Balancing Tensions between Caregiving and Parenting Responsibilities in Pediatric Patient Care
Balancing Tensions between Caregiving and Parenting Responsibilities in Pediatric Patient Care
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平衡儿科患者护理中的护理和养育责任之间的紧张关系
DOI：
10.1145/3359255
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发表时间：
2019
影响因子：
--
通讯作者：
Park, Sun Young
中科院分区：
文献类型：
--
作者：
Seo, Woosuk;Berry, Andrew B.L.;Bhagane, Prachi;Choi, Sung Won;Buyuktur, Ayse G.;Park, Sun Young
在儿科慢性病护理中，治疗过程不仅影响孩子的身体健康，还影响他或她的心理和情感发展。因此，照顾患有癌症等慢性疾病的儿科患者正成为父母照顾者的一项艰巨任务。他们不仅要满足管理孩子健康状况和治疗的护理需求，还要满足为孩子翻译知识、沟通疾病以及因孩子年幼而每天为孩子做出众多决定的育儿需求。通过 15 次半结构化访谈，我们调查了父母照顾者对抚养孩子和管理孩子健康的看法。我们确定了参与者在平衡养育和照顾责任时遇到的三种紧张关系：(i) 确保孩子的健康和安全与关注孩子的社会性发展之间的紧张关系；(ii) 披露健康相关信息与尽量减少儿童心理负担之间的紧张关系；(iii) 奖励孩子在治疗中的合作与维持纪律之间的紧张关系。总之，这些紧张关系揭示了一个持续的过程，在这个过程中，护理人员评估和解释他们的行为和责任，与跨多个时间尺度的预期后果相关。这些发现揭示了社会技术系统解释和支持这种迭代评估周期的主动过程的机会。
In pediatric chronic care, the treatment process affects not just the child's physical health, but his or her psychosocial and emotional development. As a result, caring for pediatric patients with a chronic illness such as cancer is becoming a daunting task for parental caregivers. They are expected to fulfill the caregiving needs of managing the child's health condition and treatment while also meeting the parenting needs of translating knowledge, communicating about the illness, and making numerous decisions on a daily basis for their sick child due to the child's young age. Drawing on 15 semi-structured interviews, we examined parental caregivers' perspectives on raising a child while also managing the child's health. We identified three tensions that participants encountered as they balanced parenting and caregiving responsibilities: (i) tension between ensuring the child's health and safety and attending to the child's social development, (ii) tension between disclosing health-related information and minimizing the psychological burden on the child, and (iii) tension between rewarding the child's cooperation in treatment and maintaining discipline. Together, these tensions reveal an ongoing process through which caregivers assess and interpret their actions and responsibilities relative to anticipated consequences across multiple time scales. These findings reveal opportunities for sociotechnical systems to account for and support this active process of iterative cycles of assessment.
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DOI：
10.1145/2675133.2675201
发表时间：
2015-02
期刊：
Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing
影响因子：
--
作者：
Leslie S. Liu;K. Quinn;W. Pratt
通讯作者：
Leslie S. Liu;K. Quinn;W. Pratt
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DOI：
--
发表时间：
2017
期刊：
Conference on Computer Supported Cooperative Work
影响因子：
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作者：
Melissa Mazmanian;Simone Lanette
通讯作者：
Simone Lanette
支持慢性病儿童的发展：从合规到共享管理。
影响因子：
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作者：
G. Kieckhefer;C. Trahms
通讯作者：
C. Trahms
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DOI：
--
发表时间：
2010
期刊：
Care in Practice
影响因子：
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作者：
A. Mol;Ingunn Moser;J. Pols
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DOI：
--
发表时间：
2002
期刊：
Pediatric Rehabilitation
影响因子：
--
作者：
B. Young;M. Dixon;D. Heney
通讯作者：
D. Heney