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

Emma L. Taylor, Paul A. Thompson, Nicholas Manktelow, Samantha Flynn, David Gillespie, Jill Bradshaw, Nick Gore, Ashley Liew, Mark Lovell, Kate Sutton, Caroline Richards, Stavros Petrou, Peter E. Langdon, Gemma Grant, Vivien Cooper, Kate Seers, Richard P. Hastings

Research output: Contribution to journalArticlepeer-review

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. Study registration: Trial Registration: Current Controlled Trials ISRCTN88920546, Date assigned 05/07/2022.

Original languageEnglish
Article number1354
JournalBMC Health Services Research
Volume23
DOIs
Publication statusPublished - 4 Dec 2023
Externally publishedYes

Keywords

  • Behaviours that challenge
  • Challenging behaviour
  • Children
  • Community services
  • Intellectual disabilities
  • Learning disabilities
  • Mapping
  • NHS
  • Service models

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