The experience of attending a lay-led, chronic disease self-management programme from the perspective of participants with multiple sclerosis

Abstract

A lay-led, community-based intervention, the Chronic Disease Self-Management Course (CDSMC) is effective for a range of long-term health conditions (e.g. arthritis, heart disease). However, the perceived value and experience of the CDSMC for people with Multiple Sclerosis (MS) has not been examined. The present qualitative study addressed this omission. Ten participants with MS (7 female; age range 35 to 60 years; disease duration 4 to 19 years) were interviewed before attending the CDSMC and at 4-month follow-up. Data were analysed using Framework Analysis. Some participants learned new self-management techniques and reported enhanced confidence (self-efficacy), whereas other participants were already confident in their self-management ability and found the CDSMC acted as a reminder of techniques previously used. Relaxation, pacing, and goal setting were particularly valuable for managing fatigue. Goal setting helped some participants to build confidence. Participants valued meeting similar others including those with different conditions. The CDSMC was an opportunity for social comparison and inspirational role modelling. Improvements to the CDSMC were suggested, including the addition of specific MS information. Overall, the CDSMC was viewed as a valuable source of new skills and a reminder of previously learned self-management skills, particularly in the context of managing fatigue. Gender differences emerged.

Keywords:

• multiple sclerosis
• qualitative
• self-management
• self-efficacy
• fatigue