Abstract

Women with developmental disabilities are significantly less likely than women without disabilities to receive cervical and breast cancer screening according to clinical guidelines. The reasons for this gap are not understood. The present study examined the extent of women's knowledge about cervical and breast cancer screening, with the intention of informing the development and testing of interventions to increase cervical and breast cancer screening rates for these women. In a sample of 202 community-dwelling women with developmental disabilities, most women had little knowledge of cervical and breast cancer screening. Women who were living at home with family caregivers had the most limited understanding of cervical and breast cancer screening. Policy and practice implications are discussed.

The positive effects of early detection of both cervical and breast cancer represent two of the great successes of cancer research in the last century. Both screenings substantially reduce women's mortality and morbidity (American Cancer Society, 2010; National Cancer Institute, 2010; U.S. Preventive Services Task Force, 2006, 2009). However, the success of early detection for cervical and breast cancer has not reached the entire population of U.S. women. The handful of existing studies about this issue have all found markedly low rates of receipt of cervical and breast cancer screening for women with developmental disabilities, in particular (Havercamp, Scandlin, & Roth, 2004; Kopac, Fritz, & Holt, 1998; Lewis et al., 2002; Parish, Moss, & Richman, 2008; Parish & Saville, 2006). Numerous barriers likely inhibit women with developmental disabilities from receiving adequate and timely cervical and breast cancer screening, including health care providers' attitudes, the women's communication abilities, the women's fear and anxiety related to receiving preventive screenings, and family misperceptions or fears. For women with certain physical impairments, exam tables that can be lowered may be necessary and are not widely available (Krahn, Hammond, & Turner, 2006; Messinger-Rapport, & Rapport, 1997; Lewis et al., 2002; Parish et al., 2008; Parish & Saville, 2006).

Women with developmental disabilities may also lack adequate or appropriate knowledge about the procedures and why they are necessary. Such knowledge gaps likely reduce the chances that they will perceive the need for such care. There is little empirical evidence about what women with developmental disabilities understand about these procedures. To develop and test interventions to promote receipt of cervical and breast cancer screening by women with developmental disabilities, it is important to understand their level of knowledge about the procedures. In this study, we investigated the level of knowledge about cervical and breast cancer screening for community-dwelling women with developmental disabilities.

Literature Review

Cervical and Breast Cancer Risk and Women With Developmental Disabilities

Women with developmental disabilities have specific protective and risk factors that reduce and elevate, respectively, their likelihood of developing cervical or breast cancer. Low estrogen levels in some women with developmental disabilities reduce the risk of cervical cancer and some types of breast cancer (Valk, Schupf, & Patja, 2002). However, hypogonadism and being childless increase the risk of breast cancer (Hulka & Moorman, 2001; Valk et al., 2002). Women with developmental disabilities have lower fertility rates than women without disabilities, although research on this issue is limited (Block, 2002; McCarthy, 2002; Servais, 2006). Although the risk of cervical cancer is reduced with the absence of sexual intercourse (Valk et al., 2002), it is increased for some women with developmental disabilities because of their insufficient understanding of sexually transmitted diseases, obesity, poor hygiene (Valk et al., 2002), their high rates of sexual assault victimization (Wacker, Macy, Barger, & Parish, 2009), and often unknown sexual histories, which all make screening imperative (Quint, 2004).

Cervical and Breast Cancer Screening and Women With Developmental Disabilities

Standardized preventive care guidelines in the United States are developed from systematic reviews of the existing empirical evidence by the U.S. Preventive Services Task Force. Typical preventive care services for women include routine health checks as well as screenings for cervical and breast cancer (Agency for Healthcare Research and Quality [AHRQ], 2006).

Pap tests are recommended for women who are sexually active and/or are 21 years of age or older (AHRQ, 2006). Until very recently, best practices encouraged women with developmental disabilities, such as all women aged 40 and over, to receive mammograms to screen for breast cancer every 1 to 2 years (AHRQ, 2006). We note that the clinical guidance now provided by the U.S. Preventive Services Task Force amended this in late 2009 to age 50 (U.S. Preventive Services Task Force, 2009). However, the guidance provided by the American Cancer Society (2010) continues to recommend annual breast cancer screening for women aged 40. At the time this study began, the age 40 guideline was in place, and we retain that for our purposes here.

