CRII: CHS: Empowering Pediatric Patients as Active Partners with Clinicians and Caregivers in Managing Their Chronic Conditions

CRII：CHS：让儿科患者成为临床医生和护理人员管理慢性病的积极合作伙伴

• 批准号: 1657411
• 负责人: Sun Young Park
• 金额: $ 17.5万
• 依托单位: Regents of the University of Michigan - Ann Arbor
• 依托单位国家: 美国
• 项目类别: Standard Grant
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-01 至 2021-08-31
• 项目状态: 已结题
• 来源: https://www.nsf.gov/awardsearch/showAward?AWD_ID=1657411&HistoricalAwards=false
• 关键词: CRII; CHS; Empowering; Pediatric; Patients

Chronic childhood illnesses are increasing and have a profound impact on children's lives, requiring long-term care and affecting them emotionally. Research suggests that when children act as partners with doctors and parents in the discussion and care of their conditions, they are better at following treatment plans as well as less anxious and unhappy. Despite these benefits, however, children's involvement in their care is generally poorly supported by current clinical practices, by parents, and by technologies designed to help manage health conditions. This project's goal is to better understand challenges centered on child patients, and the ways in which children with cancer do, and could, work with their doctors in their care. To do this, the research team will first observe a number of patients, parents, and doctors during clinical visits, and interview them outside of the visits to understand the issues involved. Based on findings from clinic observations and interviews, the researchers will then work with children and caregivers to develop a series of ideas for systems that help address those challenges and improve children's ability to actively participate in their care and manage their own needs and feelings about their condition. Although the work will be done primarily with children and in the context of cancer, many of the findings should transfer to other chronic conditions and populations who have trouble communicating their needs to clinicians. Further, the study will increase our knowledge of how to design with and for children.The main theoretical and empirical thrust will be to increase the understanding of and ability to share information from the lay and child perspectives in oncology care; in both cases, differences in power and ability are likely to hinder pediatric patients' effective information sharing and involvement. Ability is likely to be a particular a problem for children, who are less able than adults to both express their needs and state, and to understand and act on health information. The work will proceed in two main phases, focusing on pediatric patients with cancer who have had bone marrow transplantation, which imposes significant care burdens and distress on both children and parents. In phase 1, the research team will observe a number of outpatient visits, focusing on the children's comprehension and reaction to information they receive and the way they share their own emotional and physical state. The researchers will conduct a parallel set of interviews that focus on parents', pediatric oncologists' and psychologists' practices when working with child patients: how clinicians and caregivers decide what to share and when and how to share health information. Synthesizing these data will lead to a rich, descriptive account of the barriers and practices around pediatric information sharing that will inform the study in phase 2 around designing tools to support this information sharing. In phase 2, the team will host a series of participatory design workshops that include pediatric patients, their parents, clinicians, and members of the research team. Early workshops will explore prototype designs using a comic-like sketching/storyboard approach that is both validated in user experience design and familiar and accessible to children. In those workshops, children will be asked to create characters and stories that represent their own challenges and ideas around communicating and managing their illness, and suggest ideas that would help them, brainstorming and working with other participants to develop the ideas. Working with child psychologists, the team will analyze and use those outputs to design higher-fidelity prototypes of support tools. They will then present the prototypes back to the participants at later workshops as a concrete example that both participants and researchers can use to advance their understanding of requirements for designing such tools that support pediatric communication and information sharing.

儿童慢性疾病正在增加，并对儿童的生活产生深刻影响，需要长期护理，并影响他们的情感。研究表明，当孩子与医生和父母一起讨论和照顾他们的病情时，他们会更好地遵循治疗计划，并减少焦虑和不快乐。然而，尽管有这些好处，但目前的临床实践、父母和旨在帮助管理健康状况的技术对儿童参与护理的支持通常很差。该项目的目标是更好地了解以儿童患者为中心的挑战，以及癌症儿童如何与他们的医生合作护理他们。为此，研究小组将首先在临床访问期间观察一些患者、父母和医生，并在访问之外采访他们，以了解涉及的问题。根据临床观察和采访的结果，研究人员随后将与儿童和照顾者合作，为有助于应对这些挑战的系统开发一系列想法，并提高儿童积极参与护理并管理自己的需求和对自己病情的感受的能力。虽然这项工作将主要在儿童和癌症的背景下完成，但许多发现应该转移到其他慢性病和难以与临床医生沟通他们的需求的人群。此外，这项研究将增加我们关于如何与儿童一起设计和为儿童设计的知识。主要的理论和实证推动力将是增加对肿瘤护理中外行人和儿童角度的信息的理解和共享的能力；在这两种情况下，权力和能力的差异可能会阻碍儿科患者有效的信息共享和参与。儿童的能力可能是一个特别的问题，他们比成年人更不能表达自己的需求和状态，也不能理解健康信息并对其采取行动。这项工作将分两个主要阶段进行，重点是接受过骨髓移植的儿童癌症患者，这给孩子和父母带来了巨大的护理负担和痛苦。在第一阶段，研究团队将观察一些门诊就诊，重点是孩子们对他们收到的信息的理解和反应，以及他们分享自己的情绪和身体状态的方式。研究人员将进行一组平行的访谈，重点关注父母、儿科肿瘤学家和心理学家在处理儿童患者时的做法：临床医生和照顾者如何决定分享什么，何时以及如何分享健康信息。综合这些数据将导致对围绕儿科信息共享的障碍和实践的丰富、描述性的描述，这将为第二阶段的研究提供关于设计支持这种信息共享的工具的信息。在第二阶段，团队将主持一系列参与式设计研讨会，其中包括儿科患者、他们的父母、临床医生和研究团队成员。早期的研讨会将使用类似漫画的草图/故事板方法来探索原型设计，这种方法既在用户体验设计中得到验证，又为儿童所熟悉和理解。在这些研讨会上，孩子们将被要求创造人物和故事，代表他们自己在沟通和管理疾病方面的挑战和想法，并提出有助于他们的想法，集思广益，与其他参与者合作发展这些想法。与儿童心理学家合作，该团队将分析并使用这些输出来设计更高保真的支持工具原型。然后，他们将在后来的研讨会上将原型作为一个具体的例子返回给参与者，参与者和研究人员都可以利用这些例子来促进他们对设计支持儿科交流和信息共享的这种工具的要求的理解。

项目成果

Learning from Positive Adaptations of Pediatric Cancer Patients to Design Health Technologies

从小儿癌症患者的积极适应中学习设计健康技术

• DOI: 10.1145/3313831.3376397
• 发表时间: 2020
• 期刊: Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems
• 作者: Park, Sun Young;Seo, Woosuk;Berry, Andrew B.L.;Kim, Hyeryoung;Verma, Sanya;Choi, Sung Won;Buyuktur, Ayse G.
• 通讯作者: Buyuktur, Ayse G.

Balancing Tensions between Caregiving and Parenting Responsibilities in Pediatric Patient Care

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
• 发表时间: 2019
• 期刊: Proceedings of the ACM on Human-Computer Interaction
• 作者: Seo, Woosuk;Berry, Andrew B.L.;Bhagane, Prachi;Choi, Sung Won;Buyuktur, Ayse G.;Park, Sun Young
• 通讯作者: Park, Sun Young