Children with learning disabilities and behaviours that challenge Mental and Behavioural Disorders
Conditions
Interventions
In Work Package 2.1, the researchers will recruit 15 services representing five service models (as identified in Stage 1 of the MELD Study) and 244 children and carers to take part in an observational
Sponsors
University of Warwick
Eligibility
Sex/Gender
All
Age
0 Years to 15 Years
Inclusion criteria
Inclusion criteria: The inclusion criteria for services are: 1. They were a service included in the analysis for Stage 1 of the MELD study 2. Nothing significant has changed in their service model since the Stage 1 analysis The inclusion criteria for children referred/referred to services included in Stage 2 of the MELD Study are: 1. Child (0-15 years of age) has learning disabilities as defined administratively or otherwise by the service 2. Child has been referred at least in part for support in relation to behaviours that challenge (including those referred to the relevant learning disability/behaviours that challenge pathway in any broader service) 3. Child’s parental caregiver consents to take part in the research 4. Child’s parental caregiver is able to complete, by questionnaire or interview with a researcher, study outcome measures in English For the case studies, children and young people who will be interviewed will be between 6 and 15 years of age. Consent from their parental caregiver will be obtained before they take part.
Exclusion criteria
Exclusion criteria: 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 timeframe 2. Services that have a typical referral/re-referral rate over 6 months of fewer than 10 children 3. Services that indicate at Stage 1 of the MELD Study they would not wish to be contacted about involvement in Stage 2 4. Co-applicants Lovell and Liew’s services – to address potential conflicts of interest
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Child-related outcomes (all completed by family carers): Child behaviours that challenge measured using the Behaviour Problems Inventory Short Form (BPI-S) at baseline and 12 months post-referral | — |
Secondary
| Measure | Time frame |
|---|---|
| Child-related outcomes (all completed by family carers): 1. Child physical health is measured using the Children’s sleep habit questionnaire (CSHQ) and non-communicating children’s pain checklist – revised (NCCPC-R) at baseline and 12 months post-referral 2. Child mental health is measured using the Strengths and Difficulties Questionnaire (SDQ) at baseline and 12 months post-referral 3. Child quality of life is measured using the EQ-5D-Y Health Questionnaire at baseline and 12 months post-referral and either Paediatric Quality of Life Inventory (PedsQL) infant scales (only for children aged 0-24months) or Paediatric Quality of Life Inventory (PedsQL) Generic Core Scales (only for children aged 2+ years) at baseline and 12 months post-referral. 4. Child skills are measured using GO4KIDDS at baseline and 12 months post-referral. 5. Child services received are measured using the Client Service Receipt Inventory (CSRI) at baseline and 12 months post-referral Family carer related outcomes (all completed by family carers): 1. Family carer quality of life is measured using the EQ-5D-5L Health Questionnaire at baseline and 12 months post-referral 2. Family carer wellbeing is measured using Warwick Edinburgh Mental Wellbeing Scale (WEMWBS) at baseline and 12 months post-referral 3. Family carer services received are measured using Client service receipt inventory (CSRI) at baseline and 12 months post-referral 4. Family carer experience/satisfaction with service is measured using the Experience of service questionnaire (ESQ) satisfaction with care items at 12 months post-referral Service-level outcomes (completed by services using standard proforma): 1. ‘Reach’ to population at 12 months post-referral 2. Timings of service delivery (e.g., mean time to start support from referral, and length of time to discharge) at 12 months post-referral 3. Service take-up at 12 months post-referral 4. Costs at service level at 12 months post-referral Other-stakeholder-related outcomes ( | — |
Countries
England, United Kingdom
Outcome results
None listed