Abstract

Women with intellectual disability do not receive cervical and breast cancer screening at the same number as women without disabilities. Numerous barriers to receipt of screening have been reported by individuals with intellectual disability, paid caregivers, nurses, and other medical professionals. This study utilized semi-structured qualitative interviews to assess barriers to care from the perspective of female familial caregivers (n  =  32). Caregivers reported a number of barriers to care including not knowing or not believing the exam was needed for their family member and discomfort during exams. Caregivers also described enablers to screening. The most common response to what enabled the woman with an intellectual disability to receive the exam was preparation prior to the exam. A significant portion of the sample of family caregivers lacked knowledge about the need for cervical and breast cancer screening by women with intellectual disability. Policy recommendations are discussed.

Early detection of cervical and breast cancer substantially reduces mortality and morbidity. Extensive use of Pap screenings to detect cervical cancer and precancerous cells has been gratifyingly effective. Once the leading cause of death among U.S. women, cervical cancer is now preventable and completely treatable if detected early. Cervical cancer death rates have plummeted over the past 50 years mainly due to Pap tests (National Institutes of Health, 2010). Breast cancer is the second most commonly diagnosed cancer among women, and the second leading cause of women's cancer death (National Cancer Institute, 2010, October). However, mammography can reduce cancer mortality up to 20% (American Cancer Society, 2010). Screening guidelines in place at the outset of this study recommended mammography screening annually for women ages 40 and older and Pap tests every 1 to 3 years beginning at age 21 (Smith et al., 2011).

Despite the established effectiveness of cervical and breast cancer screening, there is compelling evidence that women with intellectual disability are not screened at recommended rates, and they are significantly less likely than their peers without a disability to receive screenings for cervical and breast cancer (Havercamp, Scandlin, & Roth, 2004; Iacono & Sutherland, 2006; Parish & Saville, 2006).

Women with intellectual disability face numerous barriers to adequate and appropriate care such as preventive health screenings. Problems with communication or a lack of knowledge or understanding of a procedure may cause women with intellectual disability to not seek or be unable to seek appropriate care (Brown & Gill, 2009; McIlfatrick, Taggart, & Truesdale-Kennedy, 2011; Sullivan, Slack-Smith, & Hussain, 2004; Taggart, Truesdale-Kennedy, & McIlfatrick, 2011; Wilkinson, Deis, Bowen, & Bokhour, 2011). Women may also feel fear, anxiety, or embarrassment related to exams (Sullivan et al., 2004; Taggart et al., 2011; Truesdale-Kennedy, Taggart, & McIlfatrick, 2011; Tyler, Zyzanski, Panaite, & Council, 2010). This may be especially true for exams such as clinical breast exams, mammography, and Pap tests when areas of the body that are typically deemed “private” are touched. Given the high rates of sexual assault against women with intellectual disability, fear or anxiety may stem from past trauma (Brown & Gill, 2009). In one study, 76% of responding nurses reported that cancer-screening exams could not be performed without some type of intervention because of the person with an intellectual disability's behavior or “lack of cooperation” (Tyler et al., 2010).

Women also face barriers related to health care providers and their families. Pejorative attitudes about people with intellectual disability may hinder doctors from recommending exams or family caregivers from advocating for the receipt of the exam (Brown & Gill, 2009). In addition, doctors or caregivers may feel Pap tests are unwarranted because they believe the woman is not sexually active. There is evidence that women with intellectual disability receive some preventive health care, including flu shots and physical exams, but cervical and breast cancer screenings are often not included in these exams (Parish & Saville, 2006; Tyler et al., 2010). When these procedures are recommended, family members or guardians may refuse the exam on behalf of the woman (McIlfatrick et al., 2011; Tyler et al., 2010).

