Evidence
Alert

Mothers of children with life-limiting conditions are at risk of serious health problems

Mothers of children with life-limiting conditions have an increased risk of common health problems, including depression and heart disease. New research found that, compared with mothers of healthy children, they had higher rates of mental and physical conditions. They were also more likely to die. 

The study found that these mothers were at increased risk of anxiety, depression and serious mental illness. They were more often referred to mental health services. Perhaps more surprisingly, they also had higher rates of back pain, obesity, high blood pressure, heart disease, and diabetes. 

Children with life-limiting conditions are likely to die in childhood or early adulthood. Their mothers often care for them 24 hours a day, while living with the knowledge that their child is likely to die at a young age. There are longstanding concerns about how these women fare under such pressure. 

To date, little research has explored the health of this group of women. Knowing more about the health problems they experience could help in the design of specific healthcare interventions for them. For example, the children's healthcare providers could widen their scope and offer more support for parents and families. 

What’s the issue?

More than 86,000 children in England have health conditions that will shorten their lives. Some of these children have life-threatening conditions such as cancer. Others have rare genetic disorders such as Leigh disease and lose mental and physical abilities (such as being able to swallow) after a period of apparently normal development. 

Children are living longer with such conditions because of improved treatments, medical technologies and better medical management. But their mothers carry the burden of knowing their child is likely to die early. These women often provide full-time care. Most healthcare services focus on the child rather than the whole family. The needs of parents can be ignored.

Existing research has found that mothers whose child has died are more likely to die themselves. Mothers of children with special needs or disabilities have higher levels of distress and emotional problems. 

Less is known about the mental and physical health of mothers whose children are expected to have short lives. The National Institute for Health and Care Excellence (NICE) highlighted this gap in research.

Researchers wanted to see if physical and mental health problems were more common in this group than among mothers of healthy children.

What’s new?

Researchers studied GP and hospital records and found 8,950 mothers in England whose child had a life-limiting condition. They compared their mental and physical health to 8868 mothers of children with chronic conditions, such as asthma, and 17,865 mothers whose children had no long-term condition. 

The research team searched the records for health problems that were recorded after the child was diagnosed. They found that mothers of children with life-limiting conditions were at increased risk of a range of physical and mental health conditions. 

Compared to mothers of children with no long-term conditions, those whose children had a life-limiting condition:

    • were 20% more likely to have depression; they also had a higher risk of anxiety, serious mental illness such as psychosis, or of a GP referral to mental health services 
    • were 75% more likely to have cardiovascular disease; they also had a higher risk of obesity, high blood pressure, Type 2 diabetes, and back pain 
    • were 50% more likely to die.

Despite their health conditions, this group of women were much less likely to visit their GP. Each year, they made an average of 20 visits, compared to the 29 visits made by the mothers of healthy children. The researchers say that many of their deaths could have been prevented with proactive healthcare.

Mothers whose children had a chronic condition had an increased risk of some but not all conditions. They were more likely to have depression, anxiety, obesity, high blood pressure and back pain. However, they were not at increased risk of serious mental illness, cardiovascular disease or Type 2 diabetes. They were no more likely to die than mothers whose children had no long-term conditions.

Why is this important?

This study shows that mothers of children with life-limiting conditions have much higher rates of physical health problems, mental illness, and death.

However, the researchers say that proactive healthcare interventions may be able to prevent much of the illness they experience. This group of women are in regular contact with providers of healthcare for their children. The researchers suggest that these providers should consider how to offer preventive services and treatment to parents and families.

Having a psychologist as part of the clinical team, for example, could help. The child’s doctors and nurses could also be more active in encouraging parents to access physical and mental healthcare services. 

The data shows that many of these mothers visit their GP much less often than mothers of healthy children. This may be due to lack of time. These women may find it difficult to focus on their own health while caring full-time for their unwell child. Targeted interventions could encourage and support them to visit their GP for any health concerns. 

What’s next?

The study included information on age and smoking but the causes of death were not available. The researchers did not have access to data to some important factors such as a family history of heart disease, diet and alcohol intake. More research will provide a fuller picture of the mothers’ health.

This is the first part of a larger research programme. The researchers recently completed another study in which they interviewed this group of  mothers. They sought to understand the reasons why their health is affected and what could be done to support them.

