Community Participation and Environmental Influences Among People with Multiple Sclerosis: Challenges and Solutions from a Community-Engaged Perspective

Abstract

Multiple sclerosis (MS) is the most common non-traumatic neurodegenerative disease among young adults. It is affecting nearly one million adults in the US and two million adults worldwide. Participation in meaningful and important activities as desired is highly valued by people with MS (PwMS) and is an important clinical outcome indicating quality of life and well-being. However, research has shown that PwMS experience significant declines in participation after their diagnosis, and they report fewer barriers to participating in activities at home but more barriers outside the home. Although numerous conceptual frameworks and empirical studies with other diagnostic groups highlight the role of environments in affecting participation, specific environmental impacts on community participation of PwMS have not been thoroughly explored. Using mixed-methods design and community-engaged research approaches, this dissertation broadly aims to understand community participation experiences among PwMS and how physical, societal, and attitudinal environments affect these experiences. In addition, the dissertation also focuses on advocacy for system-level improvements for enhancing community participation. The dissertation includes three phases: (1) a secondary analysis of quantitative data on person factors, environment, and community participation of people with MS, (2) focus group discussions with individuals with MS, and (3) a community engagement meeting with the broader MS community. In this dissertation, Chapter 1 presents a literature review on the conceptualization of participation and environmental influences, as well as empirical evidence relevant to multiple sclerosis, community participation measurement, and environmental impact, revealing research gaps and justifying the content and design of this dissertation. Chapters 2-4 are the three main articles that jointly achieve the overarching purpose of this dissertation with various specific aims. Chapter 5 is a conclusion chapter summarizing the study findings and implications. The first article (Chapter 2), “Is Doing More Always Better? A Mixed Methods Study Examining Relationship Between Subjective and Objective Dimensions of Community Participation among Individuals with Multiple Sclerosis,” utilized results from the first and second phases of this project to examine the relationship between subjective perspective of participation and objective community mobility performance both quantitatively and qualitatively. Results show that subjective and objective dimensions of community participation are positively related, but the association is generally weak, indicating that better perceptions of participation outcomes do not require high quantities of community engagement, such as frequency, distance, and duration of community outings. The study also found that personal factors (e.g., symptoms, preference, lifestyle, resilience) and environmental factors influence subjective and objective aspects of participation differently, which supported the distinction between the two dimensions. These findings emphasized the need for rehabilitation professionals to measure both subjective and objective dimensions of participation and identify contributors to the divergence in order to fully understand individual community participation experiences and to inform interventions. The second article (Chapter 3), “Environmental Influences on Community Participation among People with Multiple Sclerosis: A Mixed Methods Study,” has three specific aims: (1) To quantitatively assess the impact of environmental factors (EFs) on community participation among people with MS; (2) To quantitatively explore the effect modification of EFs on the relationship between symptom severity and community participation; (3) To qualitatively understand participant perspectives on environmental influences and identify needs for system-level changes to facilitate community participation. This study also used results from the first two phases of the dissertation project to address these three aims. Quantitative results showed that EFs (e.g., perceived social support, financial resources, neighborhood safety, and use of wheeled aid) were significantly associated with both subjective and objective participation measures, however, only perceived financial resources demonstrated a moderate association with subjective participation, and other associations were weak. EFs independently explained a portion of the variation in satisfaction with participation and radius of gyration, but not in other participation outcomes. Statistical analyses revealed that compared to environmental factors, person factors had stronger impacts on community participation among PwMS and did not support the role of EFs in moderating the association between symptoms and participation. Focus group participants, however, highlighted the enabling role of environmental supports that facilitated their community participation while living with functional limitations. They also described barriers in physical, societal, and attitudinal environments and advocated for system-level improvements in four areas: accessibility in the built environment, information access, MS specialty care, and public attitudes toward people with disabilities. The final article (Chapter 4), “Identifying Collective Efforts to Support Community Participation: A Community Engagement Meeting with the Multiple Sclerosis Community” described the practice of community-engaged approaches throughout the dissertation research process and reported findings from the final phase—an online MS community engagement meeting. The paper focuses on introducing the roles of community partners, their involvement in various research stages, and strategies researchers use to support their engagement. The findings from the final phase are action-oriented recommendations generated by community engagement meeting attendees for achieving system-level changes in four areas identified in the second article (i.e., improving accessibility in the built environment, information access, MS specialty care, and public attitudes towards people with disabilities). Together, these articles provide valuable insights for clinicians and researchers on measuring community participation among PwMS to enhance understanding of their experiences and the importance of understanding what environmental factors support or hinder community participation experience of PwMS and how. The studies also offer potential solutions for clinicians, organizations, and policymakers to support community participation of PwMS through increasing environmental support. Last but not least, the dissertation highlights the meaningfulness of community-engaged research centering the community’s voices and needs and provides an example for engaging the MS community and other disability communities in research process.