有复杂医疗状况儿童的父母对匀浆管饲的体验与看法。
The parental experience and perceptions of blenderized tube feeding for children with medical complexity.
作者信息
Soscia Joanna, Adams Sherri, Cohen Eyal, Moore Clara, Friedman Jeremy N, Gallagher Kelsey, Marcon Margaret, Nicholas David, Weiser Natalie, Orkin Julia
机构信息
Division of Paediatric Medicine, Department of Paediatrics, The Hospital for Sick Children, Toronto, Ontario, Canada.
Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada.
出版信息
Paediatr Child Health. 2021 Jun 28;26(8):462-469. doi: 10.1093/pch/pxab034. eCollection 2021 Dec.
OBJECTIVES
Parents of children with medical complexity are often expected to implement complicated plans of care, such as enteral tube feeding, to support the health of their child. Enteral feeding can have psychosocial implications for the parent, child, and family. Blenderized tube feeding (BTF) refers to the administration of pureed food and drinks through a feeding tube. Little is known regarding parents' experiences with BTF. Therefore, the purpose of this qualitative study was to understand the lived experience of BTF from the parent's perspective.
METHODS
This qualitative study was a grounded theory analysis utilizing semi-structured interviews of parents who provided at least 50% of their child's diet through BTF. Participants were recruited using purposive sampling from the Complex Care Program at a tertiary care paediatric centre. Interviews were conducted until thematic saturation was achieved. Themes were identified using constant comparative analysis of transcribed interviews.
RESULTS
Parents (n=10) felt that BTF positively affected the experience of tube feeding and enhanced their child's health and wellbeing. Parents described BTF as a means of self-empowerment and a mechanism to normalize feeding and care for the entire family. Despite reporting BTF as more time consuming than formula feeding, all parents were satisfied with having made the change, and planned on continuing the diet.
CONCLUSION
BTFs can improve the experience of tube feeding and positively address some of the negative psychosocial implications of enteral tube feeding, providing a sense of normalcy and control for parents caring for a child with medical complexity.
目的
患有复杂疾病的儿童的家长通常需要执行复杂的护理计划,如肠内管饲,以维持孩子的健康。肠内喂养可能会对家长、孩子和家庭产生心理社会影响。匀浆管饲(BTF)是指通过饲管给予泥状食物和饮品。关于家长进行匀浆管饲的经历,我们知之甚少。因此,本定性研究的目的是从家长的角度了解匀浆管饲的实际体验。
方法
本定性研究采用扎根理论分析方法,对那些通过匀浆管饲提供孩子至少50%饮食的家长进行半结构化访谈。通过目的抽样从一家三级儿科中心的复杂护理项目中招募参与者。访谈持续进行直至达到主题饱和。通过对访谈转录本进行持续比较分析来确定主题。
结果
10位家长认为匀浆管饲对管饲体验有积极影响,并改善了孩子的健康和幸福状况。家长们将匀浆管饲描述为一种自我赋权的方式,以及使整个家庭的喂养和护理正常化的一种机制。尽管报告称匀浆管饲比配方奶喂养更耗时,但所有家长都对做出这一改变感到满意,并计划继续采用这种饮食方式。
结论
匀浆管饲可以改善管饲体验,并积极应对肠内管饲的一些负面心理社会影响,为照顾患有复杂疾病孩子的家长提供一种正常感和掌控感。
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