背景:小儿风湿病是一个术语,包括影响不同器官和系统的80多种疾病。已知患有风湿病慢性疾病的儿童和年轻人患有高水平的心理健康问题,因此有健康不良的风险。临床心理学家可以帮助儿童和年轻人管理生活在这些条件之一的日常困难;然而,英国的儿科心理学家不足。我们迫切需要考虑其他早期提供的方式,必要的支持,以改善他们目前的福祉。这样做的一种方法是使父母和照顾者能够获得更多的答案,他们的孩子和年轻人需要在医院预约之间进一步支持他们。
目的:这项共同设计的概念验证研究的目的是设计,发展,并测试聊天机器人干预措施,以支持患有风湿病的儿童和年轻人的父母和照顾者。
方法:本研究将探讨患有风湿病的儿童和年轻人的需求和观点,他们的兄弟姐妹,父母,和照顾者,以及从事儿科风湿病的医疗保健专业人员。我们将询问焦点小组中的大约100名参与者,他们认为当前的临床护理存在差距,以及他们有什么改进的想法。然后,基于创意经验的联合设计研讨会将决定在通知外观的同时进一步发展的首要任务,功能,和实际交付聊天机器人干预。完成最小可行产品后,大约100名父母和照顾者将在迭代冲刺方法中对聊天机器人干预进行用户测试,以确定其作为支持父母的机制的价值。
结果:共有73名儿童,年轻人,父母,看护者,到目前为止,医疗保健专业人员已经参加了这项研究,始于2023年11月。预计研究完成日期为2026年4月。数据分析预计将于2026年1月完成,结果将于2026年4月公布。
结论:这项研究将提供可及性的证据,可接受性,以及为患有风湿病的儿童和年轻人的父母和照顾者提供聊天机器人干预的可用性。如果证明有用,这可能会导致对首批聊天机器人干预措施之一进行未来的有效性试验,以便在医疗保健服务中为患有慢性健康状况的儿童的父母和照顾者提供针对性和用户建议的支持.这项研究是独一无二的,因为它将详细说明儿童的需求和愿望,年轻人,兄弟姐妹,父母,和护理人员改善目前对患有小儿风湿病的家庭的支持。它将在整个英国针对疾病轨迹的所有阶段的所有小儿风湿病进行。
■DERR1-10.2196/57238。
Pediatric rheumatology is a term that encompasses over 80 conditions affecting different organs and systems. Children and young people with rheumatological chronic conditions are known to have high levels of mental health problems and therefore are at risk of poor health outcomes. Clinical psychologists can help children and young people manage the daily difficulties of living with one of these conditions; however, there are insufficient pediatric psychologists in the United Kingdom. We urgently need to consider other ways of providing early, essential support to improve their current well-being. One way of doing this is to empower parents and caregivers to have more of the answers that their children and young people need to support them further between their hospital appointments.
The objective of this co-designed proof-of-concept study is to design, develop, and test a chatbot intervention to support parents and caregivers of children and young people with rheumatological conditions.
This study will explore the needs and views of children and young people with rheumatological conditions, their siblings, parents, and caregivers, as well as health care professionals working in pediatric rheumatology. We will ask approximately 100 participants in focus groups where they think the gaps are in current clinical care and what ideas they have for improving upon them. Creative experience-based co-design workshops will then decide upon top priorities to develop further while informing the appearance, functionality, and practical delivery of a chatbot intervention. Upon completion of a minimum viable product, approximately 100 parents and caregivers will user-test the chatbot intervention in an iterative sprint methodology to determine its worth as a mechanism for support for parents.
A total of 73 children, young people, parents, caregivers, and health care professionals have so far been enrolled in the study, which began in November 2023. The anticipated completion date of the study is April 2026. The data analysis is expected to be completed in January 2026, with the results being published in April 2026.
This study will provide evidence on the accessibility, acceptability, and usability of a chatbot intervention for parents and caregivers of children and young people with rheumatological conditions. If proven useful, it could lead to a future efficacy trial of one of the first chatbot interventions to provide targeted and user-suggested support for parents and caregivers of children with chronic health conditions in health care services. This study is unique in that it will detail the needs and wants of children, young people, siblings, parents, and caregivers to improve the current support given to families living with pediatric rheumatological conditions. It will be conducted across the whole of the United Kingdom for all pediatric rheumatological conditions at all stages of the disease trajectory.
DERR1-10.2196/57238.