Ask to take part

Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.

Contact Information:

Dr Samantha Flynn
+44 (0)7823 362152
MELDstudy@warwick.ac.uk


Mr Nicholas Manktelow
+44 (0)7392125602
Nicholas.manktelow@warwick.ac.uk


Prof Richard Hastings
+44 (0)2476 522197
R.Hastings@warwick.ac.uk


More information about this study, what is involved and how to take part can be found on the study website.

Study Location:

Find another location


Questions to ask
Skip to Main Content
English | Cymraeg
Be Part of Research - Trial Details - Mapping and evaluating services for children with learning disabilities and behaviours that challenge
Back

Mapping and evaluating services for children with learning disabilities and behaviours that challenge

Recruiting

Open to: All Genders

Age: Child

$location.addressLine3

Medical Conditions

Children with learning disabilities and behaviours that challenge

This information is provided directly by researchers, and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.


1 in every 5 children with a learning disability in the UK displays 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 from being included in the community. Children with learning disabilities 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 Excellence (NICE) reviewed the evidence, they found little research about how best to design and deliver health and care services to these children. This research is about community-based services across England that support children with learning disabilities and behaviours that challenge, and their families. The researchers 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 learning disabilities and behaviours that challenge and their families. They also want to understand the experiences of children and families, and the ways that services for children with learning disabilities and behaviours that challenge work with families, carers, children and young people to develop services with them.

Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.  

The recruitment start and end dates are as follows:

01 Jul 2022 31 Jul 2025

Publications

2023 Other publications in https://pubmed.ncbi.nlm.nih.gov/38049861/ (added 05/12/2023)

The researchers will select 15 services (from five different service models identified in Stage 1 of the MELD project) to study in detail. They will ask families of 244 children newly referred to these services to complete questionnaires when they first come to the service and again after 12 months. They will gather detailed information about each service (like how many children they see in the year, and estimate costs), and they will ask people who are involved in the children’s care (but not employed by the service) how satisfied they are with the service. The researchers will also interview children (using special communication techniques), families, and staff in each service model about their experiences receiving and delivering care, as well as reviewing any relevant documents. Family carers and professionals in our advisory groups, as well as members of the study team, will help the researchers to select from all Stage 1 services or their own networks four examples of co-production; where services work with children with a learning disability and/or families to design or improve services together. The researchers will carry out additional interviews with children, family carers, and staff to find out how co-production is working, how much it costs, and will review any relevant documents (e.g., policies, if any).


Services from Stage 1 that are eligible and would be interested to take part. To be eligible, services must have been included in Stage 1 analysis and nothing significant has changed in their service model since the analysis. Services must have also been established for more than 1 year and have more than 10 children typically referred/re-referred over 6 months.
Family carers and children with learning disabilities and behaviours that challenge who have been referred/re-referred into the service, and are eligible to take part, will also be invited to take part in the current study. To be eligible, children must be aged 0-15 years of age and have a learning disability as defined administratively or otherwise by the service. The child must have been referred at least in part for support in relation to behaviours that challenge. Family carers must consent to take part in the research and they are able to complete the research in English.
Other professionals will also be invited to take part in the study. These professionals will include: health or social care/education staff who receive training or advice, or are involved in individual cases of children with learning disabilities and behaviours that challenge; commissioners of community services for these children; and staff (internal or external) who are involved in co-production in services.

You can take part if:



You may not be able to take part if:


The exclusion criteria for services are:1. Services that have been established for less than one year, and so have had little chance to become reasonably stable within the current study timeframe2. Services that have a typical referral/re-referral rate over 6 months of fewer than 10 children3. Services that indicate at Stage 1 of the MELD Study they would not wish to be contacted about involvement in Stage 24. Co-applicants Lovell and Liew’s services – to address potential conflicts of interest


Below are the locations for where you can take part in the trial. Please note that not all sites may be open.

There are no direct and immediate benefits to taking part in this study, but participation will enable the researchers to evaluate the different identified service models for children with learning disabilities and behaviours that challenge in England. This will contribute to the evidence base about community-based service provision for these children, which may inform developments in service provision across England. The researchers are not aware of any risks related to taking part in this study.

Mr Nicholas Manktelow
+44 (0)7392125602
Nicholas.manktelow@warwick.ac.uk


Dr Samantha Flynn
+44 (0)7823 362152
MELDstudy@warwick.ac.uk


Prof Richard Hastings
+44 (0)2476 522197
R.Hastings@warwick.ac.uk



More information about this study, what is involved and how to take part can be found on the study website.


The study is sponsored by University of Warwick and funded by NIHR Evaluation, Trials and Studies Co-ordinating Centre (NETSCC); Grant Codes: NIHR 129577.



We'd like your feedback

Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.


Is this study information helpful?

What will you do next?
Read full details for Trial ID: ISRCTN88920546

Or CPMS 52467

Last updated 13 May 2024

This page is to help you find out about a research study and if you may be able to take part

You can print or share the study information with your GP/healthcare provider or contact the research team directly.   

Back to the top