Statement of Problem and Background

This project represents the qualitative piece of the larger R.1.2 initially proposed. It was decided by the research team that data derived through qualitative approaches would augment and assist in interpreting the data emerging from the NHIS part of the project (led by Anderson, Minnesota site), providing the researchers a larger pool of information form which to draw recommendations and for developing training curricula.

This study responds to two trends: 1) women with intellectual disabilities (ID) are living longer and 2) they are increasingly integrated into the community rather than being placed in institutions. These trends indicate that this group of women is becoming more socially active and independent. Consequently, they and their families, caregivers, and health professionals need better information about health and aging to support healthier futures for these women as they age. There is little research documenting how these women understand their health needs or the implication of the aging process, yet such information is critical for developing health education programs and clinical services for these women. This information is also critical for counseling families on how to support the health and well-being of the women, and for training health service professionals.

Women's health initiatives of the 1990's address the historic neglect of women's complex health issues in our nation's research agenda. A number of recent conferences, articles and research efforts have underscored the particular neglect of women with disabilities (Krotoski, Nosek, & Turk, 1996). In contrast to women in the general population, health research on women with disabilities is still sparse, most of it focusing on working-age women with physical disabilities.

Limited studies on persons with physical and specific developmental disabilities suggest that disability status and related treatments can significantly affect the process of aging for women. For example, preliminary reports on women with disabilities suggest that osteoporosis may occur earlier than in the non-disabled population (Turk et. al, 1995), leading to an increased risk of fractures. Longtime use of anticonvulsants is also a known risk factor for osteoporosis for both sexes. Women with cerebral palsy may be at increased risk of complications from cervical spinal stenosis and inadequate pain management, which may affect their functional mobility (Turk et. al, 1995). A higher prevalence of obesity exists among adult women with mental retardation (MR) (Rimmer et al., 1993) and Down syndrome (DS) (Rubin et al., 1998) than in their non-disabled peers.

Most existing studies of women with MR focus on women living in residential facilities rather than in natural settings. Furthermore, the findings from cross?sectional studies should be viewed as studies of "survivors" who are relatively healthy and who have good functional skills (Moss, 1991; Anderson, 1993), in contrast to large longitudinal studies, which more accurately show the rate of decline (Eyman & Widaman, 1987). In addition, some health conditions may be undiagnosed and underreported in survey research on people with cognitive impairments (Anderson et al., 1987). Finally, a host of other factors influence health conditions and mortality rates, including severity and type(s) of disability and residential versus. community placement (Chaney, Eyman, Givens, & Valdes, 1985; Strauss & Eyman, 1996; Strauss & Kastner, 1997). This is a critical knowledge gap. As women with MR become visible and empowered through policies that support greater community integration and longevity, they and their families, professionals and advocates need accurate information about their health concerns and options. They need to know, for example, expected health timelines (e.g., age of menopause), risks for secondary conditions (e.g., medication-related osteoporosis), health-enhancing behaviors (e.g., health screening tests), and utilization of and satisfaction with services. Such information is crucial in planning supports for successful community living and for decision-making on both the individual and public policy levels.

The overall purpose of this project is to conduct a study in which the health status needs, and experiences of older women with ID disabilities are examined qualitatively. The findings will augment extant research and will represent a pioneer effort that allows women with ID to convey information about their health needs and concerns, in their own words.
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Conceptual/Theoretical Model

A grounded theory approach was used to allow the perspectives of the participants, rather than a pre-selected theory to shape the research discussions and guide interpretations.
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Research Questions or Hypotheses

The overall objectives of the project are to:
1. Use focus group methodology to explore and document the views and experiences of women with ID, age 30 and above, regarding health concerns, health status, access to health information, aging, health services, health practices, women's health issues, psychological well-being, and the experience of disability;
2. Analyze and interpret these data in the context of quantitative research findings;
3. Incorporate the resulting information in the design and evaluation of a professional training component to address documented deficiencies in health provider knowledge regarding women with ID; and,
4. Plan and implement a comprehensive dissemination effort to convey critical information about health and aging to women with ID, their families, advocates, service providers and policy-makers.
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Methodology