The majority of adults with intellectual disability live at home with their families (Fujiura, 1998). Family caregivers are often intimately involved in the management of the health care of individuals with intellectual disability. Family caregivers may assist with health maintenance, scheduling appointments, travel to and from appointments, communication with the nurse or physician, and follow-through with physician recommendations (Parish, Moss, & Richman, 2008). Because of challenges related to these issues, some adults with intellectual disability may be dependent on family caregivers for their medical needs. Therefore, family caregivers play a critical role in health care access and utilization (Parish et al., 2008).

However, the existing research has found that women with intellectual disability who live at home with family caregivers do not receive recommended screenings at the same rate as women with other living arrangements. Lewis, Lewis, Leake, King, and Lindemann (2002) found that 25% of the women in their sample who lived at home with family or friends had received a Pap test within the previous 3 years. This was significantly lower than women living alone (64%) and women living in community care facilities (45%). Previous research on barriers to such care has relied on interviews with individuals with intellectual disability (Brown & Gill, 2009; Kopac, Fritz, & Holt, 1998; Parish et al., 2008; Truesdale-Kennedy et al., 2011; Wilkinson et al., 2011), paid staff (Kopac et al., 1998; Sullivan et al., 2004; Taggart et al., 2011), or nurses and other medical professionals (McIlfatrick et al., 2011; Taggart et al., 2011; Tyler et al., 2010; Wilkinson, Dreyfus, Cerreto, & Bokhour, 2012). Less is known about the perceived barriers to care from the perspective of the family caregiver.

Given the evidence of inadequate rates of cervical and breast cancer screening for women with intellectual disability and existing gaps in the research literature related to barriers to such care, the present study addressed the following research questions: (a) What are family caregivers' perspectives on why women with intellectual disability do not receive cervical and breast cancer screening? (b) What are family caregivers' perspectives on the comfort women with intellectual disability have with respect to cervical and breast cancer screening? (c) What do family caregivers feel are the best ways to facilitate screening for women with intellectual disability? (d) Do family caregivers feel that their women family members with intellectual disability receive adequate health care? and (e) Are family caregivers knowledgeable about the need for cervical and breast cancer screening among women with intellectual disability?

Method

The findings reported here are part of a larger study that tested and refined Women Be Healthy (Lunsky, Straiko, & Armstrong, 2002), a psycho-educational program designed to increase cervical and breast cancer screenings for women with intellectual disability. A randomized control trial of Women Be Healthy was conducted across 21 sites in one southeastern state in the United States. The method and findings from the randomized control trial of the intervention are described elsewhere (Parish, Rose, Luken, Swaine, & O'Hare, 2012).

The current study aimed to elicit the perspectives of family caregivers (N  =  32) of the female participants in the larger Women Be Healthy randomized controlled trial. The research presented here used a semi-structured, qualitative interview design. The research protocol was approved by the team's university institutional review board.

Sample Recruitment and Selection

Female caregivers were eligible to participate if they lived with a woman enrolled in the larger study testing Women Be Healthy (Lunsky et al., 2002). From a sample of 179 women with intellectual disability enrolled in the larger study, 87 reported they lived at home with at least one female caregiver. These Women Be Healthy participants were sorted by race and ethnicity in an effort to ensure a racially and ethnically diverse sample. In total, 52 Black, 32 White, one Asian, one Native American, and one Latina caregiver composed the original full sampling frame. The Black and White women were randomly assigned numbers in Excel, and the first 25 from each group were chosen. The remaining three women were not randomized and were all included in the sample. Thus, a total of 53 caregivers was eligible to participate in the study.

Study procedures to obtain consent and assent from women with intellectual disability to enroll in the larger study are described elsewhere (Swaine, Parish, Luken, & Atkins, 2011). Potential respondents were contacted by phone. The research aims were first described to the women with intellectual disability enrolled in the Women Be Healthy study. We sought consent from the women before inviting their caregivers to participate in the study. Two women declined to provide consent, so no contact was made with their family caregivers. Two additional women were unable to provide verbal assent over the telephone and were thus excluded. Finally, two more women were excluded because of their current living arrangement outside of their family caregivers' homes for more than one year. One woman was excluded because she did not have a female caregiver.

