Many parents feel their biggest responsibility is to protect their children and keep them safe. When a child is diagnosed with a serious medical condition or a chronic illness, there are often many feelings of fear, helplessness, and loss of control.

When it comes to supporting a child through appointments and medical testing, studies show that one of the most helpful things a parent can do is to be honest with their children and provide developmentally appropriate information ahead of time regarding what is happening and why.

Families might feel apprehensive before having these difficult conversations, but is important that such crucial information come from someone a child can trust. Without proper preparation for medical treatment, it has been found that a child may lose trust in their caregiver, the medical team, and the future of their healthcare. Research tells us that preparing children prior to medical procedures leads to a quicker recovery and positive coping skills. 

Child life specialists

Before and during hospitalization, many parents and caregivers seek support from certified child life specialists who can be consulted to provide guidance regarding the best ways to help a child understand their diagnosis, find the language to best tell them about what this means, recommend resources, or to be a source of information regarding any questions a caregiver might have.

Child life specialists are trained professionals who use a multitude of tools such as preparation books or teaching dolls, and language that is developmentally appropriate, non-invasive and concrete to help a child understand their illness and medical treatment.

The Cardiac Center at Children's Hospital of Philadelphia (CHOP) has a team of certified child life specialists available for preparation, support and normalization during appointments in the Cardiology Clinic, pre procedural visits in the Intake Center, or during an inpatient stay in any of the three Cardiac Center Units.

Support for caregivers

In addition to supporting the child during their hospital admission, it is also imperative that caregivers find support for themselves. Processing new information regarding a child’s health can be very difficult for parents. Studies show that a caregiver’s anxiety can directly impact the coping skills of their child. Some caregivers seek the support of a therapist or psychologist to learn appropriate strategies to implement tools to ensure comfort, ease anxiety, and effectively process their child’s medical experience. Child life specialists are also available to provide services to a patient’s siblings to ensure a family-centered approach to care. Effectively managing their emotions allows caregivers to lead their child through a positive hospital experience for the whole family. 

Information and resources

For more help in supporting your child’s upcoming appointments, medical tests, procedure, or surgery, please contact the Cardiology Child Life Team via email at CardiologyChildLife@email.chop.edu.

You can also find a list of therapeutic books on our Resources page.