Searching for a Cure on Facebook: Patterns of Social Media Use Amongst
Caregivers of Patients with Childhood Cancer
Abstract
Background Social media (SM) is ubiquitous in modern society. How SM
provides information, advice, and community to families coping with
childhood cancer is poorly understood. We sought to understand how
caregivers of children with cancer use and are affected by SM. Procedure
A survey was administered to caregivers of children who were receiving
or within the last 5 years received chemotherapy. Differences in
variables across groups were evaluated using non-parametric tests and
chi-square tests. Results 48/50 caregivers acknowledged use of SM.
Facebook was the most used platform (91%). 58% and 56% used SM to
read and share information about their child’s cancer, respectively.
42% were comforted while 38% were bothered by cancer-related
information on SM. 14 participants (29%) sought a second opinion based
on information from SM. Caregivers of children with a poor prognosis
were more likely to discuss information from SM with their oncologist
(mean difference=1.19, p=0.003) and use treatment from SM that was not
initially recommended by their oncologist (OR=1.82, 95% CI 1.37-2.41).
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 cancer.