Objectives: To identify the information networks of caregivers and individuals with spinal cord injury (SCI) and how the health information is accessed and used. Methods: For this qualitative study, participants from the United States were recruited through hospital listservs, websites, social media, and word of mouth to participate in a phone interview. Fourteen individuals living with a traumatic SCI and 18 caregivers of individuals living with a traumatic SCI were interviewed using a semi-structured interview guide. The interviews were transcribed verbatim, coded using NVivo, and analyzed using qualitative thematic methods. Results: Participants reported that medical resources such as SCI specialists were considered the most reliable sources, but due to accessibility barriers the Internet was used the most. The Internet and social resources, such as online and in-person support groups, provided beneficial content information and emotional support, but they posed credibility concerns and left participants feeling unsure of reliability. Information gaps such as lack of education on basic care practices during the transition from acute to chronic care were identified by the participants. Conclusion: Because SCI is an overwhelming experience, it is difficult for patients to retain information in the initial acute care phase, leading to gaps in knowledge about long-term care. Patients are concerned about the reliability of online sources of information; therefore, there is a need for new methods of SCI information dissemination. Potentially, using primary care providers as conduits for information distribution might improve access to reliable long-term SCI information for caregivers and patients.
Keywords: caregivers; health information accessibility; spinal cord injury.
© 2021 American Spinal Injury Association.