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母亲照顾需要胃造口管的残疾儿童的经历。

Mothers' experiences caring for children with disabilities who require a gastrostomy tube.

作者信息

Spalding K, McKeever P

机构信息

Hospital for Sick Children, Toronto, Ontario, Canada.

出版信息

J Pediatr Nurs. 1998 Aug;13(4):234-43. doi: 10.1016/S0882-5963(98)80050-X.

Abstract

In this qualitative study, mothers' experiences of feeding children with severe disabilities by a gastrostomy tube are described. Twelve mothers each participated in one, open-ended, home interview. Mothers gave detailed accounts of their activities and the tremendous stress involved in feeding the children. They described spending enormous time and energy seeking confirmation of the feeding problem and devising extraordinary practices to ensure the child's survival before "giving in" to the gastrostomy tube. Following gastrostomy tube insertion, they initially felt relief and disappointment, before customizing feeding and moving on. Mothers' suggestions for improving professional services are discussed along with implication for practice and research.

摘要

在这项定性研究中,描述了母亲们通过胃造口管喂养重度残疾儿童的经历。12位母亲各自参加了一次开放式的家庭访谈。母亲们详细讲述了她们的活动以及喂养孩子过程中所涉及的巨大压力。她们描述了在“接受”胃造口管之前,花费大量时间和精力寻求对喂养问题的确认,并想出非凡的方法来确保孩子的生存。在插入胃造口管后,她们最初感到宽慰和失望,随后调整喂养方式并继续前行。文中讨论了母亲们对改善专业服务的建议以及对实践和研究的启示。

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