Disability and rehabilitation · 2010
Pathways of change experienced by people aging with disability: a focus group study.
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Yorkston Kathryn M, McMullan Kara A, Molton Ivan, Jensen Mark P
Аннотация
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.
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.