Disparities in Preventive Health Care

There is mounting evidence that women with developmental disabilities receive inadequate preventive health care, particularly Pap tests and mammograms. Researchers have examined these issues in several studies and found that women with developmental disabilities had very low rates of receiving recommended routine screenings for both breast and cervical cancer (Havercamp et al., 2004; Kopac et al., 1998; Lewis et al., 2002; Parish et al., 2008; Parish & Saville, 2006; Reichard, Sacco, & Turnbull, 2004).

In the only national study of women living in the community (as opposed to institutional settings), women with intellectual disability were 72% less likely than women without disabilities to have received Pap tests, and 45% less likely than women without disabilities to have received mammography (Parish & Saville, 2006). These findings were consistent with those of previous research that found, as compared with women without disabilities, that women with a range of disabilities did not receive recommended screenings (Altman, 1997; Becker, Stuifbergen, & Tinkle, 1997; Chevarley, Thierry, Gill, Ryerson, & Nosek, 2006; Deschler et al., 2007; Iezzoni, McCarthy, Davis, & Siebens 2000) even when they had Medicaid (Parish & Ellison-Martin, 2007). The evidence overwhelmingly indicates that the need for cervical and breast cancer screening by women with disabilities are not met.

Notably, recent major U.S. policy statements related to the health care of people with disabilities have argued for aggressive measures to end disability-based health care disparities. These policy statements include Healthy People 2010 (U.S. Department of Health and Human Services, 2000), which is the nation's public health blueprint and the Office of the Surgeon General's (2002) report Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation.

Barriers to Receipt of Cervical and Breast Cancer Screenings

Health promotion researchers have posited a number of significant barriers as the likely reasons that women with developmental disabilities do not receive timely preventive health screenings. These barriers range from factors related to the women themselves (e.g., lack of knowledge, anxiety related to clinical procedures, lack of empowerment and self-determination related to health care) to factors related to health care providers (e.g., lack of skill, training and experience with women with intellectual disability; pejorative attitudes), and to factors related to the health care system (e.g., affordability, insurance, and reimbursement mechanisms that preclude the extra time providers need to care for women with developmental disabilities; Kastner & Walsh, 2006).

The research literature shows widespread agreement that inadequate receipt of cervical and breast cancer screening by women with developmental disabilities is tied to a lack of understanding in three areas: lack of knowledge about their bodies and reproductive systems, lack of knowledge about sexuality and sexual health, and lack of awareness of the importance of receiving preventive health care screenings (Broughton & Thomson, 2000; Davies & Duff, 2001; Havercamp & Dickens, 2004; Heller & Marks, 2002; Marks & Heller, 2003; McCarthy, 2002; Kopac et al., 1998; Parish et al., 2008). Lack of knowledge across these areas may well contribute to the women's low rates of obtaining needed preventive screenings. In addition, the literature has consistently shown that women with developmental disabilities were exceptionally anxious about receiving preventive screenings, particularly the pelvic exam that facilitates screening for cervical cancer (Broughton & Thomson, 2000; Gill & Brown, 2002; Kopac et al., 1998; Messinger-Rapport & Rapport, 1997; Parish et al., 2008; Prevatt, 1998).

An ongoing systemic trend emphasizes the imperative of an active partnership between patients and health care providers. Increasingly, patients are expected to collaborate with providers in making health care decisions (AHRQ, 2006). This model of patient involvement in personal health care decisions is consistent with values expressed in other aspects of the developmental disabilities service system, particularly those emphasizing self-determination and consumer-directed supports (Shogren, Wehmeyer, Reese, & O'Hara, 2006). However, efforts to empower adults with developmental disabilities in their health care decisions have been limited (Shogren et al., 2006). In addition, effective participation as a partner in health care requires fundamental knowledge about the importance of needed health care services such as cervical and breast cancer screening for women.