The research team has looked into the experiences of fathers of children with life-limiting conditions and is now studying their health.

You may be interested to read

This NIHR Alert is based on: Fraser LK, and others. Health of mothers of children with a life-limiting condition: a comparative cohort study. Archives of Disease in Childhood 2021;106:10 

The Martin House Research Centre: This multi-disciplinary centre researches how to care for and support children and young people with life limiting conditions or medical complexity, their families and the workforce that care for them. 

Together for Short Lives: A charity supporting the families of children with life limiting conditions. 

Further research from the same group on:

The experiences of fathers of children with a life-limiting condition: Fisher V, and others. Experiences of fathers of children with a life-limiting condition: a systematic review and qualitative synthesis. BMJ Supportive & Palliative Care 2021. doi: 10.1136/bmjspcare-2021-003019

How children with life-limiting conditions transition to adult healthcare: Jarvis SW and others. Transition of children with life-limiting conditions to adult care and healthcare use: a systematic review. Pediatric Research 2021. doi:10.1038/s41390-021-01396-8

 

Funding: This research is funded by an NIHR Career Development Fellowship held by Lorna Fraser. 

Conflicts of Interest: The study authors declare no conflicts of interest.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

Commentaries

Study author

Because I work closely with parents of children with life-limiting conditions the findings did not surprise me. But they did concern me. I really think that as a healthcare system and society we could do far more to support these parents.

I would like to see a more integrated system where parents do not have to fight for the basic resources they need to care for their children. If they didn’t have to fight for equipment, housing, and so on, for their child, they would have more time for themselves. They should be supported and enabled to be parents as well as carers.

Lorna Fraser, Director of the Martin House Research Centre, Department of Health Sciences, University of York 

Together for Short Lives 

A mother rang our helpline in a desperate state, emotionally and physically shattered. Her daughter has a life-limiting condition and requires round the clock support. She is sleep-deprived and worried about money. A single mother, she is anxious in equal measure about her sick child and the well-being of her two other children.

This heart-breaking story reflects the day-to-day reality for many parents of seriously ill children. They say that caring for a seriously ill child brings life-enriching joys and experiences that, however bittersweet, they would not change for anything. But they also tell us that caring round the clock is exhausting and lonely, and takes a huge toll on the whole family.

It has serious longer-term impacts for mothers caring for their children. This study clearly showed that they have an increased risk of premature death. Let that sink in. Along with everything else they have to contend with, these women are 50% more likely to die themselves.

This is not acceptable. As the study concludes, proactive initiatives could prevent many deaths. We can do something about this. With 24/7 acute and community healthcare in hospital, children’s hospice and at home. With properly planned and funded social care. With respite breaks and psycho-social support.

Without support, more families will reach breaking point. In the short-term, this will increase demand for emergency health and care. In the long-term, it will leave a devastating legacy of poor physical and mental health among parents and siblings.

Andy Fletcher, Chief Executive Officer, Together for Short Lives 

Family member 

I have a family member whose son has a life limiting condition. This research has given me a good understanding of how his mum might be physically and mentally affected. It has helped me think about how I might be better able to support her.  

Mothers whose children have life-limiting conditions need more support. I hope that midwives, health visitors, GPs, psychiatrists and mental health nurses will read this study.” 

Hameed Khan, Public Contributor, Birmingham 

Public Health Consultant 

This paper is disturbing. It reveals significant increases in risk of mental and physical illness, and premature death, in a group of women who already face considerable barriers to their wellbeing. These women were also less likely to see a GP than those whose children had chronic illnesses. This suggests they are not well-served by existing health services. Had I still been a Director of Public Health, I would have prioritised the provision of needs assessments, along with targeted preventive and support services for these women.

In a personal capacity, a friend had a child with sickle cell disease. The mother was economically disadvantaged, and contracted TB (tuberculosis). The child had three strokes by the age of 9 years and received daily NHS care. But the mother did not, and her life was highly stressful. This paper underlines the difficulties faced by this group, evidently without much statutory support.

Andy Beckingham, Fernández Foundation, Hyderabad, India 

Member of the public 

This is a significant piece of research. I believe that early and easy access to support can and will make a huge difference to people. Further study is needed into how best to support these families and the adults doing the caring. Exploration of the role of fathers would be interesting.

Karen, Public Contributor, Bristol