This study explored aging and health experiences and concerns of women with intellectual and developmental disabilities, using a participatory approach that captured the direct reports of the women, in their own words and from their own perspectives. The results of a qualitative analysis of 6 focus groups, composed of 34 women with intellectual and developmental disabilities, Age 30 years and older are reported. The focus groups addressed health knowledge, body awareness, developmental and age-related changes, life satisfaction, health behaviors, health service experiences, and perceptions of disability. Findings indicated that the women held misconceptions and limited knowledge regarding health and aging. The results are discussed in relation to disability, women's health, and social support issues, including recommendations for health professionals and care providers.
Women's health initiatives in recent years have addressed the historic neglect of women's complex health issues. Although health research agendas and service programs for women with disabilities have grown considerably in the past decade (Kirschner, Gill, Reis, & Welner, 1998; Tighe, 2001), the voices of women with intellectual and developmental disabilities remain underrepresented (Brown & Gill, 2002; Sank & Lafleche, 1981; Walsh & Heller, 2002; Walsh & LeRoy, 2004). Current trends indicate that women with intellectual and developmental disabilities are living longer and are more likely to be integrated into community settings. However, because their health and aging issues are not well understood, these women may not be getting appropriate services (Canrinus & Lunsky, 2003; Gill & Brown, 2001; Walsh & Heller, 2002).
Women with intellectual and developmental disabilities faced both disability-related and gender-related health service disparities, as demonstrated by the lack of education and information regarding their general health issues and issues specific to their disability and compounded by environmental access barriers, discriminatory attitudes, and health professionals' having inadequate training or knowledge about their needs (Sank & LaFleche, 1981; Walsh & Heller, 2002; Walsh & LeRoy, 2004). Stigma and discrimination related to their disability have led to greater vulnerability in these women in terms of sterilization, menstrual management, abuse, and mental health issues (Brown & Gill, 2002; Walsh & Heller, 2002). Information on the health of women with intellectual and developmental disabilities has been collected primarily from reports by health professionals, agency staff, and family members. Although this information is vital, health concerns and experiences of these women are often overlooked, and critical health decisions are made on their behalf that may be based solely on the needs and views of the care providers.
Information ascertained from the perspective of women with intellectual and developmental disabilities as the primary source is needed to counsel family members, guardians, and others who provide assistance and for training health service professionals on how to encourage these women to participate in making decisions about their own health and well being. Recent work to address this problem has included qualitative studies that reflect the individual accounts of women with intellectual and developmental disabilities through the use of informal or semistructured interviews. For example, McCarthy (1998) interviewed 17 women with learning disabilities in the United Kingdom about issues related to body image, appearance, power, and control. She found that these participants held mostly negative views about their bodies, particularly around weight issues, and that the women's perceptions of dissatisfaction may be influenced by the same norms of conventional beauty and femininity as experienced by other women. In later studies, McCarthy (2002; McCarthy & Millard, 2003) investigated the perceptions of women with intellectual and developmental disabilities experiencing menopause and found that, despite their reports of experiencing physical changes related to menopause, the women had inadequate overall knowledge and understanding about this life transition and its relation to reproduction.
Canrinus and Lunsky's (2003) interview study with 9 women in Toronto with intellectual and developmental disabilities revealed that the women faced significant health challenges as they aged; yet, they reported feeling relatively happy and satisfied with their health as well as with personal supports they received from community agency service providers. LeRoy, Walsh, Kulik, and Rooney (2004) conducted an exploratory interview study of 29 Irish and American older women with intellectual and developmental disabilities who reported activity limitations but overall good health. Consistent with previous studies, women with intellectual and developmental disabilities reported being happy, despite their limited economic and social resources. Walsh and LeRoy (2004) used quantitative and qualitative interview methods to explore factors related to healthy aging for women with intellectual and developmental disabilities in 18 countries, documenting the personal stories of 167 of these middle–older-aged women. Although the women in their study had varying degrees of health issues and levels of contact with their health systems, they held mostly positive views of their overall health.