Efforts to promote partnerships between people with developmental disabilities and their health care providers may be particularly necessary given the pejorative attitudes society still harbors regarding the sexuality of women with developmental disabilities (Gill & Brown, 2002). Some medical professionals maintain the attitude that women with disabilities are asexual and, therefore, exempt from the need for crucial preventive screenings (Gill & Brown, 2002; Havercamp et al., 2004)

Enabling women with developmental disabilities to receive timely cervical and breast cancer screenings may require educating them about the need and purpose of such procedures, ways to manage anxiety, particularly related to the pelvic exam, and how to advocate for their own needs with their health care providers. The present study was conducted to address the following research question: What is the level of knowledge about cervical and breast cancer screening of women with developmental disabilities who live in the community? Are there differences in knowledge among women with developmental disabilities who live in different types of settings (residential, alone, or with family members)?

Method

We conducted computer-assisted, face-to-face interviews to ascertain the cervical and breast cancer–screening knowledge of community-dwelling women with developmental disabilities in North Carolina. This article reports the baseline knowledge of women with developmental disabilities (N  =  202) who are participating in a multisite, longitudinal, randomized, controlled trial to test an intervention to promote cervical and breast cancer screening. The findings we report here are derived from the results of baseline knowledge surveys, prior to the women's randomization into treatment and control groups, and prior to their participation in any specialized activities to increase their knowledge. Our research protocol was approved by the Institutional Review Board at the University of North Carolina at Chapel Hill.

Site Recruitment

Initially, we used e-mails and telephone conversations to explain the study and invite administrative staff from community colleges, community rehabilitation programs, and multiservice developmental disabilities organizations to participate. We then conducted on-site visits to fully explain the project and partner sites' responsibilities, which were delineated via a memorandum of understanding. Collaborating sites had three primary responsibilities: (a) identifying women with intellectual disabilities within their agency who could participate in the study, (b) identifying at least one staff member to receive training and teach the Women Be Healthy curriculum (Lunsky, Straiko, & Armstrong, 2002) on-site, and (c) assisting the research team to maintain contact with participants over a 3-year period. Forty-five community rehabilitation, community college, and multiservice developmental disabilities service organizations were initially contacted, and 21 (47%) joined the study. Twenty-four sites declined to participate because of factors that included a shortage of staff, overburdened staff, or low numbers of potential participants. Table 1 describes the partner sites. The community colleges operate so-called compensatory education programs, which are free and open exclusively to adults with developmental disabilities in North Carolina. These partner organizations, despite the different terms used to identify them, all provide similar educational, habilitation, and vocational training and support services to adults with developmental disabilities in North Carolina. The population that is served is generally identical across sites, and many women receive services from more than one of the organizations or switch among service providers.

Table 1

Description of the Community Partner Sites

Description of the Community Partner Sites
Description of the Community Partner Sites

Participant Recruitment

We recruited study participants via public information sessions that were held on-site for each participating location. Potential participants, parents, guardians, and support staff were invited to attend the information sessions. Women were asked to sign an assent/consent form only if they wanted to participate, regardless of their guardianship status. This procedure was implemented to ensure that each woman actively chose whether or not to participate in the project. When women declined participation, no further contact was made with them, and their guardians were not contacted. The purpose of this procedure was to ensure that women would not feel pressure to participate from their guardians. Some women who were their own guardians requested that information about the project be given to a family or staff member, which the research team did by mailing information and/or calling identified family and staff.

For women who were unable to attend the information sessions but who expressed interest in participating, research team staff met with them individually at another time. If guardians were unable to attend information sessions, consents were mailed to them. Obtaining guardian consent often required several contacts from the research staff by mail and telephone.

From this recruitment process, we successfully enrolled 202 women in the study. To participate in the study, individuals had to meet the following criteria, including: having developmental disabilities; being 18 years of age or older; and being able to provide assent or consent with an understanding of the research project and living in the community.

Development and Testing of Interview Tool

There is currently no one tool or measure that has been validated to collect all of the information we needed for this study. Therefore, we identified questions from various established measures that had been previously used by individuals with developmental disabilities. These measures included National Core Indicators (National Association of State Directors of Developmental Disabilities & Human Services Research Institute [HSRI], 2010), and the Socio-Sexual Knowledge and Attitudes Assessment Tool—Revised (SSKAAT-R; Griffiths & Lunsky, 2003). Once our interview instrument was established, we iteratively pilot-tested it with two women with developmental disabilities to determine if it had questions that were confusing or difficult to answer. After pilot-testing the interview guide, we refined the final measure.

