Title: Online Support and Intervention (OSI) for children with selective mutism
Funder: Health Education England

Abstract: BackgroundSelective Mutism (SM) is a pervasive anxiety disorder which stops a person from speaking in situations where they are expected to speak (e.g. school). It typically starts between 2-5 years and affects just under 1% of children under 8 years. Without early treatment, it can persist into adulthood affecting mental health and employment. Currently in the UK many children with SM do not access interventions through the NHS or Local Authority (LA) due to a lack of SM specialists and it is not clear what usual treatment is for those who do.A potential solution to improve access to treatment is to develop an online intervention with a manual and training package for widespread dissemination. In a recent meta-analysis, I found combined systems and behavioural SM interventions involving parents and school were effective. A therapist-led Online Support and Intervention (OSI) Programme already exists for other anxiety disorders in children using a similar approach. Can an adapted version of this programme improve speaking behaviour and reduce anxiety for children with SM? AimTo adapt and test the feasibility and acceptability of the new online intervention for children (3-12 years) with SM by using a single-arm study design, and gather information to prepare for a subsequent randomised controlled trial (RCT). Objectives and MethodsThe objectives will be achieved through 3 work packages (WP). Adapt online intervention with stakeholders and create a manual and therapist training package. Method (WP1): Experience Based Co-Design (EBCD) including stakeholders to adapt the OSI programme to suit children (3-12 years) with SM. (month 1-21) Test the feasibility and acceptability of the new intervention and outcome measures used; and gain a signal of efficacy for improving speaking behaviour and reducing anxiety to inform future RCT. Method (WP2a): A single-arm feasibility study of the new SM intervention (n = 36) including assessments of speaking and anxiety outcomes to explore signals of efficacy. Feasibility outcomes: recruitment, retention, therapist training, treatment fidelity (of parents, therapist and school staff). Acceptability outcomes: parents, clinicians and school staff satisfaction ratings of the intervention, study procedures and outcome measures (speaking behaviour, anxiety and health economics). (month 16-38) Interview stakeholders at post-intervention to understand experiences of using the new intervention.Method (WP2b): Critical Incident Technique framework to interview parents, children, school staff, and therapists (5 per group) to explore barriers, solutions and facilitators of the intervention process. (month 27-40) Define Treatment as Usual (TAU) for children with SM (3-12 years) in the UK to prepare for a future RCT. Method (WP3): National online survey of SLTs and psychological therapists working in the NHS or LA (n = 150). (month 1-10) Impact and dissemination Better understanding of TAU, barriers and facilitators of online SM intervention in NHS and LA Services. Stakeholder co-designed prototype of new online SM intervention, with manual and training package for therapists ready for further testing in an RCT. Findings shared through social media, SM organisations (SMIRA & ISpeak), EBCD celebration event, presentations at conferences & professional meetings, and publications in journals.

Lay abstract: Background to the researchSelective Mutism (SM) is a type of anxiety problem that stops a person from speaking in situations where they are expected to speak (e.g. school). SM often starts between 2 and 5 years and occurs in just under 1% of children under 8 years. It has negative effects on children's learning and friendships. Without early specialist treatment, SM can continue in adulthood. Adults with SM can have difficulties finding jobs and often develop other mental health problems. If the right treatment is provided early on it can improve speaking, reduce anxiety, and enable most children with SM to recover. However, in the UK most children with SM do not access treatment from the NHS or local authority because there are few SM specialists available. Also, it is unclear what treatment children receive when services do provide support, and whether children are offered treatments that are known to work. Behavioural treatments use strategies to make talking in front of others easier in small steps. Research has shown that parents and teachers can successfully be taught these strategies to use with their children. One way to improve access to this sort of help is through an online intervention for parents and teachers, with support from a therapist. An Online Support and Intervention (OSI) programme for anxiety disorders exists but it has not been developed for or tested with children with SM.Aim of the ResearchI will work with children and adults with SM, parents, school staff, and therapists to make changes to an existing online programme for child anxiety disorders to specifically suit children (aged 3-12 years) with SM. The project will then test the new programme and answer the following questions: Are the programme and the study methods acceptable and practical for parents, teachers, and therapists? Among children who participate in the programme, does their talking improve in different situations and is their anxiety reduced? Is it worthwhile to do a larger study in the future to test if this programme works in comparison to what children with SM currently receive via the NHS or Local Authority?Design and Methods UsedTo conduct this project I will: Talk to individuals or small groups of children and adults with SM, parents, school staff, and therapists about their experiences of SM treatments and the changes that need to be made to the existing online intervention to suit children with SM, their families, and teachers. Make the changes suggested from the discussions to create the new online intervention. Test the new intervention with at least 36 children with SM (aged 3-12 years) to see how well it works for them, their family, and professionals who support them. Use an online survey for therapists (speech and language therapists, psychological therapists) across the UK in order to understand how they currently support and treat children (up to 12 years) with SM. This information will be used to help design future studies to compare SM interventions.Patient and Public InvolvementThe project has been and will continue to be supported by a steering group consisting of parents, adults with SM, teaching staff, and therapists. Three of the members are heavily involved in leading SM charity/organisations in the UK. DisseminationThe Steering Group will help share information about the project through community, charity, and professional events and meetings.Information and updates during the project will be shared on a website and social media to make it easily accessible to the public and those involved in the project.Results of the project will be presented in research journals and at professional events.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH