Wednesday March 15th is Young Carers Action Day 2023, an annual event that draws attention to the lives of children who care for a family member due to an illness or disability.  Research has a key role in investigating the impacts of caring and informing what support could look like, but the issue of increasing prevalence estimates is challenging our understanding. 

Young carers research has struggled with the issue of prevalence for decades.  As a minority group, the large datasets needed to produce reliable estimates have not always been available, and alternative methods have struggled to overcome the issues of stigma and privacy.  As a result, early estimates of under 2% were accompanied by warnings of a ‘hidden population’, a claim that has been criticised as unproven. 

This is now changing with large-scale data becoming available, and multiple sources producing higher estimates.  Most recent research recognises a range of 2-8% but individual estimates include 12%, 13% and 16%.  Furthermore, these studies use an acceptable young carer definition, have a clear young carer question, are confidential, and collect the data from the child, giving us greater confidence in the result. 

There has however been debate over how to view this increase, partly due to the traditional focus of research on those with substantial caring responsibilities.  Some have argued that we need services that can support this larger population, while others are concerned that many will have responsibilities similar to the chores of children without caring responsibilities. 

The reality is likely somewhere in the middle, and we should neither assume that every young carer has substantial responsibilities, nor question whether their role is big enough to qualify at all.  We should instead recognise that studies are now better able to find those previously hidden, resulting in a more diverse group than those that traditionally participate in research. 

This can be seen most clearly if we consider time spent caring.  The Longitudinal Study for Young People in England, the dataset used in my Caring Lives study, included 121 young people who cared for over 11 hours a week, and 605 who cared for less.  Delve deeper and 142 and 161 spent one and two hours caring respectively. 

In the context of the focus on substantial responsibilities, there is perhaps a debate to be had over whether someone is a young carer if their role is lower-level, or if responsibilities should at least exceed the chores of other children.  However, where children care for a family member and, most importantly, attribute their responsibilities to that person’s disability, there remains a strong argument that they fall within the definition of a young carer.  Rather than focus on what level qualifies someone as a carer, we should instead look to other research areas that consider social problems in the context of the wider population – this means using methods that analyse the whole group to better understand when caring becomes problematic. 

Next steps for the Caring Lives study of the young carer spectrum

Written by Ed Janes