단장증후군 환자의 질병 경험

Abstract

Purpose: The purpose of this study was to describe the illness experience of patients with short bowel syndrome. Methods: Six patients with short bowel syndrome were recruited from a tertiary hospital in Korea. Semi-structured and face-to-face interviews were conducted with the participants between April, 2018 and October, 2018. The transcribed data were analyzed using thematic analysis. Results: Three themes and nine sub-thems emerged as follows. The first theme is suffering from bad symptoms caused by short bowel, including 1) difficult to suppress uncontrolled appetite, 2) fear of having abdominal pain at all time, and 3) having multiple diarrhea with non-digested food as sub-themes. The second theme is enduring negative consequences of the prolonged disease, including 1) must adopt a skinny body to the bone, 2) have to be dependent on TPN, and 3) Suffer from complications such as infection and dehydration. The last theme was having difficulties of living with hopelessness, including 1) being lack of information about the disease, 2) being hopeless of the fact that it is incurable, and 3) being nervous on endless medical bills to pay. Conclusion: Patients with short bowel syndrome are more likely to suffer from various physical, psychological, social, and financial problems. Based on the results of the study, health professionals could develop effective management guidelines. In addition, vigorous efforts such as multidisciplinary team approach including physicians, nurses, pharmacists and clinical dietitians are demanded to improve nutritional status and quality of life of the given population.