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

儿童慢性疾病正在增加，对儿童的生活产生深远影响，需要长期护理，并在情感上影响他们。 研究表明，当孩子们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，也不会那么焦虑和不快乐。 然而，尽管有这些好处，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其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，以及癌症儿童在护理中与医生合作的方式。 为此，研究团队将首先在临床访视期间观察一些患者、家长和医生，并在访视之外与他们进行访谈，以了解所涉及的问题。 根据临床观察和访谈的结果，研究人员将与儿童和护理人员合作，制定一系列系统的想法，帮助解决这些挑战，提高儿童积极参与护理和管理自己的需求和感受的能力。 虽然这项工作将主要针对儿童和癌症，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需求的人群。 此外，这项研究将增加我们对如何与儿童一起设计和为儿童设计的知识，主要的理论和经验推动力将是增加在肿瘤护理中从非专业和儿童角度共享信息的理解和能力;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够表达自己的需要和状态，以及理解和采取行动的健康信息。 这项工作将分两个主要阶段进行，重点是接受骨髓移植的儿童癌症患者，这给儿童和父母带来了巨大的护理负担和痛苦。 在第一阶段，研究小组将观察一些门诊病人，重点关注孩子们对他们收到的信息的理解和反应，以及他们分享自己情绪和身体状态的方式。 研究人员将进行一系列平行访谈，重点关注父母、儿科肿瘤学家和心理学家在与儿童患者合作时的做法：临床医生和护理人员如何决定分享什么，何时以及如何分享健康信息。 综合这些数据将导致对儿科信息共享的障碍和实践的丰富描述，这将为第2阶段的研究提供关于设计工具以支持这种信息共享的信息。 在第二阶段，该团队将举办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。早期的研讨会将探索原型设计使用漫画般的草图/故事板的方法，既验证了用户体验设计和熟悉和儿童访问。 在这些讲习班中，儿童将被要求创造人物和故事，代表他们自己的挑战和想法，围绕沟通和管理他们的疾病，并提出想法，这将有助于他们，集思广益，并与其他参与者一起发展的想法。 该团队将与儿童心理学家合作，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，他们将在以后的研讨会上向参与者展示原型，作为参与者和研究人员可以使用的具体示例，以提高他们对设计支持儿科沟通和信息共享的此类工具的要求的理解。

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.