years7 years 15 or more years

3. What is your gender?

Male Female

Other

SECTION 2

4. People sometimes look to others for companionship, assistance, or other types of support. How often would each type of support listed below be available to you if you needed it? Please check one box in each row.

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None of the time

A little of the time

Some of the time

Most of the time All of the time

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Someone to help you if you were confined to bed

Someone you can count on to listen to you when you need to talk

None of the time


Some of the time


Someone to give you good advice about a crisis

Someone to take you to the doctor if you needed it

Someone who shows you love and affection

Someone to have a good time with

Someone to give you information to help you understand a situation

Someone to confide in or talk to about yourself or your problems

Someone who hugs you

Someone to get together with for relaxation

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Someone to prepare your meals if you were unable to do it yourself

Someone whose advice you really want

Someone to do things with to help you get your mind off things

None of the time


Some of the time


Someone to help with daily chores if you were sick

Someone to share your most private worries and fears with

Someone to turn to for suggestions about how to deal with a personal problem

Someone to do something enjoyable with

Someone who understands your problems.

Someone to love and make you feel loved

5. People deal with a loved one’s breast cancer diagnosis in different ways; we are interested in how you have dealt with your partner’s diagnosis of breast cancer. Please let us know how frequently you have used the

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choices in the left column. We only want to know how often you have used a choice, not whether it has worked for you. Rate each item separately. Please check one box in each row.

I haven’t been doing this at all

I’ve been doing this a little bit

I’ve been doing this a medium

amountI’ve been doing

this a lotI've been turning to work or other activities to take my mind off things.I've been concentrating my efforts on doing something about the situation I'm in.I've been saying to myself "this isn't real.”

I've been using alcohol or other drugs to make myself feel better.





this a lot

I've been getting emotional support from others.

I've been giving up trying to deal with it.I've been taking action to try to make the situation better.I've been refusing to believe that it has happened.I've been saying things to let my unpleasant feelings escape.

I’ve been getting help and advice from other people.

I've been using alcohol or other drugs to help me get through it.

I've been trying to see it in a different light, to make it seem more positive.

I’ve been criticizing myself.

I've been trying to come up with a strategy about what to do.I've been getting comfort and understanding from someone.

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I've been giving up the attempt to cope.

I've been looking for something good in what is happening.

I've been making jokes about it.

I've been doing something to think about it less, such as going to movies, watching TV, reading, daydreaming, sleeping, or shopping.

I've been accepting the reality of the fact that it has happened.

I've been expressing my negative feelings.





this a lotI've been trying to find comfort in my religion or spiritual beliefs.I’ve been trying to get advice or help from other people about what to do.

I've been learning to live with it.

I've been thinking hard about what steps to take.I’ve been blaming myself for things that happened.I've been praying or meditating.

I've been making fun of the situation.

SECTION 3

6. Are you and your partner parenting children? Yes _______ No _______

IF YOU ANSWERED “NO” PLEASE SKIP TO QUESTION 10.

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If yes, please tell us how many children live with you and your partner (or with your partner, for whom you have parenting responsibility). Some children spend significant time with other relatives or biological parents. Please consider only those children that you and your partner are parenting at least 50% of the time.

7. Number of children ________

8. Please fill in the birthdates for the children below

Children Children's Birthdates (MM/DD/YYYY)

Child # 1

Child # 2

Child # 3

Child # 4

Child # 5

Child # 6

Child # 7

Child # 8

9. The following questions ask about some areas related to children that may concern you since your partner’s cancer diagnosis. Please rate how concerned you have been about each of these things in the past month, by checking one of the boxes on each row.

In the past month, I have been concerned that…

Not at all concerned

A little bit concerned

Somewhat concerned

Very concerned

Extremely concerned

My partner’s moods, worries, or emotions are affecting our children.

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Our children get upset when we talk about the illness.

Changes in my partner’s memory or attention are affecting our children.