Once consent was obtained from the women with intellectual disability, their caregivers were contacted to join the study. Five caregivers declined to participate, citing time constraints. Nine caregivers were excluded after more than five failed contact attempts. Thus, a total of 32 caregivers consented and participated in the study (60% response rate). Table 1 describes the sample of family caregivers, and Table 2 describes the care recipients (women with intellectual disability).

Table 1

Caregiver Sample Description (N  =  32)

Caregiver Sample Description (N  =  32)
Caregiver Sample Description (N  =  32)
Table 2

Characteristics of Family Members with Intellectual Disability (N = 32)

Characteristics of Family Members with Intellectual Disability (N = 32)
Characteristics of Family Members with Intellectual Disability (N = 32)

Measure and Procedure

A 50-question, semi-structured interview guide was used to obtain caregiver perspectives. The interview guide was pilot-tested and revised prior to its use with the family caregivers. All of the caregivers were interviewed individually on the phone. Each interview lasted approximately 20 to 60 min and was digitally recorded, transcribed, and double-checked for transcription accuracy. Field notes were also compiled for each interview. Three sections of the interview guide focused on health care access and barriers of the women with intellectual disability as well as family caregiver's knowledge of cervical and breast cancer–screening guidelines. One section elicited information on the caregiver's own health care. The final section collected demographic information. One researcher conducted all of the interviews. Study participants received $20 gift cards to compensate them for their time.

Analysis

Digital recordings of the semi-structured interviews were transcribed and reviewed for accuracy. Interview responses were coded into an Excel workbook. Descriptive statistics were generated using Stata 11 (StataCorp, 2009). Qualitative data from the transcriptions were coded with ATLAS.ti (Version 6.2). Thirteen questions were of particular interest to address the research questions posed above. The first three questions elicited caregiver perspectives on why the women with intellectual disability did or did not receive clinical breast exams, mammograms, and Pap exams, respectively. The subsequent three questions asked caregivers to describe their family member with an intellectual disability's experience in receiving these exams and reasons why the women were or were not comfortable. The next three questions addressed caregiver's suggested methods to make clinical breast exams, mammograms, and Pap tests easier for their family member. A tenth question asked caregivers if the woman with an intellectual disability received the health care she should, and why or why not. Finally, three questions assessed caregivers' knowledge of recommended screening guidelines. These responses were grouped into general themes.

Results

Sample

Of the 32 caregivers who participated, the most common relationship (78%) to the woman with the intellectual disability was the mother (see Table 1). Other caregivers were related to the women with intellectual disability as grandmothers, sisters, and one aunt. Over half (58%) of the family caregivers were married, and nearly a quarter (23%) were divorced or separated. Most of the caregivers were aged 50 years and older, with the majority falling in the 50–59 years range (42%). Few of the caregivers reported any disabilities of their own. However, more than a quarter (26%) reported chronic health conditions such as diabetes. Almost all of the caregivers described themselves as either non-Hispanic White (52%) or non-Hispanic Black (45%). The sample was evenly split between caregivers living in households with incomes above and below $25,000 per year. All Women Be Healthy study participants lived with the caregiver-respondents, with the exception of two who had recently moved out. In addition to the women with intellectual disability, the majority of family caregivers lived with a partner (29%) or a partner and children (26%). Nearly one-fifth of the caregivers lived alone with the woman with intellectual disability.

The characteristics of the women with intellectual disability related to the caregiver respondents are described in Table 2. Most of the women with intellectual disability were aged 20–29 (50%) or 30–39 (25%) years. Nearly all the women (94%) had a mild or moderate intellectual disability. Similar to the caregiver sample, 50% of the women with intellectual disability were non-Hispanic White and 47% non-Hispanic Black. Of the women for whom insurance coverage information was available (n  =  29), 86% were covered by public health insurance. Health insurance type was collected from the women's medical practices as a part of the larger study.

