Moving Beyond the Friend-Foe Myth: A Scoping Review of the Use of Social Media in Adolescent and Young Adult Oncology

Abstract

Purpose: Adolescents and young adults (AYA) with cancer present a unique challenge to health care institutions. Their cancer diagnosis and treatment have a profound impact upon their health and well-being. Despite the various support services aimed at improving their quality of life, their needs and preferences are often underestimated or misjudged. Recent studies show that patients are empowered by the knowledge and support they receive online. Given the extensive use of social media among AYA, we aim to identify promises, challenges, and recommendations for integrating these platforms in AYA cancer care. Methodology: We systematically searched seven databases systematically: Scopus, PubMed, PsycInfo, Web of Science, CINAHL, SocINDEX, and Media. We placed no restriction on the type of methodology used in the studies. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses was used to frame the research. Results: Many studies argued that health care professionals need to integrate social media in their clinical practice to engage with patients' lifeworld. Social media were considered important allies in optimizing cancer care at all levels of support, ranging from information provision, treatment adherence, diet and exercise interventions, to professional, peer, and psychosocial self-care. Lack of research on the efficacy of social media in the context of psychosocial support was a commonly cited problem. A small number of publications paid attention to the inherent risks of promoting self-care online. Conclusion: Future studies should continue to pursue empirical research on the efficacy of online psychosocial care, while not neglecting the ethical challenges of social media research.

“The stakes could not be higher”: A mixed methods study of parental social media use in pediatric oncology

“…Online support groups themselves may not be diverse and inclusive communities, and families of color likely have significantly different experiences with SM and with trust in physicians and medical institutions. Adolescent perspectives were also not explored in our study 31,32 …”

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

“…Social media also appears to increase social connectedness among young adults with cancer [24,25]. Peer-to-peer sharing on social media may meet unique, age-specific needs [26][27][28][29]; however, many still recognize the need to better understand how young adults with cancer use social media for social support [30,31]. Social media engagement can involve complex relational processes where young adults with cancer benefit most from reciprocal and responsive disclosures [32]; however, few have addressed upstream experiences that facilitate (or hinder) cancer-related conversations on social media.…”

“…Previous studies have often focused on the positive impacts of social media use, with a limited focus on potential downsides in these novel approaches [ 29 , 36 ]. If it is known that emotions drive social connections on the web, including negative mental experiences (eg, isolation and fear) [ 30 ], then there is a need to provide more balanced approaches to understand why young adults are motivated to organically share their stories and drawbacks of peer support. Thus, for this study, we seek to examine specific benefits and downsides, along with motivations for specific topics of peer-to-peer social support when using social media from the lived experiences of young adults with cancer.…”

Initiation and changes in use of social media for peer support among young adult cancer patients and survivors

“…5,6,12 Many young adults rely on providers for disease and treatment-related information and connect online with friends and family during diagnosis and treatment, but leverage social media for cancer-related support throughout their cancer timeline. 13,14 Young adults want to meet peers with similar cancer experiences 11 and access support through convenient, technologybased platforms. 15,16 Social media can potentially reduce unmet social support needs through peer-to-peer connections.…”

“…Social media use is high among young adults in the United States 17 and among young adults with cancer, social media is often desired as a support resource. 18,19 Social media is used in young adult oncology 13 to provide information 14 ; promote treatment adherence, nutrition, or physical activity [20][21][22] ; and for psychosocial support. 23,24 However, few resources focus on social support and initiation is a challenge-benefits cannot be realized without use.…”