“I can’t control MS entirely, but at least I feel a sense of control”: A Qualitative Analysis of Individuals’ Perceptions of Control, Illness Coherence, and Self-Efficacy Following a Web-Based Lifestyle Program for Multiple Sclerosis (Preprint)

Abstract

Evidence suggests that illness perceptions, held by persons living with multiple sclerosis (plwMS), impact affective distress and physical health outcomes. In a randomized controlled trial (RCT), we developed two Multiple Sclerosis Online Courses (MSOCs) – the standard care course (SCC) and the intervention course (IC), adapted from an evidence-based lifestyle program. Modifying lifestyle risk factors presents an opportunity to positively influence individuals' perceptions of MS and improve health outcomes.

We undertook thematic analysis on qualitative interviews from participants who completed the MSOC across both RCT study arms. We aimed to identify motivations, experiences, and health outcomes, including changes in illness perceptions.

Participants were invited for a semi-structured interview.

Mental-health themes dominated the IC arm, so only IC data informed theme development which included qualitative reports from 22 plwMS. Three themes were identified: 1) “Self-efficacy for disease management”; 2) “Personal control”; and 3) “Illness coherence”.

Lifestyle-modification may improve personal control over MS, illness coherence, and self-efficacy for disease management.

This trial was registered prospectively with the Australian New Zealand Clinical Trials Registry, www.anzctr.org.au, identifier ACTRN12621001605886

RR2-https://doi.org/10.1186/s12883-023-03298-0