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The Perspective
The Perspective

December 20, 2016

The impact of caring for a child with complex medical needs and the toll it takes on a mom’s own health

Dr. Eyal Cohen is Staff Physician in the Department of Paediatrics and Associate Scientist in Child Health Evaluative Sciences at SickKids. He is also Associate Professor of Paediatrics at the University of Toronto.

Photo of Eyal Cohen

We all lump the words “maternal and child health” together. It’s usually thought that if we create interventions to improve mothers’ health, it will improve the child’s health. In many cases this is very true, and there are lots of great examples showing that if we support moms, we are supporting the health of babies and children too.

In my most recent paper (published in the Dec. 20 online edition of JAMA), my colleagues and I look at the flipside of this issue – what happens to mothers when their children aren’t healthy?

As a paediatrician focused on the care of children with complex health problems, I see firsthand the impact that caregiving can have on parents and families, particularly when they are inadequately supported by the health-care system. My research has aimed to explore the effects of complex, chronic childhood illnesses can have on child-, parent- and family- health, and to design and evaluate interventions that better support them.  

Mothers of children born with major birth anomalies face serious challenges such as high financial pressures as well as the burden of providing medical care to a child with complex needs within the home setting.  Previous studies indicate that mothers of such children report poor physical and mental health, and that chronic caregiver stress can lead to premature cell aging.  

In this study, we collaborated with colleagues at Aarhus University in Denmark and Stanford University in the U.S. to compare mortality rates in mothers of infants born with congenital anomalies with mothers who delivered a healthy baby at the same age, and year of birth and with the same number of previous births. We found that these mothers had a 27 per cent  increased risk of mortality.  The risk was greatest for those who gave birth to infants with more severe problems (for example, multiple different health issues).  The risk was also noted even within ten years of the child’s birth, when the mothers were likely caring for an ill child.  No single cause of death explained the increased risk, but causes of death that are known to be associated with stress, such as cardiovascular disease, seemed to be more strongly linked than those that were not associated with stress,like cancer.

The study was conducted in Denmark, a country reknowned for relatively generous family assistance and extensive support for families of children with chronic medical conditions. Findings may differ in other countries, but given that medical and social support should be protective of poor maternal health outcomes, even stronger effects might be expected in other settings.

Policy and programmatic strategies to support mothers are commonly shaped primarily by the extent that they will affect the child.  Examples include public health programs to support vulnerable pregnant mothers.  Efforts specifically targeting the health of mothers of children with major health challenges may be helpful. This could include expanding support  for prolonging paid parental leave during times of serious child illness, and ongoing health surveillance of the mother. Moms aren’t the only ones impacted either. Further research to assess health effects on other members of the support network of chronically ill children like fathers and siblings may illuminate other targets for improvement of the health of the entire family.