Perspectives on self-management in multiple sclerosis: a focus group study.
The aim of this study was to elucidate the experience of self-management among people with multiple sclerosis (MS) and gather their input to inform a self-management intervention. Twelve people with MS participated in focus groups in which they were asked open-ended questions about MS symptoms, challenges, overcoming challenges, symptom management, and treatment preferences. The results suggest four major themes: 1) "The Everyday Experience of MS," including comments about symptoms and their impact on functioning; 2) "Motivation for Self-Management," including descriptions of motivation originating from physical necessity, success with other management techniques, and external sources; 3) "Coping Strategies and Skills," including descriptions of changing behaviors, expanding social support networks, finding resources, utilizing medical treatment, and monitoring symptoms; and 4) "Vision for a Self-Management Intervention," including suggestions that an intervention be individualized, be motivating, and provide resources. The results of this study can inform the design and implementation of self-management interventions. Experiences described by participants are consistent with other qualitative reports suggesting the active role people with MS play in managing their condition. Intervention approaches must consider the complex constellation of symptoms associated with MS and provide individualized treatments that enhance the person's ability to manage their symptoms, barriers presented by such symptoms, and their health care.
Department of Rehabilitation Medicine, University of Washington, Seattle, WA, USA.
Elizabeth S
ES
Knaster
Department of Rehabilitation Medicine, University of Washington, Seattle, WA, USA.
Kathryn M
KM
Yorkston
Department of Rehabilitation Medicine, University of Washington, Seattle, WA, USA.
Kurt
K
Johnson
Department of Rehabilitation Medicine, University of Washington, Seattle, WA, USA.
Kara A
KA
McMullen
Department of Rehabilitation Medicine, University of Washington, Seattle, WA, USA.
Dawn M
DM
Ehde