Why this research is needed

Many research studies and policy documents conclude that families do not receive the support and services they need in the community to support their child with a learning disability. This is particularly true for those children with a learning disability who display challenging behaviours. There is no comprehensive list of all the services in England which support children with a learning disability and not much evidence about the difference that particular services make. This makes it hard for people who plan and pay for services to know what they should put in place.

Research study aims

This research study aims to fill that gap. The aim is to find out 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 services are structured and organised (“service models”),
• what difference they make to children and their families, (“outcomes”) and
• how much it costs to deliver different service models.

Background

1 in every 5 children with a learning disability in the UK display behaviours that challenge. Challenging behaviours are not a medical diagnosis, but are behaviours (like aggression or self-injury) that may harm the child or other people. They can also prevent children from accessing normal community activities.

Children with a learning disability and behaviours that challenge are at risk of negative experiences if they don’t get the support they need. Current 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.

What we will do

We will deliver the research in 2 stages.

Stage 1: Collecting information and identifying service models and outcomes

• We will find all the community NHS or local authority services in England supporting children with learning disabilities and behaviours that challenge.
• We will ask services to complete an online survey to provide us with information about their service. We will carry out an optional 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.

Stage 2: Looking in detail at what difference services make, how much they cost and how well they work with families

Observational Study

• We will systematically select three services from each of the five different service models to study in detail.
• We will ask families of 244 children receiving support from these services to complete questionnaires at a baseline point and again after 12 months.
• We will gather detailed information about each service (like how many children they see in the year, and the costs associated with delivering the service).

Qualitative Case Studies

• We will select one service from each service model to study in more detail. We will interview children (using special communication techniques), families, and staff in each of these services about their experiences of receiving and delivering care.

• We will also study in detail four examples of coproduction; where services work with children with a learning disability and/or families to design or improve services together. These may be services that took part in Stage 1 of the research, or other services. 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.

Co-production

Family carers have been working with us for 5+ years to tell us about how services can be better for children with a 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.

Sharing findings

We will develop a tool so that services can continue to monitor what they do.

With family carers/professionals we will

• Produce a Guide
• Plan a peer review and support network based on the research findings

We hope the results will mean that people who pay for, deliver, and use services can all make sure that services deliver better support to children with learning disabilities in future.

Who is involved?

NIHR: MELD Research Award Page

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