A collaborative approach to designing an online nutrition education program for people with multiple sclerosis

Abstract

Purpose

People with multiple sclerosis (pwMS) want disease-specific dietary advice to reduce the confusion around diet. This study used co-design principles to develop an online nutrition education program for pwMS.

Methods

Mixed-methods (multiphase sequential design). Phase 1: online survey (n = 114 pwMS) to explore preferred content and characteristics of a nutrition program and develop a draft program. Phase 2: feedback on the draft program from stakeholders (two meetings; n = 10 pwMS and multiple sclerosis (MS) health professionals) and pwMS (two workshops; n = 6) to produce a full program prototype. Phase 3: cognitive interviews (n = 8 pwMS plus 1 spouse) to explore acceptability and ease of comprehension of one module of the program, analysed using deductive content analysis.

Results

Preferred topics were included in the program, which were further developed with consumer feedback. Cognitive interviews produced four themes: (1) positive and targeted messaging to motivate behaviour change; (2) “not enough evidence” is not good enough; (3) expert advice builds in credibility; and (4) engaging and appropriate online design elements are crucial.

Conclusions

Positive language appears to improve motivation to make healthy dietary changes and engagement with evidence-based nutrition resources. To ensure acceptability, health professionals can use co-design to engage consumers when developing resources for pwMS.

IMPLICATIONS FOR REHABILITATION

• Co-designed nutrition education programs can help people achieve high-quality diets in line with recommendations, but very few programs exist for people with multiple sclerosis (MS), and none were co-designed

• The participatory research in this study was instrumental in ensuring that important information regarding program acceptability was identified

• Co-design can ensure that the language is appropriate for the target audience, and positive language appeared to improve motivation in people with MS to engage with the online nutrition education program

• Where practical and feasible, health professionals should collaborate with MS consumers when developing resources, and use positive, empowering language

Keywords:

• Co-design
• nutrition education
• mixed-methods research
• cognitive interviews
• participatory research

Acknowledgements

This study will partially fulfil the requirements for the degree, Doctor of Philosophy in the Curtin School of Population Health, Curtin University, for RDR. Thank you to MSWA for assistance in recruiting. We thank the participants who took part in this research.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by MS Australia (Incubator Grant #21-1-072). RDR is supported by an Australian Government Research Training Program Scholarship, an MSWA PhD Top-Up Scholarship, and a Graduate Women (WA) Inc. Open Scholarship. LJB is supported by MSWA, an MS Australia Postdoctoral Fellowship, and a Curtin University Research Fellowship. AD is supported by MSWA. Funders had no role in the design, analysis, or writing of this article.