Clinical Breast Exams

The majority of family caregivers (n  =  24, 83%) reported that the women with intellectual disability received clinical breast exams from a physician or health care provider. Nearly 80% of these women (n  =  19) had received a breast exam within the past year. The remaining participants whose caregivers responded to the question (n  =  5) did not receive clinical breast exams for a variety of reasons (see Table 3). The most common reason for nonreceipt of any procedure was the caregiver's belief that the exams were unnecessary. One caregiver said, “I think I just thought because [my daughter] had a hysterectomy she just doesn't need to go in. But, I didn't think about breast care, to be honest. I guess that's a failure on my part, not necessarily a physician's failure. I didn't think about breast exams. I get away from the gynecologist's visits because she had the hysterectomy.” One caregiver noted her sister did not receive clinical breast exams because of her history of sexual abuse. As a result, the woman with the intellectual disability felt uncomfortable with the exam.

Table 3

Caregiver-Reported Barriers and Enablers to Cancer Screenings for Women with ID

Caregiver-Reported Barriers and Enablers to Cancer Screenings for Women with ID
Caregiver-Reported Barriers and Enablers to Cancer Screenings for Women with ID
Table 3

Continued

Continued
Continued

Many of the women with intellectual disability who did receive clinical breast exams were reportedly comfortable with them. Family caregivers offered three primary reasons the women with intellectual disability were calm when receiving a clinical breast exam (see Table 3). First, the doctor and/or family caregiver explained the procedure. Second, the doctor's gender was female. Finally, the woman with intellectual disability was familiar with the doctor.

Nonetheless, family caregivers reported some women with intellectual disability were uncomfortable with clinical breast exams (see Table 3). Many of the women were just generally shy or embarrassed about being touched. One caregiver noted her daughter told her the exam was “icky.” Caregivers often linked discomfort with being touched to a lack of sexual experience. For example, one caregiver said, “I am in the room with [my sister]. They talk to her. She is just real shy. It's because she is not [sexually] active, [the exams] are always uncomfortable to her.”

Caregivers identified a number of ways in which clinical breast exams could be improved for women with intellectual disability. First, caregivers emphasized the importance of being in the room with the participant during the exam. Multiple caregivers stated they would not allow an exam outside of their presence. Having a female doctor and familiarity with the physician were reported to facilitate the exams. One respondent spoke for many when she summarized how health care providers could make the exam easier for her daughter, “… just talk to her. Explain in detail what is going to happen. You know, she is always being taught that people should not touch her in places that are private. So it is hard probably for her to understand the difference in a doctor touching her and someone who is not supposed to touch her.”

Mammograms

Eight women with intellectual disability were aged 40 or over at the time of data collection. Of those eight women, 75% (n  =  6) had received a mammogram according to caregiver report. Caregivers for the two remaining women reported the women had not received a mammogram because of the discomfort of the exam or because the caregiver had yet to schedule the exam (see Table 3). We note that the woman whose exam had yet to be scheduled was 42 years old. For those women who did receive mammograms, more than half had received the exam during the past year (n  =  5), and family caregivers stated the participants were comfortable with the exam. These reasons centered on the caregivers preparing the women for the exam. One caregiver explained, “It helped to talk [my daughter] through it … what they are going to do.” However, two of the women with intellectual disability were reportedly uncomfortable with the exam because the procedure was unexpected for them and they believed it was painful. A mother described her daughter's experience: “[S]he didn't know what to expect. She says it's kind of tight. Real tight! She didn't expect that.” Caregivers suggested less painful exams would make mammograms easier.

Pap Tests and Pelvic Exams

The majority of the caregivers reported that their family members with intellectual disability received Pap/pelvic exams (n  =  24; 77%). However, only half (n  =  12) of these women had received an exam within the past year. Caregivers offered various reasons for nonreceipt of Pap/pelvic exams (see Table 3). The most common reason (n  =  8) was that the participant was not sexually active. One caregiver said, “[The doctor] said [my daughter] wasn't sexually active, not dating, nothing like that, and having sex. It wasn't really necessary to put her through it.” Some caregivers also believed the exam was not necessary for their family members with intellectual disability. One caregiver noted, “Well, [the doctors] haven't recommended it, but me personally, you know, I didn't want [my daughter] to go through all of that.” Other caregivers claimed the participants had received hysterectomies and thus did not need further Pap tests.