Our children might be in need of professional mental health care.

My partner’s illness is changing our children’s routine.

Our children are emotionally upset by my partner’s illness.

My partner’s physical limits or low energy are affecting our children.

Our children are worried that my partner is going to die.



Somewhat concerned

Very concerned

Extremely concerned

My partner is not able to spend as much time with our children as I’d like.

Our children get confused or upset by what others say about my partner’s illness.

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I would not be able to meet our children’s emotional needs if my partner dies.

I would not be able to meet our children’s practical needs if my partner dies.

SECTION 4

10. Below is a list of life areas that may have been impacted since your partner’s diagnosis. Indicate how true each statement has been for you during the past 7 days. Please check one box in each row.

Not at all A little bit Somewhat Quite a bit Very much

It bothers me that my daily routine is altered.

My sleep is less restful.

My daily life is imposed upon.

I am satisfied with my sex life.

It is a challenge to maintain my outside interests.


I am under financial strain.

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I am concerned about our insurance coverage.

My economic future is uncertain.

I fear my loved one will die.

I have more of a positive outlook on life since my loved one’s illness.

My level of stress and worries has increased.

My sense of spirituality has increased.

It bothers me, limiting my focus day-to-day.

I feel sad.

I feel under increased mental strain.

I get support from my friends and neighbors.

I feel guilty.


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I feel frustrated.

I feel nervous.

I worry about the impact my loved one’s illness has had on my children or other family members.

I have difficulty dealing with my loved one’s changing eating habits.

I have developed a closer relationship with my loved one.

I feel adequately informed about my loved one’s illness.

It bothers me that I need to be available to chauffeur my loved one to appointments.

I fear the adverse effects of treatment on my loved one.

The responsibility I have for my loved one’s care at home is overwhelming.

I am glad that my focus is getting my loved one well.

Family communication has increased.

It bothers me that my priorities have changed.

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The need to protect my loved one bothers me.

It upsets me to see my loved one deteriorate.

The need to manage my loved one’s pain is overwhelming.

I am discouraged about the future.

I am satisfied with the support I get from my family.

It bothers me that other family members have not shown interest in taking care of my loved one.

11. Below are statements about different types of support from other people in your life that you may be receiving while dealing with your partner’s cancer diagnosis. Please read each item carefully and check the one box in each row that best applies to you.

a) To what extent do you feel you receive helpful information from:

Not at all A little A fair amount Much Very much

Your spouse/partner

Your family

Your friendsBelief-based

sources

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(religious or spiritual)?

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b) To what extent do you feel you receive emotional support from:


Your spouse/partner

Your family


sources (religious or spiritual)?

c) To what extent do you feel you receive practical help from:


Your spouse/partner

Your family



The following two questions refer to how you have felt over the past month. Please check one answer for each.

12. My partner and I have difficulty talking about our feelings.


117

13. My partner and I are not getting along as well as we usually do.


14. Are you sexually active with your partner? Please check one response.

Yes No

15. The following questions ask about your views on your sexual relationship with your partner. Please rate on a scale from 1 to 7 how each describes your sexual relationship with your partner. Choose ONE number on the line for each question.

a) In general, how would you describe your overall sexual relationship with your partner?

b) In general, how would you describe your overall sexual relationship with your partner?

c) In general, how would you describe your overall sexual relationship with your partner?

Study ID _____ v3-10-16A Page 117

Very bad Very good

I choose not to answer

Very unpleasant

Very pleasant


Very negative

Very positive


118

d) In general, how would you describe your overall sexual relationship with your partner?

e) In general, how would you describe your overall sexual relationship with your partner?

