JMIR Publications

ABSTRACT

Background:

Digital technologies have afforded people living with multiple sclerosis (plwMS) access to telehealth consultations, diagnostic tools and monitoring. While health care professionals (HCP) remain the most trusted source of information, the internet has emerged as a valuable resource for providing MS-related information, particularly during the COVID-19 pandemic. Importantly, plwMS are increasingly seeking out educational content for a range of topics related to self-management of MS, however, online information seeking remains largely under-evaluated. To address this gap and ensure online health-related information is both accessible and engaging, this study uses qualitative methods to analyse reflections from participants of web-based educational programs for pwlMS.

Objective:

The objective of this study is to explore the motivations, behaviours and expectations for online health information seeking for pwlMS.

Methods:

Semi-structured interviews of 38 plwMS were conducted 1-month after completing a novel MS online course (MSOC) providing information on modifiable lifestyle-related risk factors for plwMS (22 plwMS completed the intervention course and 16 completed the standard-care course). Inductive thematic analysis was used within a qualitative paradigm and two authors coded each interview separately and arrived at identified themes with consensus.

Results:

Two themes were identified: Motivations to learn and MS information in the online world. The diagnosis of MS was described as a pivotal moment for precipitating online information-seeking. PlwMS sought lifestyle-related information to facilitate self-management and increase control of their MS. Social media sites and MS websites were considered useful for providing both support and information, while discretion was needed to critically appraise information. Recognisable institutions were frequently accessed due to their trustworthiness.

Conclusions:

This study provides novel insights into the motivations of plwMS for seeking online health information. Their preferences for the content and format of online information accessed, as well as the experiences and reactions to this information, were also explored. Findings may guide educators, researchers and clinicians involved in MS care to optimise the engagement and processing of online health information by plwMS. Clinical Trial: Trial registration: This trial was registered prospectively with the Australian New Zealand Clinical Trials Registry, www.anzctr.org.au, identifier ACTRN12621001605886 Date of registration: 25 November 2021.