Mapping and Evaluating Services for Children with Learning Disabilities and Behaviours that Challenge (MELD)

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. Background

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.

Methods The research has 2 Stages each with 2 Work Packages (WPs).

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.

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.

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.

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. Impact

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