Disease experiences and perspectives of adolescent patients with inflammatory bowel disease: a meta-synthesis of qualitative research

青少年炎症性肠病患者的疾病经历和观点:一项定性研究的荟萃分析

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Abstract

PURPOSE: The prevalence of inflammatory bowel disease (IBD) in adolescents worldwide is increasing year by year. In order to better manage the disease, it is necessary to listen to the real voice of patients. Therefore, this study aims to explore the real experience of adolescents with IBD and propose targeted intervention strategies based on the bio-psycho-social model. DESIGN: Qualitative meta-synthesis. METHODS: A systematic search was conducted across ten electronic databases-PubMed, Embase (Ovid), Web of Science, CINAHL, Cochrane Library, Scopus, PsycINFO, CNKI, Wanfang, and VIP-from their inception until October 2024. A total of 18 qualitative studies were included following a rigorous application of predefined inclusion criteria. Two independent reviewers performed study selection and data extraction, with discrepancies resolved through consensus with a third reviewer. Thematic synthesis was employed to integrate qualitative findings across the included studies in a systematic and iterative manner. FINDINGS: The synthesized findings revealed three overarching themes and seven subthemes: (1) Challenges of self-remodeling and growth in adolescent patients with IBD under the influence of the condition; (2) The roles and function of family and healthcare systems in adolescent disease management; and (3) The complex interplay between social environmental factors and illness adaptation in adolescents with IBD. CONCLUSION: Adolescents with IBD encounter multifaceted experiences across individual, familial, healthcare, and social domains. Developing and implementing culturally sensitive, integrated management strategies aligned with the biopsychosocial model is essential to support these adolescents during their transition to adulthood and promote holistic development. SYSTEMATIC REVIEW REGISTRATION: https://www.crd.york.ac.uk/PROSPERO/view/CRD42024599200.

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