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Pathways of change experienced by people aging with disability: a focus group study


Yorkston, K.M., Molton, I.R., McMullen, K.A., & Jensen, M.P



Publication Info:

Disability and Rehabilitation, 32:1687-1704


PURPOSE: To examine the issues related to aging with disability from the perspective of the person with the disabilities.
METHOD: Twelve community-dwelling adults with spinal cord injury (SCI), post-polio syndrome (PPS) or multiple sclerosis (MS) participated in focus groups where they were asked open-ended questions about changes related to aging with disability, accommodations made and perspectives on the future.
RESULTS: Results of qualitative analysis suggested five major themes related to aging with a disability: (1) Participant identity, including comments about how participants described themselves and their lives with a long-standing disability; (2) Physical pathways including comments about the progression of physical symptoms; (3) Psychosocial pathways, including descriptions of adaptations to disability, the development of emotional well-being and strategies to deal with disability; (4) Changing health care, reflecting improvement noted over time in health care services; and (5) Concerns about the future, including comments reflecting participant uncertainty about the potential course of disability.
CONCLUSIONS: The process of aging with disability was characterised by multiple pathways. Some, including positive psychosocial adjustment and medical advancements, were favourable, while others, including physical decline, were not. The co-existence of high quality of life in the presence of physical decline is consistent with a larger literature in older adults, and future research should focus on identifying aging factors that may contribute to the buffering the psychological impact of physical decline.

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