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

Disabil Rehabil. 2010;32(20):1697-704. doi: 10.3109/09638281003678317.


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.

Publication types

  • Research Support, U.S. Gov't, Non-P.H.S.

MeSH terms

  • Adaptation, Psychological*
  • Aged
  • Aged, 80 and over
  • Aging* / psychology
  • Disabled Persons / psychology
  • Disabled Persons / rehabilitation*
  • Female
  • Focus Groups
  • Humans
  • Male
  • Middle Aged
  • Multiple Sclerosis / psychology
  • Multiple Sclerosis / rehabilitation
  • Postpoliomyelitis Syndrome / psychology
  • Postpoliomyelitis Syndrome / rehabilitation
  • Quality of Life*
  • Spinal Cord Injuries / psychology
  • Spinal Cord Injuries / rehabilitation
  • Washington