New Studies Characterize Social Media Use in Adolescents and Young Adults With Cancer and Their Caregivers

April 2, 2022

A pair of new studies from a research team led by faculty from the Division of Pediatric Hematology/Oncology at UPMC Children’s Hospital of Pittsburgh examined how adolescents and young adults (AYA) with cancer use and interact with social media platforms, and how caregivers of young cancer patients with brain tumors use social media to educate themselves about the disease and treatment approaches. 

The studies were led by neuro-oncology specialist, James T. Felker, MD, assistant professor of Pediatrics, and Scott H. Maurer, MD, associate professor of Pediatrics and chief of the Division of Palliative Medicine and Supportive Care and medical director of the Supportive Care Program at UPMC Children’s.

The first study was published in February 2022 in the journal Pediatric Blood & Cancer under the title “Living in an Online World: Social Media Experiences of Adolescent and Young Adults With Cancer.”1 Pediatric resident Hannah Reuman, MD, was the study’s lead author. 

The second research paper, “Searching for a Cure on Facebook: Patterns of Social Media Use Amongst Caregivers of Children with Brain Tumors,”2 was published in March 2022 in the journal Cancer Medicine. University of Pittsburgh School of Medicine student, Tyler T. Miller, was the first author.

Highlights from the Patient Study in Pediatric Blood & Cancer

While it may be intuitively understood or recognized that young adults and adolescents with cancer use social media platforms during their daily lives given the pervasiveness of the technologies across the globe, research and evidence-based findings on patterns and experiences of this cohort of patients with social media is lacking

Social media use can have both positive and negative effects on its users, and these may be exacerbated within vulnerable populations such as young individuals with cancer navigating the difficult treatments and general upending of their lives that comes with a diagnosis of cancer.

To understand more completely how this group of patients uses and experiences social media, the team conducted a survey of AYA with cancer to characterize their daily use, perceptions, and experiences with the technology.

The survey was conducted with 39 AYA with cancer with an average age of 16 years and varying cancer diagnoses. Prevalence of social media use was nearly universal at 97%, with YouTube, Instagram, and Snapchat being the favored platforms, and AYA significantly underestimated their time spent on social media when self-reporting data was compared to actual smartphone usage data. Of note, only 2 patients surveyed reported any type of parental supervision of their social media activities.

Additionally, AYA with cancer believed they benefited from social media because it afforded them a sense of community and support. One-third of respondents indicated they made friends with other cancer patients. 

While most respondents did not indicate any negative experiences with social media, a significant number – 17% – reported some form of cyberbullying directed at their cancer diagnosis.

“Based on our initial findings from this study of the prevalence and potential issues related to social media use among AYA with cancer, we have discussed adding social media use questions as part of our initial patient evaluations and prompting it as part of the clinical discussion between our providers, patients,” says Dr. Felker. “Questions such as, ‘What have you been reading on social media that you’d like to discuss with your provider?’ or ‘Are there any instances where you feel harassed or bullied online?’ can help our teams help the patient navigate these sometimes fraught interactions. Our team also plans to further investigate this approach with more involved interviews with families as a next step in the process.”

Also collaborating on the investigations were (patient study) Katherine Kerr from the University of Pittsburgh; Jaime E. Sidani, PhD, MPH, CHES from the University of Pittsburgh Graduate School of Public Health; César Escobar-Viera, MD, PhD, assistant professor of Psychiatry and member of the Center for Behavioral Health, Media and Technology and the Internet Delivered Interventions on LGBTQA+ Mental Health program, both at the University of Pittsburgh; and Ariel Shensa, PhD, MA , from the Department of Health Administration and Public Health at Duquesne University.

Cancer Medicine Caregiver Study Important Findings

In the second investigation, the research team conducted a survey with caregivers of children how have or were recently treated for a brain tumor to understand how they use social media with respect to their child’s disease, prognosis, and treatment plan.

Thirty-six individuals were included in the study who met the inclusion criteria. The overwhelming majority of caregivers used Facebook as their primary social media outlet – 86% of respondents. 

Facebook was used by the caregivers for both sharing information about their child’s disease and learning more about the condition. 31% of individuals surveyed requested a second opinion on their child’s condition, prognosis, and treatment approach based upon information derived from readings on Facebook.

More individuals surveyed reported having negative experiences about the information they were reading (40%) about their child’s cancer treatment than had positive experiences (34%).

Interestingly, those caregivers whose child had a worse prognosis showed a higher incidence of discussing treatment options they learned about through their social media reading that were not included by the primary oncologist in the initial plan of treatment for their child.

“Through these studies, we are learning that while patients and parents use and interact with social media differently, they derive both positive and negative influences on their emotional well-being,” says Dr. Maurer. “The findings that social media may influence caregiver decision making and AYA’s experience of cyberbullying underlines the importance of pediatric oncology providers talking about social media use with their patients and their families.”

Given that Facebook and other social media outlets are replete with non-peer reviewed, non-evidence-based subjective opinions on medical care and specific treatment approaches for pediatric brain tumors, clinical providers should be cognizant of the degree to which caregivers will seek out information from social media outlets such as Facebook and discuss how the information on these platforms may affect individuals personally or their understanding of their child’s disease, but also how information acquired from social media use may be able to support caregivers through their undoubtedly stressful and uncertain cancer journey.

Read more about the studies and their complete findings using the references below.

References

1. Reuman H, Kerr K, Sidani J, Felker J, Escobar-Viera C, Shensa A, Maurer SH. Living in an Online World: Social Media Experiences of Adolescents and Young Adults with Cancer. Pediatr Blood Cancer. 2022; e29666. doi.org/10.1002/pbc.29666. Online ahead of print.

2. Miller TT, Maurer SH, Felker JT. Searching for a Cure on Facebook: Patterns of Social Media Use Amongst Caregivers of Children With Brain Tumors. Cancer Med. 2022 Mar 28. doi: 10.1002/cam4.4693. Online ahead of print.