For many of those women who did receive Pap tests, an explanation of the procedure from the doctor or caregiver was reported to increase her family member's comfort with the procedure (see Table 3). Some caregivers reported their presence alone in the room calmed the participants. For example, one mother described her daughter's experience: “She was a little afraid because she's never been touched down there, in that area. With me being in the room, I kind of ease her down, as far as being afraid or scared of the doctor, because she doesn't want anyone to touch her in that area.” Other caregivers used specific relaxation skills to comfort the participants during the exam. One caregiver explained, “[I]t was so foreign to [my daughter], going in there. No one had touched her there.… We just talked to her, ‘It's going to go fine. Just breathe in.’ And just repeating the phrase ‘breathe’ just to keep her calm, it worked for me.”

Numerous caregivers reported that women with intellectual disability who did receive pelvic exams were uncomfortable (see Table 3). According to the caregivers, the primary reason for their discomfort was general embarrassment or shyness with the private nature of the exam. Other caregivers elaborated, explaining that the discomfort was because of the women's lack of sexual experience. A caregiver noted, “I just think that [my daughter has] never been … intimate with anyone, and it's just awkward for her.” Other women found the exam to be painful: one caregiver shared that the doctor had to use a pediatric speculum for her daughter. Other participants actively fought against receiving the exam, as a caregiver described, “It was a hard time to get [my daughter] to open up her legs, for her doctor to do all of that! She cried, and squeezed up.… [E]very time she goes, the nurse is on one leg and I'm on the other leg.”

Caregivers suggested the most important way to make the pelvic exam easier for women with intellectual disability is for caregivers to remain in the exam room and to use relaxation measures, such as holding the woman's hand (see Table 3). Other caregivers emphasized the importance of adequately preparing the women for the exam and having the doctor adequately explain the procedures. Two respondents reported that the women would need to receive anti-anxiety medications or sedatives to tolerate the exam.

Caregiver Report of Receipt of Adequate Health Care

The majority of family caregivers (n  =  27, 87%) reported that their family members with intellectual disability received adequate health care (see Table 4). They identified their own support and/or education as the most common reason the women were able to receive proper care. One caregiver observed, “I think she does [receive adequate health care], but I think that's because I'm making it happen for her, too.… I am her biggest advocate and I will always make sure she's got the best care.” It was also important to the caregivers that physicians be convenient and available to the women. A mother elaborated why she felt her daughter received adequate care: “If [my daughter is] sick, [the doctors] see her.… You know, I don't have them putting me off until tomorrow.” Caregivers also mentioned reasons such as medical professional competence, access to specialty care, insurance coverage, and available transportation.

Table 4

Caregiver Report of Receipt of Adequate Health Care for Women with ID

Caregiver Report of Receipt of Adequate Health Care for Women with ID
Caregiver Report of Receipt of Adequate Health Care for Women with ID

Approximately 13% of the family caregivers interviewed reported the women with intellectual disability did not receive all the needed health care (see Table 4); the most commonly reported reason was problems with Medicaid coverage. One mother described how her daughter had not been able to be referred for a gynecological issue due to her Medicaid coverage, “[My daughter] complains with her period and her stomach hurting her real bad. So, I had talked to [her doctor] about that and he was going to refer her to a gynecologist. But, because she is on Medicaid, Medicaid won't pay for that unless it's a real medical problem with her period. But it's not been confirmed that it's a medical issue.” Another caregiver, in addition to the loss of her daughter's Medicare coverage, noted an issue with transportation-related costs prevented her from receiving adequate health care, “The only transportation she has is [the public van for individuals with special needs]. They charge her $10 a day to go to work. And like I said, if you're just going to make $350, $370 a month … she has to pay [van service] $200. So she doesn't have anything left and can't even go to work the next week if she wanted to.”