Procedure

After obtaining informed consent from the women (and their guardians, if necessary), we began collecting data with our new measure. A research team member met individually with each woman to complete the interviews, which took approximately 15–20 min. These interviews were computer-assisted, with a member of the research team reading each question aloud and entering the woman's responses directly into the computer. Women were compensated $15 per interview. Interviews were completed on-site at the participating location for the majority of the interviews. However, some interviews were completed at the participants' homes, if this was more convenient or if they were no longer receiving services from the site where they were initially enrolled.

Demographic data were also collected for the women. Data were collected from both the women and from the participating site if the woman did not know the information or if we needed to confirm the information.

As is evident in Table 2, we recruited a sample that was racially diverse. Approximately half of the participants are Black or African American. However, we had less success in recruiting women into the project who were American Indian, Latina, or Asian American. The small proportion of the sample from the groups (1% of the total sample in each) is because of their low levels of representation at the developmental disabilities organizations across North Carolina. The women were also drawn from a range of age groups (range  =  19–67 years; M  =  41 years).

Table 2

Description of the Sample of Participants

Description of the Sample of Participants
Description of the Sample of Participants

Approximately equal numbers of women in the sample lived with family caregivers (n  =  95, or 47%) or in paid residential settings (n  =  93, or 46%). The remaining women lived alone or with a spouse (n  =  14, or 7% of the sample). Consistent with the target population for whom the Women Be Healthy curriculum (Lunsky, Straiko, & Armstrong, 2002) was designed, all of the participants had developmental disabilities and most (n  =  183, or 91%) of the participants had mild or moderate levels of cognitive impairment.

Measures

There were 9 individual dependent variables analyzed here, representing women's knowledge of cancer generally (1 item); knowledge of breast cancer screening (4 items); and knowledge of cervical cancer screening (4 items). In addition, we analyzed three indices of knowledge. The first consisted of the sum of the nine individual indicators. The other two indices were each four-item indicators of either breast cancer or cervical cancer–screening knowledge, derived from the four questions asked about these separate screening procedures. Two members of the research team jointly coded each woman's response as correct or incorrect. The language and terminology used to describe body parts and procedures were frequently colorful and varied. Slang terms were accepted as correct.

The measure of general cancer knowledge was drawn from the question, “What is cancer?” Responses to the question were deemed correct if the women correctly identified two aspects of cancer (i.e., it is a disease; its treatment can include chemotherapy, surgery, mastectomy; it can be fatal or not; common types of cancer).

Responses to the first measure of breast cancer screening (“What is a mammogram?”) were deemed correct if the women identified a machine for detecting breast cancer that compresses breasts and/or uses X-ray. Responses to the second measure of breast cancer–screening knowledge (“How often should a woman >40 years old get a mammogram?”) were deemed correct if they indicated every year. The third indicator of breast cancer knowledge (“Whose job is it to check a woman's breast for lumps?”) was coded as correct for responses of the woman or her health care provider. The fourth and final measure of breast cancer knowledge (“What should a woman do if she finds a lump in her breast?”) was deemed correct if she indicated that care should be sought from a health care provider.

There were four indicators of cervical cancer–screening knowledge. These included “What is a Pap test?” This was coded as correct if the woman indicated a pelvic exam was used to detect cervical cancer, and/or a medical procedure in which the health care provider examines inside the woman's vagina, and/or otherwise accurately described what occurs during an exam. The second cervical and breast cancer–screening knowledge measure (“How often should a woman get a Pap test?”) was deemed correct if the woman indicated every year. The third measure showed women four pictures and asked her to identify the instrument that was used for a Pap test. The pictures included two correct choices (cytobrush and speculum) and two incorrect choices (blood pressure cuff and otoscope). Women who identified either of the correct choices were coded as having correctly responded to the question. The fourth and final indicator of cervical cancer–screening knowledge asked women to identify how a woman could be less nervous about a Pap test or pelvic exam. Correct responses were any action or activity that would be calming or supportive (e.g., relaxing, holding a friend's hand, praying, picturing a calm place, asking the doctor questions).

