Balancing participation and fall risk in people with multiple sclerosis – a qualitative study

Objective To explore the experiences of people with multiple sclerosis (MS) to understand how living with the risk of falling impacts their current participation, and their strategies to maintain participation in the future. Design Qualitative interview study. Methods Individual face-to-face or telephone interviews were conducted with 12 people with MS, using a semi-structured interview guide. Inclusion criteria were having a diagnosis of MS, having experienced at least one self-reported fall during the last 12 months, and not using a walking device continuously. The interviews were analysed using inductive content analysis. Results The informants’ mean age was 49 years, 10 of the 12 were women, and mean time since diagnosis was 7 years. The analysis resulted in six subthemes with categories, and an overarching theme: balancing participation and fall risk. The informants described actions taken to remain in the work force, strategies to participate in social and civic life, striving to continue with home-based activities due to challenges in working life, and hurdles both within and outside the home. Similar strategies were used at work and at home to continue with valued activities. Conclusions The participants with MS described balancing participation with the risk of falling. In order to continue working, and performing their social and home activities, the informants had to adjust, plan and ask for help from others. We recommend that clinical conversations with people with MS should move beyond body function, activities and contextual factors to include participation, to get a complete picture.