This is an exploratory qualitative research project, utilizing a semi-structured focus group format designed to collect, summarize, analyze and/or interpret information as provided by the participants' verbal responses to open-ended questions. This research was informed throughout by a general conceptualization of disability as a complex social category multiply determined by interacting social, cultural, political, and physiological phenomena. However, consistent with a grounded theory approach to qualitative research, the investigators allowed the perspectives of the participants, rather than any pre-selected theory, to shape the research discussions and guide interpretations. Six focus groups with women with ID regarding their perceptions of health and aging. The results of these groups were analyzed to determine how women with ID frame their own health and aging issues.

Subjects were recruited through Chicago area agencies providing services for persons with developmental disabilities. Agency staff assisted the research team in recruitment by identifying potential participants and providing guardian contacts, if appropriate. Eligible study participants were women age 30 or older, currently receiving services through a developmental disability service agency. We were interested in recruiting participants with diverse disability types and cultural backgrounds who were able to respond to simply stated open-ended questions. Each focus group was comprised of 4 - 8 participants, and project research staff (facilitators).

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. None of the participants that assented/consented (with consent from legal guardians, if applicable) withdrew from the research. A copy of the consent was kept by both participants and the agency. The audiotape recordings of the discussions have been kept in a locked area and heard only by project staff for reports. Some of the participants' words are being used in reports, but identifying information will be deleted. Focus group participants were also asked to keep the discussion private and were informed that they were free to withdraw from the study at any time. Each participant was paid $5 for her time. Snacks and/or refreshments also were also made available.

Participants in the focus groups were asked questions by facilitators about their health, aging, disability, life experiences, and views of health services and health professionals. They were also asked questions about work and home, the people in their lives, the choices they make and overall well-being. Each focus group lasted approximately 90 - 120 minutes. Discussions were audiotape recorded by project staff. The women had opportunities to express their ideas, opinions, and feelings related to the above stated topics. Audio-taped responses were converted to printed transcripts and analyzed according to the constant comparative method. This analysis method is characterized by a process of: breaking down responses into meaningful segments, assigning descriptive code words to the segments, comparing coded segments within and across transcripts to develop a set of major themes, and noting relationships between themes that have potential theoretical importance.
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Progress to Date

Recruitment and enrollment has ended, with a total of 34 (29 participants 18 to 64 years of age; 5 participants 65+ years of age; 1 Asian or Pacifica Islander; 8 Black not of Hispanic origin; 23 White, not Hispanic origin) women with ID having participated in the study.

The investigators are currently completing the report of the final data analysis and preparing materials for presentations and publications. The information gathered from this project will be used in related RRTCADD activities to develop training materials for health and agency professionals on issues related to the health and well-being of women with ID as they age. It will also be used in reports on the health of women with ID and cited in other work by project staff concerning the health issues of persons with disabilities. Gill and Brown will be synthesizing this information for upcoming workshops, seminars and professional conference presentations, and electronic (listserv and web-based) media.
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Publications

Brown, A. A. & Gill, C. J. (2002). Women with developmental disabilities: health and aging. Current Women's Health Reports, 2, 219-225.

Gill, C. J. & Brown, A. A. (2002). Health and aging issues for women with intellectual disabilities in their own voices. In P. N. Walsh & T. Heller (Eds.). Health of Women with Intellectual Disabilities. Oxford, England: Blackwell Science.

Gill, C.J. & Brown, A.A. (2001). Overview of health issues of older women with intellectual disabilities. Physical and Occupational Therapy in Geriatrics, vol. 18, no. 1, 23-36. Concurrently published in J. Hammel & S. M. Nochajski (Eds.). (2000). Aging and Developmental Disability: Current Research Programming and Practice
Implications. Binghamton, NY: Haworth Press.

Walsh, P.N., Heller, T., Schupf, N., van Schrojenstein Lantman-de Valk, H, & Working Group. (2000). Healthy Ageing - Adults with Intellectual Disabilities: Women's Health Issues. Geneva, Switzerland: World Health Organization.

