Mapping and Evaluating Services for Children with Learning Disabilities and Behaviours that Challenge in England
| ISRCTN | ISRCTN50108527 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN50108527 |
| Secondary identifying numbers | CPMS 49890 |
- Submission date
- 26/07/2021
- Registration date
- 05/08/2021
- Last edited
- 16/01/2024
- Recruitment status
- No longer recruiting
- Overall study status
- Completed
- Condition category
- Mental and Behavioural Disorders
Plain English summary of protocol
Background and study aims
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 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 a learning disability and behaviours that challenge, and their families. We want to find out how these services are structured and organised (known as “service models”).
Who can participate?
Staff from eligible services can take part in the study. To be eligible to take part in the study, community-based services will need to be providing supports for children with learning disabilities and behaviours that challenge who are 0-17 years of age, or providing supports to this group of children as a clearly distinct care pathway (whilst also providing other services). Services will not be excluded if they also provide services to individuals 18+ years of age as well as within the 0-17 age range.
What does the study involve?
We aim to find all the community NHS/local authority services in England supporting children with learning disabilities and behaviours that challenge. We will contact service managers/lead clinicians at each service who will identify suitable staff members to complete an online survey and interview to collect information about the service. We will 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”.
What are the possible benefits and risks of participating?
There are no direct and immediate benefits to taking part in this study, but data from services will enable us to describe the current 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.
We are not aware of any risks related to taking part in this study.
Where is the study run from?
University of Warwick (UK)
When is the study starting and how long is it expected to run for?
From February 2021 to December 2021
Who is funding the study?
National Institute for Health Research Health Services and Delivery Research (UK)
Who is the main contact?
Trial manager, meldstudy@warwick.ac.uk
Contact information
Scientific
CEDAR
New Education Building
Westwood Campus
University of Warwick
Coventry
CV4 7AL
United Kingdom
 ORCID ID |
0000-0003-3466-9506 |
|---|---|
| Phone | +44 (0)7823 362152 |
| S.Flynn.1@warwick.ac.uk |
Scientific
CEDAR
New Education Building
Westwood Campus
University of Warwick
Coventry
CV4 7AL
United Kingdom
| ORCID ID |
0000-0002-0495-8270 |
|---|---|
| Phone | +44 (0)2476 522197 |
| R.Hastings@warwick.ac.uk |
Public
Room WE 1.41, New Education Building
Westwood Campus
University of Warwick
Coventry
CV4 7AL
United Kingdom
| meldstudy@warwick.ac.uk |
Study information
| Study design | Observational cross-sectional study |
|---|---|
| Primary study design | Observational |
| Secondary study design | Cross sectional study |
| Study setting(s) | Community |
| Study type | Treatment |
| Participant information sheet | Not available in web format, please use the contact details below to request a patient information sheet |
| Scientific title | Mapping Services for Children with Learning Disabilities and Behaviours that Challenge (MELD) |
| Study acronym | MELD |
| Study objectives | There will be at least two distinct service models for children and young people with intellectual disability and behaviours that challenge. |
| Ethics approval(s) | Approved 16/03/2021, University of Warwick Humanities and Social Science Research Ethics Committee (HSSREC)(University House, University of Warwick, Coventry, CV4 7AL; +44 (0)24 765 73123; hssrec@warwick.ac.uk) |
| Health condition(s) or problem(s) studied | Health services research, mental health, children with learning disabilities and behaviours that challenge |
| Intervention | This is a descriptive services-mapping study and does not include any specific intervention. The study team will contact service managers/lead clinicians at each service who will identify suitable staff members to complete an online survey and interview to collect information about the service. A combination of statistical methods and the expert views of family, carers, and professionals will be used to describe groups of similar services. |
