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.

中文翻译：

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“我觉得我的房子被带走了”：父母为他们的医学复杂、依赖技术的孩子进行家庭改造的经历

依赖技术的儿童是重病儿童的一个亚群，他们的生命受到限制，在家中由家人照顾。尽管自 20 世纪 80 年代后期以来，以家庭为基础的护理一直是这些儿童的护理模式，但关于父母对家庭进行改造以使他们的家成为照顾孩子的地方的经历的文献很少。使用 2017 年 8 月至 2018 年 6 月期间对生活在英格兰、苏格兰和威尔士的 12 位父母（10 位母亲和 2 位父亲）进行的自动驱动照片启发访谈的结果，这些父母有一个依赖技术的孩子（5-25 岁）和大卫·西蒙 (David Seamon) 的五个居家概念（挪用、安逸、再生、扎根和温暖）作为概念框架，本文探讨了父母如何 有经验的家庭适应。主题分析产生了“家需要成为所有家庭成员的家”的元主题和三个关键主题：（1）“你只是被告知”和“你没有参与”；(2) 只是“最便宜”、“最快”、“短期”的方法；(3) 具有“控制力”和“思考透彻”。让父母参与对他们的家进行改造（家庭知情设计）的决策是显而易见的，这不仅是为了国家节省成本的角度，而且是为了创造一个优化健康的美观和功能性的家，整个家庭的幸福感和宾至如归的感觉。这只是“最便宜”、“最快”、“短期”的方法；(3) 具有“控制力”和“思考透彻”。让父母参与对他们的家进行改造（家庭知情设计）的决策是显而易见的，这不仅是为了国家节省成本的角度，而且是为了创造一个优化健康的美观和功能性的家，整个家庭的幸福感和宾至如归的感觉。这只是“最便宜”、“最快”、“短期”的方法；(3) 具有“控制力”和“思考透彻”。让父母参与对他们的家进行改造（家庭知情设计）的决策是显而易见的，这不仅是为了国家节省成本的角度，而且是为了创造一个优化健康的美观和功能性的家，整个家庭的幸福感和宾至如归的感觉。