NIHR Children and Families Policy Research Unit (CPRU)

NIHR Children and Families Policy Research Unit

The overall aim of the NIHR Children and Families PRU (CPRU) is to conduct high-quality research to support the development of evidence-based policy to improve the health of children and families and to develop methods and data resources to improve the quality and timeliness of evidence for policy. Over the next five years, CPRU will conduct research on priority policy areas for child and family health for the Department of Health and Social Care.

Core Projects starting in 2024

Core Project 1. Young adolescent carers: recognition and support

Team: Jenny Woodman, Claire Powell, Lauren Herlitz, Louise McGrath-Lone, Christine Farquharson, Ruth McGovern, Cassey Muir
Dates: January 2024 - June 2026

Background
In England about 20% of young people are caring for a family member because they are unwell, disabled, or unable to cope without their support. Many young carers are not known to services; they may not think of themselves as a carer or not want to tell anyone. When caring affects a young person’s health, wellbeing or education, this meets the statutory definition of a ‘young carer’, and means the young person is entitled to support. Healthcare services and schools have a duty to help to identify young carers. Despite this, studies suggest that professionals do not often ask children or young people whether or how they look after family members with care needs. There are no agreed understanding of how much care is "too much" for a child to manage.

Aims and objectives
Our project aims to:

(1) quantify and characterise (ethnicity, deprivation, age-band) children <18 years with a Young Carers flag in their education, children’s social care and health records.
(2) understand the views of young carers, parents, and multi agency professionals about the level of care carried out by children and young people.
(3) build consensus between stakeholders on assessments of the level of care carried out by children and young people, including examples of "inappropriate" or "excessive care".

Methods
We will be doing quantitative research analysing health, social care, and school records data.

In a qualitative study we will carry out a series of workshops with young carers, parents of young carers, and professionals from health, social care and education services (e.g., GPs, school nurses, Child and Adolescent Mental Health Services staff). We will work with a range of lived experience groups to ensure the study and its implications are considered sensitively and focus on issues that they consider to be important.

Policy relevance & dissemination
Ours is the first study to take a system-level view and look at recognition and response (including recording) of Young Carers across health, education, and children’s social care in England. We will regularly check in with our policy colleagues at the Department of Health and Social Care, with our parent panel and children and young people’s panel and publish findings in academic journals and non-academic formats.

Core Project 2. Access to services related to adolescent mental health

Team: Dr Dan Lewer, Dr Ruth Blackburn, Professor Jess Deighton, Dr Johnny Downs, Professor John Wright
Dates: January 2024 - June 2026

Background
Up to one in five teenagers experience mental health problems, and some young people are at greater risk than others. Those from poorer families and certain ethnic groups are more affected. Furthermore, some research suggests that access to mental health services can be worse for young people from a minority ethnic background, but more research is needed to understand if this true, the role of poverty, and the possible reasons.

Aims and objectives
Our aim is to understand whether mental health services are more accessible for some teenagers than others. The objectives of the research are to:
(1) describe how many teenagers from different parts of the population are using mental health services
(2) test whether usage of mental health services appears fair across the population
(3) make local and national recommendations to promote earlier intervention, particularly for groups of young people who are currently more likely to access care in a crisis.

Methods
We will use local (Bradford) and national (ECHILD) data to assess inequalities in access to services for teenagers with mental health needs. The research will follow three stages:
(1) We will estimate how many teenagers use mental health-related services, and how this differs according to ethnicity and family wealth/background. We are particularly interested in whether young people seek help at an early stage, for example from a GP, or if they seek help in a crisis, for example in the Emergency Department.
(2) Within Bradford, we will compare mental health support to surveys of mental health among teenagers to test whether provision and access to mental health is fair. For example, if we find that certain groups of teenagers are likely to experience mental health problems but are unlikely to receive treatment or support from the NHS, that might be considered unfair.
(3) We will combine our findings to identify which groups of young people mostly urgently need earlier access to mental health services, and make recommendations for how local and national services can identify and better support these groups.

Policy relevance & dissemination
This project aims to guide strategies for improving access and targeting of mental health-related services by identifying which groups of young people with mental health needs access services in crisis, or do not access services at all. In addition, the project aims to identify which factors enable earlier access to mental health-related services. The project will also develop approaches for using local and regional data to understand differences in mental health needs and service use.

Core Project 3. Health, education and social care utilisation and costs across the life course for children with additional or high needs

Team: Professor Matt Sutton, Professor Ruth Gilbert, Christine Farquharson, Dr Shing Lau, Dr Louise McGrath-Lone, Professor Jess Deighton, Professor Johnny Downs
Dates: January 2024 - June 2026

Background
Healthcare, education and social care services support healthy, safe development of children into adulthood. Use and costs of these services are concentrated among certain children, such as those with complex health conditions, who need to use these services much more than their peers. We call this additional or high needs. Government policy is to join up services within integrated care systems, but there is a lack of research on provision of healthcare, education, and social care services for children with additional or high needs and how much services complement each other across the child life course and how patterns of services vary across England. We also want to find out whether early investment in proactive support, such as day care or special educational needs support, might prevent later problems and be better for families.

Aims and objectives
This project aims to:
(1) count how much contacts with services cost for each child in England across from birth to age 24 across health, social care, and special educational needs. We will find out how patterns of costs vary across England and which groups of children account for most costs,
(2) identify opportunities for these sectors to collaborate and develop relationships that will support children and young people’s health and care through more joined up services and earlier intervention.

Methods
We will be using the ECHILD database -a database containing anonymous administrative data from hospital, education and social care services for all children in England. We will measure the combined costs of these services across childhood to identify which groups of children have high use and costs. Findings could indicate where more joined up services might improve outcomes for children without increasing costs. We also explore how service use and costs in the three sectors vary across the 42 integrated care systems in England, and how costs have changed among early and late adopters of integrated care systems. We will also find out if areas with higher rates of proactive services early in childhood have lower rates of emergency care at older ages.

Policy relevance & dissemination
This project will inform the development of Integrated Care Systems and Partnerships across England by generating evidence across public service sectors for children and young people. Parents and young people say that education, health and social care should be interlinked. However, they report experiences of disconnected services that parents need to spend a lot of time navigating.