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

Ryan C Perkins,Lara Bishay,Rachel Gross,Kayla Regan,Gregory S Sawicki

doi:10.2196/25014

Abstract

BackgroundFor 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.ObjectiveThis 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.MethodsA 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.ResultsYouTube, 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.ConclusionsAYA 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.

Highlights

BackgroundCystic fibrosis (CF) is the most common life-shortening genetic disease in White people in the United States [1,2]
Participants were eligible for enrollment if they were aged between 13-30 years and diagnosed with cystic fibrosis (CF)
Our study indicated that AYA with CF do not currently use social media for social interaction or support

Summary

Introduction

Cystic fibrosis (CF) is the most common life-shortening genetic disease in White people in the United States [1,2]. CF was previously a disease with nearly uniform death in childhood but improved care has resulted in a median predicted survival age of patients of 46.2 years [1]. Current clinical guidelines for patient care recommend patients be evaluated quarterly and more frequently during the first year of life or with the illness [3,4,5]. Adolescents and young adults (AYA) with CF still face significant vulnerabilities. For individuals with cystic fibrosis (CF), adolescence and young adulthood are times of significant vulnerability and have been associated with clinical and psychosocial challenges.

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Results

Conclusion