Analysis

Univariate and bivariate descriptive analyses were conducted using the statistical software package SAS 9.1 (SAS Institute, n.d.). To compare the women's knowledge by their living arrangement, chi-square tests and analysis of variance (ANOVA) tests were used. The chi-square tests were used for the 9 binary individual indicators of knowledge. The ANOVA tests were used for the three continuous measures of knowledge (9-item summed composite of knowledge, 4-item summed breast cancer–screening knowledge, and 4-item summed cervical cancer–screening knowledge). To provide a more fine-grained analysis of the differences in women's knowledge by their living arrangements, we conducted multivariate regressions models. In these models, we controlled for severity of the woman's impairment (whether severe/profound or mild/moderate) and for age. These results are reported later (in Table 4) as odds ratios and 95% confidence intervals for the binary indicators and as linear coefficients for the composite indices.

Results

Table 3 presents the bivariate analyses, and reports the number and percentage of women who responded correctly to each individual item. Table 3 also reports the mean number of correct responses obtained in the three composite measures. Other columns present the bivariate statistics, with the women stratified by living arrangement. The statistical tests reported here indicate whether the differences between knowledge among the women (those living with family members, in residential settings, or alone or with spouse) were statistically significant.

Table 3

Proportion of Women Responding Correctly to Knowledge Questions by Living Arrangement

Proportion of Women Responding Correctly to Knowledge Questions by Living Arrangement
Proportion of Women Responding Correctly to Knowledge Questions by Living Arrangement

Several trends about the women's knowledge of cervical and breast cancer screening are evident in Table 3. First, across the entire sample, the women who were knowledgeable about each item ranged from 18% (frequency of mammography) to 88% (“Whose job is it to do the breast exam”). The women's limited knowledge is most evident in the composite measures, as the mean number of correct responses across the sample for all 9 items was just 3.9.

Table 3 also reveals a clear trend of greater knowledge among women who lived in or with a spouse as compared to the groups of women who either lived with family caregivers or in residential settings. The mean number of correct answers of the 9-item composite was 5.5 for the women who lived alone or with a spouse, compared to 3.3 correct for women living with family members and 4.3 living in residential facilities. A second important trend evident here is that the women had markedly better knowledge about breast cancer screening than they did about cervical cancer screening. This is clear on examination of the percentages of women in each group who correctly responded to the individual items related to breast cancer screening, as compared with those correctly responding to cervical cancer screening. The limited knowledge about cervical cancer screening was most acute for the women living with family caregivers and in residential settings. Taken together, Table 3 indicates alarmingly limited accurate knowledge about cervical and breast cancer screening across the sample and for women living with family caregivers in particular.

Table 4 illustrates the results of our comparison of women's knowledge according to their living arrangement, controlling for their age, and the severity of their impairments. As noted previously, women were grouped into those living in a formal residential setting, those living alone or with a spouse, and those living with family caregivers. Women living with family caregivers are the reference group for these regressions. Women who had severe impairments (as contrasted with those whose impairments were mild or moderate) were less likely to correctly respond to six of the nine knowledge questions, and had lower mean scores on all three composite indices. Controlling for age and impairment severity, as compared to women living with family caregivers, those who lived alone or with a spouse were more knowledgeable about the definition and frequency of mammograms, the definition of Pap tests, and how women can reduce anxiety about the Pap tests. Controlling for age and impairment severity, and in comparison to women living with family caregivers, those who lived in residential settings were more knowledgeable about the definition and frequency of mammogram, the definition and frequency of Pap tests, the instruments used to perform Pap tests, and how women can reduce anxiety related to Pap tests. Statistically significant differences were not found among the women on the items related to whose job it is to perform breast exams or what women should do if they find a lump in their breast. Women living alone or with a spouse and those who lived in residential settings also had higher mean scores on all three composite indices as compared to women who live with family caregivers.

