As Child Life Therapists, we spend a lot of time normalising medical environments and experiences for children. We understand and utilise child development knowledge to support children, young people and families by empowering them through engagement and education. We use visual aids, play or real medical equipment, and promote the development of coping skills; helping children to understand what to expect in medical situations.
Sometimes, when a child has a new diagnosis or requires various diagnostic procedures, parents may find it difficult to discuss these topics with their children. Parents can often worry that the child may not understand or that it will impact their psychological or physiological well-being. With all good intentions, parents may even wish to withhold information in an attempt to protect their child. They don’t want them to lose a part of their precious childhood. So why is it important to tell the truth?
While previously it may have been more common practice to withhold information from children in medical settings, the importance of honesty and inclusion is now more widely recognised. We have a greater understanding of the significance of autonomy and self-determination in the development of children. By understanding the child’s developmental level and emotional capacity, we can choose appropriate language and methods for explanation.
By not telling your child the truth, or withholding information, you can risk a deep sense of mistrust in both the parent/child relationship; as well as with medical staff. This can result in ongoing challenges with medical treatment and compliance in the future. Children can be very perceptive and, behind the whispers and quiet conversations, may already be aware that something is wrong without fully understanding it. This can result in misconceptions and worries about things that aren’t the case. Research has also shown that children not aware of their diagnosis do not experience any less distress and anxiety than those that know, and, in some cases, may actually experience more.
When a child has a level of understanding about their diagnosis, they can be offered choice and control; increasing a sense of empowerment through their medical journey. Children can develop coping skills which can be used throughout their life and support their growing autonomy.
If we consider an example of a young boy who had a cardiac condition diagnosed at birth; his parents did not want to tell him and had previously informed him that it was normal for everyone to go and have regular ECHO’s and ECG’s. It had become routine in his life and he managed these tests without too much distress. As he got older though, he began to question why his friends didn’t have to go and have these tests and asked his parents what was wrong with him. His parents continued to insist that it was all routine. At the age of 7, his parents were informed that he needed to undergo cardiac surgery. Concerned about how their son would respond and not wanting to disclose his heart condition, they wanted to tell him that he was going in for some dental work. They would let him know after he returned from surgery that he had had some work done on his heart as well.
As a Child Life Therapist, I had been asked to spend some time with him; engaging in play while his parents spoke to the pre-admission team. During this time, the child stated that he knew something was wrong and asked me if he was dying. The child had heard bits of conversations and was frightened that if his parents weren’t telling him what was wrong, that is must be really bad. While I was able to validate that those thoughts must have been scary for him, I was unable to disclose any further information to him; but encouraged him to speak to his parents. I was also able to have a discussion with his parents about the session and suggested ways that they could speak to their son to provide reassurance and allow him to be part of his own medical journey. The parents were initially reluctant but agreed to open up the conversation. When his cardiac condition and his upcoming surgery were explained to him, using appropriate language and pictures, he felt relieved that he knew what was happening. We were able to work together to establish a plan that gave him opportunities to make choices and decisions, as well as develop specific coping strategies. He was encouraged to write down any questions that he had and these were answered by the doctors and nurses when his parents weren’t quite sure how to respond. By the time surgery arrived, he felt prepared and confident. His parents had rebuilt the trust by empowering him to cope, with their love and support.
Talking to your child about medical topics can be challenging. If you are worried about how to explain things or how much information you should provide, speak to your medical team or Child Life Therapist for guidance. Creating a sense of safety and trust is important for both your relationship with your child but also their experience in navigating their medical journey.
Kate Strickland has a background in Occupational Therapy and Education and has been a Child Life Therapist working with infants, children and young people in the cardiac space for many years at the Royal Children’s Hospital. Seeing the gap in service provision pre and post hospital, she started the organisation Healing Hearts Beyond to provide a community-based Child Life Therapy service to support infants and children along with their families in managing the stresses associated with procedures, hospitalisations and medical trauma.
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