Digesting science: Developing educational activities about multiple sclerosis, prevention and treatment to increase the confidence of affected families.

Abstract

BACKGROUND: The majority of information sources for children of people with multiple sclerosis (MS) are paper, or text, based and require high levels of literacy. OBJECTIVE: To develop educational activities to inform children who have a parent with MS about a number of aspects around MS and to improve the confidence levels of both parents and children to discuss MS. METHODS: A structured interactive event, Digesting Science (DS), was developed. This covers the effect MS can have on: vision, bladder function, walking, the mechanisms of action of disease-modifying treatments, the potential importance of vitamin D supplementation, and risk factors for developing MS. Qualitative and semi-quantitative feedback and other data were collected from event questionnaires and a follow-up online survey. RESULTS: In total, 86 DS events have been delivered internationally, reaching approximately 345 families affected by MS. Confidence ratings around discussing MS improved in 57/77 families (74%; 95% CI: 62.6-83.1) following a DS event. 39/87 (45%) families who attended DS events reported taking vitamin D prior to the event, and 48/87 (55%) were not supplementing. Of those not taking vitamin D supplements, 71% now take vitamin D supplements, 6% have not changed their behaviour, and the remainder were unsure. CONCLUSION: Educational activities that explain complex neurological diseases to children can be developed and successfully implemented at an international level. These activities give families the confidence to discuss the impact of MS on their lives and also have the potential to change health-related behaviour. IMPLICATIONS FOR PRACTICE: Creative approaches to health behaviour communication can inform children of parents with MS and may affect their behaviour with the aim of potentially reducing their risk of developing MS in the future. Now more than ever, we need educational resources that can facilitate conversations within families that can respond to health information needs in a timely manner.