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What do we know about the health of young carers – and is it enough?

Posted on August 31, 2022August 30, 2022 by Christine Garrington

Care systems in many countries are underpinned by the efforts of huge armies of informal carers, many of whom are children. And while there is official recognition in some countries that these young carers suffer poorer health than their peers, there have been few studies highlighting the particular effects of caring on this group. Rebecca Lacey, Anne McMunn and Baowen Xue at UCL’s Department of Epidemiology and Public Health reviewed the evidence and uncovered an urgent need for more research on the issue. 

There’s a wealth of research which links informal caring with poor health outcomes, both physical and mental, in adults. But what of the under-18s who are known to be looking after loved ones? The 2011 Census for England and Wales tells us there are around 178,000 of these young people, a figure we believe to be a serious underestimate and a figure which is likely to have increased since 2011 and most likely again since the pandemic.

Informal caregiving is typically defined as the provision of unpaid care for a friend or relative who requires additional support due to illness, disability, or frailty. The tasks vary, but they can include practical support such as shopping or housework, emotional support and physical or personal care. 

An ageing population and a growing number of people living longer with poor health have led to increased care need in many countries. And this is often picked up by family members – typically between two and eight per cent of under-18s in high income countries, though we do think post-Covid that the figure may have risen.

Young carers are recognised in social policy as a particularly vulnerable group. And yet, surprisingly, there’s no strong body of evidence about how their needs might differ from those of adult carers, or from other young people.

Reviewing the evidence

 So what do we really know about how caring affects young people under 18s? We reviewed the existing evidence about their health in order to highlight their unique needs and to inform social policies which could help support them.

Ours is the first systematic review of the international evidence on the health of young carers from quantitative studies, and we have included both academic and non-academic studies. The majority assess the mental health of young carers compared to their non-caregiving peers.

We found 13 relevant studies, seven from the UK, two from the US and one each from Canada, Australia and Austria , plus one cross-European study. Five investigated both physical and mental health, seven only mental health and one only physical health.

Of the studies which looked at mental health, 10 used at least one widely-validated assessment tool such as the Strengths and Difficulties Questionnaire SDQ. One used a self-reported measure of chronic mental health problems, and two included only self-reported emotions.

Poorer mental health

Of those studies, all but one found young carers had poorer mental health than their non-caregiving peers. They had more symptoms of anxiety and depression, lower levels of self-esteem, poorer health-related quality of life and more antisocial behaviours than their peers. They also felt they were more prone to emotional symptoms, conduct problems and poor relationships with their peers. 

Young carers were also more likely than their peers to report a chronic mental health condition. Those providing care every day, or providing more than 20 hours on certain days, had the poorest mental health on average.

Of the seven studies which investigated physical outcomes, four used self-rated health assessments and two included information on limiting illnesses or disabilities. One asked about sleep problems, headaches, tiredness, and back pain, while the remaining studies included reports of chronic mobility problems, chronic health conditions and sleep.

All the relevant studies found young carers reported worse physical health. Specifically, they were more likely to say they had a limiting illness or disability or a physical health condition, and they were likely to report fewer hours of sleep than their peers.

Weak research base

This evidence suggests that young carers appear to have poorer health than their non-caregiving peers. We can also say, considering the importance of the issue, that the research base is relatively weak. All except one study included in the review were cross-sectional. That is, they captured both health and caring at the same point in time. It’s therefore impossible to tell whether poorer health came after being a young carer and hence whether being a young carer “causes” poorer health.

We also don’t really know much about how young carers fare in different types of social policy context, or about trends over time. We don’t really understand the mechanisms through which poorer health is translated – we know that in adults factors such as social isolation or increased likelihood of risky behaviours such as smoking and drinking can play a part, but we don’t have comparable information for young people.

Also, the studies we found were all from a few high-income countries where there was some official recognition of the needs of this group. What about the outcomes for young carers in poorer countries, where they often remain invisible to organisations which might support them? What about differences which might be driven by gender or ethnic background, by the condition of the care recipient or by the carer’s relationship to them? 

While there was some evidence of poorer physical health among young carers, the studies which considered specific physical conditions or symptoms were of poorer quality, making it difficult to assess the true extent of the problem. We therefore need more high-quality longitudinal studies to look into the physical health effects of young caring.

It’s clear from our review that young carers need support and they need it urgently. A firmer clearer evidence base making use of robust research that follows the same individuals over time and which looks closely at physical as well as mental health outcomes can play a major role. 

A systematic review of the mental and physical health of young carers is research published in The Lancet Public Health by Rebecca Lacey, Baowen Xue and Anne McMunn, who are members of ESRC International Centre for Lifecourse Studies  in the Department of Epidemiology and Public Health at University College London.

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