Identifying Collective Efforts to Support Community Participation Among People With Multiple Sclerosis

Abstract

People with multiple sclerosis (PwMS) face significant challenges in community participation. While existing efforts primarily target individual-level barriers, broader system-level support remains underexplored. The objective of this study was to identify actionable system-level changes that support PwMS in community participation. Using a community-engaged research approach, we conducted an online community engagement meeting (CEM) with diverse MS community members. A community advisory board was involved in planning, implementation, and dissemination. The CEM featured a research presentation and facilitated discussions to identify potential solutions. Participants completed a post-event feedback survey. Twenty-one participants proposed specific recommendations for bridging information gaps, improving MS care, enhancing environmental accessibility, and combating ableism. Eleven survey respondents reported meaningful participation in the CEM. The recommendations were shared directly with a policymaker. This study provides an example of engaging community members in an action-oriented dissemination activity, generating insights that can inform future support efforts by professionals and policymakers.

Plain Language Summary

A Community Engagement Meeting Discussing How to Better Support People with Multiple Sclerosis in Participating in Community Activities

What was the rationale for this project?

Being able to take part in community activities is an important part of life for people with multiple sclerosis (PwMS); however, many experience challenges in participating in activities as desired, especially activities occurring outside the home in the community. While previous research has explored individual factors affecting participation, there has been limited focus on advocacy for better support systems to help PwMS engage in the community. In addition, academic researchers are encouraged to collaborate with community members who have firsthand experience to ensure the research addresses the community’s needs. This kind of collaboration can facilitate translating research evidence into real-world practice.

What was the focus of this project?

The purpose of this project was to invite MS community members (e.g., PwMS, MS organization representatives, clinicians, researchers) to an online community engagement meeting to discuss what changes are needed at the systemic level to help PwMS more easily and fully take part in the community. After the meeting, participants were asked to complete a short survey to share their meeting participation experience. The article described the process of partnering with MS community members throughout the research process and highlighted outcomes of the community engagement meeting.

What were the outcomes?

Twenty-one members in various roles in the MS community attended the meeting. They shared ideas and suggestions for improving accessibility, providing better information, improving MS care, and changing public attitudes toward people with disabilities. In the feedback survey completed by 11 attendees, participants expressed that being part of this project was meaningful and emphasized the value of including PwMS in research. In addition, the research team shared findings with a policymaker. This project provided useful insights for health care professionals, researchers, MS community organizations, and policymakers on how to support community participation among PwMS.