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Abstract：
BACKGROUND: Social robots are promising tools to improve the quality of life of children and youth living with anxiety and should be developed based on the priorities of end users. However, pathways to include young people in patient-oriented research, particularly in the overlap between technology and mental health, have been historically limited.
OBJECTIVE: In this work, we describe engagement with experts with lived experiences of paediatric anxiety in a social robotics research programme. We report the experiences of patient advisors in a co-creation process and identify considerations for other research groups looking to involve end users in technology development in the field of youth mental health.
METHODS: We engaged individuals with a lived experience of paediatric anxiety (current, recent past, or from a parent perspective) using three different models over the course of three years. Two initial patient partners were involved during project development, eight were engaged as part of an advisory panel (\'the League\') during study development and data analysis and four contributed as ongoing collaborators in an advisory role. League members completed a preparticipation expectation survey and a postparticipation experience survey.
RESULTS: Eight individuals from a range of anxiety-related diagnostic groups participated in the League as patient partners. Members were teenagers (n = 3), young adults aged 22-26 years who had connected with a youth mental health service as children within the past eight years (n = 3) or parents of children presently living with anxiety (n = 2). Preferred methods of communication, expectations and reasons for participating were collected. The League provided specific and actionable feedback on the design of workshops on the topic of social robotics, which was implemented. They reported that their experiences were positive and fairly compensated, but communication and sustained engagement over time were challenges. Issues of ethics and language related to patient-centred brain health technology research are discussed.
CONCLUSIONS: There is an ethical imperative to meaningfully incorporate the voices of youth and young adults with psychiatric conditions in the development of devices intended to support their mental health and quality of life.
UNASSIGNED: Six young people and two parents with lived experiences of paediatric anxiety participated in all stages of developing a research programme on social robotics to support paediatric mental health in a community context. They also provided input during the preparation of this manuscript.
OBJECTIVE: In this work, we describe engagement with experts with lived experiences of paediatric anxiety in a social robotics research programme. We report the experiences of patient advisors in a co-creation process and identify considerations for other research groups looking to involve end users in technology development in the field of youth mental health.
METHODS: We engaged individuals with a lived experience of paediatric anxiety (current, recent past, or from a parent perspective) using three different models over the course of three years. Two initial patient partners were involved during project development, eight were engaged as part of an advisory panel (\'the League\') during study development and data analysis and four contributed as ongoing collaborators in an advisory role. League members completed a preparticipation expectation survey and a postparticipation experience survey.
RESULTS: Eight individuals from a range of anxiety-related diagnostic groups participated in the League as patient partners. Members were teenagers (n = 3), young adults aged 22-26 years who had connected with a youth mental health service as children within the past eight years (n = 3) or parents of children presently living with anxiety (n = 2). Preferred methods of communication, expectations and reasons for participating were collected. The League provided specific and actionable feedback on the design of workshops on the topic of social robotics, which was implemented. They reported that their experiences were positive and fairly compensated, but communication and sustained engagement over time were challenges. Issues of ethics and language related to patient-centred brain health technology research are discussed.
CONCLUSIONS: There is an ethical imperative to meaningfully incorporate the voices of youth and young adults with psychiatric conditions in the development of devices intended to support their mental health and quality of life.
UNASSIGNED: Six young people and two parents with lived experiences of paediatric anxiety participated in all stages of developing a research programme on social robotics to support paediatric mental health in a community context. They also provided input during the preparation of this manuscript.
摘要：
背景：社交机器人是有前途的工具，可以改善患有焦虑症的儿童和青少年的生活质量，应根据最终用户的优先事项进行开发。然而,将年轻人纳入面向患者的研究的途径，特别是技术和心理健康之间的重叠，在历史上是有限的。
目的：在这项工作中，我们描述了在社交机器人研究计划中与有儿科焦虑经历的专家的互动。我们报告了患者顾问在共同创造过程中的经验，并确定了其他研究小组希望让最终用户参与青年心理健康领域的技术开发的考虑因素。
方法：我们聘请了有儿科焦虑生活经历的个人(目前，最近的过去,或从父母的角度)在三年的时间里使用三种不同的模型。两个最初的患者合作伙伴参与了项目开发，在研究开发和数据分析期间，有8人作为咨询小组(“联盟”)的成员参与，有4人作为顾问角色的持续合作者做出了贡献。团员完成了参与前期望调查和参与后经验调查。
结果：来自一系列焦虑相关诊断组的8个人作为患者伙伴参加了联盟。成员是青少年（n=3），22-26岁的年轻人，在过去八年内（n=3）或目前患有焦虑症的儿童的父母（n=2）与青年心理健康服务有联系。首选的沟通方法，收集了参与的期望和原因。联盟就社交机器人主题研讨会的设计提供了具体和可操作的反馈，这是实施的。他们报告说，他们的经历是积极的，得到了公平的补偿，但随着时间的推移，沟通和持续参与是挑战。讨论了与以患者为中心的脑健康技术研究有关的道德和语言问题。
结论：在开发旨在支持其心理健康和生活质量的设备时，有意义地将年轻人和患有精神疾病的年轻人的声音纳入道德要求。
■六个有儿科焦虑经历的年轻人和两个父母参与了开发社会机器人研究计划的所有阶段，以支持社区背景下的儿科心理健康。他们还在编写本手稿期间提供了投入。
目的：在这项工作中，我们描述了在社交机器人研究计划中与有儿科焦虑经历的专家的互动。我们报告了患者顾问在共同创造过程中的经验，并确定了其他研究小组希望让最终用户参与青年心理健康领域的技术开发的考虑因素。
方法：我们聘请了有儿科焦虑生活经历的个人(目前，最近的过去,或从父母的角度)在三年的时间里使用三种不同的模型。两个最初的患者合作伙伴参与了项目开发，在研究开发和数据分析期间，有8人作为咨询小组(“联盟”)的成员参与，有4人作为顾问角色的持续合作者做出了贡献。团员完成了参与前期望调查和参与后经验调查。
结果：来自一系列焦虑相关诊断组的8个人作为患者伙伴参加了联盟。成员是青少年（n=3），22-26岁的年轻人，在过去八年内（n=3）或目前患有焦虑症的儿童的父母（n=2）与青年心理健康服务有联系。首选的沟通方法，收集了参与的期望和原因。联盟就社交机器人主题研讨会的设计提供了具体和可操作的反馈，这是实施的。他们报告说，他们的经历是积极的，得到了公平的补偿，但随着时间的推移，沟通和持续参与是挑战。讨论了与以患者为中心的脑健康技术研究有关的道德和语言问题。
结论：在开发旨在支持其心理健康和生活质量的设备时，有意义地将年轻人和患有精神疾病的年轻人的声音纳入道德要求。
■六个有儿科焦虑经历的年轻人和两个父母参与了开发社会机器人研究计划的所有阶段，以支持社区背景下的儿科心理健康。他们还在编写本手稿期间提供了投入。