SECTION 5

16. Have you ever or do you currently drink alcohol? Please check one response. yes, but only in the past (PLEASE SKIP to QUESTION 18) yes, currently no, never (PLEASE SKIP to QUESTION 19)

17. How many alcoholic beverages (beer, wine, mixed drinks, etc.) do you currently consume weekly? Please check one response.

less than 1 drink a week 1 to 4 drinks per week 5 to 9 drinks a week 10 to 19 drinks a week more than 19 drinks a week

18. In the year before your partner’s diagnosis, on average, how many alcoholic beverages (beer, wine, mixed drinks, etc.) did you consume weekly? Please check one response.

none less than 1 drink a week 1 to 4 drinks per week 5 to 9 drinks a week 10 to 19 drinks a week more than 19 drinks a week

Study ID _____ v3-10-16A Page 118

Very unsatisfying

Very satisfying


Worthless

Very valuable


119

SECTION 6

Below are statements about emotions that people often have during an illness. Please read each item and check the response that resembles how you have felt over the past week.

19. I felt tense or “wound up”:

Most of the time A lot of the time From time to time, occasionally Not at all

20. I still enjoyed the things I used to enjoy:

Definitely as much Not quite so much Only a little Hardly at all

21. I got a sort of frightened feeling, as if something awful was about to happen:

Very definitely and quite badly Yes, but not too badly A little, but it doesn’t worry me Not at all

22. I could laugh and see the funny side of things:

As much as I always could Not quite as much as I always could Definitely not as much as I always could Not at all

23. Worrying thoughts went through my mind:

A great deal of the time A lot of the time From time to time, but not too often Only occasionally

24. I felt cheerful:

Not at all Not often Sometimes Most of the time

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25. I could sit at ease and feel relaxed:

Definitely Usually Not often Not at all

26. I felt as if I was slowed down:

Nearly all the time Very often Sometimes Not at all

27. I got a sort of frightened feeling, like “butterflies in my stomach”:

Not at all Occasionally Quite often Very often

28. I had lost interest in my appearance:

Definitely I didn’t take so much care as I should have I may not have taken quite as much care I took just as much care as ever

29. I looked forward with enjoyment to things:

As much as I ever did Rather less than I used to Definitely less than I used to Hardly at all

30. I felt restless, as if I had to be on the move:

Very much Quite a lot Not very much Not at all

31. I got sudden feelings of panic:

Very often Quite often Not very often Not at all

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32. I could enjoy a good book or radio or TV show:

Often Sometimes Not often Very seldom

33. Please indicate for each of the statements below the degree to which this change occurred in your life as a result of your partner’s cancer diagnosis, using the following scale. Please check one box in each row.

I did not experience this change

I experienced this change

to a very small degree

I experienced this change to a small

degree


to a moderate

degree

I experienced this change to a great

degree


to a very great degree

I changed my priorities about what is important in life.

I have a greater appreciation for the value of my own life.

I am able to do better things with my life.

I have a better understanding of spiritual matters.

I have a greater sense of closeness with others.

I established a new path for my life.

I know better that I can handle difficulties.

I have a stronger religious faith.

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I discovered that I’m stronger than I thought I was.I learned a great deal about how wonderful people are.

SECTION 7

34. What is your date of birth? ____/____/_______ (MM/DD/YYYY)

35. What is the highest level of education that you have completed? Please check one response.

grade school/junior high some high school technical/vocational some college college graduate post-college graduate

36. Do you consider yourself to be Hispanic or Latino? (Spanish, Hispanic, or Latino is a person of Mexican, Puerto Rican, Cuban, South or Central American, or other Spanish culture of origin, regardless of race.) Please check one response.

yes no

37. What race do you consider yourself to be? Please check all that apply. American Indian or Alaskan Native (Native Person/Aboriginal). A person having origins in any of

the original peoples of North, Central, or South America, and who maintains tribal affiliation or community attachment.

Asian. A person having origins in any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent, including for example, Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam.

Black, Haitian, or African American. A person having origins in any of the black racial groups of Africa.

Native Hawaiian or other Pacific Islander. A person having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands.

White. A person having origins in any of the original peoples of Europe, the Middle East, or North Africa.

Check here if you do not wish to provide some or all of the above information.