Table 4

Adjusted Comparison of Women's Knowledge by Living Arrangement

Adjusted Comparison of Women's Knowledge by Living Arrangement
Adjusted Comparison of Women's Knowledge by Living Arrangement

Discussion

To the best of our knowledge, this is the first study of the knowledge women with developmental disabilities have about cervical and breast cancer screening. We found alarmingly low rates of knowledge about both cervical and breast cancer screening among these women, and those who lived with family caregivers generally had the most limited knowledge. Understanding women's knowledge about these important screenings is a critical first step in successfully designing and implementing effective interventions to improve their rates of receipt of cervical and breast cancer screening. Moreover, women's knowledge is a critical component of their ability to be effective partners with their health care providers, as is the customary practice in today's health care delivery environment.

To fairly consider this study's implications, it is important to first consider its limitations. First, this investigation relied on a fairly simple set of questions to evaluate women's knowledge about cervical and breast cancer screening. It is possible that some women had knowledge beyond that which they were able to express to the interviewers. Most of the women expressed their satisfaction and even delight with participating in the research project, but it is possible that some were nervous or anxious by the questions that were posed, and that this anxiety biased their answers. A second consideration is that several of the questions required women to provide narrative answers of some length, which requires a degree of verbal sophistication. Therefore, women with more severe impairments may have been less able to answer the questions. However, the questions we asked were drawn from a standardized instrument that was developed explicitly for use with adults with developmental disabilities, the SSKAAT-R (Griffiths & Lunsky, 2003). And furthermore, our regression analyses controlled for impairment severity, albeit with a gross measure.

Another limitation of the study is that the sample did not include women who are unknown to the service system. All of the women were recruited from developmental disabilities service organizations; most women were receiving at least case management services in addition to residential and/or vocational services. As such, we cannot generalize our results to the entire population of women with developmental disabilities. Finally, it would be helpful to understand how the knowledge of women with intellectual and developmental disabilities compares to that of the population of women without disabilities. However, our comprehensive literature search did not yield any estimates of women's knowledge about cervical and breast cancer screening. A lack of accurate knowledge has been identified as an important barrier to receipt of these health screenings among low-income women of color without disabilities (Documét et al., 2008).

Despite these limitations, this study has a number of important strengths. It employed a relatively large community-dwelling sample of women with developmental disabilities who were from a diverse geographic area across a populous state and from divergent living arrangements. As such, the results are likely to be generalizable to the larger population of women with mild to moderate developmental disabilities who live in community settings.

Implications

Our findings that the women who participated in the study have limited knowledge about the need for clinically indicated cervical and breast cancer screening have several important implications. First, it is imperative for women with developmental disabilities to be engaged in programs and activities to improve their knowledge about the importance of cervical and breast cancer screening. Their ability to actively participate in their health care and communicate effectively with health care providers requires them to have basic knowledge about cervical and breast cancer screening. Such educational efforts, if they are to succeed, must be geared to learners with limited literacy and cognitive limitations.

Service providers who support women with developmental disabilities should work to improve their knowledge and information about clinically indicated screening. Such efforts could take several forms. First, health care providers should educate their patients with developmental disabilities about the importance of cervical and breast cancer screening and the need to receive such screenings according to clinical guidelines. In anecdotal evidence volunteered by some of the women we interviewed, health care providers sometimes told women that they did not need Pap tests, in particular. We have no way of knowing which of the women in our study were sexually active and therefore were at elevated risk for developing cervical cancer. Notably, a fair number of women in the sample reported that they had children. At a conservative minimum, these particular women at least had been sexually active or were sexually assaulted at some point, indicating the need for cervical cancer screening was urgent. Few physicians are likely to have such intimate knowledge of the sexual activity of their patients with developmental disabilities. This is particularly the case because the sexuality of women with developmental disabilities is still considered deviant (Block, 2002; McCarthy, 2002), and many women with developmental disabilities who are sexually active may be reluctant to disclose their behavior to their health care provider. As such, the clinical guidelines as established by the U.S. Preventive Services Task Force (2006) should be followed for women with developmental disabilities. Other service providers, including residential and day/employment programs, could actively pursue efforts to provide women service recipients with training and educational material that increases the women's understanding of the importance of cervical and breast cancer screening as well as reduces their fear of anxiety about having the exams.

