Young people, mental health practitioners and researchers co-produce a Transition Preparation Programme to improve outcomes and experience for young people leaving Child and Adolescent Mental Health Services (CAMHS)

Abstract

BackgroundIn the UK young people attending child and adolescent mental health services (CAMHS) are required to move on, either through discharge or referral to an adult service, at age 17/18, a period of increased risk for onset of mental health problems and other complex psychosocial and physical changes. CAMHS transitions are often poorly managed with negative outcomes for young people. Better preparation may improve outcomes and experience. This study aimed to co-produce, with young people who had transitioned or were facing transition from CAMHS, a CAMHS Transition Preparation Programme (TPP), deliverable in routine NHS settings.MethodsEighteen young people, aged 17–22, from three UK National Health Service (NHS) mental health foundation trusts participated in creative, participatory research workshops. Seven parents completed short questionnaires. Thirty clinical staff from two trusts took part in workshops to ensure deliverability of young people’s ideas. Young people were offered co-research opportunities.ResultsMost young people felt anxious, fearful and uncertain on leaving CAMHS and perceived mental health services as uncaring. Participants outlined transition procedures and drafted a range of preparation activities, centred around dedicated Transition Peer Support and a transition booklet, which should be offered to all CAMHS leavers, irrespective of discharge or transfer to an adult service. Preparation should aim to build confidence to help young people take responsibility for themselves and flourish in the adult world: coping or getting through it was not enough. Some clinicians also felt anxious at transition and recognised the potential impact on young people of poor communication and lack of understanding between services. Parents would appreciate help to support their offspring during the transition period. Clinicians cited lack of funding and inflexible NHS procedures and policies as potential barriers to the implementation of young people’s ideas. Nine young people took up co-research opportunities.ConclusionsMental health services underestimate the anxiety of CAMHS leavers. Young people have clear ideas about the preparation they require to leave CAMHS with the confidence to take responsibility for their own health care. Close collaboration of NHS staff and researchers facilitates the implementation of research findings.

Review: Transition from children's to adult services: a review of guidelines and protocols for young people with attention deficit hyperactivity disorder in England

“…() highlight the lack of local transition protocols and inadequate information sharing between child and adult services. Others have also underlined information sharing as a barrier to transition with clinicians citing insufficient information, poor communication and a lack of understanding between services (Dunn, ). Both papers by Young et al.…”

“…Information is key for transition; Hall et al (2015) highlight the lack of local transition protocols and inadequate information sharing between child and adult services. Others have also underlined information sharing as a barrier to transition with clinicians citing insufficient information, poor communication and a lack of understanding between services (Dunn, 2017). Both papers by Young et al (2011Young et al ( , 2016 recommend that clear transition protocols between services are best developed locally, which outline timelines and responsibilities for transition, and describe pathways for those not accepted by adult mental health services, those who do not transition and those that reenter services as an adult with ADHD (Young et al, 2016).…”

What is the Co-Creation of New Knowledge? A Content Analysis and Proposed Definition for Health Interventions

“…Collaboration represented by the prefix "co" implying partnership and equality Union/collaboration of stakeholders (researchers and non-researchers) [83,84];"mutual knowledge exchange" [44]; "common understanding" [66]; shared vision and decision-making; meaningful engagement with participants [47,62]; equal voice and a collective vision [54,60] Activity Ideation "generate" [18,83], "explore" [85]; "brainstorm ideas" [49], "provoke discussion" [44,78]; reflect on how to meet community needs, solve problems and improve service delivery [58,61,62,86,87] Activity Designing taking of ideas (generated in the co-ideation phase); planning of the production of concrete outcomes (products, services or programs) [41,66] Activity Implementing participation of stakeholders in the delivery of services and programs [42] Activity Evaluating usability testing of prototypes and products [47] and state actors and the public to assess the quality of public services [70,86]; provide constructive feedback on services, interventions or products to researchers [56]; feedback may be collected through the administration of pre-and post-initiative questionnaires or engagement in focus groups [53,59]; feedback is collected and used to improve services [56]…”

Group based video-conferencing for adults with depression: findings from a user-led qualitative data analysis using participatory theme elicitation

“…One study of marginalised women in Canada developed a five step approach to group based participatory analysis [27] and noted that successful participatory approaches should be group oriented, engaging and facilitate user understanding. More recently, a study by Dunn [28] provided young people the opportunity to be involved in data synthesis as project co-researchers. As part of this work, they completed drawings, posters, maps and time-lines and attended a one-day workshop to generate recommendations for the programme.…”