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38. What is your current employment status? Please check all that apply. currently working full time currently working part time

employed/on leave of absence unemployed student full time student part time homemaker disabled retired other (specify): _____________________________________________

39. How would you describe your household’s financial situation right now? Please check one response. After paying the bills, you still have enough money for special things that you want. You have enough money to pay the bills, but little spare money to buy extra or special things. You have money to pay the bills, but only because you have cut back on things. You are having difficulty paying the bills, no matter what you do.

40. Which of these categories best describes your total combined family income for the past 12 months? This should include income (before taxes) from all sources, wages, rent from properties, Social Security, disability and/or veteran’s benefits, unemployment benefits, workman’s compensation, help from relatives (including child payments and alimony), and so on. Please check one response.

less than $5,000 $5,000 through $11,999 $12,000 through $15,999 $16,000 through $24,999 $25,000 through $34,999 $35,000 through $49,999 $50,000 through $74,999 $75,000 through $99,999 $100,000 or more don’t know no response

41. Looking back, what guidance and/or information would have been helpful at the time of your partner’s diagnosis and treatment?

__________________________________________________________________________________________________

__________________________________________________________________________________________________

__________________________________________________________________________________________________

__________________________________________________________________________________________________

__________________________________________________________________________________________________

__________________________________________________________________________________________________

Thank you for completing this survey!

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APPENDIX B

Partner Survey

Thank you, in advance, for filling out this survey. This survey contains questions about the following:

Your background

Support and other help that others may provide

Your quality of life

Impact of your partner’s breast cancer experience on you and different aspects of your life.

All of your answers will be kept private, and you can skip any questions that you do not feel comfortable

answering. Unless otherwise directed, please choose only one answer for each question. Your answers to the

survey questions will not be shared with your partner and will not affect her medical care in any way.

We hope that the information gained from this research project will improve the understanding of how the

cancer experience impacts partners of young women with breast cancer.

If you have any questions, please call the Young Women’s Study team at 617-632-6341 or e-mail [email protected]

Study ID _____ v3-10-16 B Page 124

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Date Survey Completed: _________________

SECTION 1

We are going to begin with some questions about your background.

10. Which of the following best describes your current partner relationship with the woman who referred you to this survey study? Please check one response.

married living as married or domestic partner not living as married or domestic partner, but in a partnered relationship not currently partnered *(see note below)

*The following survey does not apply to you. You do not need to complete any of the following questions, but we kindly ask that you return your survey in the enclosed envelope provided. Thank you for your time.

11. How long have you been in your current partnered relationship? Please check one response and round to the closest year, if necessary (e.g. if you have been in your relationship for 2 years and 5 months, check “2 years.” If you have been in your relationship for 2 years and 6 months, check “3 years.”)

< 12 months 8 years 1 year 9 years

2 years 10 years3 years 11 years 4 years 12 years5 years 13 years6 years 14 years7 years 15 or more years

12. What is your gender?

Male Female Other

SECTION 2

13. People sometimes look to others for companionship, assistance, or other types of support. Thinking back to the time after your partner’s breast cancer diagnosis, how often was each type of support listed below available to you had you needed it? Please check one box in each row.

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None of the time


Some of the time


someone to help you if you were confined to bed

None of the time


Some of the time


Someone you can count on to listen to you when you need to talk

Someone to give you good advice about a crisis

Someone to take you to the doctor if you needed it

Someone who shows you love and affection

Someone to have a good time with

Someone to give you information to help you understand a situation

Someone to confide in or talk to about yourself or your problems

Someone who hugs you

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Someone to get together with for relaxation

Someone to prepare your meals if you were unable to do it yourself

Someone whose advice you really want

None of the time


Some of the time


Someone to do things with to help you get your mind off things

Someone to help with daily chores if you were sick

Someone to share your most private worries and fears with

Someone to turn to for suggestions about how to deal with a personal problem

Someone to do something enjoyable with

Someone who understands your problems.

