Understanding the Health Experiences of Women with Intellectual/Developmental Disabilities: Case Studies

Women with intellectual/developmental disabilities (I/DD) remain under-represented in national health research agendas. As this population becomes more 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. Four qualitative case studies were conducted in which the health experiences of women with I/DD were examined and informed by members of their health networks (family, agency staff, and health professionals) as key case informants. Findings indicated that the women had overall positive views of their health but faced multiple barriers, incuding the lack basic health knowledge and opportunities for decision-making, and concerns that conflicted with their members of their health support networks. The results are discussed in relation to implications for improving health experiences through increased health education for women with I/DD and better training for members of their health support networks. This study supports a community-based approach to developing a personal health support network model.