Community-Based Participatory Action Research: What do persons with Multiple Sclerosis want in a Health Promotion Invention?

BACKGROUND: Individuals with multiple sclerosis (MS) are inactive and in need of quality physical activity (PA) health promotion programs (HHP). Yet, little is known about how to increase PA in the MS population. Qualitative research is a good method when little is known about a phenomenon, in this case the PA HHP needs for those with MS, and community-based participatory research (CBPR) is an important method used to empower individuals throughout the research process. Therefore, the purpose of this study was to qualitatively explore PA HP strategies in persons with MS using CBPR. METHODS: Eight adults with MS (7F, 1M) between the ages of 24 and 66 years were included in focus group (FG) discussions. There were 3 FGs with 2-3 participants in each. FGs lasted approximately 45-60 minutes and included open-ended questions exploring PA intervention strategies. RESULTS: Analysis revealed 7 central themes: Expertise, home-based, individual symptoms, in-person, internet-based, social, and time. For interventions, persons with MS want: Experts that know MS, accommodations for individual symptoms, in- person training for accountability and PA guidance, internet-based training for convenience (e.g., transportation, disability, flexibility in meeting times, avoiding weather), social interactions through group classes/conferencing, and time of intervention to be consistent for guidance and flexible to meet fluctuating symptoms. CONCLUSION: Consistent with CBPR, future steps will include collaborating with persons with MS to develop a HHP. A combination of the current results, previous literature, and direction from stakeholders will guide the construction of a specially designed PA HPP for persons with MS.