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“我感觉我的房子被夺走了”:有医疗复杂、技术依赖孩子的父母的家庭改造体验。

'I feel like my house was taken away from me': Parents' experiences of having home adaptations for their medically complex, technology-dependent child.

机构信息

Faculty of Health, Social Care and Medicine, Edge Hill University, Ormskirk, Lancashire, UK.

Auckland University of Technology, Auckland, New Zealand.

出版信息

Health Soc Care Community. 2022 Nov;30(6):e4639-e4651. doi: 10.1111/hsc.13870. Epub 2022 Jun 17.

Abstract

Technology-dependent children are a sub-population of seriously ill children with life-limiting conditions who are being cared for at home by their families. Although home-based care has been the model of care for these children since the late 1980s, there is a paucity of literature about parents' experiences of having home adaptations made to enable their home to be a place of care for their child. Using the findings from auto-driven photo-elicitation interviews conducted between August 2017 and June 2018 with 12 parents (10 mothers and 2 fathers) who have a technology-dependent child (aged 5-25 years) living in England, Scotland and Wales and David Seamon's five concepts of at-homeness (appropriation, at-easeness, regeneration, rootedness and warmth) as a conceptual framework, this paper addresses how parents' experienced home adaptations. Thematic analysis generated a meta-theme of 'Home needs to be a home for all family members' and the three key themes: (1) 'You just get told' and 'you're not involved'; (2) It's just the 'cheapest', 'quickest', 'short-term' approach; (3) Having 'control' and 'thinking things through.' The need to involve parents in decision-making about adaptations that are made to their home (family-informed design) is clear, not only from a cost-saving perspective for the state, but for creating an aesthetic and functional home that optimises health, well-being and feelings of at-homeness for the entire family.

摘要

依赖技术的儿童是患有危及生命疾病的重病儿童的一个亚群,他们的家庭在家庭中照顾他们。尽管自 20 世纪 80 年代末以来,家庭护理一直是这些儿童的护理模式,但关于父母为使家庭成为照顾孩子的地方而进行家庭改造的经验的文献却很少。本研究使用了 2017 年 8 月至 2018 年 6 月期间与 12 名父母(10 名母亲和 2 名父亲)进行的自动照片诱发访谈的结果,这些父母有一个依赖技术的孩子(年龄 5-25 岁)生活在英格兰、苏格兰和威尔士,以及大卫·西蒙的五个居家概念(适居性、安逸性、再生性、扎根性和温暖性)作为概念框架,探讨了父母体验家庭改造的方式。主题分析产生了一个主题,即“家庭需要成为所有家庭成员的家”,以及三个关键主题:(1)“你只是被告知”和“你不参与”;(2)这只是“最便宜”、“最快”、“短期”的方法;(3)“拥有”控制“和”深思熟虑“。需要让父母参与对家庭进行的改造的决策(家庭知情设计)是明确的,不仅从为国家节省成本的角度来看是如此,而且还需要创造一个美观和功能齐全的家庭,为整个家庭的健康、幸福和居家感优化。

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