The studies described above demonstrate that qualitative research approaches can and have been used successfully with women with intellectual and developmental disabilities; however, most studies have relied on individual interviews. Limited health research using group formats with people with intellectual and developmental disabilities (Bollard, 2003; Cambridge & McCarthy, 2001; Fraser & Fraser, 2001; Martin, Roy, Wells, & Lewis, 1997; McCarthy & Millard, 2003; Walsh, Heller, Schupf, van Schrojenstein Lantman-de Valk, & Working Group, 2000) has focused on narrowly defined topics, has been mixed gender, or has included staff or family care providers as group participants. Few studies have provided opportunities for women with intellectual and developmental disabilities to participate in open, wide-ranging group discussions of aging, disability, health, and well being with only their peers.
The purpose of this exploratory study was to investigate aging and health concerns and experiences of women with intellectual and developmental disabilities qualitatively, from their perspectives and in their words, on a broad range of health- and aging-related issues. We conducted this research within the context of facilitated peer-group discussions, without the presence of staff or family care providers. A secondary purpose was to test the value of using a focus-group method with women with intellectual and developmental disabilities. As disability and women's health researchers, we view both disability and women's health as broad categories, each defined by complex interacting social and biomedical factors. We documented the women's views of multiple health issues and their social as well as medical dimensions, including their views on barriers and access to health services, health literacy, risk behaviors, preventive health care, lifestyle preferences, and overall well being. To gather this information, we developed a semistructured focus-group interview guide to facilitate responses on a wide range of topics that allowed the women to direct discussion, ask questions of the researchers, and talk with each other.
We conducted six separate focus groups, each composed of 4 to 8 participants. Focus groups were held in private rooms at either residential or daytime activity–work sites. Two research staff (a moderator and a cofacilitator) conducted two of the six groups; a single moderator led the remaining groups. We used a semistructured focus-group format designed to collect the participants' verbal responses to open-ended questions. However, consistent with a grounded-theory approach to qualitative research (Strauss & Corbin, 1990), we allowed the perspectives of the participants, rather than any preselected theory, to shape the research discussions and guide interpretations. All focus-group interviews were audiotaped for later transcription and analysis.
A total of 34 participants were included (1 Asian/Pacific Islander, 8 Black, 2 Hispanic, and 23 White women). Participants' ages ranged from 33 to 71 years. The range of ages reflected the interest of the researchers in understanding similarities and differences in aging perspectives from women at middle to older life. Rather than using criteria based on medical diagnoses or specific disability categories, we included all women deemed eligible for (and currently receiving) services from local intellectual and developmental disability service agencies. Eligible study participants were defined as women, Age 30 years or older, who were able to respond to simply stated, open-ended verbal questions. Women with intellectual and developmental disabilities were recruited through Chicago-area agencies providing services for persons with intellectual and developmental disabilities, with whom the researchers had cultivated a strong research team relationship. Researchers asked agency staff to assist in recruitment by identifying potential participants (and providing guardian contacts, if appropriate) on the basis of the above-stated eligibility criteria and to screen eligible women for their potential interest in participating. We recruited a heterogeneous group of participants with diverse disability types and cultural backgrounds. Prior to joining the focus group, each participant (and guardian, if applicable) was asked to read (or have read to her/him) and sign a consent form describing the nature of the research and study procedure. All participants and legal guardians who were contacted gave assent and consent to participate, and none of the participants that assented/consented withdrew from the research at a later time.
Participants in the focus groups were asked about their health, aging, disability, life experiences, and views of health services and health professionals. The initial set of research questions was developed on the basis of an extensive review of the literature. Research questions were revised slightly throughout the study to incorporate issues and topics identified by the women in previous focus-group sessions. In addition to health-specific topics, the women were also asked about work and home, the people in their lives, the choices they made, and overall well being. The women had opportunities to express their ideas, opinions, and feelings related to the above-stated topics and to interact with their peers in group discussions. Each focus group lasted approximately 90–120 min.
