"We have not been here before": Aging and elderly women with intellectual disabilities
Greenwood, Nechama W.
MetadataShow full item record
BACKGROUNDS: Adults with intellectual disabilities (ID) face important health disparities, and are underrepresented in research. There is a particular lack of research from the perspective of members of this population. However, adults with ID are living longer than ever before, and, after a long history of institutionalization, are aging in the community. Aging adults with ID face important support gaps and challenges as pioneers in aging in the community. Aging women with ID are further marginalized by gender and age. This qualitative, participatory study explores lived experiences of aging and elderly women with intellectual disabilities. METHODS: In order to maximize voice for participants with ID, this study used qualitative, participatory methods including individual interviewing and Photo Voice, a participatory technique where participants are given cameras and become co-researchers on the project as they document their worlds. RESULTS: Important themes emerged including: The experience of aging with ID is a gendered phenomenon, anticipation of increased independence and community participation as a result of aging, community inclusion and the importance of relationships and belonging. Discussion: While further research is needed to quantify the experiences described by participants, the importance of community inclusion and relationships suggests that policy level supports for aging in place and individualized planning with be important for this generation of adults with ID. This thesis concludes with recommendations as to how adults with ID can best be supported in achieving healthy aging from a systems perspective.
Thesis (M.A.)--Boston University