Short bowel syndrome and the impact on patients and their families: a qualitative study
Published Date: 01st December 2020
Publication Authors: Ablett J
Background
Short bowel syndrome (SBS) is a malabsorptive condition that can result in intestinal failure (SBS‐IF). Many patients with SBS‐IF require home parenteral nutrition (PN) for survival. However, PN has profound effects on patients and their family members. The present study aimed to understand the lived experience of SBS‐IF for patients and their families.
Methods
In‐depth semi‐structured qualitative interviews were conducted with 15 patients with SBS‐IF and five adult family members living with someone with SBS‐IF. A patient‐centric approach was taken, with a patient steering group providing input and guidance to develop the interview guide. Key concepts were identified using thematic analysis of interview transcripts.
Results
Patients’ lives were dominated by having SBS‐IF. They described physical impacts that included patient‐reported signs and symptoms and physical restrictions comprising of restrictions on daily life, actives of daily living and physical functioning. In addition, they encountered emotional impacts with a plethora of negative feelings and social impacts, such as difficulties socialising and maintaining relationships. Patients coped by adapting their life around SBS‐IF, having support and adopting an attitude of gratitude and acceptance. Family members were also affected and, along with patients, appreciated the respite of a night off from infusions.
Conclusions
Patients and families face many difficulties with SBS‐IF. Healthcare professionals can support patients by facilitating them explore what others have found beneficial; adapting their life around PN, viewing PN with acceptance and trying to cultivate gratitude. Further research into the support required for families may be beneficial.
Sowerbutts, AM; Ablett, J et al. (2020). Short bowel syndrome and the impact on patients and their families: a qualitative study. Journal of Human Nutrition and Dietetics. 33 (6), 767-774
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