Caeli Malloy, BSN, RN, is a PhD candidate and T32 predoctoral fellow at Indiana University School of Nursing.
Susan M. Rawl, PhD, RN, FAAHB, FAAN, is a Doris J. Froebe Endowed Professor at Indiana University School of Nursing.
Gastroenterol Nurs. 2022;45(4):254-266. doi: 10.1097/SGA.0000000000000657. Epub 2022 Jul 13.
The purpose of this qualitative study was to explore the challenges adolescents with inflammatory bowel disease (IBD) experience with disease self-management as expressed in an online Instagram social support community. Public Instagram posts between January and December 2019 were manually collected from an online IBD support community. To focus on adolescent self-management needs, only posts from Instagram users who (1) indicated they had inflammatory bowel disease, (2) were 13-24 years old, or were in middle school, high school, or college were collected. Using thematic analysis, authors independently coded and identified emerging themes about self-management. Of 2,700 Instagram posts assessed for eligibility, 83 posts met inclusion criteria. Six major themes about inflammatory bowel disease self-management emerged: Desire for Normalcy, Dietary Changes, Education and Career, Healthcare System, Relationships With Others, and Symptoms and Complications. As the first thematic analysis of Instagram posts in an online inflammatory bowel disease community, results provide a crucial perspective of the concerns of adolescents with inflammatory bowel disease. Self-management challenges were wide-ranging and complex, underscoring the importance of IBD self-management in the adolescent population. Nurses should take a holistic approach to assess self-management challenges and tailor care to the specific needs of adolescents living with inflammatory bowel disease.
本定性研究旨在探索炎症性肠病(IBD)青少年在网上 Instagram 社交支持社区中表达的疾病自我管理所面临的挑战。2019 年 1 月至 12 月期间,从在线 IBD 支持社区手动收集了公开的 Instagram 帖子。为了关注青少年自我管理的需求,仅收集了(1)表示患有炎症性肠病、(2)年龄在 13-24 岁之间或在初中、高中或大学的 Instagram 用户的帖子。通过主题分析,作者独立对自我管理的主题进行了编码和识别。在评估的 2700 个 Instagram 帖子中,有 83 个符合纳入标准。出现了六个关于炎症性肠病自我管理的主要主题:渴望正常、饮食变化、教育和职业、医疗保健系统、与他人的关系和症状及并发症。作为对在线炎症性肠病社区的 Instagram 帖子的首次主题分析,结果提供了青少年炎症性肠病患者关注的重要视角。自我管理的挑战是广泛而复杂的,这突显了在青少年人群中进行 IBD 自我管理的重要性。护士应该采取整体方法评估自我管理的挑战,并根据患有炎症性肠病的青少年的具体需求调整护理。