Abstract

Women with intellectual disability (ID) have similar rates of breast cancer as the general public, but higher breast cancer mortality and lower rates of regular screening mammography. Screening rates are lowest among women who live with their families. Though women with ID often make decisions in partnership with their relatives, we lack research related to family member perspectives on mammography. We conducted a qualitative study of family members of women with ID, with an interview guide focused on health care decision making and experiences, and breast cancer screening barriers, facilitators, and beliefs as related to their loved ones. Sixteen family members underwent semistructured interviews. Important themes included mammography as a reference point for other social and cultural concerns, such as their loved one's sexuality or what it means to be an adult woman; fear of having to make hard decisions were cancer to be diagnosed acting as a barrier to screening; a focus on quality of life; and desire for quality health care for their loved one, though quality care did not always equate to regular cancer screening. Adults with ID are valued members of their families, and their relatives are invested in their well-being. However, families fear the potentially complicated decisions associated with a cancer diagnosis and may choose to forgo screening due to misinformation and a focus on quality of life. Effective interventions to address disparities in mammography should focus on adults with ID and their families together, and incorporate the family context.

Introduction

Adults with intellectual disability (ID) face important health disparities (Krahn. Hammond, & Turner, 2006; Ouellette-Kuntz, 2005), including disparities in primary care access (Wilkinson & Cerreto, 2008), health promotion uptake (Jobling, 2001), and screening and early detection of cancer (Iacono & Sutherland, 2006; Tuffrey-Wijne, Bernal, Jones, Butler, & Hollins, 2006). Regular screening mammography is associated with early detection of breast cancer and increased long-term survival after diagnosis (Kerlikowske, Grady, Rubin, Sandrock, & Ernster , 1995). Women with ID have a similar breast cancer incidence as the general population (Patja, Eero, & Iivanainen, 2001), but have higher rates of breast cancer mortality and significantly lower rates of regular screening mammography (Sullivan, Slack-Smith, & Hussain, 2004; Sullivan et al., 2003). In recent years, public health interventions have successfully raised the rates of regular screening mammography in various vulnerable populations (Peek & Han, 2004), and rates of regular mammography in the United States have risen to over 80% of all women over the age of 50 (Center for Disease Control, 2011). However, similar rises have not been observed for women with ID (Center for Disease Control, 2011; Sullivan et al., 2004). Barriers to mammography have been noted for women with disabilities of all kinds (Courtney-Long, Armour, Frammartino, & Miller, 2011), and women with ID have additional unique, disability-specific barriers (Barr, Giannotti, Van Hoof, Mongoven, & Curry, 2008; Wilkinson, Deis Bowen & Bokhour, 2011). Women with ID who live with their families are least likely, out of all women with ID, to receive regular mammography (Wilkinson, Lauer, Fruend, & Rosen, 2011).

While community inclusion and family involvement are overall highly beneficial for adults with ID (Grant & Whittell, 2000; Orsmond, Seltzer, Greenberg, & Krauss, 2006), health disparities may be intensified for adults who live with their families. For example, adults who live with family are more likely to be obese and less likely to report regular physical activity (Rimmer, Riley, Wang, Rauworth, & Jurkowski, 2004). In addition, a Swiss study found a higher incidence of dental caries (tooth decay) among adults with ID who lived with family as compared to their counterparts in institutional settings (Gabre & Gahnberg, 1994). In a more recent study, adults who lived with their families were more likely to receive needed assistance with daily dental hygiene than their institutionalized counterparts, but were less likely to receive regular preventive care from a dentist (Pradhan, Slade, & Spencer, 2009). However, family relationships are also an important source of support for people with ID (Orsmond et al., 2006).

Though their relationships with their loved one with ID are often a source of great joy and fulfillment (Greer & Grey, 2006), family members report increased caregiver stress (Cummins, 2001) and may be at increased risk of depression (McConkey, Truesdale-Kennedy, Chang, Jarrah, & Shukri, 2006). This caregiving relationship is thought to impact the health of both parties (Orsmond et al., 2006). However, while the impact of caregiving on the health of relatives of people with ID has been studied, we do not know how these relatives perceive primary and preventive care as related to their loved ones. We also don't know how their relatives' ideas and perceptions related to health impact adults with ID.

