Title: Mapping and Evaluating Services for Children with Learning Disabilities and Behaviours that Challenge (MELD)
Funder: Department of Health and Social Care

Abstract: Aims _x000D_ This research is about community based services across England that support children with a learning disability and behaviours that challenge, and their families. We want to find out: how these services are structured and organised (i.e., “service models”), if some of these service models deliver more positive outcomes for children and their families, and how much it costs to deliver different service models._x000D_ _x000D_ Background_x000D_ 1 in every 5 children with a learning disability in the UK display behaviours that challenge. These are not a medical diagnosis, but are behaviours (like aggression or self-injury) that may cause harm to the child or other people or prevent the child being included in the community. Children with learning disability and behaviours that challenge are at risk of negative outcomes (like abusive care), their families are more likely to experience stress, and these children’s care is costly for services. When the National Institute of Health and Care Research reviewed the evidence, they found little research about how best to design and deliver health and care services to these children._x000D_ _x000D_ Design/methods_x000D_ Stage 1: we will find all the community NHS/local authority services in England supporting children with learning disabilities and behaviours that challenge. We will carry out an interview with people in each service to collect detailed information, and then use a combination of statistical methods and the expert views of family carers and professionals to describe groups of similar services. These similar groups will be our “service models”. We will also work with family carers and professionals to decide the best way to measure how these services might improve life for children and their families. _x000D_ _x000D_ Stage 2: we will select about 12 services (from perhaps 4-5 different service models) to study in detail. We will ask families of 234 children newly referred to these services to complete questionnaires when they first come to the service and again after 12 months. We will gather detailed information about each service (like how many children they see in the year, and estimate costs). We will interview children (using special communication techniques), families, and staff in each service model we identify about their experiences receiving and delivering care. Family carers will help us to select from all Stage 1 services 4 examples of co-production; where services work with children with a learning disability and/or families to design or improve services together. We will carry out additional interviews with children, family carers, and staff to find out how co-production is working and how much it costs. _x000D_ _x000D_ Patient/public involvement _x000D_ Family carers have been working with us for 5+ years to tell us about how services can be better for children with learning disability and behaviours that challenge. Their ideas have sparked this research. We will work with an advisory group of families throughout the research to make key decisions, and give us feedback on what we are doing and what the research findings mean._x000D_ _x000D_ Sharing findings_x000D_ We will develop a tool including the questionnaires from the study so that services can continue to use these to monitor what they do. With family carers/professionals we will also produce a Guide and plan a peer review and support network based on the research findings so that people who pay for, deliver, and use services can make sure that services do better in future.

Lay abstract: The main aims are to map English NHS community services for children with learning disability (LD) and behaviours that challenge (BtC), describe service models, and evaluate outcomes and costs for these service models._x000D_ _x000D_ Background_x000D_ BtC result in substantial human (e.g., injury, family stress, exclusion, abusive care) and societal (e.g., high costs of services, family carers unable to participate in work) burden. NICE guidelines, overviews of evidence, and PPI consultation have found a lack of high quality evidence on the organisation and delivery of services. The proposed research is timely given the policy context (Transforming Care Policy Programme, NHS Long Term Plan), and evidence for services for children with LD is a priority._x000D_ _x000D_ Methods_x000D_ The research has 2 Stages each with 2 Work Packages (WPs). _x000D_ Stage 1, WP 1.1 – we will contact leads of all 48 Transforming Care Partnerships (or successor structures) in England for initial information about community services for children with LD and BtC in their region, then carry out teleconference interviews with a manager and lead clinician from all identified services to gather information about each service’s structure and functions. We estimate 200 services in England. Latent Class Analysis combined with stakeholder consultation will define distinct service models._x000D_ Stage 1, WP 1.2 – in parallel with WP 1.1 with 2 PPI groups (family carers, professionals/commissioners), we will establish an outcome measures package that is feasible to use in child LD BtC services and in WP 2.1._x000D_ Stage 2, WP 2.1 – estimating that 4-5 service models will be identified, we will recruit 12 services representing these models and 234 children and carers to take part in an observational study. Outcome measures (WP 1.2) assessing child BtC, child QoL and adaptive skills, family carer well-being, services received, and family carer experience and satisfaction and will be completed at baseline (referral or re-referral to the service) and 12 month follow-up. Statistical analyses will examine 12 month outcomes across service models, accounting for baseline scores and potential confounders or other key factors (informed by stakeholder consultation). Health economic analyses will examine the costs of each service model and cost effectiveness._x000D_ Stage 2, WP 2.2 – Using a multiple case study design approach, we will select 1 service of each service model type within which to gather data through interviews (per case study) with 4-5 children with LD, 4-5 family carers, 2-3 staff, and the key commissioner. With PPI input, we will also select 4 case studies to examine coproduction of services with children and/or family carers; again interviewing children, family carers, and staff. Cross-case comparison and synthesis with documentary evidence about each service/coproduction model (and synthesis with quantitative data about each service from WP 1.1) will be used to examine experiences, perceptions and processes._x000D_ _x000D_ Impact_x000D_ With family carer and professionals/commissioners PPI groups, we will: co-produce a guide for commissioners drawing on all project evidence and distribute widely through policy and practice partners; develop an outcomes package (WP 1.2, and methods for involving children – WP 2.2) with practical guidance for use within services; and co-design a national Peer Review and Evaluation Network for services for children with LD and BtC, informed by the project findings and outputs, to support quality improvement

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH