PDF(Pubmed)
Abstract：
OBJECTIVE: The study aimed to characterize the experiences of primary caregivers of children with medical complexity (CMC) in engaging with other members of the child\'s caregiving network, thereby informing the design of health information technology (IT) for the caregiving network. Caregiving networks include friends, family, community members, and other trusted individuals who provide resources, information, health, or childcare.
METHODS: We performed a secondary analysis of two qualitative studies. Primary studies conducted semi-structured interviews (n = 50) with family caregivers of CMC. Interviews were held in the Midwest (n = 30) and the mid-Atlantic region (n = 20). Interviews were transcribed verbatim for thematic analysis. Emergent themes were mapped to implications for the design of future health IT.
RESULTS: Thematic analysis identified 8 themes characterizing a wide range of primary caregivers\' experiences in constructing, managing, and ensuring high-quality care delivery across the caregiving network.
CONCLUSIONS: Findings evidence a critical need to create flexible and customizable tools designed to support hiring/training processes, coordinating daily care across the caregiving network, communicating changing needs and care updates across the caregiving network, and creating contingency plans for instances where caregivers are unavailable to provide care to the CMC. Informaticists should additionally design accessible platforms that allow primary caregivers to connect with and learn from other caregivers while minimizing exposure to sensitive or emotional content as indicated by the user.
CONCLUSIONS: This article contributes to the design of health IT for CMC caregiving networks by uncovering previously underrecognized needs and experiences of CMC primary caregivers and drawing direct connections to design implications.
METHODS: We performed a secondary analysis of two qualitative studies. Primary studies conducted semi-structured interviews (n = 50) with family caregivers of CMC. Interviews were held in the Midwest (n = 30) and the mid-Atlantic region (n = 20). Interviews were transcribed verbatim for thematic analysis. Emergent themes were mapped to implications for the design of future health IT.
RESULTS: Thematic analysis identified 8 themes characterizing a wide range of primary caregivers\' experiences in constructing, managing, and ensuring high-quality care delivery across the caregiving network.
CONCLUSIONS: Findings evidence a critical need to create flexible and customizable tools designed to support hiring/training processes, coordinating daily care across the caregiving network, communicating changing needs and care updates across the caregiving network, and creating contingency plans for instances where caregivers are unavailable to provide care to the CMC. Informaticists should additionally design accessible platforms that allow primary caregivers to connect with and learn from other caregivers while minimizing exposure to sensitive or emotional content as indicated by the user.
CONCLUSIONS: This article contributes to the design of health IT for CMC caregiving networks by uncovering previously underrecognized needs and experiences of CMC primary caregivers and drawing direct connections to design implications.
摘要：
目的：该研究旨在描述具有医疗复杂性（CMC）的儿童的主要看护人与儿童看护网络其他成员的互动体验，从而为护理网络的健康信息技术（IT）设计提供信息。照顾网络包括朋友，家庭,社区成员,和其他提供资源的值得信赖的个人，信息,健康,或儿童保育。
方法：我们对两项定性研究进行了二次分析。主要研究对CMC的家庭照顾者进行了半结构化访谈（n=50）。采访在中西部（n=30）和大西洋中部地区（n=20）进行。访谈被逐字转录，用于主题分析。新兴主题被映射到对未来健康IT设计的影响。
结果：主题分析确定了8个主题，这些主题表征了广泛的主要护理人员在构建，管理,并确保在整个护理网络中提供高质量的护理服务。
结论：研究结果表明，迫切需要创建灵活且可定制的工具，以支持招聘/培训流程，协调整个护理网络的日常护理，通过护理网络传达不断变化的需求和护理更新，并为护理人员无法向CMC提供护理的情况制定应急计划。信息员还应该设计可访问的平台，允许主要护理人员与其他护理人员联系并向其学习，同时尽量减少用户指示的敏感或情感内容的暴露。
结论：本文通过揭示CMC主要护理人员以前未被认可的需求和经验，并与设计含义直接联系，为CMC护理网络的健康IT设计做出了贡献。
方法：我们对两项定性研究进行了二次分析。主要研究对CMC的家庭照顾者进行了半结构化访谈（n=50）。采访在中西部（n=30）和大西洋中部地区（n=20）进行。访谈被逐字转录，用于主题分析。新兴主题被映射到对未来健康IT设计的影响。
结果：主题分析确定了8个主题，这些主题表征了广泛的主要护理人员在构建，管理,并确保在整个护理网络中提供高质量的护理服务。
结论：研究结果表明，迫切需要创建灵活且可定制的工具，以支持招聘/培训流程，协调整个护理网络的日常护理，通过护理网络传达不断变化的需求和护理更新，并为护理人员无法向CMC提供护理的情况制定应急计划。信息员还应该设计可访问的平台，允许主要护理人员与其他护理人员联系并向其学习，同时尽量减少用户指示的敏感或情感内容的暴露。
结论：本文通过揭示CMC主要护理人员以前未被认可的需求和经验，并与设计含义直接联系，为CMC护理网络的健康IT设计做出了贡献。
