Three things for parents and clinicians to know about adolescents and young adults with cancer
A cancer diagnosis for an adolescent or young adult (AYA) can complicate an already challenging time in life. Youth in their teens and 20s have unique stressors that require different types of support. Even though St. Jude is a children’s hospital, AYA want to feel different and distinct from younger pediatric patients. They want a level of control and independence. Many want to give input into their health care decisions. And they want to prioritize time to participate in their typical activities — talking with friends, dating, or keeping up with college coursework are just as important to them as is receiving treatment. As a member of the Child Life Program who specifically works with this age group, it is important to me to bring awareness to the AYA cancer experience, letting them know that our health care providers see them and support them during this confusing and difficult time.
AYA diagnosed with cancer are just like any other teen or twenty-something. They have vocational aspirations, are working to develop a strong sense of self, have struggles with their body image and want to distinguish themselves from their caregivers. But these processes can become that much more difficult to navigate when an AYA must also learn to cope with a cancer diagnosis. Understanding their experience can help strengthen compassionate care during their treatment trajectory. Here are three important aspects of AYA cancer patients’ experiences that caregivers, partners and clinicians need to know:
Play is at the foundation of building relationships.
Play is the very foundation of all child life interventions — for a teen or young adult, socializing with friends is play, and engaging an AYA in typical activities like video games or online pop culture quizzes can be a great way to build rapport when working with this age group. We want to always acknowledge and give space for teens and young adults going through cancer to have time during their medical experiences to also do the fun things that they would typically be doing if at home. That might mean protecting an hour of the day when they are at the hospital so they can go on TikTok or Snapchat with their friends. In addition, many AYA may be interested in meeting peers with cancer so that they can relate to one another and build friendships at the hospital. The potential for feelings of social isolation during and after treatment for this age group is significant. Addressing this concern early on by promoting normalcy and continuity of their typical experiences during treatment is important.
Let’s talk about …
We need to become more comfortable having conversations with AYA about sexual health and intimacy. Along with fertility complications, there need to be more conversations with our teens and young adults about their intimate relationships. Many AYA are already dating or thinking about dating at the time of their diagnosis. Being unsure about how to navigate conversations about their cancer experiences with potential romantic partners is a big stressor mentioned by AYA. This includes stressors related to changing body image and ability due to treatment-related symptoms, like fatigue and pain. These issues make it difficult to develop intimate relationships, which is an appropriate part of psychosocial development among AYA. So, becoming comfortable with how to have those conversations and letting AYA know that we can be a source for them to openly communicate about their concerns will enhance trust in both directions. If we don’t have the answers ourselves, we can help direct them to available resources for support. But feeling concerned about not having the answers shouldn’t hold us back from having these important conversations.
Stick to the plan.
Supporting treatment adherence is an important part of caring for AYA with cancer. Talking with this age group about treatment is a delicate balance. On the one hand, we want to give them the autonomy to manage their treatment regimen. But at the same time, we can acknowledge that AYA have so much on their mind — keeping up with school, processing the impact of diagnosis, maintaining friendships and coping with all of the other stressors — that sometimes there is a risk they will forget to take their medicine. To see long-lasting improvements in treatment outcomes, adherence is critical. They might need some extra support determining the best way for them to stick to the plan. For us, maybe that means simply confirming that medication has been taken. It might mean helping the AYA design a planner or add an app to their phone that automates reminders. As long as they understand it’s OK to ask for help and support and that it’s normal to be forgetful, these interventions can be a positive and confidence-boosting interaction that also promotes honest communication about adherence.
This is a formative and delicate period for adolescents and young adults – adding a cancer diagnosis can compound the stress AYA feel. As clinicians, parents and partners, we can readjust our interactions with AYA to help ensure they’re empowered to be independent, yet supported if assistance is needed.