School of Health Sciences, University of Southampton, Highfield, Southampton, UK.
Solent NHS Trust, Hampshire, UK.
J Hum Nutr Diet. 2019 Oct;32(5):646-658. doi: 10.1111/jhn.12656. Epub 2019 Apr 21.
The number of people with an enteral tube (ET) living at home is increasing globally and services to support them to manage this complex and life-changing intervention vary across regions. The present study aimed to gain an understanding of the experiences of people living at home with an ET and their carers, as well as to explore their views of supporting services and ET-related hospital admissions.
A qualitative inductive descriptive design was employed. Semi-structured, face-to-face interviews with a purposive sample of people with an ET living at home and carers were undertaken. Interviews were transcribed, initial codes were assigned for salient constructs, and these were then grouped and developed into themes and sub-themes.
Nineteen people with ETs and 15 carers of people with ETs were interviewed. Five themes were generated: home better than hospital, feelings about the tube, living with the tube, help when you need it and cost for health service. Participants indicated the ET significantly influenced daily life. Participants described becoming used to coping with the ET at home over time and developing strategies to manage problems, avoid hospital admission and reduce resource waste. Variation in supporting services was described.
People with ETs and their carers need considerable support from knowledgeable, responsive healthcare practitioners during the weeks following initial placement of the ET. Twenty-four hour services to support people with ETs should be designed in partnership with the aim of reducing burden, negative experience, waste and hospital admissions. National frameworks for home enteral nutrition could set the standard for support for people with ETs.
全球范围内，居家带管人群数量不断增加，而针对他们的居家支持服务在各地区间存在差异，以帮助他们管理这一复杂且改变生活的干预措施。本研究旨在了解居家带管人群及其照护者的体验，以及探索他们对支持服务和与管饲相关的住院治疗的看法。
采用定性描述性的归纳设计。对具有居家带管经历的人群及其照护者进行了有针对性的半结构式面对面访谈。访谈内容被转录，初始代码被分配给突出的结构，然后这些代码被分组并发展为主题和子主题。
共对 19 名带管者及其 15 名照护者进行了访谈。产生了五个主题：居家优于住院、对管饲的感受、居家带管、需要时的帮助和医疗服务费用。参与者表示，管饲对日常生活有重大影响。参与者描述了随着时间的推移，他们逐渐适应了居家带管，并发展了应对问题、避免住院和减少资源浪费的策略。还描述了支持服务的差异。
带管者及其照护者在管饲初始安置后的数周内需要得到知识渊博、响应迅速的医疗保健从业者的大量支持。应与带管者合作设计 24 小时支持服务，以减轻负担、负面体验、浪费和住院治疗。国家居家肠内营养框架可以为带管者的支持制定标准。
