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

Posted on 16 March 2021

Mothers of children with life-limiting conditions are more likely to develop serious health problems and die prematurely, compared to mothers caring for children with no long-term health condition, new research shows.

The study shows mothers caring for a seriously ill child have a significantly higher incidence of conditions including serious mental illness

The study – by the University of York and Martin House Research Centre - shows the risk of premature death for mothers of a child with a life-limiting condition was more than 50 per cent higher compared to mothers with children with no long-term health condition.

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.

Complex

Professor Lorna Fraser, from the 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.”

The study aimed to quantify the incidence rates of common mental and physical health conditions in mothers of children with a life-limiting condition. 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.

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 have complex health conditions and need round the clock care.

Disabled

Three years ago Lorna Cobbett lost her severely disabled daughter, Essie who was diagnosed as life-limited at 11 days old and died aged 18 months.

Lorna said: “Essie didn’t sleep, as her epilepsy was so bad. She didn’t like the light; she liked the darkness. 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. I wish I could say that I’m surprised by the findings of this research, but I’m not. I am forever broken by being a Mummy to my darling Essie, but I wouldn’t change my experience of loving her during life - and death - for anything.

“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.”

Exhausting

Responding 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.

Andy Fletcher, CEO for Together for Short Lives said: “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.

“Not only is it unacceptable that mothers face such devastating heath 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.

“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.”