Using Social Media for Peer-to-Peer Cancer Support: Interviews With Young Adults With Cancer

Abstract

Background Web-based social support can address social isolation and unmet support needs among young adults with cancer (aged 18-39 years). Given that 94% of young adults own and use smartphones, social media can offer personalized, accessible social support among peers with cancer. Objective This study aims to examine the specific benefits, downsides, and topics of social support via social media among young adults with cancer. Methods We conducted semistructured interviews with young adults with cancer, aged between 18 and 39 years, who were receiving treatment or had completed treatment for cancer. Results Most participants (N=45) used general audience platforms (eg, Facebook groups), and some cancer-specific social media (eg, Caring Bridge), to discuss relevant lived experiences for medical information (managing side effects and treatment uncertainty) and navigating life with cancer (parenting and financial issues). Participants valued socializing with other young adults with cancer, making connections outside their personal networks, and being able to validate their emotional and mental health experiences without time and physical constraints. However, using social media for peer support can be an emotional burden, especially when others post disheartening or harassing content, and can heighten privacy concerns, especially when navigating cancer-related stigma. Conclusions Social media allows young adults to connect with peers to share and feel validated about their treatment and life concerns. However, barriers exist for receiving support from social media; these could be reduced through content moderation and developing more customizable, potentially cancer-specific social media apps and platforms to enhance one’s ability to find peers and manage groups.

The Transformation of Adolescent and Young Adult Oncological and Supportive Care in Canada: A Mixed Methods Study

“…Check-ins, checklists, and prompts are tools that some regional cancer programs and cancer centers have adopted [ 16 , 17 ] but are not all designed with the AYA population in mind [ 18 ]. A number of national and international organizations have developed their online/virtual hubs for AYAs to gather, receive mentorship, and retrieve information and resources [ 19 , 20 ]. In addition, some regional cancer centers in Canada and across other jurisdictions have their own dedicated programs that provide space for AYAs to gather and connect [ 4 ].…”

How TikTok Is Being Used to Help Individuals Cope With Breast Cancer: Cross-sectional Content Analysis

“…Social support has long been noted as being beneficial [ 29 ], especially in health situations [ 30 ] and more specifically in the case of patients with cancer, survivors, and their loved ones [ 31 - 33 ]. In the digital era, social support can easily take place through technological mediums, whether through preplanned interventions or spontaneously through individual use [ 22 , 34 - 38 ]. Our findings corroborate with this existing research in that the overwhelming majority of videos in our sample mentioned support, coping, and advocacy [ 39 , 40 ].…”

“…Of the several key elements of cancer advocacy [ 21 ], social media platforms are the best positioned to guide individuals (eg, listening and sharing personal stories and providing support), educate about cancer, and raise awareness of important issues. Web-based peer-to-peer support can reduce social isolation and address unmet support needs by connecting individuals, especially younger individuals, to share their experiences and validate their treatment and life concerns [ 22 ].…”

Discourse about human papillomavirus (HPV)-associated oropharyngeal cancer (OPC) on Twitter: Lessons for public health education about OPC and dental care

“…The purpose of the current research is to distill public understanding of human papillomavirus (HPV)-associated oropharyngeal cancer (OPC) by using social data mining and a software-assisted quantitative content analysis. Our research is predicated on two facts: (a) Rates of HPV-associated OPC have increased, creating an urgent need to understand what the public knows and discusses [ [1] , [2] , [3] ]; and (b) Many people actively use social media sites to obtain cancer information [ 4 , 5 ].…”