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How can research shape the future of young carer services?

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Today (30th January) is Young Carers Awareness Day, a day of campaigning for improved support for young carers. Ed Janes is a DECIPHer-based researcher whose PhD focuses on young carers’ wellbeing. Pioneering research was central to the rise of young carer projects in the 1990s, and here he looks what role research can play in informing the next stage of support.

Young Carers Awareness Day is an annual event developed by the Carers Trust.  National, regional and local young carers organisations and groups will mark the contributions that young carers make in the UK but also campaign for improved support. 

Young carers are children and young people under the age of 18 who care for a family member.  This can be a parent, sibling or other relative who needs support due to a chronic illness or disability, mental ill-health or a substance addiction.  This caring role can include a variety of responsibilities including additional domestic chores, personal care, companionship and looking after siblings.  These activities go beyond those that young people take on as a regular part of growing up. 

Most research has focused on the impacts on young people of caring at a young age.  More recently there has been a focus on the effects of taking on specific caring tasks and caring for people with specific illnesses or disabilities.  Many of the impacts have been found to be negative including anxiety and depression, anger, isolation and bullying.  However there is also evidence of positives including increased confidence, caring skills, and happiness and pride at being able to help the person that they care for. 

The initial research in the 1990s is credited with leading to the development of young carers projects offering respite and advice across the UK.  These projects are known to be valued by young carers but there are concerns over the support of young carers by schools, social services and health professionals.  Improving this support is a key part of Young Carers Awareness Day but what role can research have? 

Unresolved questions in young carers research 

The answers possibly lie in a number of problems that have been long accepted in young carers research but which are largely yet to be resolved: 

What is the prevalence of young carers in Wales and the UK? 

How do the lives of young carers accessing support vary from those are unsupported and potentially unidentified? 

Numerous estimates on the number of young carers are available but they do vary greatly.  However more recent studies indicate higher levels than previously thought with the most recent SHRN study estimating that 16% of secondary school pupils are young carers.  This figure is far beyond those who access young carer projects, and leads to the second question. 

Population-based quantitative research on young carers is rare and the majority of young carers research is with those already accessing support.  This is because many young carers (and their families) don’t want to be identified.  However how do we know that the experiences are similar for supported and hidden carers?  Knowing that effects on the larger group are negative would suggest a far greater need for provision than there currently is.  Alternatively, moderate negative impacts or benefits would evidence that those in most need of support are being successfully identified.

My research project

I’m a third year DECIPHer and CASCADE PhD student, and my study is titled Caring Lives: What do children and young people who look after family members need to thrive?

Caring Lives is concerned with why the mental health effects of caring vary for different children and young people.  This includes thinking about difference in caring responsibilities, family situation and support.  As part of this I’ve recruited from both young carers projects and schools to look at the difference between young carers who are supported and those who are unknown to services.  I’m meeting with each young carer multiple times to link changes in their wider lives over time to changes in their mental health.

I’m also using secondary data of over 12,000 young people to compare the health of young carers with other children and young people over time. 

The final aim of my PhD is to consider the potential for future services and what these could look like.  I’m particularly interested in the development of needs-based services for individual young carers that could sit alongside the current services for the group as a whole.  I’m hoping that I can then take findings forward in more young carers research in the future.