Someone to love and make you feel loved

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14. People deal with a loved one’s breast cancer diagnosis in different ways; we are interested in how you may have dealt with your partner’s diagnosis of breast cancer. Thinking back to the time after your partner’s breast cancer diagnosis, please let us know how frequently you used the choices in the left column. We only want to know how often you used a choice, not whether it worked for you. Rate each item separately. Please check one box in each row.

I hadn’t been doing this at all

I had been doing this a

little bit


medium amount

I had been doing this a lot

Turning to work or other activities to take my mind off things. Concentrating my efforts on doing something about the situation I'm in.



little bit


medium amount


Saying to myself "this isn't real.”Using alcohol or other drugs to make myself feel better.

Getting emotional support from others.

Giving up trying to deal with it.Taking action to try to make the situation better.Refusing to believe that it has happened.Saying things to let my unpleasant feelings escape.Getting help and advice from other people.Using alcohol or other drugs to help me get through it.Trying to see it in a different light, to make it seem more positive.

Criticizing myself.Trying to come up with a strategy about what to do.

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Getting comfort and understanding from someone.

Giving up the attempt to cope.Looking for something good in what is happening.

Making jokes about it.Doing something to think about it less, such as going to movies, watching TV, reading, daydreaming, sleeping, or shopping.Accepting the reality of the fact that it has happened.

Expressing my negative feelings.Trying to find comfort in my religion or spiritual beliefs.Trying to get advice or help from other people about what to do.



little bit


medium amount


Learning to live with it.Thinking hard about what steps to take.Blaming myself for things that happened.

Praying or meditating.

Making fun of the situation.

SECTION 3

15. At the time of your partner’s diagnosis, were you and your partner parenting children? Yes _______ No _______

IF YOU ANSWERED “NO” PLEASE SKIP TO QUESTION 10

If yes, please tell us how many children were living with you and your partner (or with your partner, for whom you have parenting responsibility) at the time of your partner’s diagnosis? Some children spend significant time with other relatives or biological parents. Please consider only those children that are with your partner at least 50% of the time.

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16. Number of children ________

17. Please fill in the birthdates for the children below

Children Children's Birthdates (MM/DD/YYYY)

Child # 1

Child # 2

Child # 3

Child # 4

Child # 5

Child # 6

Child # 7

Child # 8

18. The following questions ask about some areas that may have been a concern to you at the time of your partner’s cancer diagnosis. Please rate how concerned you had been about each of these things at that point in time by checking one of the boxes on each row.

I had been concerned that…



Somewhat concerned

Very concerned

Extremely concerned

My partner’s moods, worries or emotions were affecting our children.

Our children got upset when we talked about the illness.

Changes in my partner’s memory or attention were

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affecting our children.

Our children might have been in need of professional mental health care.

My partner’s illness was changing our children’s routine.

Our children were emotionally upset by my partner’s illness.

My partner’s physical limits or low energy were affecting our children.

Our children were worried that my partner was going to die.



Somewhat concerned

Very concerned

Extremely concerned

My partner was not able to spend as much time with our children as I would have liked.

Our children got confused or upset by what others said about my partner’s illness.

I would not have been able to meet our children’s emotional needs if my partner died.

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I would not have been able to meet our children’s practical needs if my partner died.

SECTION 4

10. Below is a list of life areas that may have been impacted since your partner’s diagnosis. Indicate how true each statement has been for you during the past 7 days. Please check one box in each row.


It bothers me that my daily routine is altered.

My sleep is less restful.

My daily life is imposed upon.

I am satisfied with my sex life.

It is a challenge to maintain my outside interests.


I am under financial strain.

I am concerned about our insurance coverage.

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My economic future is uncertain.

I fear my loved one will die.

I have more of a positive outlook on life since my loved one’s illness.

My level of stress and worries has increased.

My sense of spirituality has increased.

