Traumatic brain injury (TBI) can cause long-term physical and cognitive disabilities. Those who suffer from chronic TBI symptoms require ongoing care, and their caregivers often have to coordinate or provide that care. Health information is crucial for managing the needs and concerns of patients and caregivers, but studies have found that caregivers of people with TBI often struggle to find and access that information, particularly during the transition from formal healthcare to the community.
This study aimed to understand the experiences of people with TBI and caregivers in finding and using TBI-related health information. The researchers recruited participants through various channels such as hospital listservs, TBI-relevant websites, social media, and word of mouth. Participants were people who sustained a TBI at least 3 years prior or their caregivers. The researchers conducted semi-structured interviews over the phone with 11 individuals with TBI and 13 caregivers. They found that:
- Participants commonly used the internet, consulted with healthcare professionals, read research articles, and sought out information from other individuals with TBI or caregivers to find TBI-related health information.
- The internet was the most cited resource used by individuals with TBI and caregivers, due to its accessibility and familiarity. However, participants also discussed the difficulty in discerning reliable information from the overwhelming amount of information available online.
- Healthcare professionals were often cited as a reliable resource for information, but participants talked about challenges in accessing these providers.
- Both people with TBI and caregivers expressed a desire to be involved in research by helping shape how studies are conducted and how results are disseminated.
This study highlighted the need to improve the reliability and accessibility of health information for individuals living with the chronic effects of TBI and their caregivers. It also highlighted the need for alternative professionals, such as community health workers, who could help connect people with TBI and caregivers to healthcare and social resources. The inclusion of individuals with TBI and their caregivers in research can increase the relevance and applicability of research produced. Future studies should explore differences in health information needs for people in low-income households, individuals without college education, and for people of color.
Jones TM, Bhanji A, Osman S, Cai XC, Garfinkel S, Weinstein AA. Experiences of Caregivers and Individuals Living with Traumatic Brain Injury in Accessing Health Information: A Qualitative Investigation. Brain Injury. (April 2023).