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Using Participatory Narrative Inquiry to Assess Experiences and Self-Experimentation with Diet Interventions in
Celine Hos1, Merel Tebbens1, Tjitske Bezema2
1Tytgat Institute for Liver and Intestinal Research, Amsterdam UMC, University of Amsterdam, Meibergdreef 69-71, 1105 BK Amsterdam, The Netherlands.
Nutrients
|December 17, 2024
Summary
Patients with inflammatory bowel diseases (IBD) often experiment with lifestyle changes to improve quality of life. Participatory Narrative Inquiry (PNI) reveals that personalized dietary guidance is crucial for managing IBD effectively.
Area of Science:
- Gastroenterology and Nutrition Science
- Qualitative Health Research Methods
Background:
- Inflammatory bowel diseases (IBD), including Crohn's disease and ulcerative colitis, significantly impact patients' quality of life (QoL).
- Patients frequently engage in self-experimentation with lifestyle modifications, particularly dietary changes, to manage their condition.
- The characteristics of these patient-led interventions, including their nature, expectations, and perceived effectiveness, remain under-investigated.
Purpose of the Study:
- To systematically investigate the nature of self-experimentation with lifestyle changes in patients with IBD.
- To explore patient experiences and insights regarding dietary modifications and other lifestyle factors influencing QoL.
- To evaluate the utility of Participatory Narrative Inquiry (PNI) as a method for studying these patient-led experiments.
Main Methods:
- Employed Participatory Narrative Inquiry (PNI), a structured qualitative research methodology.
- Collected data through patient narratives focusing on their self-experimentation experiences with lifestyle and diet.
- Analyzed patient stories to identify patterns and insights related to quality of life improvements.
Main Results:
- PNI effectively facilitates the structured collection and analysis of IBD patient experiences with lifestyle and nutritional factors.
- Patients associate improved QoL with rest, psychological balance, and specific dietary changes.
- Significant variability exists in perceived food efficacy; a food beneficial for one patient may be detrimental to another.
Conclusions:
- Participatory Narrative Inquiry (PNI) is a suitable method for gathering data on patient self-experimentation in IBD.
- Findings underscore the need for personalized dietary and lifestyle guidance tailored to individual patient needs.
- This approach can yield valuable insights for both individual patient management and future scientific research.
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