Background: Effective communication is essential for high-quality multiple sclerosis (MS)-related healthcare, but significant knowledge and practice gaps remain in this area. The aim of this study was to explore facilitators and barriers of communication about MS reported by members of the MS community.
Methods: We conducted an exploratory mixed method study analysing self-reported facilitators and barriers to communication among MS community members participating in a free international online course about MS (called Understanding MS) who commented on an optional discussion board. We quantitatively compared commenters with course participants who did not comment and, among commenters, compared health information consumers (people with MS, caregivers) and suppliers (healthcare providers, service providers, researchers) using chi square and t-tests. We evaluated free text discussion board responses for emergent themes, comparing and contrasting consumer and supplier responses.
Results: We found that the sociodemographic characteristics of commenters (n = 262) were similar to course participants overall including age, sex and MS community role. However, among commenters, consumers (n = 152) were about 9 years older than suppliers (n = 57) on average (mean age consumers 52.9 years; suppliers 44.0 years p<0.001), and were less likely to have a university degree (p = 0.004) or live in Australia (the course host country representing almost 60% of the cohort; p<0.001). Nonetheless, consumers and suppliers listed similar facilitators for communication about MS: honesty, kindness/empathy/compassion, openness, and effective listening. Consumers further prioritized clarity and patience. Consumers were also more likely to list barriers to communication, commonly listing the following barriers: encountering a lack of knowledge about MS, the invisible symptoms of MS, uncertainty about the appropriate amount of communication, and concern about being perceived as complaining and/or burdening others. Finally, consumers also discussed communication as a means to educate others about MS.
Conclusions: Effective communication remains a challenge in the MS community, particularly between health information suppliers and health information consumers. The results of this exploratory study highlight areas that should be considered when developing communication strategies for MS community members. A larger confirmatory study of MS health information consumers and suppliers that uses focus groups and individual interviews could be conducted to further explore these emerging themes.
Keywords: Communication; MOOC; Massive open online course; Multiple sclerosis.
Copyright © 2021. Published by Elsevier B.V.