Qualitative Investigation of Health Information Resources for Caregivers and Individuals Living With Spinal Cord Injury

Abstract

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.

Health care satisfaction and medical literacy habits among caregivers of individuals with Down syndrome

“…Researchers found that caregivers of children with DS felt that social media was accessible and beneficial for social support, but that caregivers would benefit from more services provided by local or national DS organizations (Hart & Neil, 2021). Previous studies on spinal cord injuries found that caregivers found the internet a valuable resource, attributing comfort with this modality and ease of access as an explanation for its greater use (Edwards et al, 2002; Ferguson et al, 2021). Previous research has also called out the need for information sources that are easily accessible but also provide users with reliable information (Ferguson et al, 2021; Matter et al, 2009).…”

“…Previous studies on spinal cord injuries found that caregivers found the internet a valuable resource, attributing comfort with this modality and ease of access as an explanation for its greater use (Edwards et al, 2002; Ferguson et al, 2021). Previous research has also called out the need for information sources that are easily accessible but also provide users with reliable information (Ferguson et al, 2021; Matter et al, 2009). Consistent with our finding that caregivers often relied upon primary care providers for medical information about DS, Cosgrove et al (2023) found that caregivers of children with DS wanted increased communication with their PCP and help with care coordination.…”

Simulation- vs. Didactic-Based Learning for Rehabilitation Nurses Caring for Patients With Autonomic Dysreflexia

“…Spinal cord injuries result in life-changing disabilities including sensory deficits and paralysis (Kirshblum, Snider, et al, 2021; Powell-Cope et al, 2015). The stress and burden of the SCI affect the patient, family, and support and healthcare systems (Ferguson et al, 2021; Reynolds et al, 2018). The treatment and rehabilitation period can be long and intense and requires an interdisciplinary approach (Bernet et al, 2019).…”