Caregivers' Knowledge of Screening Procedures

Caregivers were questioned to determine their understanding of the recommended schedule for receipt of screenings. Results are shown in Table 5. For clinical breast exams, 50% of family caregivers correctly answered that a woman should typically receive a clinical breast exam yearly. Similarly, 75% of family caregivers of women aged 40 and older correctly reported an annual mammography screening. Finally, 64% of respondents correctly reported guidelines of Pap tests every one to three years depending on age and health history.

Table 5

Accuracy of Caregivers' Knowledge of Screening Guidelines by Exam Type

Accuracy of Caregivers' Knowledge of Screening Guidelines by Exam Type
Accuracy of Caregivers' Knowledge of Screening Guidelines by Exam Type

Discussion

This study was a qualitative investigation of barriers to receipt of cervical and breast cancer screening for women with intellectual disability from the perspective of their female familial caregivers. Caregivers cited a number of reasons that have been supported in previous research on why their family members with intellectual disability did not receive screenings for cervical and breast cancer. A common theme was that the caregiver did not know or did not believe the woman needed the exam. For Pap tests, this may have been because the woman with intellectual disability had previously had a hysterectomy, was not sexually active, or the test was not recommended by the physician. Caregivers also expressed concerns for both cervical and breast cancer screening about causing the woman to be fearful or have discomfort from the exams. Previous research has established that negative feelings related to exams are barriers to care for women with intellectual disability (Sullivan et al., 2004; Tyler et al. 2010). Unique to our study, caregivers also described enablers to care. The most common response across all three exams was that the caregiver or doctor had taken time to explain the procedure prior to the woman receiving care. Caregivers reported that the explanations decreased the women's anxiety and allowed the health care providers to complete the exam. Having a female physician or a physician that the woman was comfortable with was also another commonly reported enabler of receipt of these procedures.

Overall, caregivers reported the women with intellectual disability received the care they needed. Many respondents reported this was the case because they themselves were educated about appropriate health care and advocated on behalf of the woman to receive those exams. Similar to findings from previous research (Parish et al., 2008), this study shows the importance and impact of the caregiver on the health care of adults with intellectual disability.

Limitations

Our study's limitations warrant consideration. First, we employed a relatively small sample, and these findings may therefore not be generalizable to the population of female family caregivers. Second, the women with intellectual disability enrolled in our larger study were recruited from community colleges and disability service organizations. Therefore, the women with intellectual disability were all receiving services of some kind and are likely receiving case management or other related services. Their health care experiences may be dissimilar to women who are not linked to paid services. Third, some women with intellectual disability declined our request to contact their caregivers, and a number of family caregivers did not return phone calls from research staff despite numerous attempts. It is possible these individuals would have provided a different perspective than the caregivers who participated in the interviews. Respondents' willingness to participate in the interviews may indicate that they have increased involvement in the assisting their family member to access health care services. Fourth, we are not able to benchmark respondents' knowledge of cancer-screening guidelines to any sort of national or other indicator, as none exist. It is therefore unclear if respondents' knowledge is representative of the population of family caregivers. Finally, we did not measure family history of breast cancer, which may have a bearing on respondents' knowledge of screening guidelines and their level of engagement in screening mammography of their family members with intellectual disability. Future research could fruitfully explore this issue.

