Perceptions of Social Media Use to Augment Health Care Among Adolescents and Young Adults With Cystic Fibrosis: Survey Study

Abstract

Background For individuals with cystic fibrosis (CF), adolescence and young adulthood are times of significant vulnerability and have been associated with clinical and psychosocial challenges. Social media may offer innovative care delivery solutions to address these challenges. Objective This study explored motivations and attitudes regarding current social media use and preferences for a social media platform in a sample of adolescents and young adults (AYA) with CF. Methods A cross-sectional survey was administered to 50 AYA with CF followed at a large pediatric-adult CF center. The survey included questions regarding social media platform utilization, attitudes toward general and CF-specific online activities, and preferences for a CF-specific care delivery platform. Results YouTube, Snapchat, and Instagram were the most commonly used social media platforms. AYA with CF do not report routinely using social media for health-related information acquisition, social support, or help with adherence. However, their perceptions of social media utilization and preferences for platform development suggest interest in doing so in the future. Conclusions AYA with CF use social media and expressed interest in the development of a social media platform. Platform development will allow for gaps in health care delivery to be addressed by improving social support and adherence while augmenting current methods of health information acquisition.

Author Reply to: Empowering Without Misinforming Adolescents and Young Adults with Cystic Fibrosis. Comment on “Perceptions of Social Media Use to Augment Health Care Among Adolescents and Young Adults With Cystic Fibrosis: Survey Study”

“…The COVID-19 pandemic has forced us to consider the incorporation of alternative models of care delivery. As noted in our study [ 2 ], social media is a model with potential to address compliance, social support, reduce isolation, and other vulnerabilities. The authors raise the question about medical misinformation and the potential adverse implications it may impart in care delivery.…”

Health Literacy Implementation Principles: Pediatric Colorectal Program Development

“…Parents often become their children's information sources (Bray & Sinha, 2017). Social media and online sources become the gateway of normalization, social support, comparison, patient empowerment, dissatisfaction with healthcare or HCPs, and referral networks (Perkins et al, 2021; Smailhodzic et al, 2016). Reppucci et al (2022) identified 96 Instagram and 57 Twitter accounts and 94 Facebook pages or groups dedicated to pediatric colorectal information sharing.…”

Social media to promote treatment adherence among adolescents and young adults with chronic health conditions: A topical review and TikTok application.

“…Limited research has analyzed AYAs’ use of commercial social media platforms specifically for adherence, such as strategies for remembering and organizing medications. A few studies have investigated AYAs’ use of social media for self-management information more broadly (e.g., looking up information about their specific disease or treatment), generally finding that small subsets of AYAs utilized social media for this purpose (e.g., Anikputa & Horner, 2021; Malloy et al, 2022; Perkins et al, 2021). For example, when Instagram posts from AYAs with inflammatory bowel disease were coded for disease self-management information, only 3% of posts met inclusion criteria, with these posts covering topics such as dietary changes, symptoms and complications, and navigating the health care system (Malloy et al, 2022).…”