Using participatory action research to develop a new self-management program: Results from the design stage of...

Self-management programs have been used with success in several clinical populations, and there is a growing body of evidence to support their use among persons with multiple sclerosis (MS). This group aimed to develop a novel self-management program, Managing My MS My Way (M⁴W), which is based in social cognitive theory and contains evidence-based strategies that have been shown to be effective for persons with MS. Furthermore, persons with MS would serve as stakeholders throughout the development process to ensure that the program would be useful and encourage adoption. This paper outlines the initial development stages of M⁴W, including determining 1) stakeholders' interest in a self-management program, 2) the general focus of the program, 3) the delivery method of the program, 4) the content of the program, and 5) potential barriers and adaptations.

A three-stage study consisting of an anonymous survey (n = 187) to determine interest, topic, and delivery format; semi-structured interviews (n = 6) to follow-up on the survey results; and semi-structured interviews (n = 10) to refine the content and identify barriers.

Over 80% of survey participants were somewhat or very interested in a self-management program. Fatigue was the topic with the greatest amount of interest (64.7%). An internet-based program (e.g., mobile health or mHealth) was the most preferred delivery method (37.4%), with the first group of stakeholders proposing a module-based system with an initial in-person orientation session. The second group of stakeholders were overall enthusiastic about the program, giving moderate to high confidence scores for each of the proposed interventional strategies. Suggestions included skipping sections that were not applicable to them, setting reminders, and seeing their progress (e.g., visualizing their fatigue scores as they move through the program). In addition, stakeholders recommended larger font sizes and speech-to-text entry.

Input from the stakeholders has been incorporated into the prototype of M⁴W. The next steps will be to test this prototype with another group of stakeholders to assess its initial usability and identify issues before developing the functional prototype.