The Multiple Dimensions of Self-Management in Active Inflammatory Bowel Disease: A Qualitative Analysis of Patients’ Daily Lived Experiences

Purpose: Self-management is critical to improving inflammatory bowel disease (IBD) health but challenging for patients. To inform the development of IBD self-management interventions and improve IBD health, our objective was to develop an in-depth understanding of factors that affect quality of life and health outcomes for patients with IBD. Methods: We conducted semi-structured interviews of adult IBD patients with a recent flare drawn from two health system cohorts. We analyzed interview data using an inductive-deductive rapid qualitative analysis process to identify key domains by age (18–44 years, 45–64 years, ≥ 65 years) and cohort. Results: We conducted 55 total interviews. Participants in both cohorts and across all ages focused on five key domains that are critical to living well with IBD: 1) key skills required for living and dealing with IBD; 2) perceptions about living with and confidence in dealing with IBD; 3) impact of social support; 4) effects of stress and emotions; and 5) self-management tools and resources. Conclusion: IBD self-management requires complex behavioral changes, including building several skills in recognizing and managing symptoms, managing diet and treatment, navigating care, and coping with unpredictability. Patients must work to build their confidence, avoid maladaptive thinking, and remain motivated despite setbacks. Addressing stress and mental health issues as well as eliciting social support are also critical to helping patients cope with IBD.