Methods for Co-production in Research and Practice

Methods for Co-production in Research and Practic

Access to early support for children with developmental disabilities and their families

Early support constitutes a range of support provided during early childhood (0-6 years), including specific interventions and programmes to improve child and family outcomes, and contact with services across education, health, and social care. While it is important to ensure families of children with suspected or diagnosed developmental disabilities (e.g., developmental delay, intellectual disability, autism) are able to access early support, research indicates disparities in access. This thesis sought to examine access to early support for children with developmental disabilities and their families. In Chapter 2, a conceptual framework mapping the process of access to early support across three key phases (recognition of potential need, identification or diagnosis, and early support receipt) was proposed. A narrative review identified several factors that affect access to early support for each phase across multiple factor levels (family, service, intersection, and contextual). In Chapter 3, data from a UK survey of parental caregivers (N = 673) of children with developmental disabilities was presented, providing a comprehensive description of participants’ access to early support (professionals, services, intervention programmes), in addition to perceived of ease of access to early support, unmet need for early support, and barriers and facilitators of access to early support. In Chapter 4, multiple regression analyses were conducted to identify predictors of access to (and perceived unmet need for) early support. Cumulatively, this research has led to substantial increased understanding of the complex multifactorial nature of access to early support for families of children with developmental disabilities. Key selected factors include family socioeconomic status, nature and severity of need, formal identification of need, service coordination and collaboration, and the nature of service delivery in relation to family factors. The contribution of this research is invaluable for identifying potential policy and practice investments and directions for future research to improve access to early support

Positive Behavioural Support (PBS) Impact of the PBS Academy

Positive Behavioural Support (PBS) aims to improve the quality of life of people with learning disabilities who are at risk of displaying behaviour that challenges. It focuses on understanding why individuals exhibit challenging behaviour and uses that information to reduce the likelihood of it occurring. The Positive Behavioural Support (PBS) Academy is a collective of organisations and individuals in the UK working together to promote and raise standards in the use of PBS as a framework for supporting individuals with learning disabilities. This briefing provides an overview of the impact of the PBS Academy and makes recommendations for extending the reach of its wor

“Stop, Look and Listen to me”: Engaging children and young people with severe learning disabilities

This report summarises the work we (the Challenging Behaviour Foundation and the Tizard Centre) did to find new ways of “asking” five young people with severe learning disabilities (whose behaviours are described as challenging) what they enjoy and who or what supports them to do those things.We were able to find out information about what the young people enjoy (and what they don’t) in a range of ways and our mixed methods approach allowed us to gather rich information from each young person in answer to our questions.We found that family carers, advocates and staff who knew the young people well were key to seeking their views and perspectives successfully. Their role included: preparing our researchers with information about communication methods, observable indicators of enjoyment and behaviours that indicate the activity should be stopped. They also had a key role in supplementing the information we gathered from and with the young people themselves with more abstract information about the support available to young people to access enjoyable activities.We would like to see all commissioners and providers of support for children and young people with severe learning disabilities taking active steps to seek their views and preferences directly on a regular basis. We would also like to see all consultation processes relevant to disabled children and young people adapted to include a strand which is accessible to young people with a severe learning disability.We hope this small scale, unfunded piece of work will be a first step towards developing new and better ways to seek the views, wishes and perspectives of people with a severe learning disability (of all ages) and that such engagement becomes par for the course, rather than an unusual and innovative project

Predictors of Access to Early Support in Families of Children with Suspected or Diagnosed Developmental Disabilities in the United Kingdom.

This study examined predictors of access to early support amongst families of 0-6-year-old children with suspected or diagnosed developmental disabilities in the United Kingdom. Using survey data from 673 families, multiple regression models were fitted for three outcomes: intervention access, access to early support sources, and unmet need for early support sources. Developmental disability diagnosis and caregiver educational level were associated with intervention access and early support access. Early support access was also associated with child physical health, adaptive skills, caregiver ethnicity, informal support, and statutory statement of special educational needs. Unmet need for early support was associated with economic deprivation, the number of household caregivers, and informal support. Multiple factors influence access to early support. Key implications include enhancing processes for formal identification of need, addressing socioeconomic disparities (e.g., reducing inequalities, increasing funding for services), and providing more accessible services (e.g., coordinating support across services, flexible service provision). [Abstract copyright: © 2023. The Author(s).

Neighbourhood deprivation and access to early intervention and support for families of children with intellectual and developmental disabilities

Ensuring families of children with intellectual and/or developmental disabilities (e.g., developmental delay, intellectual disability, autism) can access early intervention and support is important. Current research indicates there are family-level socioeconomic disparities of access to early intervention and support, however, there is limited evidence on the relationship between neighbourhood-level socioeconomic deprivation and access to support. Therefore, the aim of this study was to examine the relationship between neighbourhood deprivation and families' access to and unmet need for early intervention and support. We collected cross-sectional data using a survey of 673 parental caregivers of young children with suspected or diagnosed intellectual and/or developmental disabilities in the UK. Multiple regression models were fitted for three early intervention and support outcome variables: access to early intervention; access to services across education, health, social care, and other sectors; and unmet need for services. Each regression model included a neighbourhood deprivation variable based on the Index of Multiple Deprivation and five control variables: family-level economic deprivation, country, caregivers' educational level, developmental disability diagnosis, and informal support sources. Neighbourhood deprivation was a significant independent predictor of access to services, but neighbourhood deprivation was not a significant predictor of access to early intervention or unmet need for services. Families living in the most deprived neighbourhoods accessed fewer services than other families. Socioeconomic disparities of access to early intervention and support, at both a neighbourhood and family level, exist for families of young children with suspected or diagnosed intellectual and/or developmental disabilities in the UK. Future research should focus on policy and other interventions aimed at addressing socioeconomic disparities at the neighbourhood and family level, to ensure equitable access to early intervention and support