The limited knowledge about cervical and breast cancer screening that women living at home with family caregivers have raises a number of issues. First, the lack of knowledge of these women suggests that addressing their needs would be a particularly fruitful avenue for policy and practice changes. Targeted outreach to women with developmental disabilities is clearly warranted by these findings. However, these findings suggest that it is also important to understand why women living with family caregivers do not have the knowledge of their peers. It may be necessary to educate family caregivers about the importance of cervical and breast cancer screening for women with developmental disabilities. It may also be that the family caregivers are receiving the erroneous advice from health care providers that women with developmental disabilities do not need such screening procedures. It may also be the case that licensing requirements of some residential facilities, which may require receipt of health care services, serve to educate women who receive residential services in ways that are not present for women who live at home with family caregivers. Clearly, more research is warranted to understand the drivers of these differences.

Previous research has indicated that family caregivers often accompany women with developmental disabilities on visits to their health care provider (Parish et al., 2008). These family members are therefore uniquely positioned to help the women advocate for their health care needs. Efforts to improve the knowledge of women with developmental disabilities about cervical and breast cancer screening should include partnering with family caregivers.

These findings also suggest that women with developmental disabilities should receive training and support to become partners in their health care. An encouraging number of study participants demonstrated some knowledge about cervical and breast cancer and the importance of such screenings. This strength and relative sophistication should be encouraged—women with developmental disabilities should be offered opportunities to participate in appropriate education and training to improve their knowledge about health, health promotion, and health care. Women with such knowledge could be enlisted as peer trainers and peer support to encourage other women with intellectual and developmental disabilities to learn about the need for cervical and breast cancer screening. Women with developmental disabilities should receive support to facilitate their participation in efforts to improve cervical and breast cancer screening for the entire North Carolina population of women with intellectual and developmental disabilities.

Finally, these findings that women with developmental disabilities lack basic knowledge about the cervical and breast cancer screening directly challenge the wisdom of policy shifts in the clinical guidelines for cervical and breast cancer screening. Vulnerable women, including the women with developmental disabilities studied here, are clearly struggling to understand the clinical guidelines. Although these data were collected prior to the change in the mammography recommendations issued by the U.S. Preventive Services Task Force (2009), the mixed message such changes herald are unlikely to be helpful for women with developmental disabilities. Policy makers should consider the impact of policy shifts on women whose ability to comprehend and follow recommendations is compromised by cognitive limitations.

Conclusion

In summary, our study contributes new information that women with developmental disabilities have exceptionally limited basic knowledge about cervical and breast cancer screenings. These findings indicate that there is a critical need for health care providers to educate their patients with developmental disabilities about the need for cervical and breast cancer screening, that health care providers should work diligently to ensure that their patients with developmental disabilities receive cervical and breast cancer screening according to recommended clinical guidelines, and that other service providers (e.g., residential and vocational) could fruitfully pursue efforts to partner with family caregivers and also to educate women with developmental disabilities about the importance of receiving clinically indicated cervical and breast cancer screening.

Support for this research was provided by the National Institute on Disability and Rehabilitation Research Grant H133G090124; North Carolina Division of Mental Health, Developmental Disabilities, and Substance Abuse Services; School of Social Work, University of North Carolina at Chapel Hill; Developmental Disabilities Training Institute; and the North Carolina Office on Disability and Health, FPG Child Development Institute, University of North Carolina at Chapel Hill. We also acknowledge Kathryn Moss's research assistance and her contributions to the study design.

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Author notes

Editor-in-Charge: Steven J. Taylor

Authors:

Susan L. Parish (e-mail: slp@brandeis.edu), Nancy Lurie Marks Professor of Disability Policy, Lurie Institute for Disability Policy, The Heller School for Social Policy and Management, Brandeis University, 415 South Street—MS 035, Waltham, MA 02454, USA; Jamie G. Swaine, University of North Carolina at Chapel Hill; Karen Luken, University of North Carolina at Chapel Hill; Roderick A. Rose, University of North Carolina at Chapel Hill; Sarah Dababnah, University of North Carolina at Chapel Hill.