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

Abstract

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.

Keywords:

• Aging
• qualitative research
• adjustment

Acknowledgements

The contents of this article were developed under a grant from the Department of Education, NIDRR grant number H133B080024. However, these contents do not necessarily represent the policy of the Department of Education, and the readers should not assume endorsement by the Federal Government.

Notes

1. Three participants were unable to take part on the scheduled day because of transportation problems.