Data were analyzed to determine key areas of health concerns and how women with intellectual and developmental disabilities framed their health and aging issues. Audiotaped responses were converted to printed transcripts. Transcripts and the researchers' field notes were entered into and organized through the use of Atlas.ti (Scientific Software Development, 2005) software. Textual data were analyzed according to the constant comparative method (Glaser & Strauss, 1967), which involved breaking down transcript and raw field-note data into meaningful segments, assigning descriptive code words to each segment, and comparing each of the coded segments within and across transcripts. Two investigators composed the research team, each one having been either a moderator or assistant facilitator. Each team member independently coded and identified preliminary themes emerging from the data. The team met to compare the individual coding for consensus or divergence and to generate a set of main themes by organizing codes into conceptually related clusters. Audiotapes were used to clarify ambiguity in wording and to address any conflicts in recall or interpretation in the preliminary data analysis. This process was repeated for each focus group. At the completion of all six groups, the research team reviewed the datasets, summarizing descriptive information and exploring insights into relationships between themes for potential theoretical importance.
Themes from our findings that were key to understanding the experience of women with intellectual and developmental disabilities emerged in six major and interrelated areas: general aging, women's health, experiences with health services and health professionals, health promotion, mental health, and perceptions of disability.
Most women reported knowing their current age. Among those who did not, a few women stated that they were either older or younger than others in the group, and some simply stated that they did not know. The women in our groups seemed aware of basic age-related physical changes, such as graying hair, yet had difficulty describing physiologic characteristics of older age, such as menopause. We thought it interesting that they tended to focus on social roles and behavioral changes as markers of lifelong, age-related milestones (i.e., going to school, getting married and having a family, getting a job). As 1 woman stated in response to a question regarding what it was like getting older, “As a little girl…you play a lot with toys, but as you grow older you think of school, get friends, then getting a job or getting married.” When referring to aging, the women held mostly negative views associated with getting older. Most of the women emphasized some physical perceptions of aging, as represented by this woman's account, “You get hot flashes and you sweat, and then you get sick quicker than when you were young.” Another woman, Karen (all names in this article are pseudonyms), stated, “You get a cold or a sore throat [and] get it quicker and as you grow old, you be hurting a lot.”
Many women interpreted getting ill and dying as part of the aging process and were confronting the loss of loved ones, such as parents, friends, or siblings. When asked by other group members, Anna, a woman in her 50s who had lived at home with her family most of her life and was faced with a significant residential transition and learning to deal with grief and loss, described in detail what happened when her mother died:
I saw my mother die. I was with my mother in the basement apartment. I thought she had a fainting spell, you know. But she didn't—she hit her head on the doorway in her bedroom.…The paramedics came and she [relative] told me to go to the 2nd floor. They didn't want me to see mom…them covering my mother's face. I had a feeling she was gone. …So my sister says, “[participant name], Ma is gone.” I says, “oh c'mon she's not gone.” She says, “Ma is dead.” Well, that's all I had to hear…I cried for days, days and days. I was very upset. I stayed with my mother for a very long time.
On probing, some of the women identified more positive aspects of aging, such as “getting discounts” and the idea that older people “deserve more respect.”
