An exploration of the impact of home enteral tube feeding on the eating habits of the partners of adults receiving home enteral tube feeding.

Goodacre L

摘要

Background: Home enteral tube feeding (HETF) is becoming increasingly more common (Jones et al., 2006) with implications for primary care practice. Carers play a vital role in the management of people with feeding tubes and as a consequence need to address, not only the practical aspects of managing the system but wider implications in terms of the impact on their own eating habits. Current literature fails to reveal any evidence on how such carers manage their own food intake, identifying a gap in current knowledge. The aim of my research was to explore the impact of HETF on the eating habits of the partners of adult patients receiving HETF. Methods: A qualitative approach using symbolic interactionism was used to explore the impact of HETF on carers of people who are nil by mouth and the effects on their eating patterns. Purposive sampling ensured that the participants met the inclusion criteria by including carers of: nil by mouth people living in their own home; with a diagnosis of head & neck cancer or a neurological condition; who were at different stages in relation to the duration of receiving total HETF. Single semi-structured interviews were conducted with carers in their own home to explore changes in eating habits; how tube feeding affected social aspects of eating; coping strategies and support services accessed. Data were analysed thematically. A coding framework was developed using key words from transcripts. Codes were constantly reviewed to reflect understanding and interpretation of data. Interconnecting codes were grouped, re-coded and displayed as themes. Ethical approval was obtained from appropriate committees. Results: Ten people were identified as meeting the inclusion criteria of whom five consented to participate. Three key themes were identified: you have to eat to live, communal eating and managing change. Findings showed carers experienced overwhelming emotional responses as they adjusted to their new way of life, especially feelings of guilt when eating and drinking 'You couldn't you know you felt really guilty eating. You really did feel guilty eating'. HETF impacted on carers in different ways necessitating the use of several coping strategies of which, time, effective communication, developing a routine and enlisting support were key. Managing the enteral feeding system became another way of life, however, a need for initial intensive support, followed by continual practical, emotional support were identified. All carers reported some change in eating habits, short or long term, for example, change in meal times, reliance on quicker easier snack meals, missing meals, not eating in front of their partner and some experienced a role reversal regarding cooking, '...that was X's job X was a chef you see so...I cooked odd things but X mainly did all the cooking cos again I worked strange hours before I went on nights...'. Discussion: The study explored a neglected area in the field of HETF highlighting the profound impact HETF has on carers eating habits and psychosocial well-being. It is evident that over time carers accept that they have to eat and adjust to their new way of life. However, these data suggest that additional practical and emotional support in the early stages of HETF may be beneficial in improving this process. Conclusion: Carers' well-being should become an inclusive part of healthcare professionals initial and routine follow up with patients receiving HETF. Reference Jones, B., Holden, C., Dalzell, M., Micklewright, A. & Glencorse, C. eds (2006) Artificial Nutrition Support in the UK 2005.A report by the British Artificial Nutrition Survey (BANS) [Online]. London: A committee of the British Association for Parenteral and Enteral Nutrition. Available at http://www.bapen.org.uk (accessed on 12 February 2007).

机译：背景：家庭肠管饲喂（HETF）变得越来越普遍（Jones等人，2006年），对初级保健实践产生了影响。护理人员在管饲人员的管理中起着至关重要的作用，因此不仅需要解决管理系统的实际问题，而且还需要解决对他们自己的饮食习惯产生的广泛影响。目前的文献未能揭示有关这些照料者如何管理自己的食物摄入量的任何证据，从而发现了目前知识的空白。我研究的目的是探讨HETF对接受HETF的成年患者伴侣的饮食习惯的影响。方法：使用一种象征性互动主义的定性方法，研究了HETF对零口口者的照顾者的影响及其对他们饮食方式的影响。有目的的抽样调查通过确保照顾者包括以下人员，确保参与者符合入选标准：零口口住在自己家中的人;诊断为头颈癌或神经系统疾病;在接收总HETF的持续时间方面处于不同阶段的人。对照料者在家中进行了一次半结构化访谈，以探讨饮食习惯的变化。管饲如何影响饮食的社会方面;应对策略和获得的支持服务。对数据进行专题分析。使用成绩单中的关键词开发了编码框架。不断审查代码以反映对数据的理解和解释。互连代码被分组，重新编码并显示为主题。从适当的委员会获得了道德批准。结果：确定了十个人符合入选标准，其中五人同意参加。确定了三个关键主题：您必须吃饭以维持生活，公共饮食和应对变化。调查结果表明，护理人员在适应新的生活方式后，经历了压倒性的情绪反应，尤其是进食和饮酒时的内感“您不知道自己是否真的感到内。你真的确实感到内eating。 HETF以不同的方式影响照护者，因此必须采用几种应对策略，其中关键的是时间，有效的沟通，制定常规和争取支持。管理肠内进食系统已成为另一种生活方式，但是，人们发现需要最初的大力支持，然后需要持续的实践，情感支持。所有护理人员都报告了短期或长期饮食习惯的变化，例如，用餐时间的变化，对快餐的依赖变得更加快捷，零食少，在伴侣面前不进餐，以及某些烹饪方面的角色颠倒了。 ..那就是X的工作X是您看到的厨师，所以...我煮了些奇怪的东西，但X主要还是做了所有的烹饪工作，我在晚上去之前做了几个小时的奇怪工作...'。讨论：该研究探索了HETF领域中一个被忽视的领域，强调了HETF对看护者的饮食习惯和社会心理健康的深远影响。显然，随着时间的流逝，护理人员会接受他们必须吃饭并适应新的生活方式。但是，这些数据表明，在HETF的早期阶段提供更多的实践和情感支持可能会有益于改进此过程。结论：护理人员的健康应成为接受HETF的患者的初始和常规随访的医疗保健专业人员的包容性部分。参考文献Jones B.，Holden C.，Dalzell M.，Micklewright A.和Glencorse C. eds（2006）英国2005年人工营养支持。英国人工营养调查（BANS）的报告[在线]。伦敦：英国肠胃外和肠内营养协会委员会。可在http://www.bapen.org.uk（2007年2月12日访问）上获得。

An exploration of the impact of home enteral tube feeding on the eating habits of the partners of adults receiving home enteral tube feeding.

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