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Mapping and identifying service models for community-based services for children with intellectual disabilities and
Emma L Taylor1, Paul A Thompson2, Nicholas Manktelow1
1Centre for Research in Intellectual and Developmental Disabilities (CIDD), University of Warwick, Coventry, CV4 8UW, UK.
Insights
This study identified five distinct service models for children with intellectual disabilities and challenging behaviors in England. Understanding these models is crucial for improving health and care provision for this population.
Area of Science:
- Intellectual disability research
- Child and adolescent mental health
- Healthcare service delivery models
Background:
- Challenging behaviors affect one in five children with intellectual disabilities in the UK.
- Limited research exists on optimal health and care service design for these children.
- Impacts are significant for children, families, and service providers.
Purpose of the Study:
- To describe the structure and organization of community-based health and care services in England.
- To identify and categorize distinct "service models" for children with intellectual disabilities exhibiting challenging behaviors.
Main Methods:
- Survey data collected from 161 community-based services in England.
- Interviews conducted with staff from 60 of these services.
- Latent class and descriptive analysis, with input from family carers and professionals, used to define service models.
Main Results:
- Distinction identified between specialist and non-specialist services.
- Five distinct service models were identified and described:
- 1. Child and Adolescent Mental Health Services (CAMHS)
- 2. Intellectual Disability CAMHS
- 3. Children and Young People Disability services
- 4. Specialist services for challenging behaviors
- 5. Broader age range services (children/adolescents and adults)
Conclusions:
- A typology of five service models was developed for community health and care services.
- This typology is a foundational step for evidence-based service improvement.
- The methodology may be applicable to developing service typologies in other specialized healthcare fields.
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.
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