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Co-design of the Spinal Cord Injury Health Maintenance Tool to Support Self-Management: A Mixed-Methods Approach.

James W Middleton1,2,3,4, Mohit Arora1,2, K Anne Sinnott Jerram1,2

  • 1John Walsh Centre for Rehabilitation Research, Northern Sydney Local Health District, St Leonards, NSW Australia.

Topics in Spinal Cord Injury Rehabilitation
|March 4, 2024
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Summary

A new SCI Health Maintenance Tool (SCI-HMT) was co-designed with spinal cord injury (SCI) patients and GPs. This free resource supports SCI self-management, shared decision-making, and early problem identification.

Keywords:
co-design processhealth promotionself-managementspinal cord injurytools

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Area of Science:

  • Rehabilitation Medicine
  • Health Informatics
  • Patient Empowerment

Background:

  • Limited user-friendly tools exist for individuals with spinal cord injury (SCI) to manage complex health needs in the community.
  • This article details the co-design process for the SCI Health Maintenance Tool (SCI-HMT).

Purpose of the Study:

  • To describe the co-design process of the SCI Health Maintenance Tool (SCI-HMT).
  • To develop a consumer-friendly tool to support SCI self-management and community health.
  • To integrate user needs and expert recommendations into a practical health maintenance resource.

Main Methods:

  • A mixed-methods approach was employed, including a rapid review, e-Delphi surveys (n=62), interviews (n=18 SCI patients, n=4 GPs), focus groups (n=3), design workshops (n=11, 8), and end-user testing (n=41).
  • Participatory research and data synthesis from multiple sources informed the tool's development.
  • Qualitative analysis identified key self-management concepts and user experience insights.

Main Results:

  • The SCI-HMT covers five priority health areas: bladder, bowel, skin, pain, and autonomic dysreflexia.
  • Best practices, red flags, referrals, and clinical pathways were established via e-Delphi.
  • Qualitative findings emphasized early symptom recognition, peer support, primary care knowledge sharing, GP roles, shared decision-making, and the importance of mental health.

Conclusions:

  • The co-design process fostered a shared understanding of needs between end-users (people with SCI, GPs) and developers.
  • The SCI-HMT is a freely accessible resource designed to enhance SCI self-management, shared decision-making, and early identification of health issues.
  • User feedback from workshops and testing significantly shaped the tool's user experience, functionality, and content.