Infants born with major anomalies increase early death risk in fathers
By Louise Kinross
The birth of a child with conditions like heart disease or Down syndrome increases the risk of early death in the father, according to a population-based study published this month in Pediatrics.
The study, led by SickKids researchers, was the first to examine the impact of caring for a child with a chronic condition or disability on the physical health of dads.
Using a Danish registry, the scientists identified over 20,000 fathers and more than 20,000 mothers with an infant born with an anomaly between 1986 and 2015, and compared them to mothers of unaffected children born during that time. They used hazard ratios, which look at increased risk over a prolonged period of time. Mothers of affected infants vs non-affected had a hazard ratio of 1.20. Fathers of children with anomalies had the highest overall mortality, with a hazard ratio of 1.76.
We interviewed co-investigator Dr. Eyal Cohen, a pediatrician at SickKids Hospital. In 2017, we spoke to Dr. Cohen about his JAMA study showing children born with high caregiving needs increase the risk of early death in mothers. Dr. Anne Fuller, a pediatrician and scientist at SickKids, is lead author on the new Pediatrics study.
BLOOM: This study is the first to include fathers. Why is that important?
Dr. Eyal Cohen: Almost all research on caregiving is on mothers and there are a lot of good reasons for that, but we don't know a lot about fathers. They're important members of the family and the impact of childhood chronic disease and disability on them is not well understood.
BLOOM: What were the main findings?
Dr. Eyal Cohen: Both the mothers and fathers of infants born with major anomalies experienced an increased risk of mortality, often from preventable causes, and the risk was similar.
If you'd asked me in advance, I would have expected it to be more modest in fathers than mothers, because we know caregiving is an important explanatory factor, and there are gender differences in caregiving responsibilities in Western society.
However, when we looked among the subgroup of babies with anomalies with greater caregiving needs, we found the relative risk for mothers was higher, so it may be that when you get into really high care that the gender differences play out.
BLOOM: What does this mean for the average mom or dad raising a child with an anomaly?
Dr. Eyal Cohen: It's important to state that these are statistical differences we see at a population level. It doesn't mean the individual mother or father will die young. The majority of mothers and fathers will do well, but we need to be really attuned to the fact that there are these risks in place. Mothers and fathers who care for kids with chronic conditions and disabilities need to be aware of the impact it can have on their own health, and take whatever preventative steps they can.
BLOOM: What was the main cause of death?
Dr. Eyal Cohen: Heart disease is the leading cause of preventable mortality in this age group.
BLOOM: How is it preventable?
Dr. Eyal Cohen: On a population level, we know that chronic stress leads to cardiovascular disease, so any steps we can take to provide better supports for parents is critical. That's the most important thing. Financial support, respite support, and reducing the stigma of disability and of parenting children with disabilities. All of those things are relevant to this story. On an individual level it's being attuned to stress and taking steps to mitigate that as much as possible.
There's evidence that things like mindfulness work for some people, though not all. If parents are noticing symptoms of depression or anxiety or other psychiatric conditions, they need to seek help for that.
On the physical health side, I think a big part of this story is that parents become so immersed in their children's lives and in caregiving, that it sometimes distracts from things they can do to prevent these outcomes. Healthy lifestyles, diet, exercise, and even primary care visits to have their blood pressure and weight checked regularly are important. All of these things can have an effect on these outcomes.
BLOOM: What message do you want professionals to take from this?
Dr. Eyal Cohen: For those of us who work in children's health organizations like Holland Bloorview or SickKids, I think it's incumbent on us to ask in clinical encounters how parents are doing, and to have built into our clinical programs ways of supporting parents when the answer is 'I'm not doing well.' That's number one. We are seeing little pilot projects trying to implement these supports and while that's helpful, we need spread and scale.
BLOOM: The last time we spoke you mentioned SickKids' complex care program was hiring a psychiatrist.
Dr. Eyal Cohen: We were very fortunate to have a psychiatrist join our team in the fall and are incorporating that individual into the complex care program as part of our holistic mental health strategy. That includes caregiver screening and comprehensive mental health supports as part and parcel of what we do. Our social workers are trained in psychotherapy and providing psychological supports to families, and they do the majority of the mental health supports. But when it's needed they can refer to the psychiatrist and that individual can consult and even provide ongoing care, in partnership with us and with the parent's primary care provider.
BLOOM: At one point we talked about the idea of having an adult health clinic embedded into Holland Bloorview or SickKids, so that health appointments for parents and child could be combined at one visit.
Dr. Eyal Cohen: I love that idea. We have SickKids families who are at their child's bedside for a 250-day admission, and we have no simple mechanism to help them address their own health. Real family-centred care means caring for parents in the context of their child's illness or disability.
This study is about physical health and we know mental health is also a huge driver. We're also doing a follow up study looking at weight changes in parents of children who have congenital anomalies vs. those who don't. We want to develop mechanisms that make it easier, in a family-centred care environment, to screen parents when we know they may be distracted from attending to their own health.
BLOOM: Holland Bloorview is training some staff and family leaders in Acceptance and Commitment Therapy for parents. We've looked at studies showing it can reduce stress and depression and improve physical health. However, interventions like that have to be paired with services that reduce caregiving demands, don't they? Because if a parent isn't able to get a good night's sleep, for example, no amount of mindfulness is going to compensate for that.
Dr. Eyal Cohen: That's a really important point. It's not just mental health or physical health or material support that's needed. It's all of the above. And some parents may need more of one than the other, and that's what family-centred care is about. The reason professionals don't often ask people about sleep is because they don't know what to do with that information. We tend to ask questions when we think we can do something about it.
BLOOM: Is there a model internationally where you feel parent health supports have been well integrated into a children's rehab program?
Dr. Eyal Cohen: I haven't seen one yet. The data we used in this study is from Denmark, but they haven't perfected this either.
I think we have to be careful in child health not to separate ourselves from adult health. This is how we run into these issues, because we feel helpless in the adult space. I think true family-centred care involves partnerships with people who understand how to care for adults.
For example, embedding an adult psychiatrist in complex care plays a huge role in educating us about treating and supporting adult mental health. We now regularly discuss parent mental health at our rounds and have been able to find community resources we were unaware of simply by working closely with someone who spends the majority of their time focused on adult wellbeing.
