A Qualitative Study Exploring Psychosocial Care in Inflammatory Bowel Disease: Lessons from Aotearoa New Zealand

Background Existing evidence demonstrates that inflammatory bowel disease (IBD) profoundly impacts physical, psychosocial and emotional well-being, yet psychosocial support is limited in routine care in Aotearoa New Zealand (NZ). This qualitative study aimed to explore the lived experience of adults diagnosed with IBD in NZ, focusing on psychosocial challenges and patient-driven recommendations for improving support during diagnosis and early disease management. Methods Twelve adults with IBD participated in semi-structured interviews as part of a nested qualitative study. Data were analysed using the Framework Method of thematic analysis to identify key patterns in participants’ experiences. Results Four main themes reflected the experience of being diagnosed with IBD: 1) Trust and Mistrust, 2) Care not Cure, 3) Educate, Adhere, Empower, and 4) Dynamics of Coping and Adjustment. Participants described difficulties navigating the healthcare system, coping with changes in body and identity, and managing the psychological burden of living with a chronic illness. A consistent lack of integrated psychosocial support was reported. Participants emphasised the need for improved health literacy, support for medication adherence, and tailored psychological care. Their suggestions underscored the importance of embedding psychosocial services within routine IBD management. Conclusions Adults newly diagnosed with IBD in NZ face substantial psychosocial challenges that are not adequately addressed in current care models. Integrating psychosocial support into routine IBD care could alleviate patient burden and enhance health system responsiveness. These findings offer critical insights for developing more holistic, patient-centred approaches to IBD care in NZ and similar healthcare contexts.