Mothers caring for children with life-limiting conditions at greater risk of serious health problems and premature death

16 March 2021

New research shows that mothers of children with life-limiting conditions are much more likely to develop serious physical and mental health problems and have a premature death, compared to mothers caring for children with no long-term health condition.

The research reveals stark findings; the risk of premature death for mothers of a child with a life-limiting condition was more than 50% higher compared to mothers with children with no long-term health condition. In addition, mothers caring for a seriously ill child have a significantly higher incidence of depression, anxiety and serious mental illness, and physical conditions such as cardiovascular disease, type 2 diabetes, hypertension and obesity.

The research was developed by Professor Lorna Fraser and colleagues from the Martin House Research Centre at the University of York and was published in the Archives of Disease in Childhood. Earlier research from Professor Fraser shows that the number of children with life-limiting conditions has grown significantly over the last 20 years, rising to around 86,000 children in England alone. Many of these children will have very complex health conditions and need round the clock care.  

Reacting to the research, Together for Short Lives, the UK charity for seriously ill children and families, is calling for urgent action to improve support, social care and healthcare for families caring for seriously ill children, saying these stark adverse health outcomes are preventable with the right investment.

“Families often tell us that caring for a seriously ill child brings great joy and rich experiences that they would not change for anything. But they also tell us that caring round the clock is exhausting and takes a huge toll on the whole family,” says Andy Fletcher, CEO for Together for Short Lives.

“This important new research makes for stark and very concerning reading. Not only is it unacceptable that mothers face such devastating heath impacts in modern day Britain, it is also avoidable with the right care and support. We need investment in 24/7 acute and community healthcare in hospital, children’s hospices and at home, and properly planned and funded social care. The Budget was a missed opportunity to begin to right this unjust health inequality. Yet, the needs of seriously ill children, young people and their families were barely referenced. There was no mention of the promised plan for social care, nor of how the NHS can recover post pandemic.

We can and must change this. It has never been more important that the forthcoming Comprehensive Spending Review and the newly reformed NHS urgently prioritises the needs of this growing group of children and families”.

Heather Weir, Chief Executive of the Northern Ireland Hospice & Children’s Hospice  supported the call for investment in palliative care, she said, “As the only Children’s Hospice in Northern Ireland we know first-hand the difficulties that mothers face when caring for a child with complex health needs. We are a lifeline for many families across Northern Ireland, providing not only specialist palliative care for children, but support for mothers, fathers and siblings. Caring for a child with complex health needs has an impact on the entire family and whilst we can provide emotional, therapeutic and social support, there is an urgent need for more investment in this area.

Northern Ireland Hospice will be reinforcing this call for further focus and investment through our response to the draft Programme for Government consultation. We hope that the Northern Ireland Executive will take this opportunity to show its commitment to this area of growing need for palliative care.”