Implications

Despite these limitations, this study provides a number of recommendations for education and care. First, family caregivers frequently reported the women were more comfortable and exams were more successful when procedures were thoughtfully explained to the women. Medical professionals must be aware of barriers to receipt of screenings such as fear, anxiety, and lack of knowledge and attempt to eliminate those barriers through appropriate preparation and education of their patients with intellectual disability. Second, family caregivers need to be knowledgeable about recommended screenings. A number of family caregivers reported that exams were attempted because of their advocacy on behalf of their family member with intellectual disability. Therefore, family caregivers need access to education about preventive screening guidelines to allow them to assist the woman with an intellectual disability in advocating for appropriate care. In addition, similar to physicians, family caregivers play an important role in preparing a woman for an exam as well as supporting her during an exam. Family caregiver education should include components on how to educate women with intellectual disability about breast and cervical cancer screenings and how to assist them in reducing anxiety and fear. This article illuminates the critical role caregivers play in the health care of women with intellectual disability. Therefore, the presence of family caregivers in health education, advocacy, and research seems critically important.

Our study also raised issues related to sexuality and cervical cancer screening. Wilkinson and colleagues (2007, 2008) recommended omitting Pap screenings for women with intellectual disability, citing evidence of low rates of abnormal cytology and low rates of sexual activity. Our study provides evidence that women with intellectual disability are not receiving Pap screenings because of their sexual inactivity. However, women with intellectual disability are at increased risk for sexual assault (Sobsey & Doe, 1991), and given society's negative views about the sexuality of women with disabilities, these women may be less likely to disclose sexual relationships to their caregivers and health care providers. The accuracy of family caregivers' knowledge of the sexual activity of their family members with intellectual disability is debatable. As such, assuming women with intellectual disability are not sexually active is ill-advised. Women with intellectual disability should be educated about and participate in reproductive health care that is appropriate for their health status and age. If cervical cancer screening is ultimately deemed unnecessary, medical professionals should still offer routine gynecological care (Wilkinson & Cerreto, 2008).

Notably, one caregiver reported that her family member with intellectual disability had to be restrained for the Pap test to be performed. Previous research has suggested that resistance by women with intellectual disability during such exams is common (Tyler et al., 2010). Therefore, this example raises important ethical and practice concerns and indicates that increased patient education is warranted. Alternative exam procedures as well as the use of anti-anxiety medication or sedatives could also be considered. In addition, this example raises ethical concerns about the opportunity for women with intellectual disability to consent or decline medical procedures that may be painful or medically unnecessary. Decisions about such care should be collaboratively made by family caregivers and the women with intellectual disability.

Our study's findings illuminate one final recommendation related to the health care providers who ultimately serve and support women with intellectual disability. The present findings strongly indicate the importance of educating, engaging, and supporting family caregivers in cervical and breast cancer screening for women with intellectual disability. However, it must be acknowledged that caregivers face critical barriers themselves. Many of the caregivers in the present sample (and among our wider study sample) had limited health literacy, limited education, and were working multiple jobs. Some caregivers were exceptionally poor, and these families' lack of resources was stark. As such, it behooves the health care provider, health care system, and disability service system to share responsibility for ensuring that their patients with intellectual disability are educated and adequately prepared about cervical and breast cancer–screening procedures. Adding expectations about cervical and breast cancer screening to the caregiving role played by families of women with intellectual disability is likely to realize only limited gains for some families.

Conclusion

This study provides new evidence of barriers related to the receipt of cervical and breast cancer screening for women with intellectual disability. Family caregivers reported that adequate preparation, relaxation, and their own participation in the examination room were most important in facilitating cervical and breast cancer screening by their loved ones with intellectual disability. However, preliminary evidence suggests that family caregivers often lack adequate knowledge of the need for cervical and breast cancer screening among women with intellectual disability. Efforts must be made to include family caregivers in health promotion interventions that seek to increase cervical and breast cancer screening for women with intellectual disability.

Acknowledgments

Support for this study was provided by grant # H133G090124 from the National Institute on Disability and Rehabilitation Research, US Department of Education; the Lurie Institute for Disability Policy at Brandeis University; and the North Carolina Office on Disability and Health at FPG Child Development Institute, University of North Carolina at Chapel Hill. Support for Ms. Dababnah was provided by the Sam and Betsy Reeves Doctoral Fellowship Fund, School of Social Work, University of North Carolina at Chapel Hill.

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Author notes

Editor-in-Charge: Susan Havercamp