EXPLORING SELF-MANAGEMENT CHALLENGES OF ADOLESCENTS AND YOUNG ADULTS WITH INFLAMMATORY BOWEL DISEASE IN AN ONLINE INSTAGRAM SUPPORT COMMUNITY

Abstract

PURPOSE: The purpose of this qualitative study was to explore disease self-management challenges posted in an online Instagram support community by adolescents and young adults (AYAs) with inflammatory bowel disease (IBD). BACKGROUND: For the estimated 6.8 million people worldwide living with IBD, effective disease self-management is paramount to supporting positive disease outcomes including quality of life. IBD self-management is highly individualized and can include a combination of medication management, ostomy management, and lifestyle modification. Self-management can be a complex process as it is often influenced by unpredictable disease trajectory. AYAs are disproportionately affected by IBD and experience myriad psychosocial and self-management challenges considering their stage of development and disease status. Youth with chronic conditions often turn to social media as a source of information and support. Instagram is a popular social media platform among AYAs, with more than onethird of users falling between 13 and 24 years of age. Harnessing this real-world data can reveal the authentic selfmanagement challenges of AYAs with IBD. METHOD(S): Public Instagram posts between January and December 2019 were manually extracted from an online IBD support community with over 16,7000 followers (see examples in Figure 1). We extracted posts about self-management from Instagram users who: 1) indicated they had IBD; and 2) stated they were 13-24 years old or in middle school, high school, or college. Using thematic analysis, authors independently coded and identified emerging themes about IBD self-management challenges (Figure 2). Authors discussed any disagreement about identified themes through an iterative process until consensus was reached. RESULT(S): Out of 2,700 posts assessed for eligibility, 83 met inclusion criteria. Six major themes about self-management emerged: Desire for Normalcy, Dietary Changes, Education and Career, Healthcare System, Relationships with Others, and Symptoms and Complications. Additionally, nine subthemes emerged: Finding Balance, Wanting a Normal Life, Transitioning to College and Work, Handling School, Understanding Diagnosis, Accessing Health Services, Navigating Treatment and Side Effects, Managing Significant Relationships, and Seeking Peers with IBD. Self-management challenges permeated every aspect of life, including relationships, school activities, and aspirations for the future. CONCLUSION(S): Our findings represent the first thematic analysis of Instagram posts in an online IBD community and provide a crucial perspective of the concerns of AYAs with IBD. Selfmanagement challenges were wide-ranging and complex, highlighting the gap between self-management needs and skills in this population. Future research should further explore these challenges to develop tailored self-management interventions to improve quality of life in AYAs with IBD.