A clinical behaviour checklist for children with learning disabilites
Research type
Research Study
Full title
A clinical checklist of causes of poor behavioural outcomes in children with moderate-profound intellectual disability and complex needs.
IRAS ID
307956
Contact name
Hayley Trower
Contact email
Sponsor organisation
University of Warwick
Duration of Study in the UK
1 years, 11 months, 30 days
Research summary
Children with intellectual disability (ID) often have complex clinical needs which puts them at high risk for behaviours such as self-injury, aggression, and destructive behaviour. Causes of these behaviours include pain and discomfort, anxiety, sleep problems, difficulty regulating emotions, sensitivity to sensory information, communication and learning, and parental wellbeing. At present, there is no established tool that ensures each of the common causes of behaviour are considered and reviewed regularly in children with moderate-profound ID and complex needs. We have therefore developed a checklist that parents/carers and clinicians can complete, which can be used to guide carers and professionals to consider whether additional support is required. The checklist can then be used over time to monitor causes and their ongoing impact.
In this research project, we will conduct a feasibility study to test the checklist’s acceptability and feasibility. We will recruit 10 community paediatricians and parents/carers of 70 children aged between 5 and 14 to participate in the study. Inclusion criteria for parents/carers include: a) having a child with a diagnosis of moderate-profound ID, and b) willingness to participate in the study. Inclusion criteria for paediatricians is a) have discussed the checklist with a participating parent in a clinic appointment, and b) willingness to participate in the study.
Parents/carers of participating children will be asked to complete a battery of questionnaires including the clinical behaviour checklist which can be completed online or in paper format. Two weeks later, parents/carers will be asked to complete the checklist for a second time, along with a feasibility questionnaire. In addition, a sub-group of 10 parents/carers and four community paediatricians will be invited to attend semi-structured interviews to explore the feasibility of the checklist. The data will be analysed and published quickly thereafter.The study is funded by Great Ormond Street Hospital Charity.
REC name
South Central - Hampshire A Research Ethics Committee
REC reference
22/SC/0460
Date of REC Opinion
12 Dec 2022
REC opinion
Favourable Opinion