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

TitlePathways of change experienced by people aging with disability: a focus group study.
Publication TypeJournal Article
AuthorsYorkston KM, McMullen KA, Molton IR, Jensen MP
JournalDisability and Rehabilitation
Date Published2010
Adaptation, Psychological, Aged, Aged, 80 and over, Aging, Disabled Persons, Female, Focus Groups, Humans, Male, Middle Aged, Multiple Sclerosis, Postpoliomyelitis Syndrome, Quality of Life, Spinal Cord Injuries, Washington

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.

PubMed ID20225933