Understanding Leisure-Time Physical Activity: Voices of People with MS Who Have Moderate to Severe Disability and Their Family Caregivers

Background: Leisure–time physical activity is beneficial for all people, yet people affected by multiple sclerosis (MS) find regular engagement in leisure-time physical activity challenging. These people include both individuals with the disease and their family caregivers. For individuals with moderate to severe disability, engagement in leisure-time physical activity can be particularly challenging. Given that people with MS and their family caregivers often react to the disease as one interdependent unit, there may be benefit to dyadic programs that support their joint engagement in leisure-time physical activity.

Objectives: A qualitative study was undertaken to explore perceptions of leisure-time physical activity and directions for intervention among people with moderate to severe MS and their family caregivers.

Methods: Six focus groups with thirty-five individuals (23 people with moderate to severe MS and 12 family caregivers) were conducted, digitally recorded and transcribed. Data were analyzed using the principles of thematic analysis

Results: Three major themes emerged: (1) Cycle of disengagement – awareness of limitations, mourning loss; (2) Cycle of adjustment ­– acceptance, collaborative problem solving; and (3) Leisure-time physical activity as a continuum. These themes reflect the shared construction of physical activity experience between people with MS and their family caregivers. Several factors acted as drivers of the cycle of disengagement including internal obstacles, external obstacles and negative feedback, as well as health constraints. People with MS and their family caregivers who remained in the cycle of disengagement reported participating in little or no physical activity. Factors inhibiting the cycle of disengagement included supportive influences in the community, supportive policies and positive social networks. These same factors also acted as drivers to the cycle of adjustment. Presence of community, policy and social network supports encouraged people with MS and their family caregivers to participate in leisure-time physical activity.

Conclusions: The findings indicate the need for both caregiver and care-recipient to adapt to the broad effect of MS on their lives and work together to find options to engage in physical activity. The findings also highlight the importance of addressing caregiver/care-recipient dyads as a focus for intervention.