Like all of us, adults with ID often make health decisions in the context of their families and may seek assistance from loved ones in health care decision making. For some individuals with ID, family members assume increased responsibility for health care, and are often important to the context in which individuals make health care decisions. Therefore, it is crucial to understand family member perspectives related to health of adults with ID. We undertook a qualitative study of family members of women with ID and their perspectives related to breast cancer screening and their loved one. We were particularly interested in exploring family members' attitudes toward preventive health care and decision making for their relative, their perspectives regarding what constituted high-quality health care for their relative, and their ideas regarding barriers and facilitators of mammography.

Methods

This qualitative study explored family member perspectives on mammography as related to their relatives with ID. After a thorough literature search, we developed a semistructured interview guide concerning the participant's relationship with their relative with ID and level of involvement in their life, their family's approach to health care decision making, their own informational needs related to mammography, and their perceptions of cancer screening as related to their relative. We chose semistructured interviewing using prompts due to the exploratory nature of this study. Research participants are vulnerable to therapeutic misconception, or the false belief that study participation equates to receiving medical care. In order to avoid suggesting that health care of any kind was being provided, all interviews were conducted by a nonphysician member of the research team, who clearly identified herself as such and stated that she was unable to answer any medical questions or provide medical advice. Interviews were transcribed verbatim and de-identified during transcription.

Participants were recruited through email and newsletter announcements from local agencies serving adults with ID and their families. The announcements invited interested family members to contact the research coordinator, who scheduled interviews as convenient for participants. We defined family member as “related to an adult with intellectual disability by blood, marriage, or adoption.” Family members were invited to bring their relative with ID, though only one participant elected to bring her daughter.

Results were analyzed using content analysis and grounded coded theory. Each transcript was coded independently line by line by two or more members of the team. The team then met to discuss coding, and intercoder disagreements were addressed until consensus was reached. This iterative process was used to create and revise a codebook and identify second-level themes. Qualitative software (Nvivo 10) was used to manage the codes.

This project was approved and monitored by the Boston University Medical Campus institutional review board. All names of participants and relatives are pseudonyms.

Results

We conducted 16 interviews, generating over 90 pages of single-spaced transcripts. Interviews ranged from 18 minutes to over 2 hours in length, with an average length of approximately 30 minutes. Participants included three sisters, 12 mothers, and a mother-daughter pair (see Table 1). Relatives of participants ranged in age from mid-twenties to mid-fifties, and slightly less than half had already received at least one mammogram. Saturation—the point at which new themes cease to emerge—was reached by interview 13.

We identified several important themes, including the idea that, for many families, mammography carried symbolic meaning. Though all families wanted quality care for their relative, families varied in their definition of what constituted good care. Many families worried that cancer screening and diagnosis might cause unnecessary suffering, an idea that often conflicted with values prioritizing their relative's quality of life. Finally, participants named barriers and facilitators of mammography and discussed mammography experiences as examples of their relatives' positive traits, such as resiliency and strength.

Mammography as More Than Just a Screening Test

For many participants, mammography referenced concepts that were bigger than a simple screening test for a common cancer. For some participants, mammography was a statement about womanhood and their loved one's sexuality. For example, a mother described how, if left to his own devices, her husband would never think to schedule a mammogram for their daughter:

I don't think it would occur to him because he doesn't think of her in that way. She's 26 but I don't think he thinks of her being 26 because it's not how she presents. So the things that would happen to a grown adult woman … I don't think would necessarily occur to him. (Mother)

For this family, the idea of their daughter as a sexually mature woman was uncomfortable. For other participants, having a mammogram was seen as a way for their loved one to have common experiences with other women. Through this common experience, women with ID were viewed as belonging to a sisterhood, just like everyone else, which was viewed as especially important for women with ID.

