Background and aims: To improve quality of life (QoL), patients with inflammatory bowel diseases (Crohn's disease and ulcerative colitis) often self-experiment with lifestyle changes such as dietary modifications. The nature (e.g., type of interventions, expectations, perceived efficacy) of these single-subject experiments has not been systematically investigated.
Method: We used Participatory Narrative Inquiry (PNI), a structured qualitative method, to obtain information about these experiments through patient stories.
Results: We demonstrate that PNI can be a method to collect and analyze IBD patient ideas and experiences regarding lifestyle and nutritional factors in a structured manner to reveal valuable insights for personal and scientific follow-up research. Patients report rest, (psychological) balance, and a change in diet when describing times when they experienced a better QoL. When focusing on diet, patients reported a considerable number of food products that were experienced as beneficial by one person but detrimental by another.
Conclusions: PNI is a suitable method to obtain information about self-experimentation. An insight that was attained was that personalized (dietary) guidance that supports the individual is needed.
Keywords: diet; inflammatory bowel disease; lifestyle; quality of life; self-experimentation.