The MELD Study: Stage 2

  • Research type

    Research Study

  • Full title

    Mapping and Evaluating Services for Children with Learning Disabilities and Behaviours that Challenge (MELD): Stage 2

  • IRAS ID

    310149

  • Contact name

    Richard P. Hastings

  • Contact email

    r.hastings@warwick.ac.uk

  • Sponsor organisation

    University of Warwick

  • Duration of Study in the UK

    1 years, 9 months, 31 days

  • Research summary

    Background
    1 in 5 children with learning disabilities (LD) in the UK display behaviours that challenge (BtC). 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 LD and BtC are at risk of negative outcomes (like abusive care), their families are more likely to experience stress, and their care is costly for services. National Institute of Health and Care Excellence (NICE) have found little research about how best to design and deliver health and care services to these children.

    Aims
    This research is about community-based services across England that support children with a LD and BtC, and their families. We want to find out if the way that services are structured and organised (known as “service models”) has any effect on the outcomes of children with LD and BtC and their families, and what their experiences of services are.

    Design/methods
    Families of 234 children newly referred to 15 BtC services in England will complete questionnaires when they are referred and again after 12 months. We will gather detailed information about each service (like how many children they see, and estimate costs). We will interview children (using special techniques), families, and staff in some services about their experiences receiving and delivering care, and about how services work with children with LD and/or families to design or improve services together.

    Patient/public involvement
    Family carers have been working with us for 5+ years to tell us how services can be better for children with LD and BtC. Their ideas have sparked this research. We will work with an advisory group of families throughout the research to make key decisions and work together to think about what the findings mean.

  • REC name

    London - City & East Research Ethics Committee

  • REC reference

    22/PR/0389

  • Date of REC Opinion

    19 Apr 2022

  • REC opinion

    Favourable Opinion