Mothers with severely-ill children at higher risk of illness and premature death, University of York study finds
The research, carried out by the University of York and Martin House Research Centre, found the risk of premature death was 50 per cent higher compared to mothers with children with no long-term health condition.
Mothers caring for a seriously-ill child are also more likely to suffer from depression, anxiety and serious mental illness, according to the York researchers, as well as physical conditions such as cardiovascular disease, type 2 diabetes, hypertension and obesity.
Professor Lorna Fraser, who is from the University's Department of Health Sciences and also Director of the Martin House Research Centre, said:“There is an expectation now, that parents of children with complex or life-limiting conditions become health care providers as well as parents, often 24 hours a day, seven days a week.
“This must have an impact on their health and wellbeing, as shown by this research study. Our health and social care system must be more flexible to support the needs of these parents and children.”
Research also carried out by Prof Fraser has previously shown 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.
Mother Lorna Cobbett lost her 18-month-old daughter Essie three years ago after the infant was diagnosed with a life limiting condition at just 11 days old.
She said she suffered from severe mental health issues and that the system was "broken" when it came to supporting parents of seriously-ill children.
“Essie didn’t sleep, as her epilepsy was so bad," Ms Cobbett said.
"Sleep deprivation almost broke me, I didn’t sleep more than a few hours a night for the first nine months of her life. Then we got a nurse for one night a week, it felt like heaven to get more than a few hours’ sleep in one night. But it wasn’t enough. I was almost pushed to breaking point.
“I still have PTSD flashbacks about many things that I experienced, felt, and heard."
The study looked at data for 35,683 mothers, of these 8950 had a child with a life-limiting condition, 8868 had a child with a chronic condition and 17,865 had a child with no long-term condition.
Ms Cobbett added: "I wish I could say that I’m surprised by the findings of this research, but I’m not.
“The current system is broken. It is pushing all mothers, fathers and carers of children with life-limiting conditions to breaking point. It is a constant fight to get any support and help.”
Andy Fletcher, CEO for the charity Together for Short Lives, said: “Not only is it unacceptable that mothers face such devastating health impacts in modern day Britain, but 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."
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