Faculty of Biology, Medicine and Health and Manchester Academic Health Science Centre, University of Manchester, Manchester, UK.
Adelphi Values, Bollington, UK.
J Hum Nutr Diet. 2020 Dec;33(6):767-774. doi: 10.1111/jhn.12803. Epub 2020 Aug 10.
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.
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.
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.
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.
短肠综合征（SBS）是一种吸收不良的病症，可导致肠衰竭（SBS-IF）。许多 SBS-IF 患者需要家庭肠外营养（PN）才能生存。然而，PN 对患者及其家庭成员有深远的影响。本研究旨在了解 SBS-IF 患者及其家属的生活体验。
对 15 名 SBS-IF 患者和 5 名与 SBS-IF 患者同住的成年家属进行深入的半结构化定性访谈。采用以患者为中心的方法，由患者指导小组提供意见和指导，制定访谈指南。使用主题分析对访谈记录进行关键概念识别。
患者的生活完全被 SBS-IF 所主导。他们描述了身体上的影响，包括患者自述的体征和症状以及身体上的限制，包括日常生活、日常生活活动和身体功能的限制。此外，他们还经历了情感上的影响，包括许多负面情绪，以及社会方面的影响，例如社交困难和人际关系维持困难。患者通过适应 SBS-IF 调整生活、获得支持以及采取感恩和接受的态度来应对。家庭成员也受到影响，他们和患者一样，非常感谢 PN 输注过程中可以获得一夜的休息。
SBS-IF 患者及其家属面临许多困难。医疗保健专业人员可以通过帮助患者探索他人认为有益的方法，使他们适应 PN，接受 PN，并努力培养感恩之情，为患者提供支持。进一步研究家庭所需的支持可能会有所帮助。