The participants recognized that women and men differ in terms of anatomy, but they did not convey a clear understanding of how or why. They tended to associate menstrual periods with being a woman and with getting pregnant but were unclear about the relationships between menstruation and pregnancy or reproduction. They associated menopause with cessation of periods and identified mostly unpleasant signs of menopause and, in particular, hot flashes. None of the women expressed knowledge of hormone replacement therapy, nor was anyone aware as to whether she was receiving it or had received it in the past. The women knew of Pap smears and mammograms and reported having had at least one, but they had inconsistent understanding of the purposes for the exams. Darlene, a woman in her 30s, explained what she thought a Pap was for: “They look in your stomach to see if everything's ok.” Karen, a middle-aged woman who appeared to have more experience and health knowledge than most of the other women, explained to the group how she understood the mammogram procedure: “They put your breast in the machine and squeeze it tight to make sure you ain't looking, and then you be wondering [chuckling]...Don't do that! They shoot this machine then to make sure your breasts ain't got no lumps or something in it.”
There was considerable variation in the women's attitudes toward discussing their bodies and sexuality. Some women were reluctant to discuss “taboo” topics, such as reproductive anatomy or sexuality, and expressed nervousness through giggling and laughter. Others were quite comfortable talking, gesturing, and/or showing where on their body the discussion was focused. One woman expressed menopause in relation to her religious beliefs: “It's God's will or way to stop it or let it go. It's God's will to have them stop or keep going.”
Another woman offered that although she would want to have a baby, she would not want to have a baby with a disability (handicap), relaying to the group that the advice from her doctor was that she should not have one because of the medication she takes for her seizures, which she stated “might cause the baby to be born unhealthy.”
One especially striking finding was that many of the women were simply refusing to have pelvic exams and mammograms done and that almost all participants associated gynecologic pelvic exams and mammograms with pain and anxiety. Angela, who was in her late 40s and living in a supported group home, told the group why she had to stop having preventive procedures: “I can't go anymore…because I cannot take it. I get too tense doing it.” Several other women added that the reason they would not have the exams was because “it hurts too much.” One person added, “Those tests that don't feel good…I don't go anymore, I don't have him do it anymore.”
Experiences With Health Service Professionals
In general, the women reported getting health information from doctors, agency staff, television, and family. Across all groups, the women expressed confusion over the purpose of specific medical exams and procedures, and, although they reported taking many medications, they did so with little knowledge of the reasons for medications or of side effects. Most of the women reported wanting to be accompanied by staff, personal attendants, or family to physician visits but had mixed responses as to how doctors treated them during the visits. Most of the women said the doctors and nurses were nice to them, but a few mentioned that one or more doctors were not. Among the women who were not happy with their doctor, many stated they had no choice in the matter. A few of the women did identify the right to ask to see a different doctor, and some of them reported having been able to choose a different doctor. One concern often raised was not being told directly about their health and related health conditions; as Julia, a middle-aged woman living in her own apartment, remarked, “I want to ask [about my body], not sarcastic…I just want, you know, for my own sake and for my own health. I want to know.” Another woman added, “One time I asked the doctor what's the matter. I asked one time…what's wrong with me? But, uh, they don't usually tell me what it is.”
When asked how uncomfortable procedures and visits could be made better, the women primarily focused on changes to their own behaviors rather than changes in the environment or behavioral changes of staff or health professionals. For example, 1 woman suggested, “I need to take medicine,” and another woman offered, “I hold my breath,” as ways in which the pelvic exam and Pap smear procedure could be made better for them.
Several women identified support from others as being helpful, such as having someone accompany them to doctor appointments and, often, assisting them in the exam rooms. One woman described how the clinic was able to make her last doctor visit better: “I went there to have a mammogram and a Pap smear and they showed me a movie before…to put my mind at ease.”
In general, women in this study reported having relatively good health, and they thought they were engaging in what they considered to be practices to promote good health, such as exercising and trying to “watch what you eat.” All of the women in our groups recalled at least one procedure in routine doctor visits. Specifically, they commonly mentioned having their eyes and ears, heartbeat, and throat checked. If they visited the doctor for a specific injury or illness, they described the way they were examined. Although the women recalled having had their breasts checked, there was no mention of being taught or asked to perform breast self-exams. Of all the commonly recommended types of health promotion behaviors, the women seemed most familiar with exercise and diet as ways to stay healthy as they get older. Shelly, a younger woman who lived with several others in a group home, described her knowledge of healthy eating, stating, “Vegetables are good food, and you bake or boil the food. Stay away from salt if you can.” When asked what type of physical activities women do to stay healthy as they get older, 1 woman replied, “I do different exercises. I walk and do pull-ups…I do running in place, or take the exercise bike and ride it.”
