Development of a pain education resource for people with spinal cord injury

Frontiers in Public Health, 2023 · DOI: 10.3389/fpubh.2023.1197944 · Published: July 24, 2023

Spinal Cord Injury Healthcare Pain Management

Simple Explanation

Many individuals with spinal cord injuries (SCI) experience chronic pain, often neuropathic. Existing treatments are frequently insufficient due to the multifaceted nature of SCI-related neuropathic pain, which depends on several factors. A comprehensive approach involving medication, physical therapy, cognitive methods, and education on pain management is likely the most effective way to address pain in this group. This study introduces an educational tool named SeePain, developed using pain research and feedback from SCI patients, their loved ones, and healthcare experts. Stakeholders assessed SeePain for its content, clarity, and presentation via interviews, and it was then updated according to their suggestions. The finalized SeePain is a detailed manual for SCI patients and their families, designed to improve health understanding and enhance dialogue between patients and healthcare professionals. Future studies will evaluate SeePain in a larger group of SCI patients.

Study Duration

Not specified

Participants

15 SCI patients, 12 significant others, 10 healthcare providers

Evidence Level

Not specified

Key Findings

1
The SeePain resource was generally well-received by people living with SCI and their significant others, who expressed its value under a broad theme of useful and relevant information.
2
Stakeholders suggested modifications to the SeePain, including adding more relevant resources, more information about self-management and pain aggravation, and perspectives and support for significant others.
3
Participants suggested clarifications across figures, tables, and other text to make it clear what to expect from the SeePain.

Research Summary

The study developed and refined the SeePain, an educational resource for individuals with spinal cord injury (SCI) experiencing chronic pain, incorporating feedback from patients, their significant others, and healthcare providers. The SeePain aims to enhance health literacy and communication between SCI patients and their healthcare providers by providing relevant information on pain and pain management options. Qualitative feedback led to revisions improving the content, comprehensibility, and format of the SeePain, addressing areas such as self-management strategies, support for caregivers, and clarity of medical terminology.

Practical Implications

Improved Patient-Provider Communication

The SeePain resource can facilitate more effective communication between individuals with SCI and their healthcare providers, leading to better pain management strategies.

Enhanced Health Literacy

By increasing understanding of pain mechanisms and management options, the SeePain empowers patients and their caregivers to actively participate in their care.

Support for Caregivers

The resource provides valuable information and support for significant others and family members, helping them to better understand and assist individuals with SCI-related chronic pain.

Study Limitations

1
The study may not have captured all possible input due to methodological constraints, especially among people with SCI living with chronic pain who do not have a significant other or other support sources.
2
The SeePain will need to be updated continuously based on input from stakeholders, as evidence-based therapies and overall treatment approaches change over time.
3
The validity or effectiveness of the SeePain to improve health literacy or quality of life in this population has not been tested.

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