| Intervention type | Other |
| Primary outcome measure | Key characteristics of services including size, staffing compliment, referral methods, and caseloads collected via online survey and interviews with staff members working in each service at a single timepoint |
| Secondary outcome measures | There are no secondary outcome measures |
| Overall study start date | 01/02/2021 |
| Completion date | 31/12/2021 |
Eligibility
| Participant type(s) | Health professional |
|---|---|
| Age group | Adult |
| Lower age limit | 18 Years |
| Sex | Both |
| Target number of participants | Planned Sample Size: 400; UK Sample Size: 400 |
| Total final enrolment | 161 |
| Key inclusion criteria | Services: 1. NHS, local authority or another (e.g. private or charity) service commissioned by a CCG/local authority or another commissioner, or service where individual places are purchased by CCG/local authority or other commissioners 2. Providing supports for children with learning disabilities and behaviours that challenge who are aged 0-17 years, or providing supports to this group of children as a clearly distinct care pathway (whilst also providing other services). Services will not be excluded if they also provide services to individuals 18+ years of age as well as within the 0-17 age range. Staff: Employed at an eligible service. |
| Key exclusion criteria | Services: 1. Inpatient service 2. Service commissioned by non-CCG or local authority commissioner (e.g. solely a special school service) 3. Service that is not yet operational (has received no referrals at the time of data collection) Staff: Does not meet inclusion criteria |
| Date of first enrolment | 10/06/2021 |
| Date of final enrolment | 03/12/2021 |
Locations
Countries of recruitment
- England
- United Kingdom
Study participating centre
CV4 7AL
United Kingdom
Sponsor information
University/education
Research & Impact Services
University House
Coventry
CV4 8UW
England
United Kingdom
| Phone | +44 (0)24 765 75732 |
|---|---|
| sponsorship@warwick.ac.uk | |
| Website | https://warwick.ac.uk/ |
"ROR" |
https://ror.org/01a77tt86 |
Funders
Funder type
Government
Government organisation / National government
- Alternative name(s)
- National Institute for Health Research, NIHR Research, NIHRresearch, NIHR - National Institute for Health Research, NIHR (The National Institute for Health and Care Research), NIHR
- Location
- United Kingdom
Results and Publications
| Intention to publish date | 31/12/2023 |
|---|---|
| Individual participant data (IPD) Intention to share | No |
| IPD sharing plan summary | Data sharing statement to be made available at a later date |
| Publication and dissemination plan | Planned outputs from the MELD study will include open-access peer-reviewed journal articles in international academic journals, presentations at national and international academic conferences, and at public engagement/dissemination events. |
| IPD sharing plan | The data sharing plans for the current study are unknown and will be made available at a later date. |
Study outputs
| Output type | Details | Date created | Date added | Peer reviewed? | Patient-facing? |
|---|---|---|---|---|---|
| Protocol file | version 1.2 | 21/05/2021 | 04/08/2021 | No | No |
| Protocol file | version 1.3 | 22/09/2021 | 22/09/2021 | No | No |
| Protocol file | version 1.4 | 10/11/2021 | 29/11/2021 | No | No |
| Statistical Analysis Plan | version 1.1 | 16/12/2021 | 16/12/2022 | No | No |
| Results article | 04/12/2023 | 16/01/2024 | Yes | No |
Additional files
Editorial Notes
16/01/2024: Publication reference added.
10/07/2023: The intention to publish date was changed from 01/07/2023 to 31/12/2023.
19/12/2022: The public contact has been added.
16/12/2022: The following changes have been made:
1. SAP file uploaded.
2. The participant type has been changed from 'Patient' to 'Health professional'.
3. The final enrolment number has been added
4. The intention to publish date has been changed from 31/12/2022 to 01/07 and /2023.
29/11/2021: The protocol version 1.4 (not peer reviewed) has been uploaded as an additional file.
29/11/2021: The recruitment end date has been changed from 30/11/2021 to 03/12/2021.
22/09/2021: The protocol version 1.3 (not peer reviewed) has been uploaded as an additional file.
09/08/2021: Internal review.
26/07/2021: Trial’s existence confirmed by the National Institute for Health Research (NIHR).