Brown, A. A. & Murphy, L. (1999). Aging with developmental disabilities: Women's health issues. Arlington, TX: The rc of the United States and the RRTC on Aging with Mental Retardation.
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Key Findings and Potential Implications

Major themes from the data analysis include: a) issues of aging in general; b) knowledge of women's health; c) health promotion; d) concerns about health care services and health professionals; e) perception of disability; f) vulnerability and abuse; and, g) protection and empowerment issues. Findings indicated that the most negative perceptions held by the women related to aging, misconceptions and limited knowledge regarding age-related physical and psychosocial changes. The women expressed a desire for more information about their bodies, explanations of health service procedures. They also tended not to identify as having a disability, lacked information on health promoting behaviors, discussed engaging in high-risk behaviors without clear understanding of potential consequences, and lacked information and autonomy regarding personal rights and empowerment in managing their own health.

This project also contributes information to a larger group of RRTC studies related to health promotion and aging (see Heller-R.1.1, Janicki-R.1.4), in conjunction with an epidemiologic hormone study on women with Down syndrome (see Schupf - R.1.3). The RRTC/ADD consumer and professional advisors were involved in years one and two to help draft and revise focus group questions, and offered their comments and insights on the initial findings. They also were instrumental in providing comments for content and revisions to drafts of the related fact sheet on MR, aging and women's health. In year five, advocate advisors will be involved in developing additional training materials and dissemination products.
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(b) NHIS Data
Statement of Problem and Background
Conceptual/Theoretical Model
Research Questions or Hypotheses
Methodology
Progress to Date
Key Findings and Potential Implications
Presentations and Publications

Statement of Problem and Background

A national study of adults living in residential facilities (Anderson et al., 1987), reported that women were significantly more likely than men to have malnutrition/obesity and to have seen a nutritionist, but less likely to have had liver problems, brain damage and gum disease. The National Medical Expenditure Survey's (1987), which included only 19 older women with mental retardation (MR) living in the community, indicated that only 20% had received a pap smear within the past year, 26% had received one within two years but more than one year ago, 58% had received one more than two years ago, and 16% had never had one. One-quarter had never received a breast examination and only 15% had ever had a mammogram (Anderson, 1996). Due to the small sample size, further examination of these health issues is needed. Studies also found that the age of onset for menopause may be younger in women with Down syndrome (DS) (Schupf, et. al 1997; Carr & Hollins, 1995). This finding is consistent with the notion of accelerated aging in people with DS. Although these individual studies are informative, research that systematically investigates the health trajectories of noninstitutionalized aging women with MR and compares them to the trajectories of aging women with other disabilities, aging women in general, and aging men with MR is not available. The central goal of this project is to fill this knowledge gap regarding the health status and needs of older women with MR by analyzing and disseminating relevant information from the 1994-1995 National Health Interview Survey core and disability supplement (NHIS-D). Specifically, the study is developing a broad, national framework of information about the health care status of women with intellectual and/or developmental disabilities during their middle and older years.
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Conceptual/Theoretical Model

The project used physiological models of aging to examine health status of women with intellectual and/or developmental disabilities.
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Research Questions or Hypotheses

The overall objectives of the project are to:
1. What is the prevalence of various types of health?related conditions, limitations, needs and services among older women with MR?
2. Do older men and women with MR differ from one another in health conditions or service utilization?
3. How do women aging with MR differ from women aging with other disabilities and women in the general population?
4. How are education and employment related to health issues for older women with MR?
5. What factors are most strongly associated with good or poor health?
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Methodology

The National Health Interview Survey (NHIS) is a household survey administered annually to a representative sample of over 40,000 households, and over 100,000 civilian, noninstitutionalized adults in the U.S. to elicit detailed health information about the U.S. population. In 1994 and again in 1995, a two-stage Disability Supplement (NHIS-D) was added to the Core Survey to provide policy-relevant information about persons with disabilities. The NHIS-D identified respondents with disabilities and elicited additional information about their health perceptions, their health care experiences, service usage, and other health-related concerns (National Center for Health Statistics (1997, 1998).

