EXPLORING RELATEDNESS AS SOUGHT BY ADOLESCENTS AND YOUNG ADULTS IN AN ONLINE INSTAGRAM INFLAMMATORY BOWEL DISEASE SUPPORT COMMUNITY

Abstract

Abstract INTRODUCTION Individuals with chronic conditions have flocked to social media as a source of information, connection, and support. Online social groups are particularly salient for individuals with isolating or stigmatized conditions such as inflammatory bowel disease (IBD). IBD self-management is complex, ongoing, and highly individualized. Adolescents and young adults (AYAs) often struggle with IBD self-management, resulting in increased risk for poor health outcomes. AYAs with IBD are active on social media sites, but little is known about the possible drivers of motivation for AYAs to engage in online support communities. Self-Determination Theory proposes that behavior is intrinsically motivated by an individual’s need for autonomy, competence, and relatedness. Relatedness has been defined as a sense of group belonging and has been theorized as a key component of behavior change. However, little is known about the way in which online communities may fulfill the need for relatedness for people with chronic conditions. In this study, we aim to explore the way AYAs with IBD find relatedness in an Instagram IBD support community. METHODS We extracted public Instagram posts published between January and December 2019 in a popular IBD support group. In this group, Instagram users sent questions about IBD to the group account owner via direct message. The owner screenshotted user messages and posted these anonymous screenshots to the group, allowing other users to leave comments. We extracted posts about IBD self-management from users who indicated that they had IBD and that they were 13-24 years old or in middle school, high school, or college. Eighty-three posts were included. Then, we screenshotted and transcribed comments under each post, resulting in 1,110 unique comments. Using thematic analysis, three investigators have begun familiarizing themselves with the data, independently coding comments, and identifying emerging themes. Themes will continue to be refined through an iterative process. RESULTS From preliminary analysis, five themes have emerged: Validation, Autonomy Support, Well Wishes, Shared Identity, and Connection Within and Beyond Illness. Instagram users connected with AYAs with IBD in a variety of ways by validating their concerns, supporting their autonomy in making self-management decisions, providing online human connection, and uplifting them in their illness journeys. CONCLUSION Relatedness is a critical component of behavioral interventions, but is poorly understood in reference to self-management support in AYAs with IBD. As AYAs seek relatedness online, it is crucial to understand this population’s needs for relatedness in developing future interventions that are effective, sustainable, and tailored to the self-management needs of AYAs with IBD.