It bothers me, limiting my focus day-to-day.

I feel sad.

I feel under increased mental strain.

I get support from my friends and neighbors.

I feel guilty.


I feel frustrated.

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I feel nervous.

I worry about the impact my loved one’s illness has had on my children or other family members.

I have difficulty dealing with my loved one’s changing eating habits.

I have developed a closer relationship with my loved one.

I feel adequately informed about my loved one’s illness.

It bothers me that I need to be available to chauffeur my loved one to appointments.

I fear the adverse effects of treatment on my loved one.

The responsibility I have for my loved one’s care at home is overwhelming.

I am glad that my focus is getting my loved one well.

Family communication has increased.

It bothers me that my priorities have changed.


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The need to protect my loved one bothers me.

It upsets me to see my loved one deteriorate.

The need to manage my loved one’s pain is overwhelming.

I am discouraged about the future.

I am satisfied with the support I get from my family.

It bothers me that other family members have not shown interest in taking care of my loved one.

11. Below are statements about different types of support that you may have received from other people in your life after your partner’s cancer diagnosis. Please read each item carefully and check the one box in each row that best applies to you.

a) To what extent do you feel you received helpful information from:


Your spouse/partner?

Your family?

Your friends?Belief-based


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b) To what extent do you feel you received emotional support from:



Your family?



c) To what extent do you feel you received practical help from:



Your family?



The following questions refer to how you have felt over the past month. Please check one answer for each.

12. My partner and I have difficulty talking about our feelings.


137

13. My partner and I are not getting along as well as we usually do.


14. Are you sexually active with you partner? Please check one response.

Yes No

15. The following questions ask about your views on your sexual relationship with your partner. Please rate on a scale from 1 to 7 how each describes your sexual relationship with your partner. Choose ONE number on the line for each question.

a) In general, how would you describe your overall sexual relationship with your partner?

b) In general, how would you describe your overall sexual relationship with your partner?

c) In general, how would you describe your overall sexual relationship with your partner?

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Very bad Very good


Very unpleasant

Very pleasant


Very negative

Very positive


138

d) In general, how would you describe your overall sexual relationship with your partner?

e) In general, how would you describe your overall sexual relationship with your partner?

SECTION 5

16. Have you ever or do you currently drink alcohol? Please check one response. yes, but only in the past (PLEASE SKIP to QUESTION 18) yes, currently no, never (PLEASE SKIP to QUESTION 19)

17. How many alcoholic beverages (beer, wine, mixed drinks, etc.) do you currently consume weekly? Please check one response.

less than 1 drink a week 1 to 4 drinks per week 5 to 9 drinks a week 10 to 19 drinks a week more than 19 drinks a week

18. In the year before your partner’s diagnosis, on average, how many alcoholic beverages (beer, wine, mixed drinks, etc.) did you consume weekly? Please check one response.

none less than 1 drink a week 1 to 4 drinks per week 5 to 9 drinks a week 10 to 19 drinks a week more than 19 drinks a week

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Very unsatisfying

Very satisfying


Worthless

Very valuable


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SECTION 6

Below are statements about emotions that people often have during an illness. Please read each item and check the response that resembles how you have felt over the past week.

19. I felt tense or “wound up”:

Most of the time A lot of the time From time to time, occasionally Not at all

20. I still enjoyed the things I used to enjoy:

Definitely as much Not quite so much Only a little Hardly at all

21. I got a sort of frightened feeling, as if something awful was about to happen:

Very definitely and quite badly Yes, but not too badly A little, but it doesn’t worry me Not at all

22. I could laugh and see the funny side of things:

As much as I always could Not quite as much as I always could Definitely not as much as I always could Not at all

23. Worrying thoughts went through my mind:

A great deal of the time A lot of the time From time to time, but not too often Only occasionally

24. I felt cheerful:

Not at all Not often Sometimes Most of the time

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25. I could sit at ease and feel relaxed:

