A new UBC study that looked at parents of children with congenital heart defects (CHD), has determined that the young patients aren’t the only ones who need TLC.
It’s also parents who feel overwhelmed, frightened and in need of additional support.
The study, conducted by Dylan Nemes and Dr. Christine Voss, with UBC’s Southern Medical Program, determined that parents of these children may also be struggling.
“CHD is a common birth defect, affecting about one in every 100 children,” says Dr. Voss, who also conducts research with the Centre for Chronic Disease Prevention and Management. “Advancements in medical treatment and surgical interventions mean people with even the most complex forms of CHD are living longer, with most children surviving to adulthood. However, raising children with the condition continues to be a unique and complex challenge.”
The study had 12 families participating and was published recently in CJC Pediatric and Congenital Heart Disease. Along with family members, the researchers also interviewed health-care providers, including pediatric cardiologists, cardiac care nurses, social workers, exercise physiologists and echocardiographers.
“Caring for children with CHD is a challenging experience for parents, who must juggle managing finances and complex childcare, along with the emotional toll of their child’s diagnosis,” explains Nemes, a fourth-year medical student. “These parents face numerous hurdles as they learn to care for their children and must lean on a variety of personal and clinical supports to provide for their family’s needs.”
While there are support resources for parents—doctors and nurses, community resources, family, friends, neighbours and peers with children also with chronic disease—there remain questions as to when and how to best incorporate these supports into the parents’ lives.
And this raises a key finding of the study. Some parents initially turned down offers of support—a decision they later regretted. As a child grows, their medical needs will change. Dr. Voss says there are many different stages of the journey where parents might find a different need for support. However, it may no longer be available to them.
“Caring for children with CHD is a challenging experience for parents, who must juggle managing finances, complex childcare, and the emotional toll of their child’s diagnosis.”
Dylan Nemes
“Across all parents, there was the emotional side of raising a child with CHD,” says Dr. Voss. “There was a consensus that diagnosis, surgery and ongoing medical care were a large source of trauma. Whether it occurred prenatally or postnatally, diagnosis was always a shock.”
There were several common themes related to anxiety for parents. Many said they often felt overwhelmed as they needed to advocate for themselves and their children to stay well informed. Families not living near BC Children’s Hospital in Vancouver said they struggled with limited parental supports and additional expenses. Study participants also reflected on the enormity of the education and communication required to care for their child with CHD.
One of the clinicians who participated in the study noted that parents are often not well supported, because health-care funding is “patient-centric”—meaning the care and attention is focused on the child, not the parents.
While the study offers insight into the complexity of caring for children with CHD, the researchers also hope to highlight the need for change. They advocate for shifting how and when information is communicated to parents. They suggest that introducing support mechanisms—to help process trauma and cope with caregiving stress—will improve the experience of parents.
Many parents also worried about how much physical activity their child should participate in. They were also concerned about when to introduce an activity routine into the young child’s daily routine.
“We explored some existing barriers and potential solutions to the issue of low physical activity in children with CHD, with a focus on introducing physical activity earlier and more often,” says Nemes. “We are hopeful our findings can inform health-care professionals, advocacy groups and government agencies on providing education, emotional support, resources and physical activity counselling more effectively.”
A version of this story was originally posted on the UBC Okanagan website.