Experiences of Transition to Adult Care Among Patients With Inflammatory Bowel Disease in Stockholm County. A Qualitative Study

Background Patients with childhood‐onset inflammatory bowel disease (IBD) more often present with severe disease phenotypes and are at increased risk of low school performance, later psychiatric disorders and low attachment to the labour market. The transition to adult care can be challenging, as it involves changes in care routines and relationships with healthcare providers. An unsuccessful transition can result in increased disease burden, increased loss to follow‐up and increased emotional stress for patients and parents. This study aimed to explore the experiences of transition to adult care among patients with childhood‐onset IBD and their parents, both before and after transfer and to identify key processes and influences shaping the transition process. Methods Semi‐structured interviews were conducted with 15 patients (9 pre‐ and 6 post‐transfer) and 8 parents. The interview data were analysed using reflexive thematic analysis. Results Four overarching themes were identified: developing autonomy through the transition , clarifying the unknown , shifting from familiar bonds to new connections and experiencing emotional strain during the transition . Pre‐transfer patients expressed concerns about leaving familiar paediatric healthcare environments and establishing relationships with new healthcare professionals. Post‐transfer patients described increased responsibility for managing their healthcare and recognised the challenges associated with greater autonomy; however, they generally reported satisfaction with adult care despite initial concerns. Parents worried about losing involvement in their child's care and feared reduced emotional support and lower‐quality care after transfer. Across all groups, participants emphasised the emotional and practical adjustments required during the transition, particularly the need to establish new relationships with healthcare providers. Suggested improvements included clearer communication, written information and better preparation regarding the differences between paediatric and adult care. Conclusions Transition from paediatric to adult care in IBD involves emotional, relational and practical challenges for both patients and parents. Structured transition pathways, clear communication and adequate preparation may facilitate continuity of care and support the development of autonomy. Although most participants reported positive experiences after transfer, further research is needed to determine how adult healthcare services can best support young adults with IBD and optimise long‐term transition outcomes.