And I think this idea of creating sort of this sisterhood about, like the woman in the family not to be shy about saying “you know, I do this, and it's really important.” Because I think for Lori especially that really helped a lot. It's sort of like we are all in cahoots together, you know all of us who are women. And that, she just she wants to be part of that group. And being part of that group means you have to have some of these tests [mammogram and Pap test]. (Mother)

So I made the recommendation to myself, that maybe when the time comes, she could come with me. It's like she's participating in something, and she's not isolated. It's not her by herself. She's participating in something, and she's part of it. It's like “ok, here's what's happening, here's your turn” you know, so sort of, there's a participation in something. (Mother)

Finally, for some mothers of daughters who were currently too young for mammography, breast cancer screening referenced fears related to their own mortality and resultant changes for their loved ones. For example, when asked about mammography, one mother of a woman in her late 20s replied:

I think my biggest concern is not today, but 40 years from now, 50 years from now, because I expect she will be around, but I don't expect that I'll be around. And I do think about, the big things that I worry about, the things that keep me up at night are what her life is going to be like when she is older. (Mother)

Screening Decisions

As described above, participants ascribed quite a bit of meaning to the mammography decision. Many participants discussed wanting to make the right choice, and the difficulty of medical decision making on someone else's behalf. For example, as one mother of a woman who is nonverbal stated:

It's hard to be making decisions for someone who can't tell you what they would want. (Mother)

However, other participants saw access to cancer screening for adults with ID as a civil rights issue. For example, as one mother who had recently lost her husband to cancer said:

The system just really overlooks the people that we're talking about. And I think that's an incredible injustice. We just have to figure it out together. How do we help women so that they can participate in these potentially lifesaving tests that are available today? (Mother)

This opinion was shared by many participants.

[S]he deserves the best medical care possible, to keep her healthy and active, and able to enjoy her life. (Mother)

Interestingly, even participants who had chosen to forgo mammography for their loved ones shared the sentiment, implying that quality health care was important to families, whether or not they defined mammography as quality health care.

I think it's very important and I think that whatever healthcare, whether it's preventive or treatment or diagnosis, is available to anybody, then people with intellectual disabilities should have it as well … I think we need to be very proactive around making sure that people with any disability gets access to the exact same health care that everybody else does. And she may choose not to [get the mammogram]. And that's as some people do. But it should be offered and it should be expected that she is going to be entitled to have it and that insurance will pay for it. (Mother)

Many participants described their decision making as a joint endeavor between themselves and their loved one. For example, as one mother described:

It's almost like when we talk to medical people it's a symbiotic … Symbiotic because you are talking for them, and you say “we” and then you say “I can't believe I just said that, but….” (Mother)

Quality, Not Quantity

Participants cared deeply about their relatives, and took their responsibility to their loved one seriously. For many participants, this translated to a focus on quality of life. The desire to avoid causing suffering often impacted their decision making regarding medical procedures and care-seeking behavior. For example, when Maura's sister was diagnosed with a condition that could be corrected surgically, the family weighed the benefits against the potential for suffering:

We could repair this, but the recovery would be at least 6 months and it would be painful and she wouldn't understand why. And bottom line is, why would you do that? The goal isn't to prolong her life, but to keep her comfortable … our family has always felt that we want her to be comfortable but we didn't want to do dramatic things to her. (Sister)

Likewise, another sister made similar decisions when her loved one was diagnosed with a melanoma:

And Pat has always had a lot of moles on her back and there was one that was you know, was clearly serious. So we took her to a doctor and he removed it, very nice surgeon. And it was cancer. But then there was, again, there was the discussion about do you do lymph nodes and all this other stuff, and he said “it's painful, does she understand?” … So, you don't do as much, at least our family doesn't do as much. We're not as aggressive as we would be if it was me, or my husband. (Sister)

A significant percentage of participants shared stories of medical scares when their relative was young. This story, from Chris, a mother, is representative of others:

I almost lost her a couple times because of very significant, very serious illnesses, and we have always made decisions that we thought were right for Mona, for instance not doing surgery on her hip that was dislocated, we decided not to do that. We always felt “what would Mona want?” (Mother)

Mammography and What If?: The Need for Accurate Cancer Information

This focus on quality of life, rather than quantity, was often associated with the fear that mammography might lead to cancer diagnosis, which would in turn lead to additional suffering for their relative. In addition, participants discussed the fear of finding cancer as a reason to delay or decline screening.

