Experiences and insights from parents of children with temporary feeding tubes.

IF 1.6 4区 医学 Q3 NURSING
Claire Reilly, Jeanne Marshall, Rebecca Packer, Nikhil Thapar, Maryanne Syrmis, Nadine Frederiksen, Kristie L Bell
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引用次数: 0

Abstract

This study aimed to describe parents' experiences of children with temporary feeding tubes by surveying parents whose children required tubes. This survey included three sections including; (A) Depression Anxiety Stress Scale (DASS-21); (B) Paediatric Assessment Scale for Severe Feeding Problems (PASSFP); and (C) open-ended questions on satisfaction and experiences. Data were analysed using descriptive statistics and inductive content analysis. A total of 44 parent participants completed the survey. Most participants reported satisfaction with their child's care, although for most, tube removal occurred after ≤5 days (n = 25, 57%). Children who were discharged home with a temporary feeding tube (n = 7, 16%) had more feeding difficulties. Two themes were identified: 1) navigating tube feeding and 2) health service experiences. Although parents were generally positive about their child's care, some described ongoing medical and psychosocial impacts. Many parents desired more involvement in decision-making and tube feeding care. Parents described varied experiences regarding temporary tube feeding both in hospital and after discharge home. Further studies are needed across all spectrums of temporary tube feeding care, especially those discharged home. These findings underscore a need for enhanced support and education for parents, which could improve outcomes for children with temporary feeding tubes.

临时喂食管儿童家长的经验与见解。
本研究旨在通过调查儿童需要临时喂食管的家长来描述父母对儿童使用临时喂食管的经历。本调查包括三个部分,包括;(A)抑郁焦虑应激量表(DASS-21);(B)儿童严重喂养问题评估量表(PASSFP);(C)关于满意度和体验的开放式问题。数据分析采用描述性统计和归纳性内容分析。共有44位家长参与了调查。大多数参与者报告对他们孩子的护理感到满意,尽管对大多数人来说,拔管时间≤5天(n = 25,57%)。出院时使用临时喂食管的儿童(n = 7,16 %)有更多的喂食困难。确定了两个主题:1)导航管饲和2)卫生服务经验。虽然父母对孩子的照料总体上持积极态度,但一些父母描述了持续的医疗和心理社会影响。许多家长希望更多地参与决策和管饲护理。家长们描述了在医院和出院后临时管饲的不同经历。需要对所有类型的临时管饲护理进行进一步的研究,特别是那些出院回家的人。这些发现强调需要加强对父母的支持和教育,这可能会改善临时喂食管儿童的结局。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Journal of Child Health Care
Journal of Child Health Care NURSING-PEDIATRICS
CiteScore
4.10
自引率
15.80%
发文量
60
审稿时长
>12 weeks
期刊介绍: Journal of Child Health Care is a broad ranging, international, professionally-oriented, interdisciplinary and peer reviewed journal. It focuses on issues related to the health and health care of neonates, children, young people and their families, including areas such as illness, disability, complex needs, well-being, quality of life and mental health care in a diverse range of settings. The Journal of Child Health Care publishes original theoretical, empirical and review papers which have application to a wide variety of disciplines.
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