Negotiating Medication Adherence in Everyday Life with Inflammatory Bowel Disease: A Qualitative Study

Background: Inflammatory bowel disease (IBD), including Crohn’s disease, ulcerative colitis, and IBD unclassified, is a chronic condition that can affect daily life. Maintenance therapy is essential, yet non-adherence remains common and may compromise treatment outcomes. This study aimed to explore how adults with IBD understand, negotiate, and enact medication adherence as part of everyday self-care. Methods: Inductive, qualitative, semi-structured interviews were conducted with adults diagnosed with IBD at a gastroenterology clinic in Sweden. Interviews were audio-recorded, transcribed verbatim, and analysed using content analysis. Results: Fifteen interviews were conducted (9 ulcerative colitis, 5 Crohn’s disease, 1 IBD-U). Three main categories were identified: illness perceptions, healthcare perceptions, and treatment perceptions. Medication adherence was described as an ongoing process shaped by how participants interpreted symptoms, adapted to life with IBD, and evaluated the need for treatment. Participants weighed the perceived benefits of medication against concerns about adverse effects and often combined medical treatment with lifestyle-based strategies for symptom management. Trusting communication, continuity of care, and access to relevant information facilitate adherence, while practical treatment burdens and uncertainty regarding disease activity undermined adherence. Conclusion: Medication adherence in IBD is embedded within everyday self-care and influenced by illness perceptions, treatment beliefs, practical challenges, and healthcare encounters. Clinicians should acknowledge patients’ concerns, dietary practices, and lifestyle strategies alongside medical treatment. Person-centred communication, clear treatment goals, and shared decision-making may support adherence and strengthen self-care.