More than a parent
The lived experience of parent carers
More than 800,000 children in the UK have disabilities or long-term illnesses and the majority are cared for by their parents (who are known as parent carers).
Caring conveys unique risk factors for suicide that are not seen in the general population. Among parent carers, those who don’t get enough support, who are forced to fight for services for their child, who have to sacrifice their own health, who have poor mental health, and who feel trapped in the caring role, are more likely to think about suicide.
Most parent carers never tell anyone about their thoughts of suicide and homicide, fearing judgement and stigma, and worrying that their child will be taken away. Those who have sought help say the response is rarely helpful. A prescription for antidepressants or a referral to a support group does little to address the underlying problem: a lack of support for, and respite from, the caring role.
The problem is not being the parent of a disabled or seriously ill child. The problem is trying to care for that child in a system that is simply not fit for purpose. Carers need change on a national scale.
Read the policy recommendationsThis means greater investment in disability benefits and high-quality healthcare, social care, education, and employment services for disabled people. The government must also signal its clear commitment to unpaid carers, through a national carers strategy and improved funding for carer support services.
The experiences captured in this film aren’t limited to any particular illness or disability. Parents caring for children with a wide range of conditions – including physical disabilities, developmental disabilities, autism and ADHD, mental illness, and rare genetic conditions, just to name a few – are all at risk of suicide. And so the changes we’re calling for will benefit all disabled children and their families.
A call for better support for disabled children and their parents is not new. But the need for change is only getting greater. We need the government to act now.
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Dr Siobhan O’Dwyer is Associate Professor of Social Care at the University of Birmingham and has spent the last 15 years studying the needs and experiences of unpaid carers, with a particular focus on suicide and homicide risk. She advocates for evidence-based change in pursuit of a fairer and more sustainable world.
If you are interested in getting in touch with Dr O'Dwyer about her research or to share your story, please get in touch at the relevant link below:
Media enquiries
Dr Siobhan O'Dwyer has featured in the media on numerous occasions, including Metro, ITV News, Care Fully Considered, and Boston Globe. If you would like to contact Siobhan with media enquiries, please email pressoffice@contacts.bham.ac.uk.
Many people will be shocked to hear that more than 40% of parent carers have thought about killing themselves. But what’s really shocking is that so many parent carers have been feeling this way and nobody has known until now. Parents of disabled children, and children with serious illnesses, are the hardest working, most dedicated people I know. But so much of what they do goes unseen, and they have to battle constantly with a system that has little interest in supporting them or their children.
