Review of Literature
Noting major disparities in the health status and care of adults with intellectual and developmental disabilities (I/DD), the US Surgeon General’s Report (2002) described gaps in professional knowledge, clinical experience and interest in their general and specialized needs (Bond, Kerr, Dunstan & Thapar, 1997). Women with I/DD are particularly vulnerable to these disparities as they also experience gender-related health service gaps, such as lack of appropriate and accessible screenings, social inequities, and discriminatory attitudes (Sank & LaFleche, 1981). Also many women with I/DD experience some age-related health changes (e.g., menopause) and chronic conditions (e.g., osteoporosis, Alzheimer’s disease) at an earlier age or at a higher prevalence than the general population (Walsh & Heller,2002). Stigma and discrimination related to their disability has led to higher rates of sterilization, menstrual management, abuse, and mental health issues for women with I/DD, and often health decisions are made for them (Block, 2000; Brown & Gill, 2002; Edgerton, 1993).
The growing presence and empowerment of women with disabilities mean that they are less likely to be institutionalized or restricted to specialized services, and more likely to be part of any health professional’s practice. Consequently, health professionals have a new knowledge base to master. In response to the outcry of women with disabilities regarding their under-representation in the nation’s health agenda, health professionals and community groups have started to design programs that offer accessible information and health service options t to women with disabilities (McCarthy, 1998; Lunsky, 2002; Simpson & Lankasky, 2001).
Despite these promising trends in both disability and women’s health, there is little research-based evidence documenting how women with I/DD understand their health needs, their health interactions, or the implications of the access and barriers to health services they share with their physically/sensory disabled peers (Gill & Brown, 2000; McCarthy, 1998). This information is critical for developing health education programs and clinical services for these women, adapting and sharing resources of the larger disabled women’s health community, and for developing comprehensive health professional training. Equally important is the need to expand the network of resources and information for counseling families and community agency staff on how to support the health and well-being of women with I/DD.
A previous RRTC study using focus group methodology found that women with I/DD held mostly negative perceptions of aging; and had misconceptions and limited knowledge regarding age-related physical and psychosocial changes, health service procedures and health promoting behaviors; experienced past trauma and abuse, and acute grief from loss of family members; and tended not to identify as having a mental or intellectual disability (Brown & Gill, 2002). Building on the previous study, the proposed study will: 1) contribute knowledge on health issues, perceptions and experiences of women with I/DD and the experiences of their caregivers and health professionals in providing them support and health care; 2) further develop conceptual models of community health for women with I/DD; 3) explore innovative ways of connecting women with I/DD to the larger network of community resources for other women with disabilities; and 4) develop guidelines for appropriate, accessible health services and programs for women with I/DD. The research will include two phases: 1) case studies of women with I/DD, caregivers, and health professionals; and 2) an embedded single-case study of a community action research process for developing and/or enhancing health programs at a local disabled women’s health center to increase integration and inclusion of women with I/DD.
Sample Population and Methodology
In Phase I, the sample will be 8 ethnically diverse adult women determined to have I/DD through local provider agencies and advocacy groups. Additional case-study participants (informants) recruited for this project will include the women’s primary caregivers and/or support persons, and health professionals who provide services to women with disabilities. In Phase II, the case unit to be studied is the community action group process. The women in Phase I will be asked if they wish to participate as members of a community action research team, facilitated by the researcher. Primary caregivers and/or support persons, staff/participants at a local health center for women with disabilities, and health professionals who provide services to women with disabilities will also be invited to participate as team members.
The proposed study will identify and address health issues for women with I/DD using exploratory and explanatory case study methodology (Stake, 1995; Yin, 2003). This qualitative approach was chosen as it provides a process for conducting an in-depth empirical inquiry into a phenomenon within a real-life context, and with multiple sources of evidence.. Major factors in health care for women with I/DD are relatively unknown, and therefore many quantitative approaches may not be able to capture relevant details or causal insights. The multiple embedded case study design also allows us to study the process factors of the group, as well as each case as a separate entity within the group.
Phase I – Individual Case Studies. A semi-structured Interview Guide will be developed by the researchers based on themes of previous focus groups findings. The researcher will conduct face-to-face interviews with women with I/DD, asking open-ended in-depth questions on issues such as, information they want about their health, their understanding of rights and/or violations of their rights, descriptions of their interactions with health professionals and how they plan for health visits, preferences in how they would like health education communicated to them, their opinions about the health services they receive, supports they receive or need, and their opinions about how to improve health interactions and services. Key case informants will also be interviewed and asked about their views, interactions and experiences related to health care of women with I/D, based on health issues identified from the interviews with women with I/DD. Responses will be audio-recorded and transcribed. If audiotaped transcripts of informant phone interviews are not possible, the researcher will utilize data from detailed notes, and verify the accuracy of the notes with the informants. Each interview should last about 60 minutes and will be conducted at a location chosen by participants and informants, in a separate private space.
Phase II – Embedded Single-Case Study. In Phase II, the case study unit to be studied is a system of action, or the group process. The Health Resource for Women with Disabilities (HRCWD) at the Rehabilitation Institute of Chicago is an exemplary program that provides health services to women with physical and sensory disabilities in an accessible environment, sensitive to the complexity of their disability and women's health needs. They offer a network of empowerment resources, ongoing education seminars and peer support groups for disabled women, and educational sessions for healthcare professionals. Women with I/DD from Phase I, their caregivers, program staff and participants from HRCWD, and health professionals who provide services for disabled women will be identified and invited to participate as collaborative team members. The researcher will facilitate meetings to generate strategies for increasing the participation of women with I/DD in programs and services at HRCWD. This process includes the following steps: 1) introduce and orient women with I/DD to HRCWD staff resources and program participants; 2) arrange to have them participate in activities that interest them; 3) facilitate a community action research team meeting, consisting of sharing these experiences and discussing ideas for improving health programs for women with I/DD; 3) as a team, develop a blueprint for inclusion of women with I/DD; 4) present the blueprint at the HRCWD Board meeting; and; 5) discuss the outcomes and future steps. Observational data will be collected by the researcher. An observer guide and discussion protocol will be developed. Throughout the process, women with I/DD will be encouraged to express their thoughts and feelings, solve problems, help develop goals, and implement actions for the team.
The collective case studies method is known as a triangulated research strategy because it employs the use of multiple methods and/or sources of data collection in order to establish trustworthiness. Credibility and consistency of findings will be achieved by combining the researcher’s interview and observation field notes with interview transcripts of case study subjects and key informants. Both Phase I and Phase II will involve an ongoing analysis of data for common themes, issues and problems. Data will be analyzed as it is collected through the process of open coding. Interview transcripts will be analyzed and coded using the constant comparative method, and conceptualizing underlying patterns in the data. Context analyses will be included for participant observational data. The researcher will analyze notes on content, group dynamics and interpersonal interactions, including nonverbal responses of participants. Common themes will be identified and examined in relation to the context and meanings of the conveyed experiences of women with I/DD, and related to responses of informants, and members of the community action research team. Initial stages of data analysis will guide further refinement of key concepts, coding schemes, and future data collection. Data will be presented to participants to check for confirmation or revision of data and interpretations (Miles & Huberman, 1994). Atlas.ti software will be used for data management.