So often a diagnosis is communicated in a time of high stress and despite the education provided, questions arise. It is difficult for adults and even more difficult for children.
One key role that a child life specialist has is to assist the healthcare team and patient family in communication with children...the child diagnosed and the other children in the family.
How does is work?
When a child life specialist provides diagnosis education, they typically have a couple of goals in mind. One of those is for the child to understand the diagnosis itself, including aspects of body teaching or anatomy. They also typically include education about the treatment plan for the diagnosis. The goal of this is to help children understand the bigger picture. Understanding these things can be important from a coping standpoint of a new diagnosis.
Example:
If a child only has a negative experience with cancer based on a grandparent’s experience, he or she may have a lot of preconceived notions when his father is diagnosed with a very different and treatable type of cancer. While cancer is a term that covers a large variety of diagnoses, the location of the disease and the available treatment, among many other factors, can have a significant impact on the disease progression and the outcome.
It is important that diagnosis education should be simple, clear and utilize non-threating teaching material to avoid confusion or creating unneeded anxiety surrounding the diagnosis.
Especially when the child is the one with the new diagnosis, it is important to tell your child about the diagnosis in simple and honest terms. Allow the child to ask questions and offer honest answers. It is ok to tell your child that you do not know an answer if you’re uncertain and offer to ask the medical team at their next appointment. This action alone can build trust when a new diagnosis is involved.
Child life specialists...
- Are equipped with both the educational tools, as well as, the knowledge on how to best provide diagnosis education.
- Are trained to adapt their teachings to accommodate the developmental and personality needs of each individual child.
- Can incorporate important information surrounding why treatment is important to improve compliance.
For example, children diagnosed with diabetes greatly benefit from diagnosis education. With a diagnosis such as diabetes, disease management and compliance with treatment is critical for best outcomes.
Diagnosis education allows a child to understand this new diagnosis in their own terms while also learning why they are needing to adapt and make changes to nearly every aspect of their life. Keep in mind, if your child is not provided with honest and accurate information about a diagnosis, he or she is left imagine these answers instead. And honestly, those thoughts are probably far scarier than the truth.
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