I haven't followed up on it, I actually haven't even talked to Molly about it. And part of it is, it's just hard to understand, and it's just sort of, you know you're always thinking about well what if it shows something, then what would we do, and I haven't acted on it. (Mother)

I was thinking about that this morning, like “why are we doing this?” And I mean, I guess if we got it early, that would be good, and we could just remove … but, I don't know if we'd do a mastectomy or that sort of stuff … I don't know. It might be too traumatic for her. (Sister)

So while participants feared that cancer screening would identify cancer, they were also afraid that a cancer diagnosis would also open up more issues, and different issues than in the general population. For many participants, cancer screening immediately referenced cancer treatment. Many participants related stories of friends, family members, and coworkers who had experienced breast cancer, including women who died of the disease. Most participants assumed that current cancer treatments would be similar to treatments their friends/relatives had undergone:

My paternal grandmother had breast cancer, but quite late in life … I know a number of people who have been impacted and who have died. And I also am very wary of over treatment, and overly aggressive treatment. (Mother)

Most participants who related stories of breast cancer immediately thought of their relatives' ability to withstand treatment.

[M]y mother-in-law passed away at 60, but had ovarian cancer and so that was a number of years ago, before she was born, but would we be screening? So I've been thinking a lot about that, and how would we know, because I wouldn't want to put her through, because of her lack of ability to verbally let us know, would she really want to go through chemo? Or do radiation? Or go through [treatment]? I think my husband would say the same thing; he wouldn't want that either. (Mother)

Participants also worried about the impact of treatment side effects on loved ones who might not be able to understand the rationale for treatment:

So one of the first things I think about, one of her joys in life, Sophia really enjoys good food. And one of the things that really upsets me is the thought that the nausea and the things that come with breast cancer, well, any cancer treatment … and how do I explain to her that she's not going to enjoy her food? She has joys in life, and how do I explain to her that the joys she has in her life right now are going to be affected, let alone the discussion of the prognosis? (Mother)

For other participants, a more nuanced understanding of modern cancer treatments led to a willingness to consider treatment for their relative. For example, here a mother who works in a healthcare field describes her understanding of breast cancer treatment:

I think that if it was something that was, you know, tamoxifen or some of the other agents that are out that wouldn't be, that wouldn't cause that many side effects, that would be alright. Or a lumpectomy, something that would be, it wouldn't be extensive, I would consider that. (Mother)

Barriers, Facilitators, and Resiliencies

All participants were asked to describe barriers to mammography, which are detailed with representative quotes in Table 2. Barriers included fears about discomfort, the need for extra time, and behavioral challenges. Participants were also asked about means of making mammography a positive experience for their relatives, which are detailed in Table 3 with representative quotes. In general, family members felt that their relatives would need additional supports in order to successfully complete a mammogram. Examples of such supports include added time, additional explanation about the process from both physicians and mammography technicians, premammography tours of the facility, opportunities to witness a relative having a mammogram, sedation, and/or presence of family members. For many participants, being present (or knowing that their loved one was receiving support) was paramount:

But again, you are right there with her and you calm her and you hold her and you talk with her, and she gets through these things. That's how these screenings happen—you're right there with her and she's just looking at you and she's like “ok. If you are here with me, then it's gotta be ok.” (Mother)

Several participants described educational needs related to mammography and their loved one's learning style:

I don't know that she understands what we're saying. But because she learns by repetition my sense is that, number one, because I know she has strong receptive abilities and number two because eventually I know that things kick in … [E]ventually in her lifetime, she'll get it. (Mother)

This mother goes on to suggest educational materials that her daughter could watch repetitively, such as a DVD or video:

