A qualitative study to refine and finalize the MedManageSCI prototype: A web-based toolkit to support medication self-management in adults with spinal cord injury/dysfunction

Adults with spinal cord injury/ dysfunction (SCI/D) commonly take multiple medications for a variety of secondary conditions, and have described challenges with medication self-management. To help support medication self-management, a web-based toolkit, MedManageSCI, was co-designed by our team of researchers and adults with SCI/D, caregivers, and healthcare providers (www.medmanagesci.ca). Together, we co-developed the content areas to include in MedManageSCI, along with the design and brand considerations, to create an initial prototype of the toolkit. To finalize the prototype prior to implementation, the primary objective of this qualitative study was to further refine MedManageSCI by examining the clarity, comprehensiveness, relevance, and delivery of the toolkit modules. Cognitive interviews were conducted virtually between July 2024 and September 2024 with adults with SCI/D (N = 16). A concurrent verbal probing approach using scripted and spontaneous probes was followed. Data were coded using a pre-established coding matrix that aligned with the scripted probes. Participants provided 193 specific modifications to improve the clarity, comprehensiveness, relevance, or delivery of the MedManageSCI toolkit, which were categorized as: Comprehension, Design, and Web-based Delivery. The Comprehension category contained three subcategories: Written Refinements, Ensuring Accessibility, and Revamping Resources. The Design category contained three subcategories: Formatting Content, Streamlining Function, and Enhancing Visuals. Participants perceived the website as an ideal way to deliver the toolkit, noting several benefits of a web-based delivery in comparison to a paper-based toolkit. Overall, participants found the modules to be comprehensive and highly relevant. Further, we discuss the application of cognitive interviews for further refining the MedManageSCI prototype, recommendations to improve the comprehensibility, and the advantages of a web-based toolkit for the SCI/D population. Involving individuals with SCI/D in the development and refinement of self-management materials will help ensure that the content and resources are tailored and appropriate; thereby elevating its likelihood of uptake and dissemination during implementation.

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Publication Details

Journal
PLOS Digital Health
Published
2025-10-22
DOI
https://doi.org/10.1371/journal.pdig.0001054
Primary Topic
Diabetes Management and Education
Type
article
Field-Weighted Citation Impact
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article

A qualitative study to refine and finalize the MedManageSCI prototype: A web-based toolkit to support medication self-management in adults with spinal cord injury/dysfunction

Lisa McCarthy, Tejal Patel, Aïsha Lofters, Rasha El-Kotob et al.
PLOS Digital Health
Diabetes Management and Education
article

A qualitative study to refine and finalize the MedManageSCI prototype: A web-based toolkit to support medication self-management in adults with spinal cord injury/dysfunction

Lisa McCarthy, Tejal Patel, Aïsha Lofters, Rasha El-Kotob, Sander L. Hitzig, Stephanie R. Cimino, Tanya Leigh Packer, Chester Ho, Sara J. T. Guilcher, Shoshana Hahn‐Goldberg, Lauren Cadel
article en

Abstract

Adults with spinal cord injury/ dysfunction (SCI/D) commonly take multiple medications for a variety of secondary conditions, and have described challenges with medication self-management. To help support medication self-management, a web-based toolkit, MedManageSCI, was co-designed by our team of researchers and adults with SCI/D, caregivers, and healthcare providers (www.medmanagesci.ca). Together, we co-developed the content areas to include in MedManageSCI, along with the design and brand considerations, to create an initial prototype of the toolkit. To finalize the prototype prior to implementation, the primary objective of this qualitative study was to further refine MedManageSCI by examining the clarity, comprehensiveness, relevance, and delivery of the toolkit modules. Cognitive interviews were conducted virtually between July 2024 and September 2024 with adults with SCI/D (N = 16). A concurrent verbal probing approach using scripted and spontaneous probes was followed. Data were coded using a pre-established coding matrix that aligned with the scripted probes. Participants provided 193 specific modifications to improve the clarity, comprehensiveness, relevance, or delivery of the MedManageSCI toolkit, which were categorized as: Comprehension, Design, and Web-based Delivery. The Comprehension category contained three subcategories: Written Refinements, Ensuring Accessibility, and Revamping Resources. The Design category contained three subcategories: Formatting Content, Streamlining Function, and Enhancing Visuals. Participants perceived the website as an ideal way to deliver the toolkit, noting several benefits of a web-based delivery in comparison to a paper-based toolkit. Overall, participants found the modules to be comprehensive and highly relevant. Further, we discuss the application of cognitive interviews for further refining the MedManageSCI prototype, recommendations to improve the comprehensibility, and the advantages of a web-based toolkit for the SCI/D population. Involving individuals with SCI/D in the development and refinement of self-management materials will help ensure that the content and resources are tailored and appropriate; thereby elevating its likelihood of uptake and dissemination during implementation.

PLOS Digital HealthVol. 4(10)
Dalhousie University (CA), Lawson Health Research Institute (CA), Sunnybrook Health Science Centre (CA), University Health Network (CA), University of Waterloo (CA), University of Toronto (CA), Toronto Rehabilitation Institute (CA), Trillium Health Centre (CA), Women's College Hospital (CA), Health Sciences Centre (CA), Foothills Medical Centre (CA), Public Health Ontario (CA), Research Institute for Aging (CA), Institute of Aging (CA), Sunnybrook Research Institute, Umeå University (SE)
Openalex Percentile: Top 60%
Diabetes Management and Education
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