Definitely Usually Not often Not at all

26. I felt as if I was slowed down:

Nearly all the time Very often Sometimes Not at all

27. I got a sort of frightened feeling, like “butterflies in my stomach”:

Not at all Occasionally Quite often Very often

28. I had lost interest in my appearance:

Definitely I didn’t take so much care as I should have I may not have taken quite as much care I took just as much care as ever

29. I looked forward with enjoyment to things:

As much as I ever did Rather less than I used to Definitely less than I used to Hardly at all

30. I felt restless, as if I had to be on the move:

Very much Quite a lot Not very much Not at all

31. I got sudden feelings of panic:

Very often Quite often Not very often Not at all

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32. I could enjoy a good book or radio or TV show: Often Sometimes Not often Very seldom

33. Please indicate for each of the statements below the degree to which this change occurred in your life as a result of your partner’s cancer diagnosis, using the following scale. Please check one box in each row.

I did not experience this change


to a very small degree

I experienced this change to a small

degree


to a moderate

degree

I experienced this change to a great

degree


to a very great degree

I changed my priorities about what is important in life.

I have a greater appreciation for the value of my own life.

I am able to do better things with my life.

I have a better understanding of spiritual matters.

I have a greater sense of closeness with others.

I established a new path for my life.

I know better that I can handle difficulties.

I have a stronger religious faith.

I discovered that I’m stronger than I thought I was.

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I learned a great deal about how wonderful people are.

SECTION 7

34. What is your date of birth? ____/____/_______ (MM/DD/YYYY)

35. What is the highest level of education that you have completed? Please check one response.

grade school/junior high some high school technical/vocational some college college graduate post-college graduate

36. Do you consider yourself to be Hispanic or Latino? (Spanish, Hispanic, or Latino is a person of Mexican, Puerto Rican, Cuban, South or Central American, or other Spanish culture of origin, regardless of race.) Please check one response.

yes no

37. What race do you consider yourself to be? Please check all that apply. American Indian or Alaskan Native (Native Person/Aboriginal). A person having origins in any of

the original peoples of North, Central, or South America, and who maintains tribal affiliation or community attachment.

Asian. A person having origins in any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent, including for example, Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam.

Black, Haitian, or African American. A person having origins in any of the black racial groups of Africa.

Native Hawaiian or other Pacific Islander. A person having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands.

White. A person having origins in any of the original peoples of Europe, the Middle East, or North Africa.

Check here if you do not wish to provide some or all of the above information.

38. What is your current employment status? Please check all that apply. currently working full time currently working part time

employed/on leave of absence unemployed student full time student part time homemaker disabled

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retired other (specify): ___________________________________________

39. How would you describe your household’s financial situation right now? Please check one response. After paying the bills, you still have enough money for special things that you want. You have enough money to pay the bills, but little spare money to buy extra or special things. You have money to pay the bills, but only because you have cut back on things. You are having difficulty paying the bills, no matter what you do.

40. Which of these categories best describes your total combined family income for the past 12 months? This should include income (before taxes) from all sources, wages, rent from properties, Social Security, disability and/or veteran’s benefits, unemployment benefits, workman’s compensation, help from relatives (including child payments and alimony), and so on. Please check one response.

less than $5,000 $5,000 through $11,999 $12,000 through $15,999 $16,000 through $24,999 $25,000 through $34,999 $35,000 through $49,999 $50,000 through $74,999 $75,000 through $99,999 $100,000 or more don’t know no response

41. Looking back, what guidance and/or information would have been helpful at the time of your partner’s diagnosis and treatment?

__________________________________________________________________________________________________

__________________________________________________________________________________________________

__________________________________________________________________________________________________

__________________________________________________________________________________________________

__________________________________________________________________________________________________

__________________________________________________________________________________________________

__________________________________________________________________________________________________

__________________________________________________________________________________________________

__________________________________________________________________________________________________

Thank you for completing this survey!

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