Peer-reviewed article
Patient and public involvement and engagement in co-designing guidance for mental health professionals supporting neurodivergent children and young people in child and adolescent mental health services.
Williams N, Torr H, Taylor J, Tuomainen H ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This paper describes a co-design process involving patients, families, and professionals to develop guidance for mental health services supporting neurodivergent children. The work identifies barriers that neurodivergent children face when accessing mental health services, including communication challenges and limited clinician training. Through 12 months of participatory workshops and discussions with 60 contributors, the authors developed an open-access guidance resource with practical recommendations for improving service accessibility and inclusivity.
Key points
- Neurodivergent children and young people experience higher rates of mental health difficulties than neurotypical peers but face multiple barriers accessing child and adolescent mental health services
- Barriers include communication challenges, misunderstandings of neurodevelopmental differences versus mental health conditions, fragmented services, and limited clinician training in neurodiversity-affirming approaches
- A co-production methodology involving parents, carers, neurodivergent young people, and professionals from health, education, and social care was used over 12 months
- 60 PPIE and professional contributors participated in workshops and co-production activities
- The process resulted in an open-access practical guidance resource with recommendations for inclusive communication, service approaches, family participation, and service evaluation
Limitations
This paper describes a co-design and guidance development process rather than evaluating the effectiveness or impact of the resulting guidance on child outcomes or service accessibility. The document does not report on whether the guidance was subsequently implemented or what impact it had on neurodivergent children and young people accessing mental health services.
Abstract
Background Neurodivergent children and young people, including those with autism, attention-deficit/hyperactivity disorder and intellectual disability, experience higher rates of mental health difficulties than their neurotypical peers. Despite this increased need, many families encounter barriers when accessing child and adolescent mental health services (CAMHS). These barriers may occur across the service pathway, including referral, triage, assessment, treatment, and discharge. Patient and Public Involvement and Engagement, and professional contributions are essential to ensuring that CAMHS and research reflect the needs and priorities of those who use them. This paper describes a programme of PPIE and professional contribution activities undertaken to co-develop practical guidance for mental health professionals supporting neurodivergent children and young people. Methods We - a partnership between a PhD researcher, a parent with lived experience, a young person with lived experience and two PhD supervisors undertook a programme of PPIE activities, using a co-designed 'Co-production, Accessibility, Participation and Engagement' approach, over 12 months (December 2024 to November 2025). NW is a doctoral student, and HTr is a PPIE parent and lived experience partner. Together, we facilitated co-production activities with PPIE members, discussions at parent carer conferences, and with professional contributors to support inclusive participation and prioritise ideas. Parents, carers, neurodivergent children and young people, and professionals from health, education, and social care participated in workshops, co-production activities, and discussions exploring experiences of accessing CAMHS and identifying opportunities for service improvement. Insights shared during these activities informed the co-development of practical guidance for mental health professionals. Results A total of 60 PPIE and professional contributors took part in co-production activities. Contributors highlighted barriers including communication challenges, misunderstandings of neurodevelopmental differences vs. mental health conditions, fragmented services and limited clinician training in neurodiversity-affirming approaches. These insights informed the development of an open-access guidance resource outlining practical recommendations to support more inclusive communication, service approaches, family participation, and ongoing evaluation of service accessibility. Conclusions Collaborative involvement with lived-experience contributors enabled the development of practical guidance to improve accessibility and inclusivity within child and adolescent mental health pathways for neurodivergent children and young people. This work demonstrates how structured PPIE and professional contribution approaches can support the development of resources grounded in lived experience and contribute to ongoing discussions about inclusive child and adolescent mental health service design.