Affiliation:
1. Department of Medicine, Division of Neurology The University of British Columbia Vancouver British Columbia Canada
2. British Columbia Children & Women's Hospital Vancouver British Columbia Canada
Abstract
AbstractBackgroundSocial 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.ObjectiveIn 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.DesignWe 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.FindingsEight 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.ConclusionsThere 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.Patient or Public ContributionSix 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.