In a vigilant state of chronic disruption: how parents with a young child with type 1 diabetes negotiate events and moments of uncertainty
In a vigilant state of chronic disruption: how parents with a young child with type 1 diabetes negotiate events and moments of uncertainty
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DOI：
10.1111/1467-9566.13123
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发表时间：
2020-06-17
影响因子：
2.9
通讯作者：
Grabowski, Dan
中科院分区：
文献类型：
--
作者：
Kingod, Natasja;Grabowski, Dan
作为 1 型糖尿病 (T1D) 幼儿的父母和自我照顾代理人，生活要求很高，并且会扰乱“正常”的日常生活。研究主要集中在诊断时间作为一次性的传记中断。在本文中，我们将展示，对于有患有 T1D 的幼儿的家庭来说，传记中断如何可以被视为影响家庭功能和“正常”生活的持续警惕状态。我们将通过关注使家庭处于我们所谓的“慢性破坏”状态的暂时事件和时刻来展示这一点。这些事件是从住院到家庭、从家庭到托儿所、托儿所到日托、托儿所到学校的过渡以及与孩子有关的社会活动的准备。这些时刻更加流动，从日托工作人员和老师打电话给对自我照顾有疑虑的家长时的日常打扰，到与机构和市政当局的谈判以及持续的担忧状态。
Living as a parent and self-care surrogate of a young child with type 1 diabetes (T1D) is demanding and a disruption to 'normal' routinised daily living. Research has mainly focused on the time of diagnosis as a one-time biographical disruption. In this article, we will show how, in the case of families with young children with T1D, the biographical disruption can be viewed as a continuous state of vigilance that affects family functioning and 'normal' living. We will show this by focusing on the temporal events and moments that keep the families in a state of what we will term 'chronic disruption'. The events are the transitions from hospitalisation to home, home to nursery, nursery to daycare, and daycare to school and preparations for social activities concerning the child. The moments are more fluid, ranging from daily interruptions when daycare workers and teachers call parents with doubts about self-care to negotiations with institutions and municipalities and a constant state of worry.