SickKids-led review finds parents of chronically ill children experience poorer health outcomes

A new literature review led by The Hospital for Sick Children (SickKids) paints a clear picture of physical and mental health outcomes for parental caregivers of chronically ill children.  

Published January 6, 2020 in The Journal of Pediatrics, the review demonstrates a marked difference between the health outcomes of parental caregivers of chronically ill children compared to those of healthy children. The findings set the stage for further investigation into targeted interventions for parental caregivers. 

Caregivers report conflicting experiences

In previous research, some parents reported the responsibilities of caring for a chronically ill child had a positive impact on their health and well-being as it gave them a sense of purpose. However, many have also reported these responsibilities as being stressful and accompanied by worry and financial burdens. 

Given these conflicting experiences, the research team set out to understand whether parental caregiving of chronically ill children is associated with negative health outcomes. They combined data from 26 different studies looking at health conditions or mortality of parents of chronically ill children compared with those of healthy children. 

Increased rates of anxiety and depression among caregivers

The researchers found parental caregivers of children with chronic illnesses had greater anxiety and depression scores than parents of healthy children. Thirty-five per cent of parents with chronically ill children met criteria for clinical depression, compared with 19 per cent of parents with healthy children. More than half (57 per cent) of parents with chronically ill children met criteria for anxiety compared with 38 per cent of parents with healthy children. 

In addition to mental health outcomes, the review also looked at physical health. One study included in the review found that mothers of children with congenital anomalies reported a greater mortality risk and another reported these mothers also experience an increased risk of cardiovascular disease. 

“Our findings show a need to develop and evaluate interventions targeting the health and well-being of parents of chronically ill children. In particular, there is a clear need to screen these parents for mood and anxiety disorders,” says Dr. Eyal Cohen, Co-Founder of the Complex Care Program and Program Head of Child Health Evaluative Sciences at SickKids and principal investigator of the study. 

The need for tailored interventions and more data

While data from fathers were included in this review, there wasn’t enough information to meaningfully compare health outcomes between fathers and mothers. Further work will be needed to investigate whether there are specific health impacts of caring for a chronically ill child on fathers or caregivers who are not mothers. 

The researchers also noted that almost all of the studies included in their review showed negative health impacts on parental caregivers. In contrast, studies examining health outcomes of caregivers of elderly patients show more conflicting findings, with some demonstrating positive health outcomes and lower mortality rates. This suggests caring for children might be distinctly different from caring for adults and therefore require tailored interventions to improve parental caregiver health and well-being. 

“Advances in medicine, science and technology have led to an increase in the number of chronically ill children who are dependent on their parents or guardians as primary caregivers,” says Liel Cohn, a former summer student at SickKids and lead author of the study. “It is critical that we not only manage the needs of the child but also determine how best to support the caregiver, which ultimately also serves to improve care for the child.” 

As researchers at SickKids and elsewhere look to better understand short and long-term health outcomes of parental caregiving and find evidence-based interventions for caregivers, Cohen says parents should be attuned to their own signs and symptoms of any physical or mental health concerns. 

“These parents are so busy caring for their children that it’s easy to overlook their own health. It’s important that any parental caregiver who is feeling distressed or stressed speak to their health-care providers about getting the help they need,” explains Cohen, who is also a Professor of Paediatrics at the University of Toronto. 

This study was supported by the Lunenfeld and CHILD-BRIGHT studentship awards, the Canadian Institutes of Health Research (CIHR) and SickKids Foundation.