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Mapping and identifying service models for community-based services for children with intellectual disabilities and behaviours that challenge in England

Taylor, Emma
Thompson, Paul
Lovell, Mark
Sutton, Kate
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Affiliation
University of Warwick; Cardiff University; Tizard Centre, University of Kent; Evelina London Children’s Hospital, Westminster Bridge Rd, London; South London and Maudsley NHS Foundation Trust; University of Birmingham; Tees, Esk and Wear Valleys, NHS Foundation Trust; NHS England; University of Oxford; Coventry and Warwickshire Partnership NHS Trust; Herefordshire and Worcestershire Health and Care NHS Trust; The Challenging Behaviour Foundation, Chatham, Kent;
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Publication date
2023-12-04
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Abstract
Background One in five children with an intellectual disability in the UK display behaviours that challenge. Despite associated impacts on the children themselves, their families, and services, little research has been published about how best to design, organise, and deliver health and care services to these children. The purpose of this study was to describe how services are structured and organised (“service models”) in England for community-based health and care services for children with intellectual disability who display behaviours that challenge. Methods Survey data about services were collected from 161 eligible community-based services in England. Staff from 60 of these services were also interviewed. A combination of latent class and descriptive analysis, coupled with consultation with family carers and professionals was used to identify and describe groupings of similar services (i.e., “service models”). Results The latent class analysis, completed as a first step in the process, supported a distinction between specialist services and non-specialist services for children who display behaviours that challenge. Planned descriptive analyses incorporating additional study variables were undertaken to further refine the service models. Five service models were identified: Child and Adolescent Mental Health Services (CAMHS) (n = 69 services), Intellectual Disability CAMHS (n = 28 services), Children and Young People Disability services (n = 25 services), Specialist services for children who display behaviours that challenge (n = 27 services), and broader age range services for children and/or adolescents and adults (n= 12 services). Conclusions Our analysis led to a typology of five service models for community health and care services for children with intellectual disabilities and behaviours that challenge in England. Identification of a typology of service models is a first step in building evidence about the best provision of services for children with intellectual disabilities who display behaviours that challenge. The methods used in the current study may be useful in research developing service typologies in other specialist fields of health and care.
Citation
Taylor, E.L., Thompson, P.A., Manktelow, N. et al. Mapping and identifying service models for community-based services for children with intellectual disabilities and behaviours that challenge in England. BMC Health Serv Res 23, 1354 (2023). https://doi.org/10.1186/s12913-023-10388-9
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