Exploring and prioritizing content to include in a medication self-management toolkit for persons with spinal cord injury/dysfunction: A concept mapping approach

Background Adults with spinal cord injury/dysfunction (SCI/D) face challenges with medications they take to manage their secondary conditions (e.g., pain, urinary tract infections, autonomic dysreflexia). With many healthcare providers typically involved in care, there are additional challenges with care fragmentation and self-management. Prior research emphasized the desire for more support with medication self-management among this population. Objective To explore what content should be included in a medication self-management resource (i.e., toolkit) for adults with SCI/D, as well as considerations for delivery from the perspectives of adults with SCI/D, caregivers, healthcare providers, and representatives from community organizations. Methods A concept mapping study was conducted. Participants took part in one or more of three activities: brainstorming; sorting and rating; and mapping. Participants generated ideas about the content to include in a medication self-management toolkit. Participants sorted the statements into conceptual piles and assigned a name to each. All statements were rated on a five-point Likert-type scale on importance and realistic to include in the toolkit. Participants decided on the final cluster map, rearranged statements, and assigned a name to each cluster to create visual representations of the data. Results Forty-four participants took part in this study. The final map contained eight clusters: 1) information-sharing and communication; 2) healthcare provider interactions and involvement; 3) peer and community connections; 4) supports and services for accessing prescription medications and medication information; 5) information on non-prescription medication and medication supplies; 6) safety and lifestyle considerations; 7) general medication information; and 8) practical information and strategies related to medication-taking. Safety and lifestyle considerations was rated as the most important and realistic to include in the toolkit. Conclusions Given the limited tools to help adults with SCI/D with managing their medications, there is great potential to better support this population across all areas of medication self-management.