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

Lauren Cadel; Rasha El-Kotob; Sander L Hitzig; Lisa M McCarthy; Shoshana Hahn-Goldberg; Tanya L Packer; Chester H Ho; Tejal Patel; Stephanie R Cimino; Aisha K Lofters; Sara J T Guilcher

doi:10.1371/journal.pone.0310323

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

PLoS One. 2024 Oct 31;19(10):e0310323. doi: 10.1371/journal.pone.0310323. eCollection 2024.

Authors

Lauren Cadel^{1

2}, Rasha El-Kotob¹, Sander L Hitzig^{3

4

5}, Lisa M McCarthy^{1

2

6

7

8}, Shoshana Hahn-Goldberg^{1

9}, Tanya L Packer^{10

11}, Chester H Ho¹², Tejal Patel^{6

13}, Stephanie R Cimino^{1

3}, Aisha K Lofters^{8

14}, Sara J T Guilcher^{1

2

3

4

14}

Affiliations

¹ Leslie Dan Faculty of Pharmacy, University of Toronto, Toronto, ON, Canada.
² Institute for Better Health, Trillium Health Partners, Mississauga, ON, Canada.
³ Temerty Faculty of Medicine, Rehabilitation Sciences Institute, University of Toronto, Toronto, ON, Canada.
⁴ Sunnybrook Research Institute, St. John's Rehab Research Program, Sunnybrook Health Sciences Centre, Toronto, ON, Canada.
⁵ Temerty Faculty of Medicine, Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON, Canada.
⁶ Schlegel-University of Waterloo Research Institute of Aging, Waterloo, ON, Canada.
⁷ Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada.
⁸ Women's College Research Institute, Toronto, ON, Canada.
⁹ OpenLab, University Health Network, Toronto, ON, Canada.
¹⁰ Schools of Occupational Therapy and Health Administration, Dalhousie University, Halifax, NS, Canada.
¹¹ Department of Nursing, Umeå University, Umeå, Sweden.
¹² Department of Clinical Neurosciences, Division of Physical Medicine & Rehabilitation, Foothills Medical Centre, Calgary, AB, Canada.
¹³ School of Pharmacy, University of Waterloo, Kitchener, ON, Canada.
¹⁴ Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.

Abstract

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.

Copyright: © 2024 Cadel et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

MeSH terms

Adult
Caregivers
Female
Health Personnel
Humans
Male
Middle Aged
Self-Management* / methods
Spinal Cord Injuries* / therapy

Grants and funding

The research was supported by the Craig H. Neilsen Foundation Psychosocial Research Studies and Demonstration Projects Grant (#855615, received by SJTG). SJTG holds a salary award as Pain Scientist from the University of Toronto Centre for the Study of Pain. LC is supported by the Canadian Institutes of Health Research Canada Graduate Scholarship (#493705). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.