The women in our groups had limited recognition of unhealthy or higher risk behaviors, such as smoking. Not surprisingly, they expressed vague knowledge of sexually transmitted infections and associated bathing and personal hygiene with disease prevention. As 1 woman stated in response to the question of what a woman should do to protect herself from getting a sexually transmitted disease, “You have to keep yourself clean. Keep your hands clean and take a bath.”
Perceptions of Disability
Many participants did not identify themselves as having a disability, and some did not know what “disability” or “handicap” meant. Few participants self-identified as having any disability, and, for those who did, disabilities were related to either chronic illness or physical disability. None of the participants identified intellectual or developmental disability as a shared characteristic of the group. Individually, some asserted that they did not have “mental retardation,” rather, that they were “slower” than others or that they have a hard time learning certain things. One participant, Marilyn, who had grown up in different cultures and in different family settings, described her experience in detail:
I wasn't born like this. I was, well, I can't remember my age but I was a little baby in [another country]. All of a sudden they found out I was a disability. I'm forgetful so they didn't want me…I remember, I was abused, adopted, home alone and everything else—and then with foster parents, and they did the same thing with me—abused me like they didn't give a care. And that's why I was…they find out I was a disability.
Some of the women spoke of personal experiences of being teased for being different, said 1 participant, “People called me names because I walked different.” Most of the women identified the term “mentally retarded” as highly stigmatizing. As 1 woman stated, “I hate that, I hate that word retarded, too.” Another woman described her early school experience:
I remember that one time I was on the bus, minding my own business and all of a sudden I hear these two were laughing at me, and I started thinking, “who is this retarded person?” They pointed the finger at me, and laughing at me saying I was the one person doing all the craziness stuff. And then I got mad about it. I just couldn't take it anymore from them and they were laughing at me.
When asked what the word retarded meant to them, the women replied with some confusion. Many of the women perceived the word to imply limitation in learning or other functions, as expressed by the following woman's comments:
Doctors told my mother that I was retarded. My “retarded-ness” was—if you put arithmetic in front of me I never learned how to do it…my goal was that I got out of it—got out of being retarded.
Now I can learn how to do things for myself without help…I couldn't even tie my own shoes, I couldn't feed myself. That's where it is—the disability. That's what “retarded” was…that you are “retarded.”
Marilyn recalled stigmatizing attitudes within her family:
I don't like people to call me names like mental retarded. My father used to call me that [retarded] as a joke…my sister too, she would say, “She got hit over the head, she'll never make it. She won't amount to nothing.”
However, another woman discussed empowering interactions with her family: “My mama was proud of me, she said, ‘don't tell that girl she's not, she's not gonna be anything—tell her some positive things.’”
Although the women generally associated having a disability with mostly negative experiences, some of the women challenged the stigmatizing label and stressed the positive aspects of their abilities: “You can see for yourself, right? You can see that we're not [retarded]! There's nothing wrong with us! We can do all the things that anyone else can do—we're just slow.”
A number of participants spoke at length on the central importance to them of relationships with friends, family, staff, and romantic partners. Many of the women discussed issues of sorrow, grief, and loss, particularly in relation to separation from family members and friendships, and mentioned family conflicts as a source of distress. Several individuals within each of the groups seemed to have experienced significant depression. One woman gave an example of trying to express her sadness during a visit with her physician: “A doctor was talking to me yesterday and I started to cry…you feel like you're rejected from society and you feel left alone.” However, the women also revealed several positive feelings about their lives. When asked what makes them happy, they often mentioned the kind of experiences that make life enjoyable for most of us. For example, 1 woman described the following common scenario as uplifting: “If you have money and you go out and buy something you want.”