Even if, and she has a tendency to watch a particular video many times if it's a favorite … not that this is going to become a favorite, but you know that whole reference to you can do something 50 times and then all of a sudden it kicks in … If she sees it once in person, and then maybe you can watch it on a video, a Youtube, and then eventually once it's time, it's like it's familiar to her. (Mother)

In addition, several participants described their loved ones' resilience, naming positive traits such as adaptability and strength:

And I think it's gonna be difficult, but I think I, you know, she has learned to adapt and do things in her life that are important. And we work up to it. (Mother)

I hate having mammograms, and I was sort of like carrying that thought with me, and I thought “oh she's going hate this and it's going be really hard, and we are going to have to force her to do it.” And we got up to the plate, and this very nice young woman came out, and Lori said “okay you can wait here.” And she went with the woman and she did a great job. She did a really, really good job. (Mother)

Discussion

This qualitative study shed light on family members of adults with ID and their perceptions regarding breast cancer screening and health care decision making for their relative. Several interconnected themes emerged, including mammography as a reference point for other important life/family issues; the importance of access to quality care, as defined by the family; and fear of a cancer diagnosis that would raise potentially complicated issues and decisions regarding cancer treatment. Loved ones with ID were clearly valued members of the family, and many relatives felt protective of their family member, often questioning their ability to withstand cancer screening and potential treatment. However, many themes reflect denial, with relatives seeming to hesitate to conceive of their loved one as at risk for breast cancer, despite high levels of breast cancer awareness among the general population (Harvey & Strahilevitz, 2009). Our findings suggest that mammography is viewed as much more than a simple screening test, and the complex and often emotional issues that arose when discussing breast cancer screening highlight the need for advance preparation and interventions targeting women with ID and their families to address breast cancer disparities.

Relatives of adults with ID assigned meanings unrelated to breast cancer to mammography, such as mortality, doubts about their relatives' ability to withstand medical treatment, discomfort with loved ones' sexuality, and belonging to a sisterhood. We know that beliefs about mammography influence utilization, as several studies have noted a correlation between health beliefs and likelihood of mammography (Russell, Swenson, Skelton, & Shadd-Steele, 2003; Thomas, Fox, Leake, & Roetzheim, 1997). Cancer screening's association with other topics is not unique to family members of women with ID. For example, in one study of Mexican-American women, researchers found that mammography referenced gender roles and cultural ideals about what constitutes a “proper” woman (Borrayo & Jenkins, 2001). The authors suggest that effective interventions incorporate these reference points.

Among the meanings assigned to mammography was sisterhood and belonging. In recent years, the Pink Ribbon Campaign has been among survivor-driven and public health efforts to create a community around breast cancer (Harvey & Strahilevitz, 2009). Effective interventions targeting African-American populations have used concepts of sisterhood and solidarity as motivators for screening, with “do it for your loved ones and community” type messaging (Fowler, 2006; Kidder, 2008). As individuals with ID often experience stigma and discrimination (Cummins & Lau, 2003; Jahoda & Markova, 2004; Kock et al., 2012), we theorize that messages of sisterhood and belonging may be especially important for this population. Stigma is known to have negative consequences on both health (Dagnan & Waring, 2004) and health care access (Krahn et al., 2006; Wilkinson, Dreyfus, Cerreto, & Bokhour, 2012). In addition, relatives of people with ID may experience “stigma by proxy” on behalf of their relative (Ali, Hassiotis, Strydom, & King, 2012; Mak & Cheung, 2008), and may also benefit from interventions that frame their loved one as belonging to a sisterhood. This may be especially true for older relatives who lived through the societal shift from institutionalization to mainstreaming (Trent, 1994). In addition, the legacy of social exclusion of people with ID might be important in understanding relatives' denial of their loved one's breast cancer risk, despite the high prevalence of breast cancer. This denial may have its origins in stigma and outdated beliefs that women with ID are somehow biologically different from other women (Carlson, 2001).

Relatives often framed quality health care as an important human right for people with ID. This concept aligns with the self-advocacy movement, which focuses on the rights of people with ID to participate fully in society (Caldwell, 2010). However, though relatives perceived access to quality care as a human right, they did not necessarily perceive routine mammography as important to quality care. Some participants identified this lack of perceived importance as related to their fear that their relative might suffer during a mammogram. This focus seemed to minimize the possibility that their loved one might develop breast cancer or benefit from early detection.

