Division of Nursing, Singapore General Hospital, Singapore, Singapore.
Neuroscience Research Australia, Sydney, New South Wales, Australia.
J Clin Nurs. 2019 Sep;28(17-18):3149-3157. doi: 10.1111/jocn.14863. Epub 2019 May 15.
To explore patients and carers' experience and perceptions of different modalities of long-term enteral feeding.
With an ageing population in Singapore, there is a concomitant increase in number of patients with dysphagia and hence increase in prevalence of enteral feeding. It is essential to understand experiences of patients and home carers with long-term home enteral feeding and perceptions of different modalities to better provide support.
A qualitative descriptive approach fulfilling the COREQ checklist criteria (See File S1). Nine patients who were receiving long-term enteral feeding and nine carers were recruited over the period of August to December 2017. One-to-one interviews were conducted and audio-recorded. An inductive content analysis approach, with open coding, creation of categories and abstraction of data, was adopted.
Three themes were generated: (a) factors influencing choice of mode of enteral feeding; respondents narrated factors such as need to "conceal" illness, need to be independent and previous bad experience with alternative modality (b) identified informational, emotional and physical needs. Respondents reported the need for support in terms of information on the different modalities, and training on how to self-care or provide care and (c) individual perception and attitude towards life with enteral feeding. Most respondents portrayed a positive outlook to life, despite that they could no longer participate in communal eating.
Understanding patients and carers' experience and perceptions will inform the development of strategies to empower future patients and carers in choice of modality for enteral feeding. Patients with percutaneous endoscopic gastrostomy (PEG) found it easier to integrate enteral tube feeding into daily lives. Carers played a pivotal role in choice of modality, as well as in care of patients on enteral feeding.
探索患者和照顾者对不同长期肠内喂养方式的体验和看法。
随着新加坡人口老龄化，吞咽困难患者的数量也相应增加，因此肠内喂养的患病率也有所增加。了解长期家庭肠内喂养患者和家庭照顾者的体验以及对不同方式的看法，对于更好地提供支持至关重要。
采用符合 COREQ 清单标准的定性描述方法（见文件 S1）。2017 年 8 月至 12 月期间，共招募了 9 名正在接受长期肠内喂养的患者和 9 名照顾者。进行了一对一的访谈，并进行了录音。采用了归纳内容分析方法，包括开放编码、创建类别和数据抽象。
生成了三个主题：（a）影响肠内喂养方式选择的因素；受访者讲述了需要“隐瞒”疾病、需要独立和对替代方式的先前不良体验等因素；（b）确定了信息、情感和身体需求。受访者报告说需要有关不同方式的信息支持，以及自我护理或提供护理的培训；（c）对肠内喂养的个人看法和态度。尽管大多数受访者再也无法参与集体用餐，但他们对生活仍持积极的态度。
了解患者和照顾者的体验和看法将为制定策略提供信息，以增强未来患者和照顾者在肠内喂养方式选择方面的能力。接受经皮内镜胃造口术（PEG）的患者发现更容易将肠内管饲纳入日常生活。照顾者在选择模式以及照顾肠内喂养患者方面发挥了关键作用。
