Abstract

Background Adults with spinal cord injury/dysfunction (SCI/D) are commonly prescribed multiple medications to manage secondary complications. Significant challenges managing medications have been highlighted, with the need for more support with medication self-management. Objective The objective of this study is to co-develop a toolkit to assist with medication self-management for persons with SCI/D. Methods Adults with SCI/D, caregivers, and healthcare providers will participate in the three steps of concept mapping – brainstorming, sorting and rating, and mapping to identify key components of the toolkit. Participants will generate statements about what should be incorporated into a toolkit to help persons with SCI/D manage their medications. Participants will rate the final list of statements on importance and feasibility and sort the statements into thematic piles. A visual map will be developed by a subset of participants, representing the thematic piles. Findings To date, participants have generated over 500 statements. Ideas generated around the content of the toolkit focus on information about: pharmacological and non-pharmacological options for managing secondary complications, side effects, communicating with providers, and medication access. Ideas specific to the delivery of the toolkit focus on: ensuring an individualized approach, accessibility, and the use of visuals. Statements will be synthesized for sorting and rating and mapping. Conclusion Subsequent phases of this research will refine the toolkit through interviews and input from our working group. A mixed methods pilot evaluation will then be conducted to assess the feasibility, acceptability, and appropriateness of the toolkit, as well medication knowledge, self-efficacy, and quality of life.

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