Information about traumatic brain injury is hard to find and often hard to trust, according to new research

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A new study from Tammie Jones and Ali Weinstein studied how individuals with a traumatic brain injury and their caregivers find health information for the disease and how to improve it.

Traumatic brain injury (TBI) is one of the leading causes of death and disability in the United States in children and adults ages 1-44, with approximately 2.8 million new cases each year. Most TBIs result in long-term physical and cognitive disability that requires ongoing, life-long, rehabilitation and treatment often under the care of a family member. The needed rehabilitation and treatment can change as time goes by, leaving people with TBIs and their caregivers constantly looking for new and updated treatment information.

A new study from Tammie Jones, assistant professor (HAP), and Ali Weinstein, professor (GCH), found that increased accessibility to health information for individuals living with the chronic effects of TBI and their caregivers is needed. Individuals with TBI and their caregivers report that accurate health information can be hard to find and hard to trust.

Tammie Jones
Tammie Jones, assistant professor

"The results of this study support the need to improve the availability of health care providers who are well-versed in treating individuals with TBI and able to provide reliable and accessible information to individuals living with the chronic effects of TBI and their caregivers,” said Jones.

As defined by the study, a traumatic brain injury is when an external force from an event such as a fall, sports, assault, motor vehicle accident, or explosive blast injures the brain and causes loss of consciousness and/or loss of memory.

According to study participants, their most frequent sources of information about TBI included: searching the internet, consulting with health care professionals, reading research articles, and seeking information from other individuals with TBI or caregivers of individuals with TBI. Participants also shared their experiences related to evaluating the reliability and trustworthiness of information and the importance of individuals with TBI and caregivers participating in research.

Ali Weinstein
Ali Weinstein, professor

“Our study shows that individuals with TBI and their caregivers are having difficulty finding and evaluating the credibility of information they encounter in their search for information. More research is needed to explore the long-term health information needs of individuals living with chronic symptoms of TBI and their caregivers. This study helps to explain the experience of individuals with TBI and their caregivers who seek health information resources to address the long-term care needs of individuals with TBI,” said Weinstein, the Mason principal investigator for the study.

Experiences of caregivers and individuals living with traumatic brain injury in accessing health information: a qualitative investigation was published in Brain Injury November 2022.

This study was funded by the National Institute on Disability, Independent Living, and Rehabilitation Research, Administration for Community Living, U.S. Department of Health and Human Services (grant #90DP0082) to the American Institutes for Research (AIR). AIR contracted to Mason's College of Public Health to complete the research. Additional authors include Xinsheng Cindy Cai and Steven Garfinkel from AIR, and Alaanah Bhanji, a former research assistant in Mason’s Department of Global and Community Health, and Sarah Osman, a Mason BS in Global and Community Health alumna.