Fear of finding cancer has long been described as a barrier to cancer screening (Borrayo, Buki, & Feigal, 2005; Wardle, Taylor, Sutton, & Atkin, 1999). However, family members of adults with ID expressed additional worries about cancer treatment and the decision-making process it might entail, especially in individuals who lacked the verbal ability to make their wishes known. Relatives also worried about their loved ones' ability to withstand treatment and to comprehend and manage the experience and side effects of cancer treatment. Family members felt responsible for ensuring their loved one's quality of life, which they prioritized over survival at any cost. This fear was compounded by inaccurate perceptions regarding modern breast cancer treatments, which suggests a need for accurate cancer information among families with ID.

Participants conceptualized decisions related to the health of their loved one as family decisions. This finding is in line with research exploring the importance of close relationships in the lives of people with ID (McConkey et al., 2006), as well as research demonstrating the positive impact that people with ID have on their families (Stainton & Besser, 1998). In addition, several family members described mammography as an experience of realizing their relative's resiliency. Resiliency in people with ID is an important yet understudied phenomenon (Grant, Ramcharan, & Flynn, 2007). This suggests that successful interventions will contextualize cancer screening as a family decision, and will capitalize on the resiliency of people with ID and their families.

Limitations of this study include a small sample size. Though efforts were made to include urban and suburban participants, we were unable to reach families living in rural areas, who may have unique needs. In addition, this study was conducted in a state with higher-than-average mammography utilization and near universal health care coverage. This state was selected in order to remove insurance status and access to mammography as confounding factors. However, families in other states may face these additional barriers. In addition, this study used qualitative methodology to identify issues and barriers. Further quantitative and mixed methods work would help evaluate the scope of these problems, and would evaluate generalizability to different populations. Finally, though we strove to recruit a diverse sample, our participants were largely White and of moderate to higher incomes. We theorize that the problems they identified may be exacerbated in lower income families, though further research is needed.

Women with ID face significant disparities in breast cancer mortality and breast cancer screening utilization as compared to their peers without disabilities. Women with ID who live with their families are less likely to access regular mammography. This study explored this disparity from the perspective of family members. Our findings suggest that cancer screening decisions are often made in the context of families and reference complex concepts. Therefore, successful interventions to address cancer screening disparities among adults with ID should be targeted to the family as a whole. In addition, successful interventions should recognize that, for many families with family members with ID, mammography decision making is involved and complex, and obtaining a mammogram for a loved one with ID can take advance preparation and deliberation at multiple levels. Effective interventions will recognize and celebrate the complex family and decision-making environment. These findings also suggest that there is a strong need for educational interventions targeting families. In the past, DVD-based interventions have been used to deliver cancer screening information to adults with ID and have been found acceptable and implementable (Greenwood, Wang, Bowen, & Wilkinson, 2014). As requested by families, DVD-based interventions targeting adults with ID and their families that contextualize cancer screening decisions may be appropriate for addressing this disparity.

Acknowledgments

Previously presented in part as: Greenwood, N. W., Dreyfus, D., & Wilkinson, J. (2013, November). Increasing the rate of regular mammography screening for women with intellectual disabilities: Family member perspectives. Poster at the annual conference of the North American Primary Care Research Group, Ottawa, Canada.

We would like to thank Larry Culpepper, Janet Rico, and Ruth Freedman for their expert consultation, and Jewish Family and Children's Services, Susan Parish, and Michael Weiner for their help with recruitment. Dr. Wilkinson's time is funded in part by career development award K07 CA134547 from the National Cancer Institute. We have no conflicts of interest to disclose.

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Author notes

Nechama W. Greenwood and Deborah Dreyfus, Department of Family Medicine, Boston University School of Medicine; and Joanne Wilkinson, Department of Family Medicine, Boston University School of Medicine, Department of Community Health Sciences, Boston University School of Public Health.