Stavroulakis Theocharis, Baird Wendy O, Baxter Susan K, Walsh Theresa, Shaw Pamela J, McDermott Christopher J
Sheffield Institute for Translational Neuroscience (SITraN), The University of Sheffield, Sheffield, UK.
BMJ Support Palliat Care. 2014 Mar;4(1):57-63. doi: 10.1136/bmjspcare-2013-000497. Epub 2013 Dec 11.
This study aimed to explore the decision-making process leading up to gastrostomy insertion from the perspective of the patients and their informal carers. Gastrostomy feeding is commonly used to support motor neurone disease patients with dysphagia. However, there is no robust evidence to suggest the optimal timing for gastrostomy insertion.
Retrospective qualitative exploration using semistructured interviews with paired patients and carers in order to elicit their perceptions in relation to gastrostomy timing.
27 patients consented to the study; of these, 23 underwent a successful gastrostomy. Approximately 3 months following a successful gastrostomy, 10 patients and 8 carers were interviewed. Decision-making in relation to the timing of gastrostomy was described as being a difficult process with individual variations and wishes. A range of factors acted as triggers for taking the decision to proceed with gastrostomy such as prolonged, tiring and effortful meals; the task of food preparation; choking and aspiration; and weight loss. Factors such as the reluctance to give up oral feeding, not realising the potential benefits and negative perceptions of gastrostomy influenced a decision to delay the procedure. A tendency for late insertion was identified despite the opposite advice by health professionals.
The advice for early insertion does not outweigh the personal perceptions and psychosocial factors for patients and their carers. Understanding the factors which influence decision-making on an individual basis is important for information and care provision by healthcare professionals in aiding patients, and their carers, to make informed decisions in relation to gastrostomy timing.
本研究旨在从患者及其非正式护理人员的角度探讨胃造口术插入前的决策过程。胃造口喂养常用于支持患有吞咽困难的运动神经元病患者。然而，尚无有力证据表明胃造口术插入的最佳时机。
采用回顾性定性研究方法，对成对的患者和护理人员进行半结构式访谈，以了解他们对胃造口术时机的看法。
27名患者同意参与研究；其中23例成功进行了胃造口术。在成功进行胃造口术约3个月后，对10名患者和8名护理人员进行了访谈。胃造口术时机的决策被描述为一个艰难的过程，存在个体差异和不同愿望。一系列因素促使人们决定进行胃造口术，例如进餐时间延长、疲劳且费力；食物准备工作；呛噎和误吸；以及体重减轻。诸如不愿放弃经口喂养、未意识到潜在益处以及对胃造口术的负面看法等因素影响了推迟手术的决定。尽管健康专业人员给出了相反的建议，但仍发现存在延迟插入的倾向。
对于患者及其护理人员而言，早期插入的建议并不比个人认知和社会心理因素更重要。了解个体层面影响决策的因素对于医疗保健专业人员提供信息和护理非常重要，有助于患者及其护理人员就是否进行胃造口术以及何时进行做出明智的决策。
