A narrative inquiry into the disease adaptation experience of long-term follow-up patients with short bowel syndrome in Korea

Purpose: This study was conducted to describe the meaning of disease adaptation experience over a 5-year long-term follow-up of patients with short bowel syndrome.Methods: Four patients were recruited from a tertiary hospital in Korea. This study was conducted through first and second interviews from January 2019 to July 2022. The transcribed data were analyzed using narrative methods.Results: The mean age of the participants was 64 years, and the mean treatment period after small bowel resection was 100 months. The participants lost a mean of 19.3 kg body weight and all were receiving home total parenteral nutrition 2–7 days a week. The meaning of the experience of adapting to the disease for patients was found to be “extremely sensitive to the symptoms,” “considering eating food as another effective treatment method,” and “enduring the disease through family affection.”Conclusion: Patients are struggling alone to cope with physical symptoms and adapt to their disease. For this, they are doing their best to narrow the gap between normal and abnormal physical conditions by thoroughly implementing diet therapy according to their physical characteristics. This entire process is supported by their families.