Talking with children and young people with 22q11DS about their mental health, behaviour, learning and communication.

BACKGROUND: 22q11DS11.2 deletion syndrome (22q11DS) is a complex multisystem syndrome characterized by physical abnormalities, psychiatric comorbidities and cognitive deficits. The views of children and young people (CYP) about the challenges associated with their mental health, behaviour, learning and communication difficulties have not been reported. The aim of this study was to address this gap and to understand whether they had help and support with these and their views of this. METHODS: A three-phase mixed-methods study was undertaken, involving interviews with CYP with 22q11DS, a follow-up survey for those aged 11-25 years and a stakeholder workshop at which CYP presented their views of living with 22q11DS to health professionals and parents. Interview transcripts were thematically analysed, and non-parametric statistics were used to analyse survey data. RESULTS: The interviews (n = 13) and survey (n = 32) indicated a mixed picture, with some CYP not reporting ongoing problems; others who had problems received help but a sizeable proportion had unmet needs and wanted to receive help. Two-thirds reported often experiencing negative feelings, and almost half had difficulties with social interactions. Family members were the main sources of support, with teaching assistants identified as an important support at school. CONCLUSIONS: The emotional impact of 22q11DS on CYP can be significant: They often do not understand the consequences of having 22q11DS and are frequently not given strategies to understand and manage their feelings, behaviour or problems. This leads to a range of emotions that manifest in different ways at home and at school. CYP are able to talk about the impact of different aspects of 22q11DS on them, facilitated by the use of creative methods, but they differ in how the condition affects them and their perceptions about that. It is imperative that CYP themselves are asked about their experiences, feelings and needs to ensure tailoring of interventions to their individual requirements.

A qualitative analysis of implementing shared decision making in Child and Adolescent Mental Health Services in the United Kingdom: Stages and facilitators.

OBJECTIVES: To explore the implementation of shared decision making (SDM) in Child and Adolescent Mental Health Services (CAMHS), and identify clinician-determined facilitators to SDM. METHODS: Professionals from four UK CAMHS tried a range of tools to support SDM. They reflected on their experiences using plan-do-study-act log books. A total of 23 professionals completed 307 logs, which were transcribed and analysed using Framework Analysis in Atlas.Ti. RESULTS: Three states of implementation (apprehension, feeling clunky, and integration) and three aspects of clinician behavior or approach (effort, trust, and flexibility) were identified. CONCLUSIONS: Implementation of SDM in CAMHS requires key positive clinician behaviors, including preparedness to put in effort, trust in young people, and use of the approach flexibly. PRACTICE IMPLICATIONS: Implementation of SDM in CAMHS is effortful, and while tools may help support SDM, clinicians need to be allowed to use the tools flexibly to allow them to move from a state of apprehension through a sense of feeling "clunky" to integration in practice.