Aging with multiple sclerosis: pathways of change, a focus group study.

TitleAging with multiple sclerosis: pathways of change, a focus group study.
Publication TypeJournal Article
AuthorsMolton IR, Johnson KL, McMullen KA, Yorkston KM, Jensen MP
JournalMultiple Sclerosis

Introduction: Due to advances in healthcare, an increasing number of people with disabilities such as multiple sclerosis (MS) are aging with disability. However, little is known about the changes they experience as they grow older. This study examines the experience of people aging with MS and other disabilities. The heterogeneity of the sample allowed comparisons across disability groups, including whether aging differed with type of disability. Methods: Adults near Seattle, WA, USA with MS and other disabilities participated in four focus groups, with 5-7 participants each. Participants were recruited through involvement in previous research, attendance at clinics at the University of Washington, and through advertisements with groups such as the National MS Society. 26 people participated, of whom 8 were diagnosed with MS. Participants were compensated for their time; all procedures were approved by the University of Washington Institutional Review Board. Focus group facilitators asked open-ended questions about changes related to aging with disability. Participants, including people with post-polio, muscular dystrophy, and spinal cord injury, were encouraged to share personal experience. Results: Five themes emerged from qualitative data analysis of focus group transcripts. These themes were endorsed by participants in all disability groups: (1) Participant Identity: how participants described themselves and their lives with a disability; (2) Physical Pathways: decline in physical functioning; (3) Psychosocial Pathways: adaptations to disability, the development of emotional well-being and strategies to deal with disability; (4) Changing Health Care: improvement noted over time in health care services; and (5) Concerns About the Future: uncertainty about the potential course of disability. Conclusions: Aging with MS and other disabilities was characterized by multiple pathways. These were similar for all individuals across disability groups. Some, including positive psychosocial adjustment and medical advancements, were favorable. Others, including physical decline, were not. The co-existence of high quality of life in the presence of physical decline is consistent with literature on older adults, and future research should focus on factors that may contribute to the buffering the psychological impact of physical decline. Further research could help inform interventions intended to maintain psychological well-being.

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