Illness experience and needs in children with inflammatory bowel disease: a systematic review and meta-synthesis of qualitative studies

Abstract Background As the global incidence of pediatric Inflammatory Bowel Disease (IBD) rises, so does the complexity of its psychosocial burden. While biomedical protocols for clinical management are robust, the subjective illness experience—uniquely filtered through the developmental lens of adolescence—remains fragmented in current literature. This study systematically synthesizes qualitative evidence regarding the lived realities and unmet psychosocial needs of children and adolescents navigating IBD. Methods Adhering to ENTREQ and PRISMA standards, we executed a comprehensive search across ten databases (including PubMed, Embase, and CINAHL) from inception through January 3, 2026. The review exclusively targeted qualitative inquiries into the self-reported lives of patients under 18 years of age. We utilized the Joanna Briggs Institute (JBI) checklist for quality appraisal and employed Thomas and Harden’s thematic synthesis to integrate findings. The protocol was prospectively registered with PROSPERO (CRD42025637953). Results Synthesizing data from fourteen qualifying studies revealed a trajectory defined by four analytical themes. First, Constructing a “Normal” Identity exposes the exhaustive “hidden labor” children perform to mask their disruptive bodies. This exertion precipitates a Developmental Paradox, characterized by the tension between illness-enforced dependency and the adolescent drive for autonomy. Unchecked, this uncertainty leads to Reshaping Future Horizons, where a “shrinking world” constrains aspirations. Finally, Reclaiming Agency charts a divergent path from passive endurance to “active mastery” through intellectual engagement and restitution. Conclusions The pediatric IBD experience is defined by a fundamental conflict between physiological unpredictability and the normative imperatives of adolescence. For these patients, “normality” is a curated performance rather than a natural state. Clinical practice must therefore transcend symptom management to validate this hidden labor. Interventions should prioritize early transition readiness, institutional school accommodations, and fostering intellectual mastery to help patients reclaim agency and prevent the constriction of life aspirations.