The present study selected the sample of women age 30 and older with either developmental disabilities (DD), mental retardation (MR) or both (MR/DD). The age range selected in this study reflects the differences in mortality and morbidity risks for adults with certain disabilities, permits study of women with a wider range of more severe disabilities, some of which are underrepresented in the older age ranges, and permits observation of early age-related changes. Each person in the survey received an individualized weight factor, reflecting the fact that survey respondents were selected to be representative of geographical areas, age, sex, race, and ethnicity, necessitating analysis of weighted data in order for the correct proportions. The NHIS-D's complex design required special procedures for variance estimation for unbiased estimates of national prevalence rates. Population estimates were developed using the Taylor linear variance estimation method, with weighted data from 1994-1995 combined. Statistical comparisons are based upon weighted data, using SUDAAN.
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Progress to Date

Delineating a sample of older women with MR/ DD required refinement of the database to provide samples which optimally reflected both the survey's intent and the mandates governing the definitions of MR and DD. Respondents were identified as having MR but not a DD, a DD but not MR or both (MR/DD). Results have been obtained for population and demographic statistics. Additionally, analyses have been done on health indicators, including women's perceptions of their health status, activities of daily living (ADL) and instrumental activities of daily living (IADL) status, health care services utilized in the prior year, activity limitations due to health problems, and indicators of psychological functioning were used to provide a broad picture of health and health-related functioning. The impact of having a developmental disability was most evident in the health area, whereas the impact of an intellectual disability, particularly when combined with a developmental disability, was most apparent in the area of daily living skills.

Population and demographics. The following results were obtained for the population, sample demographics, and the health and related issues affecting women aging with I/DD.

Phase I - proxies were the sole respondents for 16%, 22% and 46% of respondents with developmental disabilities (DD), mental retardation (MR) and both, respectively, and another 9-16% were partial respondents. Phase II - was similar to Phase I.

• Women with DD and/or MR comprise an increasingly smaller proportion of the non-institutionalized population living in the community as they age (.95% of the population of civilian, non-institutionalized females under the age of 30, but only .20% over the age of 30).
  
• The majority (62%) of women age 30 and older with MR alone had married at some point, although only one in four were still living with their spouse. In contrast, 70% of women with both MR/DD had never married. The impact of having a developmental disability as well as MR was considerable - women with both MR/DD were unlikely to have married, were more likely to be living with relatives (69% vs. 51% respectively), and were more likely to report having had no formal education (54% vs. 40%).
  
• Combining women age 30 and over with MR and both MR/DD, one in ten women with ID also had Down syndrome, and 8% had cerebral palsy. One in five (21%) women with ID were working. Reported family incomes were typically quite low, with 60% of women with ID reporting 1994-95 family incomes of less than $20,000, and slightly over one-quarter reporting family incomes of less than $10,000. One in four (26%) women with ID lived below the poverty level, which was about 2.5 times the percentage of women in general age 30 and older below the poverty threshold (10%).
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Publications

Anderson, D.J. (accepted, in final revision process). Health status of women aging with mental retardation. Research in Social Science and Disability.

Anderson, D.J. (in press). Health, Age, and Gender: How do Women with Intellectual Disabilities Fare? Journal of Gerontological Social Work, 37, (3/4).

Anderson, D.J. (in press). Women Aging with Intellectual Disabilities: What are the Health Risks? In P.N. Walsh & T. Heller, (Eds.), Health of women with intellectual disabilities. Oxford, UK: Blackwell Science.

Larson, S.A., Lakin, C.K., Anderson, L., Kwak, N., Lee, J.H.., & Anderson, D. (2001). The prevalence of mental retardation and developmental disabilities: Estimates from the 1994/1995 National Health Interview Survey Disability Supplements. American Journal of Mental Retardation, 106 (3), 231-52.
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Key Findings and Potential Implications

The high rate of poverty was one of the more troubling findings. Extremely low incomes are likely to cause multiple strains that may affect health, including difficulty in paying for uncovered health care services and goods, in transportation for medical care, in having sufficient income for a healthful diet, supplements, medications, preventive care, medical devices, etc., and for allied medical services that may be needed. Poverty may be a disincentive to living independently. In addition, numerous research findings attest to the adverse health effects of poverty, although the aspects of poverty involved and how these effects are translated into health outcomes are not clear. Relative affluence may be protective for genetic risk factors by early nutritional enhancement of brain development. Poverty may also contribute to stress, which, if prolonged, is associated through cortical steroids with adverse health outcomes.

