Self-management in Multiple Sclerosis (MS): Comparing Perceptions of Need Between People with MS, Carepartners, and MS Providers

Abstract

<h3>Research Objectives</h3> People with Multiple Sclerosis (MS) face challenges managing complex symptoms and navigating daily life. Self-management interventions (SMIs) may help, but research is lacking on the perceived need for SMIs and how perceptions may differ between people with MS (PwMS), carepartners, and MS providers. This exploratory study: 1) determines the need for an MS SMI; 2) identifies similarities and differences in perceived need between PwMS, carepartners, and providers; and 3) generates ideas to inform future self-management research. <h3>Design</h3> A qualitative, exploratory study using focus group (FG) methodology with PwMS (3 FGs), carepartners (1 FG), and medical and rehabilitation MS providers (2 FGs). FGs were audio-recorded, transcribed, then analyzed using the Collaborative Qualitative Analysis approach. Setting: A comprehensive MS care center in urban, southern USA. <h3>Participants</h3> Participants represent a convenience sample of 16 PwMS, 4 carepartners, 6 medical providers, 10 rehabilitation providers. <h3>Interventions</h3> Not applicable. <h3>Main Outcome Measures</h3> The FG moderator's guide included questions about: 1) priority MS symptoms; 2) barriers and facilitators to self-managing MS; 3) MS self-management strategies; 4) program and resource gaps. <h3>Results</h3> Results confirm that PwMS experience self-management challenges. PwMS and carepartner FGs revealed similar findings related to barriers and facilitators to self-managing MS and agreed that an SMI would be beneficial. While providers also agreed an MS SMI is needed, there were differences between groups in relation to barriers to self-management. Specifically, societal perceptions/stigma and the built environment were identified by PwMS as barriers, but not providers. PwMS also discussed the importance of alternative therapies and wellness activities, not discussed similarly by all provider types. <h3>Conclusions</h3> PwMS may benefit from SMIs. Obtaining input from PwMS, their carepartners and providers provides a holistic picture of the barriers to self-management that can inform content development. <h3>Author(s) Disclosures</h3> None.