Some of the women referred to other people in their lives as a primary source of happiness, such as Gail, who was the mother of a young child: “My little girl—my baby makes me happy.” Other women talked about specific objects or behaviors: “I eat a doughnut to make me happy.” Another woman added, “You go somewhere and think about all the good things you have.”
Issues of respect versus disempowerment seemed particularly linked to emotional well being. Brenda, a woman who had participated in a self-advocacy group, gave this description of her experience in this regard, which attests to the importance of acknowledging the voices of women in this community:
Since I've been here at this workshop, it seems like they try to put you through tests to see about what do you know. It shouldn't be like that. You shouldn't have to prove anything to another person. You've got a name and people should respect you as who you are…don't try to put you through a test to see what your goal is. Things like getting a job, and your life, that's important but…that's the way it's been since I've been here. They don't take my word as what I say.
The women in our study reported having had preventive health services related to general and reproductive health, including breast and cervical cancer screenings. Most of the women reported relatively good health, although they acknowledged that they shared some of the same health problems and concerns as other women in the groups. These results are consistent with previous studies exploring aging and health issues. In LeRoy, Walsh, Kulik, and Rooney's (2004) exploratory interview study, older women with intellectual and developmental disabilities reported activity limitations but overall good health. Walsh and LeRoy (2004) used mixed quantitative and qualitative interview methods to explore factors related to healthy aging for women with intellectual and developmental disabilities, and although the women in their study had varying degrees of health issues and levels of contact with health systems, they held mostly positive views of their overall health.
This study also supports previous findings (Canrinus & Lunsky, 2003; McCarthy, 2002; McCarthy & Millard, 2003; Walsh & LeRoy, 2004) that women with intellectual and developmental disabilities continue to face a multitude of barriers to quality health care, including anxiety and fear around various health examinations, communication difficulties with health professionals, and inadequate education about women's health issues. We discovered troubling gaps in the participants' understanding of the care they were (or were not) receiving and the importance of certain procedures to their overall health. Many of these women were uninformed or confused about the purpose of specific medical exams and procedures or reasons for medication. Equally troubling was that some of the women's experiences reflected an internalized lack of self-empowerment, such as thinking they should do as they are told by authority figures or that it would be their own responsibility to make health procedures more comfortable by changing themselves.
Across all focus groups, the women told us that they were not getting adequate explanations and information about their reproductive health as they aged, consistent with McCarthy's (2002; McCarthy & Millard, 2003) findings that women with intellectual and developmental disabilities who experienced physical changes related to menopause had inadequate overall knowledge and understanding about this life transition and its relation to reproduction. There is a need for research to understand which women with intellectual and developmental disabilities currently receive hormone replacement therapy and how they perceive the intended purpose, benefits, and risks of those treatments. Furthermore, these women have not been given adequate information about the relationship of aging to other bodily processes or their risks for health conditions, such as arthritis, cancer, stroke, or heart disease.
As evident in their stories, the women in our study associated aging with disability, the lack or loss of functional abilities, and debilitation. The women also faced barriers related to discriminatory social attitudes, including those of health care providers, their families, and staff. The words and attitudes of family members and peers were significant in how the women came to understand both aging and disability experiences. Negative messages about disability from health professionals were also influential and even shaped decisions regarding sterilization and pregnancy. Women with intellectual and developmental disabilities did not identify with the term mental retardation, which is not surprising, given that the stigma attached to being labeled retarded or retard (Bogdan & Taylor, 1982; Edgerton, 1967) is still commonly experienced in our society. In this light, it is important to consider to what extent these women's negative perceptions of disability and the stigma attached to intellectual and developmental disabilities affected their access to disability-related informational materials and community-based outreach to improve health care.