The findings regarding marital status reflects some important differences between women who remain in the community, who are likely to have more freedom in their life (and health) choices, and women living in licensed residential facilities. Although marriage is often viewed as social support, which can be a buffer to stress and an aid in encouraging appropriate health care, it is less clear that this is the case with women with ID, both because of traditional caretaking roles being assigned to women and to the high rate of disrupted marriages among this group, suggesting that there may be considerable stresses on such relationships.
Almost 9 in 10 women with ID indicated that they had seen a doctor within the previous year. Case management was the most frequently received allied health service, with 36% and 25% respectively receiving this; physical therapy had been received by 6% of women with ID, and occupational therapy by 2%.

Health indicators. Most (84%) women in general age 30 and older without ID or DD rated their overall health as good to excellent. Fewer (64%) women with ID indicated this, and women with DD alone were most negative about their health, only 38% so indicating.

ADLs and IADLs: Women in the general population (without ID or DD) were almost always (96%) independent in ADLs, whereas about 2 in 3 with ID reported independence in all ADLs (69%). An examination of specific ADL areas found that 90% or more of women with ID reported no problems eating, getting in and out of a chair, getting around inside, and using the toilet. The most difficult tasks were dressing and bathing (about 1 in 3 women with ID needed help). IADLs, including meal preparation, shopping, managing money, using the telephone, doing heavy work around the house and doing light work, were problematic for many respondents, and group differences were much larger than for ADLs. Just over half (55%) of women with MR alone were independent in all IADL areas. Women with both ID and DD were seldom independent in IADLs (17%), and the areas in which they were most likely to report difficulty were in "managing money" and "shopping," both of which involve fairly complex cognitive skills. Women without either of these disabilities were by far the most independent, almost 9 in 10 reporting independence in all IADLs (89%).

Mobility and activity limitation: Slightly more than one-quarter of women with ID reporting difficulty walking and going up steps, and about 13% used some type of mobility aid. Lifting was difficult for 23%, bending for 16%, standing for 19%, and reaching, using fingers, or writing with a pen were difficult for 9-10%. Over three quarters of the estimated population of women in general of this age, but very few women with ID, reported no activity limitations (78% and 13% respectively). Most commonly, "activity limitations" meant being unable to perform a major activity (e.g., work, student, housewife). Secondarily, about one quarter of women with ID and 8% of women without disabilities indicated that they were limited in engaging in the kind or amount of activity. Prior studies have demonstrated that disability, inactivity and weak muscle strength serve to reinforce each other in a spiral of further disability, and adults with ID living at home are particularly likely to be physically inactive. Greater attention needs to be paid to the issues of obesity and fitness.

Communication and sensory concerns: Although nearly one in four women with ID had trouble communicating with others outside the family, and 20% had difficulty understanding others, only 12% reported communication difficulties within the family.

Mental Health: Psychological distress was much more widespread among women with ID than among women in general. The extent of reported psychological and social difficulties suggests that this is an extraordinarily distressed group, in contrast to women without ID. A substantial minority (27%) of women with ID reported serious difficulty coping with day to day stresses, but this was rare for women in general (3%). Women with ID had somewhat greater success in the social sphere, including making and keeping friends and in getting along in social settings, but they still had a great deal more difficulty than women without such disabilities (15% of women with ID, compared with less than 1% of women in general indicated serious difficulties with friendships; 13% and .5% respectively had social difficulties).

