The “A” in AYA: Where do Adolescents fit in the Hospital System?

by Angie GiallourakisSeptember 4, 2019View more posts from Angie Giallourakis

September is Childhood Cancer Awareness Month. September is also Adolescent Cancer Awareness Month. Sometimes language gets in the way of attempting to identify a particular age group. It is easier to use one word to describe a certain age group for the sake of efficiency. (Childhood is identified as 0 – 18 years old and adolescence – as a subset – is identified as 15 – 18 years old). But does one word properly serve the group?

Children and adolescents (teenagers) are usually treated in the same medical environment. What that means is that an adolescent with cancer may be hospitalized in a pediatric cancer unit. Mind you, that is not necessarily a bad thing – however, the patient may be surrounded by young children and feel out of place. [It depends on the patient, the hospital and the type of cancer. And, it should also be said that it can be to the advantage of the patient to be treated by the experienced pediatric oncologist.]

Who is a child? You often hear a parent say, “this is my child” or “my child has cancer.”

Age really doesn’t make a difference to a parent. They want to see their child healed. The word child often has an endearing connotation. My mother and father would often say that age doesn’t matter “your child is your child forever”. How true.

As children mature their needs change. The role of the parent also changes. The relationship between mom/dad and child now adolescent often takes on a new form. A new style of communication. Different expectations, and so on. Now the family life cycle may have shifted with new and different responsibilities. Aging parents and grandparents may require the mother and father to take on additional roles. The mother and father are now part of the sandwich generation (being squeezed between two slices of bread – children on top and parents on the bottom).

And when the adolescent is diagnosed with cancer – the parent/mother/father (insert appropriate noun) is faced with a huge dilemma: learning to rejuggle their responsibilities while dealing with the greatest fear of their lives.

So where am I going with all of this?

In case you didn’t know this, teenagers can be difficult and stubborn. Sometimes they may engage in risk taking behaviors or have a poor diet that could permanently affect their chances of survival. Sometime they lie about taking their medications (those were moments when I wanted to tear the hair out of my head). And when teenagers with cancer become temperamental and stubborn…parents may feel at a loss.

How does one get angry with the teen that has a life-threatening disease? The reality is that regardless of age parenting a child with cancer threatens every fiber of the soul. Teenagers need to be recognized as a special population. They often realize they don’t fit into the pediatric environment – especially when hospitalized. They often stay in their rooms to avoid interaction or wait until someone (i.e. friends) their age comes around for a visit. Often parents (aka caregivers) are at a loss. My only advice is to just BE THERE FOR YOUR SON OR DAUGHTER and let them know you love them. Also, it doesn’t hurt to encourage friends to visit.

We know that social support is part of the survivorship process. That is why the “A” in AYA was identified as a group in need of being recognized as different from the rest of the childhood cancer population.

And what is social support? It is providing an age appropriate environment, activities, and services that the patient will engage comfortably – without threat of being singled out as the only teen in the group of children.

Do you remember what it was like being a teenager? Did you always fit in? Consider then, the teen as a patient. How are we going to ensure that they feel supported during their cancer treatment? How can we, as advocates and/or parents seek to find ways to help our young survive cancer?

I am happy to say that many hospitals throughout the United States, Canada, and beyond are striving to create appropriate environments for AYA cancer patients. However, we still have a long way to go. It will be advantageous to the adolescent and young adult diagnosed with cancer to be treated in an environment that provides a more holistic approach. An approach that understands the “A” in AYA as a special group within the medical and advocacy community.

:-)