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.
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Fall 2021
Research Article|
August 01 2021
Qualitative Investigation of Health Information Resources for Caregivers and Individuals Living With Spinal Cord Injury
Kacey Ferguson, BA;
Kacey Ferguson, BA
1Center for the Study of Chronic Illness and Disability, George Mason University, Fairfax, Virginia
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Jessica Pope Mitro, MS;
Jessica Pope Mitro, MS
1Center for the Study of Chronic Illness and Disability, George Mason University, Fairfax, Virginia
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Alaanah Bhanji;
Alaanah Bhanji
1Center for the Study of Chronic Illness and Disability, George Mason University, Fairfax, Virginia
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Sejean Yang;
Sejean Yang
1Center for the Study of Chronic Illness and Disability, George Mason University, Fairfax, Virginia
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Lynn Gerber, MD;
Lynn Gerber, MD
1Center for the Study of Chronic Illness and Disability, George Mason University, Fairfax, Virginia
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Cindy Cai, PhD;
Cindy Cai, PhD
2American Institutes for Research, Washington, DC
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Steven Garfinkel, PhD;
Steven Garfinkel, PhD
2American Institutes for Research, Washington, DC
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Ali A. Weinstein, PhD
1Center for the Study of Chronic Illness and Disability, George Mason University, Fairfax, Virginia
Corresponding author: Ali A. Weinstein, PhD, Center for the Study of Chronic Illness and Disability, George Mason University, 4400 University Drive, MSN 1B7, Fairfax, VA 22030; email: [email protected]
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Top Spinal Cord Inj Rehabil (2021) 27 (4): 79–98.
Citation
Kacey Ferguson, Jessica Pope Mitro, Alaanah Bhanji, Sejean Yang, Lynn Gerber, Cindy Cai, Steven Garfinkel, Ali A. Weinstein; Qualitative Investigation of Health Information Resources for Caregivers and Individuals Living With Spinal Cord Injury. Top Spinal Cord Inj Rehabil 1 December 2021; 27 (4): 79–98. doi: https://doi.org/10.46292/sci20-00032
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