Challenges faced by kids with congenital heart disease

A review of past qualitative studies involving children with congenital heart disease (CHD) has identified key experiences that affect their daily lives.  This systematic review, published in the European Journal of Paediatrics last week, was undertaken by our researchers at the Heart Centre for Children and the Centre for Kidney Research, both groups at Kids Research, together with collaborators from UNSW Sydney, the University of Sydney and The Children’s Hospital at Westmead.

One experience shared by many kids with CHD was that they felt restricted in their abilities to take part in sport or school tasks in the same ways as their peers.  Whether due to interruptive medical appointments, decreased stamina, exhaustion from treatment or having a cardiac device, they often felt excluded from leading a “normal” life.

Children with milder forms of CHD were more likely to be able to separate their illness from their everyday life, and to embrace their abilities rather than their limitations. Some took to coaching sports that they themselves couldn’t play, or focused on academic pursuits.

The study aimed to shed light on areas that doctors can focus on to improve the overall wellbeing and quality of life for kids with CHD.   Advising patients on the types of physical activity they can participate in and teaching them to recognise signs of over-exertion may be an important and practical way of addressing one of the main concerns that kids have, and could increase feelings of social inclusion. This form of education would also be beneficial to teachers and parents, who can sometimes be a little over-protective of children with CHD.

Some children had already learned strategies to continue playing sport. One child noted, “I’ll try to play all sorts of ball games such as basketball, volleyball, badminton and dodgeball. If I find that I can’t play a certain ball game, I’ll say it’s no big deal; I’ll find another ball game to play.”

Participants also reported the importance of being treated by the same physician in order to build a trusting and secure relationship, and that inquiry by their doctor into the social challenges they faced made them feel emotionally supported.

With 1.35 million children a year being diagnosed with CHD globally and up to a 90% survival rate into adulthood, it is important these kinds of strategies are put in place to improve the overall well-being for kids and young people with CHD.

The importance of psychological care in congenital heart health is a major research interest for A/Prof Nadine Kasparian, Associate Professor in Medical Psychology at UNSW and Head of Psychology at the Heart Centre for Children, Westmead.