Summary. In comparison with women in general, women with these disabilities have considerable vulnerability - a combination of very poor financial and educational resources, physical limitations, and psychological distress, particularly depression and anxiety, but also marked confusion or forgetfulness, difficulty concentrating, difficulty coping with life's stresses, and social difficulties. These findings present a picture of women with few coping skills, whose sense of well-being and ability to plan and implement strategies to deal with challenges is often poor, and who may not have adequate financial, emotional and practical support (The majority had no case coordinator; many were not living with their families; and few worked). High levels of depression and stress have been shown in many studies to be a risk factor for disease and disability. The markedly elevated rates of several risk factors for disease and disability strongly suggest that more attention needs to be paid to the social context, and in particular to psychological health. However, there were also differences among the three disability groups. Having a developmental disability had less impact on educational attainment than MR or both, and women with DD were the most likely to be self-respondents, to live apart from their family, and to have married. However, they were also the most likely to be below the poverty index, to have negative perceptions of their health, to be limited in major activities, and to experience ADL difficulties. IADL difficulties were substantial.Women with MR alone were almost as likely to have married as women with DD, although they did not share their relatively high educational levels, they were much more likely to be independent in IADLS than women with either MR or DD, and they were the least likely to indicate limitations in major activities.

Women with both disabilities (MR/DD) appeared in most respects to be more severely affected, having some of the impairments of both intellectual and physical disabilities. They were most likely to have a proxy respond for them, they declined most precipitously from the community in the 30+ age group, and they were also least likely to have members in their 60's and 70's. A large percentage had no education, they tended to live with their families, and most had never married. Very few were independent in IADLs, similar to individuals with DD, but the tasks they had the most difficulty with tended to be tasks in which both cognitive skills and physical skills were needed, such as shopping, whereas women with DD more typically had difficulty with IADLs with more demanding physical requirements, such as lifting. A large percentage indicated that their disability had impacted major life activities. However, they were similar to the less severely affected women with MR on ADL's, they had the most positive assessment of their health status, and they were the least likely to be living below the poverty level of the three disability groups.

The study demonstrates a high level of certain types of limitations, some of which are affected by both cognitive and physical factors, including many of the IADLs, and suggests that the needs of these groups of women are multiple in nature, involving economic resources, work-related disability, education, and social and family supports, in addition to rehabilitative supports more directly linked to specific disabilities.
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BIOSKETCH

Carol J. Gill, Ph.D. is a researcher, educator, and disability studies scholar. She is formally trained as a clinical and research psychologist specializing in health and disability. She is an Assistant Professor in the Department of Disability and Human Development at the University of Illinois at Chicago (UIC), where she co-leads the specialization in Disability Studies and Social Policy of the Departmental Master's Degree Program. She is also an Adjunct Assistant Professor of Physical Medicine and Rehabilitation at Northwestern University Medical School. Dr. Gill co-founded and now directs the department's Chicago Center for Disability Research, through which she and colleagues conduct research, training and community service projects in the social sciences that invite support and authentic direction by Disabled persons at all levels. Since 1998, Dr. Gill has served as the Executive Officer of the Society for Disability Studies. Her research interests include disability identity development, health concerns and health service experiences of women with disabilities, disability bioethical issues and professional training. She has served as Principal Investigator of three Field-Initiated Research projects funded by the National Institute on Disability and Rehabilitation Research in the U.S. Department of Education. Her conceptual and research articles have been widely published in both professional journals and in the popular disability press.

Allison A. Brown is a research project coordinator and trainer for the RRTC-ADD, Department of Disability and Human Development, University of Illinois at Chicago (UIC), where she co-leads research activities pertaining to aging and women's health. She is currently a PhD student in the School of Public Health, and has worked in the developmental disability field for 14 years. In her work at UIC, she has been responsible for coordinating several research studies; supervising student assistants; providing technical assistance and training to local agency staff (serving as the Chicago Association for Retarded Citizens UAP Fellow); developing and managing internet-based research websites and electronic mailing lists on aging and developmental disabilities. She also serves as computer support liaison for the RRTC-ADD. In addition to her work at UIC, she serves as a member of the Women's Research Advisory Committee for Howard Brown Health Center in Chicago, advocating for and conducting research on health needs of bisexual/lesbian women with disabilities. Her research interests include health concerns and experiences of women with disabilities, qualitative research approaches, LGBT health issues in disability, and cross-disability advocacy for women with disabilities.

Link to: Medical Education on Women's Health (T1.1)

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