Living in an online world: Social media experiences of adolescents and young adults with cancer

Background: Despite widespread use, little is known about how adolescents and young adults (AYA) with cancer use social media (SM). This research characterized use and self-reported SM experiences among AYA with cancer. Procedure: AYA, aged 12-26 years, receiving cancer care completed a mixed-methods survey regarding SM experiences. Clinical information was obtained from the electronic medical record. Data were analyzed with descriptive statistics, t tests, and qualitative content analysis. Results: Thirty-nine AYA with average age 16 (SD = 3.2) years participated. Most were Caucasian (92%) males (54%). Participants had leukemia/lymphoma (56%), solid tumors (33%), and brain tumors (10%). Nearly all (97%) used SM, with YouTube, Snapchat, and Instagram being the most popular. AYA self-reported lower SM use than their smartphone data indicated (2.8 hours/day, SD = 1.2 vs 3.4 hours/day, SD = 1.3; P < 0.001). Participants used SM to obtain information about their cancer (45%), post about cancer (47%), and read about others' cancer experience (50%). One-third made a friend with cancer through SM (32%). Qualitative results indicated that AYA had positive cancer-related SM experiences, including feelings of support (54%), community (27%), distraction (8%), and inspiration (8%). Most denied negative experiences (78%); however, 17% reported cyberbullying related to cancer. Conclusions; AYA with cancer avidly use SM, noting it provides a sense of support and community. However, one-sixth reported cancer-related cyberbullying. AYA oncology providers have an opportunity to enhance positive and blunt negative SM interactions by addressing and guiding SM use in AYA patients.