Identifying and Understanding the Health Information Experiences and Preferences of Individuals With TBI, SCI, and Burn Injuries

Journal of Patient Experience, 2016 · DOI: 10.1177/2374373516667007 · Published: July 1, 2016

Simple Explanation

This study aimed to identify preferred sources of health information and services for persons with TBI, SCI, and burn injuries and discover how accessibility could be improved. Thirty-three persons with injury participated in semistructured interviews. Responses to interview questions were coded using NVivo. Participants’ difficulties accessing health information varied by injury type and individually.

Study Duration

Not specified

Participants

33 persons with injury: 13 with TBI, 8 with SCI, and 12 with burn

Evidence Level

Qualitative research

Key Findings

1
The majority of respondents found information via the Internet and advocated its use when asked to describe their ideal health information system.
2
Nearly all participants supported the development of a comprehensive care website.
3
When searching for health information, participants sought doctor and support group networks, long-term health outcomes, and treatments specific to their injury.

Research Summary

This study provides in-depth understanding into the issues affecting the pursuit of health information for persons with TBI, SCI, and burn injuries. Our findings emphasize the utility of the Internet. Still, many participants also referenced health information experiences with a doctor. Thus, combining the strengths of each type of experience should be a priority when developing a comprehensive website. An ideal health information system should also incorporate information referrals from health professionals.

Practical Implications

Improve Online Health Platforms

Internet-based health-care platforms should add or highlight access points to connect patients to medical professionals and support networks.

Aggregated Information

Platforms should aggregate specialized, injury-specific research and treatment information.

Comprehensive Care Website

Develop and promote comprehensive care websites that encompass information on injury, treatment, recovery, and support networks.

Study Limitations

1
The total US population that has experienced TBI, SCI, or burn is too large for this sample size and data to statistically represent them, making generalizability a limitation.
2
Study participants were recruited using the Internet (as well as other sources), which may have biased our sample in terms of preferences for Internet resources.
3
Different numbers of persons with injury were interviewed for each injury group. For this reason, each injury type was not equally represented in the statements dealing with overall responses.

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