Abstract
Background: Medications are one of the most common health-related interventions, with certain populations, such as individuals with spinal cord injury/dysfunction (SCI/D), commonly prescribed multiple medications. Consequently, adults with SCI/D often interact with multiple healthcare providers and engage in activities related to medication self-management. There are limited resources for this population that comprehensively address medication self-management. Therefore, the objective of this study was to co-design a toolkit to support medication self-management among adults with SCI/D.
Approach: We conducted a participatory mixed methods study. Using the Good Things Foundation Pathfinder Model as a guide for the co-design process, we engaged with adults with SCI/D, caregivers, and healthcare providers from across Canada. In Stage 1, we conducted a scoping review, concept mapping study, and working group sessions to understand and define the problem. In Stage 2, we conducted working group sessions and website development meetings to create a prototype of the toolkit. In Stage 3, we conducted a working group session to test the toolkit.
Results: MedManageSCI is available at www.medmanagesci.ca. We engaged with 44 participants in the concept mapping study, which included 21 adults with SCI/D, 11 caregivers, and 12 healthcare providers. The working group consisted of 19 individuals, including 9 adults with SCI/D, 1 caregiver, and 9 healthcare providers. In Stage 1, we identified the need for a comprehensive medication self-management resource, brainstormed content to include in the toolkit, and identified methods to deliver it. We also thematized and prioritized the content into eight categories (in order of importance): safety and lifestyle considerations, supports and services for accessing prescription medications and medication information, information-sharing and communication, general medication information, practical information and strategies related to medication-taking, healthcare provider interactions and involvement, information on non-prescription medication and medication supplies, and peer and community connections. Written and visual content were created by the research team and reviewed by experts. In Stage 2, feedback on the content mapped onto five categories: first impressions, message and purpose, visual elements, layout and flow, and graphics. MedManageSCI was selected as the name and an online version of the toolkit was created through an iterative process with the website development company. In Stage 3, participants provided recommendations to improve the functionality and navigation of the website.
Implications: MedManageSCI is a comprehensive medication self-management toolkit designed to empower adults with SCI/D to take an active role in their health management and promote overall health and well-being. Future work is needed to refine the content, assess the feasibility, acceptability, and appropriateness of the toolkit, and examine outcomes related to medication self-management. Through this co-design project, we have developed meaningful partnerships with adults with SCI/D, caregivers, and healthcare providers, which will support implementation and sustainability. MedManageSCI has the potential to further support integrated care by empowering individuals with SCI/D to be actively involved in their healthcare, facilitating communication amongst individuals with SCI/D and their care team, and providing resources to support self-management.