Experiences With Navigating and Managing Information in the Community Following Spinal Cord Injury

Top Spinal Cord Inj Rehabil, 2018 · DOI: 10.1310/sci17-00050 · Published: May 3, 2018

Spinal Cord Injury Patient Experience Public Health

Simple Explanation

People with spinal cord injuries (SCI) often develop secondary health conditions that can be prevented or managed with proper information and education. While patients receive information during their initial hospital stay and rehabilitation, their informational needs continue to evolve as new management techniques emerge or their personal circumstances change. This study explored the experiences of people living with SCI as they navigate and manage health information in their communities. The study found that people with SCI use multiple information sources and learn to assess the quality and relevance of the information they find. The research highlights the need for ongoing support for individuals with SCI to access and understand health information in the community. Rehabilitation is an ideal time to educate patients about finding and evaluating information, and improved access to community health providers with SCI knowledge is crucial.

Study Duration

September and October 2015

Participants

22 participants with SCI

Evidence Level

Qualitative study

Key Findings

1
People living with SCI use multiple sources of information, including health professionals, peer support networks, and the Internet, to prevent and manage secondary conditions.
2
Over time, individuals with SCI learn to evaluate the content, relevance, timing, and sources of information they receive.
3
Participants often become experts in their own condition, guiding their care and acting as information sources for others due to a perceived lack of knowledge among general practitioners.

Research Summary

This study investigated the experiences of people with spinal cord injury (SCI) in navigating and managing health information within their communities. It highlighted that while individuals receive substantial information during rehabilitation, challenges arise in transitioning back to the community and accessing knowledgeable health professionals. The research revealed that people with SCI rely on various information sources, including health professionals, peer support networks, and the Internet. They develop skills to appraise the quality and relevance of information over time, often becoming experts in their condition. The study concludes that greater support is needed to help individuals with SCI navigate information sources effectively. This includes enhancing health literacy education during rehabilitation and improving access to community health professionals with specialized SCI knowledge.

Practical Implications

Enhance Rehabilitation Education

Rehabilitation programs should include education on how to find, evaluate, and apply health information.

Improve Community Health Access

Increase access to community-based health professionals with SCI-specific knowledge.

Facilitate Peer Support Networks

Support and promote peer mentoring and information sharing among individuals with SCI.

Study Limitations

1
Participants may have been more likely to participate if they had an interest in sharing their experiences.
2
Only English-speaking participants were interviewed.
3
Recruitment relied on electronic distribution of information through AQA Victoria, potentially excluding those without internet access or connections to the organization.

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