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. And 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.
Responding to the research, Lorna Cobbett, Mummy to triplets Roman, Essie and Eva said:
“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. Hearing “no” is relentless and it wears you down, it stops you fighting to hear a “yes”, which will give you time to make memories. We are living a daily life where the death of our child is imminent and expected. It places stress and strain on our mental health in a way you cannot imagine, nor do I ever want you to.
I saw this first-hand with my severely disabled daughter, Essie, who was diagnosed as life-limited at 11 days old and died aged 18 months. 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 and now, over three years after Essie’s death, 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 my namesake’s 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.”
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”.
Professor Lorna Fraser, Director of the Martin House Research Centre added: “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.”
About the research
Health of mothers of children with a life-limiting condition: a comparative cohort study was carried out by Professor Lorna Fraser, Fliss EM Murtagh, Jan Aldridge, Trevor Sheldon, Simon Gilbody and Catherine Hewitt at the Martin House Research Centre, University of York. You can read the full article about the study in the Archives of Disease in Childhood here.
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.
The study used comparative national longitudinal cohort study using linked primary and secondary care data from the Clinical Practice Research Datalink in England. Maternal–child dyads were identified in these data. Maternal physical and mental health outcomes were identified in the primary and secondary care datasets using previously developed diagnostic coding frameworks. Incidence rates of the outcomes were modelled using Poisson regression, adjusting for deprivation, ethnicity and age and accounting for time at risk.
About Together for Short Lives W: togetherforshortlives.org.uk
Helpline: 0808 8088 100When a child’s life is expected to be short, there’s no time to waste. Together for Short Lives is here to make sure the 99,000 seriously ill children and their families across the UK can make the most of every moment they have together, whether that’s for years, months or only hours. We stand alongside families, supporting them to make sure they get the vital care and help that they need.We support and empower families caring for seriously ill children by listening to their needs and helping them find the right care. We provide easily digestible information about available support so families can spend less time searching for help and have more time together. We connect families with support services and other families who understand what they are going through, so they don’t feel as alone.99,000 babies, children and young people are living in the UK with health conditions that are life-limiting or life-threatening—and the number is rising. Many of these children have complex conditions and need specialist care 24 hours a day, seven days a week.The impact is enormous; affected parents, brothers and sisters, grandparents, and the wider family make up an estimated 790,000 people who are actively involved in care. For those who love these children, accessing help and the right care can be emotionally stressful. For those of us who haven’t faced it, it’s unimaginable.Getting the right support can make a lifetime of difference. And that’s what we are here for.
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