Today (Thursday 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.
Carers Awareness Day is an annual event developed by
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.
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.
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
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
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?
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
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.
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?
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.
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.