Department of Medicine, Division of Neurology, The University of British Columbia, Vancouver, British Columbia, Canada.
British Columbia Children & Women's Hospital, Vancouver, British Columbia, Canada.
Health Expect. 2024 Feb;27(1):e13981. doi: 10.1111/hex.13981.
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.
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.
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.
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.
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.
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.
社交机器人是提高患有焦虑症的儿童和青少年生活质量的有前途的工具，应根据最终用户的优先级进行开发。然而，让年轻人参与以患者为中心的研究，特别是在技术和心理健康交叉领域的研究，在历史上一直受到限制。
在这项工作中，我们描述了与具有儿科焦虑症患者经历的专家在社交机器人研究计划中的合作。我们报告了患者顾问在共同创作过程中的经验，并确定了其他研究小组在涉及青年心理健康领域的技术开发中让最终用户参与的考虑因素。
我们使用三种不同的模式在三年内与具有儿科焦虑症患者经历的个人（目前、最近或从父母的角度）进行合作。两名最初的患者合作伙伴在项目开发过程中参与，八名合作伙伴作为研究开发和数据分析期间的顾问小组（“联盟”）的一部分参与，四名合作伙伴作为持续顾问以顾问身份参与。联盟成员完成了参与前期望调查和参与后经验调查。
来自一系列与焦虑相关的诊断群体的八名个人作为患者合作伙伴参与了联盟。成员是青少年（n=3）、22-26 岁的年轻人，他们在过去八年内在青年心理健康服务机构就诊过（n=3）或孩子目前患有焦虑症的父母（n=2）。收集了他们的沟通偏好、期望和参与原因。联盟就社交机器人主题的研讨会设计提供了具体和可操作的反馈，这些反馈被实施了。他们报告说他们的经历是积极的，并且得到了相当的补偿，但沟通和随着时间的推移的持续参与是挑战。讨论了与以患者为中心的大脑健康技术研究相关的伦理和语言问题。
在开发旨在支持儿童和青少年心理健康和生活质量的设备时，从患有精神疾病的年轻人和年轻人那里获得有意义的意见具有伦理必要性。
六名有儿科焦虑症患者经历的年轻人和两名父母参与了社交机器人研究计划的所有阶段的开发，以在社区环境中支持儿科心理健康。他们还在准备这份手稿的过程中提供了意见。