Through group discussion, the women were able to identify many positive aspects of their lives and factors related to their overall well being, and they reported being happy despite their limited economic and social resources. However, some of the women's comments reflecting instances of abuse and their experiences of anxiety, sadness, loss, and isolation made us question whether they were receiving adequate mental health services.
Information gathered through qualitative approaches is useful in understanding data derived from more traditional methods of studying health. By centering the voices of these women, a much broader conceptual framework can be developed and explored. The perspectives of women with intellectual and developmental disabilities augment information and interpretations obtained from other research methods that are based solely on proxy respondents' perspectives and challenge previously held beliefs that women with intellectual and developmental disabilities are not capable of communicating their health concerns or participating in health-related choice and decision-making processes. By including the direct accounts of these underrepresented women through group interviews, current theories and recommendations about women's health can be expanded, and new theoretical perspectives can begin to emerge. In particular, the focus-group method allowed the women to identify and convey their concerns and experiences, interacting with each other in ways that revealed additional information.
However, the chosen research method was not without challenges. Focus-group research may be more difficult with women with intellectual and developmental disabilities because of communication and language issues, comprehension level, environmental and external distractions in unstructured locations, and the influence of medications (e.g., sedatives, drug side effects) that may limit attention. This study also was limited by the fact that only women with adequate verbal communication skills were deemed eligible, and, in general, those with less severe disabilities chose to participate. Future research efforts are needed to design studies for exploring the experiences of other women with intellectual and developmental disabilities, such as with the use of audio and visual media or storytelling techniques. The degree to which women participated and actively engaged in group interactions might also be related to individual factors, such as personality differences, physical and mental states, comfort level and experience in talking in a group, and comprehension of specific information being discussed.
Varying backgrounds and life experiences related to social stigma, social group pressures, learned passivity, and power differentials as experienced by persons with intellectual and developmental disabilities are also factors in understanding who will or will not actively participate in group discussions. In addition, institutionalized learning may lead the participants to acquiesce to research facilitators who may be perceived as authority figures. Based on these limitations, the we suggest modifications to the typical focus-group method that include using a smaller group size (4–6 participants) and augmented communication devices and visual media, having groups meet according to the individuals' structured routine or schedules, preventing or limiting external distractions, and restricting the number of questions or issues to be covered in each session. We also found it helpful to have a cofacilitator during the session to assist with behavioral or communication issues we thought might arise during the session and for collecting additional observational data. Moderator and/or facilitators should be familiar with the population and trained to minimize the limitations.
The use of focus groups helped us identify and assess the particular concerns of women with intellectual and developmental disabilities as well as the issues they shared in common with other women. Our findings were generally consistent with previous qualitative studies reporting both negative and positive health perceptions and experiences of women with intellectual and developmental disabilities. Although the women in our study expressed generally negative views of aging, disability, and gynecologic services, they also expressed the capacity to enjoy life, treasure relationships, assert their self-worth, and seek information about their health issues when given support to do so. Our findings underscore the need for more information about these women's experiences for family, staff and health care providers because these supporters powerfully influence the women's ability to understand and care for their bodies.
Although more research is needed in these areas, care providers involved in health services for women with intellectual and developmental disabilities have the potential to create changes in the way services are offered and provided. Improving the quality of health care for women with intellectual and developmental disabilities requires that agency staff and health providers address their own need for adequate skills and training in both disability and women's health. The current evidence points to a need for better training for professionals and families on improved communication with the women regarding health issues. Part of health care assessment and interaction should involve sensitivity to verbal and behavioral signs of discomfort, particularly in regard to procedures and exams that the women in our study reported as painful or uncomfortable, and increased awareness that many women with intellectual and developmental disabilities feel intimidated within the context of the health care settings and by the authority of health professionals, Findings also point to the need for an increasedawareness of abuse and trauma, awareness of important relationships in their lives, and creative strategies to facilitate more positive health service experiences for the women. Women with intellectual and developmental disabilities should be asked about their choice of doctors and provided assistance in finding health providers that they feel comfortable with. In addition, health advocacy networks are needed to support women with intellectual and developmental disabilities in breaking the taboos on expressing questions about their bodies, sexuality, and health; validating their right to express feelings of discomfort and/or to ask questions of health professionals; and encouraging more positive perceptions about being women, having a disability, and growing older.
