-National Coalition for Cancer Survivorship
Communicating with your healthcare team can be one of the most difficult parts of adjusting to cancer treatment or survivorship as teens or young adults.
As children or young teenagers, you get used to having your parents be the ones to pay attention to the details for you, stand up for you when necessary, and ask questions when things get confusing. However, as older teens and young adults, you begin to understand more about your health and this can lead to the challenging situation of wanting to take greater control of it but not knowing where to start.
When I was diagnosed with my relapse at 13 years old, I had learned enough biology and chemistry in school to understand the explanation the doctors provided me with regarding what my cancer was and how it would be treated. However, I had not yet developed the communication skills to know what to say or when to ask questions in my appointments. When do I talk to my fellow? What kind of questions do I ask him versus my nurse? What is the difference in the role of the physician assistant I so often saw in the outpatient center and the fellow who seemed to be in charge of my case? And how on earth do I speak up in front of a room full of medical students and residents who, even if they don't intend to, look at me and talk about me in a way that makes me feel like I am part of some kind of zoo tour? I mean, when you're a 13 year old girl with ragged hair falling out, almost no eyebrows left, hooked up to all kinds of things that make you feel like your body is rebelling against you, and are then woken at 8 am to the knock of a pile of 20-30 somethings who are dressed in professional attire with notebooks in hand, ready to discuss your bowel movements…...it just isn't conducive to comfortable conversation and communication.
Instead of trying to get answers, I just muddled along until the answers arose or until the situation went away. I only asked questions when I was in an outpatient appointment with the fellow I knew was in charge of my case, and I otherwise let my mom do all the talking.
But, I regret that, because I let myself think that all those people in the hospital were in control, and I did not take ownership of my own health. Being able to take ownership of your health means it's necessary to learn how to effectively communicate with everyone involved in your care.
To develop communication skills, I think the most important place to start is in recognizing you are in charge, and your healthcare team is just there to provide support, advice, and guidance to you. In addition to remembering you are the one in charge, there are concrete things you can do to communicate more effectively. I found a really helpful outline on WikiHow about how to develop good communication skills: http://www.wikihow.com/Develop-Good-Communication-Skills
The outline includes several in-depth descriptions of different aspects of communication, but my favorite part of it is their 10-second summary of how to develop good communication skills.
- Make eye contact with your audience.
- Watch your body language.
- Be a good listener.
- Learn to enunciate your words and to slow them down.
- Keep your voice animated and use appropriate volume for the setting.
I'll elaborate a little on what this means for AYAs in treatment or survivorship:
- Making eye contact is definitely key. In an outpatient appointment with your doctor or nurse, making eye contact with them as they talk, or as you talk, demonstrates to them that you are paying attention and seriously interested in understanding what is happening with your care. Even though it should not be necessary for you to demonstrate such interest to them, I found it helped them to realize that even though I was only 13, I wanted to be involved in any discussions or decisions about my care.Eye contact is even more important (albeit much harder to do) when you are dealing with the med students and residents while inpatient. Making eye contact with everyone in the room, especially the attending physician in charge of them all, puts you in the driver’s seat and demonstrates to them all that you are listening and evaluating all of their discussion, so they know to watch what they say and how they say it.
- Body language. This is also key. Part of body language is eye contact, but the other part of it is how you sit while you listen or speak. While listening, leaning towards the person speaking, nodding your head in understanding or making an expression of confusion if you don’t understand can help you ensure you are learning everything you need to in an understandable manner. While speaking, making eye contact, sitting up straight (as long as you feel well enough to), and gesturing with your hands while you speak, help to engage the person you are speaking to.
- Being a good listener is super important because you have to listen to be able to understand what information is being provided to you, and then to be able to ask questions accordingly.
- Speaking clearly (enunciating) and speaking slowly ensures the people listening to you can understand what you are saying.
- Animating your voice and speaking with appropriate volume for whatever setting you are in can also make a big difference. Tired or overwhelmed doctors may be more likely to pay attention and listen carefully when you animate your voice and speak a little louder.
Using these tactics and remembering you are in charge of your health may help you take steps towards improving your communication with your healthcare team. This, in turn, can help you maintain greater ownership over your health and care.