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

Top Spinal Cord Inj Rehabil, 2024 · DOI: 10.46292/sci23-00042 · Published: January 1, 2024

Spinal Cord Injury Patient Experience Healthcare

Simple Explanation

The SCI Health Maintenance Tool (SCI-HMT) was developed to assist individuals with spinal cord injury (SCI) and their healthcare providers in self-managing health and identifying issues early. The tool was created through a co-design process that involved people with SCI, general practitioners, and healthcare professionals. The SCI-HMT provides information on bladder, bowel, skin, pain and autonomic dysreflexia, mental health, red flag conditions, referrals and clinical pathways.

Study Duration

Not specified

Participants

Range of multidisciplinary health care professionals (n = 62), participants with SCI (n = 18) and general practitioners (n = 4), focus groups (n = 3 with 7, 4, and 4 participants with SCI, respectively), design workshops with stakeholders (n = 11, 8), and end-user testing (n = 41)

Evidence Level

Not specified

Key Findings

1
The SCI-HMT was developed based on participatory research with data synthesis from multiple sources, and five priority health maintenance issues were covered.
2
Qualitative analysis identified six broad key concepts for self-management, including early symptom recognition and knowledge sharing with primary care.
3
Design workshops and end-user testing provided key insights about user experience, functionality, and content for the SCI-HMT.

Research Summary

The co-design process, including people with SCI and general practitioners, facilitated a shared understanding of problems and identification of needs. The SCI-HMT is a freely accessible resource supporting SCI self-management, shared decision-making, and early problem identification. Data were synthesized from a variety of activities, including a rapid review, e-Delphi survey, interviews, focus groups, and creative workshops conducted with end users.

Practical Implications

Improved Self-Management

The SCI-HMT can assist individuals with SCI to better manage their health and prevent secondary complications.

Enhanced Shared Decision-Making

The tool supports collaboration between patients and healthcare providers in making informed decisions about care.

Early Problem Identification

The SCI-HMT can help in identifying potential health issues early, leading to timely intervention.

Study Limitations

1
Relatively small sample size of participants that may not allow for saturation or generalizability of the findings
2
Rapid reviews are, by their nature, more rapid than other types of research synthesis and can therefore lack the detail provided by traditional systematic reviews
3
The SCI-HMT is not a comprehensive tool covering all health-related issues for self-management

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