Comprehensive health education programs for women with intellectual and developmental disabilities should be designed to promote participation in their own health care decisions and incorporated into individualized support plans. Health discussions should be ongoing and interactive, allowing the women to openly ask questions and discuss options, with an emphasis on improving their knowledge and self-determination skills. Health discussions could also involve peer-group education, focused on what information they need to know and share in regard to important health issues, such as breast self-exams, menopause and hormone replacement therapy, depression, and whether some health issues are related to having a specific kind of disability or to aging. More examples are needed of how information about health needs of women with intellectual and developmental disabilities can best be incorporated into the design and evaluation of professional training and efforts that include these women in developing comprehensive and innovative programs with community health professionals.
A human rights–based approach to health advocacy and principles of self-determination highlight the need to include the direct accounts of health requirements and supports as identified by the women themselves. Our study provides evidence that focus groups have advantages and challenges unique to this population. The capacity of women in our focus groups to encourage each other to share personal perspectives attests to the power of peer supports. Women with intellectual and developmental disabilities should be given regular opportunities for sharing their experiences and concerns with each other and with care providers. Furthermore, self-advocacy organizations have challenged the problematic label of mental retardation as institutional and stigmatizing and have argued to have the term removed from the language of service providers. Support providers should encourage the involvement of women with intellectual and developmental disabilities in self-advocacy groups to help them learn empowerment skills and find meaningful disability identity in nonstigmatizing ways.
Beyond the immediate social environment of the women, health policymakers should be informed on issues, such as barriers to health promotion, that relate to decision making on both the local and national levels. Progress has been made within the past decades in exploring women's health education resources and programs for this population (Health Resource Center for Women With Disabilities, 2001; Heaton et al., 1994; Lunsky, Straiko, & Armstrong, 2003; Simpson & Lankasky, 2001; Wyoming Institute for Disabilities, 2004), but questions remain regarding how best to support women in community programs and, in particular, what roles they have in addressing or preventing their own health issues. More research is needed on creating health-promotion options for these women and should explore differences across age, race, ethnicity, and class.
Collaborative health approaches should include primary support persons (i.e., family, friends, staff) and, as evidenced by our study, possibly peers as facilitators. These collaborative approaches are consistent with the charge by the U.S. Surgeon General (U.S. Public Health Service, 2002) to reduce health disparities between persons with intellectual and developmental disabilities and the general population. Among other recommendations, the report encourages health researchers to develop partnerships in which persons with disabilities, their family members, and other caregivers, including health care providers, are consulted and participate in relevant health research. Ultimately, future research efforts are needed on strategies to convey critical information about health and aging to women with intellectual and developmental disabilities and to include their perspectives as part of an ongoing process of health research, education, and service provision.
This study was conducted through the Rehabilitation Research and Training Center on Aging with Developmental Disabilities, at the University of Illinois at Chicago, and funded by the United States Department of Education, Office of Special Education, and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (Grants H1333B031134 and H133B080009). The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the United States government.
Editor-in-charge: Philip Ferguson
Allison A. Brown, PhD (E-mail: Allison.Brown@va.gov), Postdoctoral Fellow, U.S. Department of Veterans Affairs, Center for Management of Complex Chronic Care, 5000 S. 5th Ave. (151H), Bldg 1, Hines, IL 60141. Carol J. Gill, PhD, Associate Professor, University of Illinois at Chicago, Department of Disability & Human Development, 1640 W. Roosevelt Rd., Chicago, IL 60608.