Searching for a cure on Facebook: Patterns of social media use amongst caregivers of children with brain tumors

OBJECTIVE: Social media (SM) is ubiquitous in modern society. How SM provides information, advice, and community to families coping with childhood brain tumors is poorly understood. We sought to understand how caregivers of children with brain tumors use and are affected by SM. METHODS: A survey was administered to caregivers of children who were receiving or within the last 5 years received chemotherapy for pediatric brain tumors. Differences in variables across groups were evaluated using nonparametric tests and chi‐square tests. RESULTS: Thirty‐five of 36 caregivers acknowledged use of SM. Facebook was the most used platform (86%). Fifty‐eight percent and 47% used SM to read and share information about their child's cancer, respectively. Thirty‐four percent were comforted while 40% were bothered by cancer‐related information on SM. Eleven participants (31%) sought a second opinion based on information from SM. Caregivers of children with a poor prognosis were more likely to use a treatment from SM that was not initially recommended by their oncologist (p = 0.043). CONCLUSION: SM is commonly used by caregivers to obtain and share care‐related information. Many noted positive and negative effects of SM on emotional wellness. SM influenced treatment decisions, and this effect was stronger with poorer prognosis. Our results demonstrate the dichotomous impact of SM in medicine—it is a source of both solace and anxiety, a place to confirm treatment decisions and to create doubt in the treatment decisions of the oncologist. This illustrates the importance of discussing SM with caregivers of children with brain tumors.