At Home With Data: Family Engagements With Data Involved in Type 1 Diabetes Management
At Home With Data: Family Engagements With Data Involved in Type 1 Diabetes Management
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在家掌握数据：家庭参与 1 型糖尿病管理中的数据
DOI：
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发表时间：
2019
期刊：
影响因子：
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通讯作者：
Ilana Dubovi
中科院分区：
文献类型：
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作者：
Victor R. Lee;Ilana Dubovi
本文报告了一项关于在照顾患有 1 型糖尿病 (T1D) 的儿童时家庭管理常规中使用定量数据的探索性研究。 T1D 治疗需要在孩子的家中、学校和其他活动中频繁测量和记录有关血糖浓度、营养摄入和胰岛素剂量的数值数据。我们使用分布式认知的视角来分析家庭成员和其他参与 T1D 儿童护理的人员之间的协调工作，并引入数据集水区的概念来指代多个主体和空间内部和之间的数据流和信息存储的路径。访谈和观察揭示了数据集水区存储和使用的三个主要特征：首先，数据移动和保留方式存在很大差异，以实现家庭成员和其他人之间的通信。其次，尽管有一些迹象表明有能力通过汇总读数进行叙述，但家庭往往更关注单个数据点，而不是汇总读数。第三，家庭经常进行对话，有时使用新奇的物品来使数值对 1D 儿童有意义。讨论了理解这一实践空间构成数据集水区的含义。
This article reports on an exploratory study of quantitative data use situated in families’ management routines while taking care of a child with Type 1 diabetes (T1D). T1D treatment requires frequent measurement and recording of numerical data about blood sugar concentration, nutritional intake, and insulin dosage at the child’s home, at school, and at other activities. We analyze coordination work between family members and others involved in the care of children with T1D using the lens of distributed cognition, and we introduce the notion of a data catchment to refer to the pathways of data flow and information storage within and between multiple agents and spaces. Interviews and observations reveal three main features of storage and use in data catchments: First, there is a great variability in how data move and are retained to enable communication between family members and others. Second, families tended to focus more on individual data points and less on aggregate readings despite some indications of ability to narrate through aggregate readings. Third, families engage in recurrent conversations and sometimes use novel artifacts to make numerical values meaningful to children with T1D. Implications for understanding this space of practice as constituting a data catchment are discussed.