DigiTRAC: Qualitative insights from knowledge users to inform the development of a Digital Toolkit for enhancing resilience among multiple sclerosis caregivers

Abstract

BackgroundResilience-promoting resources are critically needed to support positive caregiving experiences for multiple sclerosis (MS) caregivers. A digital toolkit offers a flexible way to access and use evidence-based resources that align with MS caregivers’ interests and needs over time. ObjectiveWe explored the perspectives of key knowledge users regarding content areas, features, and other considerations to inform an MS caregiver resilience digital toolkit. MethodsTwenty-two individuals completed a demographic survey as part of this study: 11 MS family caregivers, 7 representatives of organizations providing support services for people with MS and/or caregivers, and 4 clinicians. We conducted nine semi-structured individual interviews and two focus groups. Data were analyzed using content analysis. ResultsParticipants recommended that a digital toolkit should include content focused on promoting MS caregivers’ understanding of the disease, its trajectory and available management options, and enhancing caregiving skills and caregivers’ ability to initiate and maintain behaviours to promote their own well-being. Features that allow for tracking and documenting care recipients’ and caregivers’ experiences, customization of engagement, and connectivity with other sources of support were also recommended. Participants suggested a digital toolkit should be delivered through an app with web browser capabilities accessible on smartphones, tablets, or laptops. They also acknowledged the need to consider how users’ previous technology experiences and issues related to accessibility, usability, privacy and security could influence toolkit usage. ConclusionThese findings will guide future toolkit development and evaluation. More broadly, this study joins the chorus of voices calling for critical attention to the well-being of MS family caregivers.