This study examines CTE-related knowledge and information-seeking behaviors of caregivers of persons who are at high risk of CTE. Online survey responses were collected from 64 females, ages 18-74, who were married to former college, semiprofessional, or professional football players and were fluent in English. Ranging from 0 to 18, a score was calculated to represent level of CTE knowledge. Participants were classified into groups based on their spouse's reported symptoms and diagnosis. Approximately 87% of participants reported that their spouses have been diagnosed with a football-related concussion and were significantly more likely to seek out information from a healthcare provider, a scientific journal or article, and post/comment on social media compared to spouses of symptomatic/undiagnosed and non-symptomatic groups. Participants reported 77% of available information as probably true, with social media thought to be highly credible. Highest levels of dissatisfaction were reported for league-sponsored websites and physicians/healthcare providers. Although the majority of participants sought CTE related information on regular or social media, and the internet, information sources differed amongst the groups. These findings may help healthcare providers and organizations develop more effective health-related educational programs that will help the wives make informed decisions regarding care for their spouses with respect to CTE.
Keywords: Caregivers; chronic traumatic encephalopathy (CTE); dementia; football; repetitive head impacts (RHI); sports-related concussion; traumatic brain injury (TBI).