NIHR Programme Grants for Applied Research (PGfAR) is seeking to increase the diversity of study type and design submitted for funding. This case study outlines an innovative research design to investigate the impact of special educational needs or disability provision on children's health.
Programme name: The SPECIAL study SPecial Educational needs provision to Improve Child heALth
Researcher name: Professor Ruth Gilbert
Institution: Great Ormond Street Hospital for Children NHS Foundation Trust
Patient and clinical need
The decline in special educational needs or disability (SEND) provision has generated widespread unmet need. This potentially harms the health and development of children and their families. Additionally, this may increase demands on the health, social care, welfare and criminal justice sectors. The lack of evidence about who benefits from which type of SEND provision can result in inappropriately targeted provision, which could be wasteful, ineffective or even harmful.
To generate evidence on how SEND provision affects child health, we will use a range of methodological approaches to analyse a new data resource, the ECHILD database, which links administrative education and hospital records for all children in England.
The SPECIAL study aims to provide enduring public health benefits by translating methods and tools for reusable, linked, administrative data into ongoing evaluation, monitoring and improvement of SEND services for better health and wellbeing.
The findings will enable policy makers, service providers and users to make evidence-informed decisions about who might benefit from SEND provision.
Better targeted and more effective SEND provision is likely to improve participation in school activities despite health difficulties. In turn, day-to-day stresses for children and families may be reduced, leading to improved health, education and social outcomes, possibly decreasing the need for primary care and hospital appointments.
Aims of the programme
To investigate the impact of SEND provision on children’s health using linked administrative data from education (the National Pupil Database [NPD]) and hospitals (Hospital Episode Statistics [HES]) for all children in England (the ECHILD database).
To establish methods and exemplars for ongoing evaluation. The programme will use diverse methodologies and involve young people, parents and practitioners.
A pragmatic approach is being taken that best suits the research problem. This will use different methods to analyse how certain we can be that SEND provision causes a change in health outcomes, using the fact that SEND provision differs between local authorities and over time. The study will use four interlinked work packages that iteratively investigate and triangulate findings throughout the programme.Parents and services are key to this work as their experiences will inform the study about the criteria for - and experiences of - SEND provision, and how these vary across settings in England.
Work package 1 - Health indicators of need for SEND and outcomes
This work package (WP) develops the cohorts and HES indicators (also known as coding clusters or phenotypes) to define the study population likely to need SEND provision.
Methods: Systematic reviews and qualitative synthesis of stakeholder views to define key health indicators and outcomes; quantitative methods to define health indicators of need for SEND and outcomes and descriptive analyses of prognosis and risk factors associated with need for SEND provision.
Work package 2 - Understanding SEND provision
This work package uses mixed methods to evaluate and map variation in criteria, policies and user experiences of the timing, setting and duration of SEND provision across England. Findings will be compared, reconciled and summarised in a systems analysis. The final output will be metadata of indicators of timing and location of various policies and practices to be used in analyses in other work packages.
Methods: Qualitative evaluation of practices reported by stakeholders and service users and literature reviews; descriptive data analyses; systems analysis to integrate findings; quantitative methods to derive metadata combining linked hospital and education data for all children with information on variation in policies and local practices.
Work package 3 - Impact of SEND provision on health outcomes
This work package exploits changes in SEND provision due to external factors such as policy changes, funding interventions or variation in local criteria, to compare children with similar health conditions who did/did not receive SEND provision. Researchers will use different analytic methods to estimate the impact of alternative SEND provisions on health outcomes. Analyses will use the ECHILD database (linked hospital and education data) and the meta-data from WP 2.
Methods: Quantitative data analyses using econometric causal methods; stakeholder involvement to inform model development.
Work package 4 - Impact of the timing and duration of SEND provision on health outcomes
This work package aims to expand on the work of WP 3 by investigating specific features of SEND interventions, such as the age at first intervention and its duration, on selected sub-populations for whom sufficiently detailed data will be available. Addressing questions of interventions sustained over time requires addressing the challenges posed by the time-varying nature of the information and the possible feedback over time between SEND provision and the health outcomes that are to be evaluated. To deal with these challenges, researchers will use an emulated target trial approach and will initially focus on comparing early versus deferred SEND provision for children born too small or too early. Findings will also guide services and researchers on the use of linked administrative data for future evaluations of SEND provision on health.
Methods: Quantitative data analyses using biostatistical and econometric causal methods to evaluate the impact of the timing and duration of SEND provision on specific groups and over an extended period; stakeholder involvement to inform prioritisation of target interventions and eligible groups.
Figure 1: Programme work packages
Caption for Figure 1
Work package 1 uses both quantitative and qualitative methods to define the health indicators of need for SEND. Work package 2 uses mixed methods to map the variation in SEND provision across England. Work package 3 links the health indicators from work package 1 with metadata from work package 2 to measure the impact of SEND provision on health outcomes. Work package 4 further expands on work package 3, investigating specific features of SEND interventions as evidence for commissioning, targeting and monitoring SEND provision.