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Searching for a Cure on Facebook: Patterns of Social Media Use Amongst Caregivers of Patients with Childhood Cancer
  • Tyler Miller,
  • Scott Maurer,
  • James Felker
Tyler Miller
University of Pittsburgh School of Medicine

Corresponding Author:[email protected]

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Scott Maurer
University of Pittsburgh
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James Felker
University of Pittsburgh
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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.