Over the past few months, I have been working as a health coach in a program for Adolescent and Young Adults (AYAs) with chronic illness, including AYA cancer patients and survivors. My job has been to help them work through limitations imposed by their illnesses, as they try to reach important goals they have set out for themselves. After a few weeks of coaching, I and the other coaches I work with, noticed a trend: every single one of the patients being coached through the program felt uncertain or confused about how to communicate with their health care providers (HCPs). This made them frustrated or nervous on more than one occasion, and those communication struggles often left them feeling like they did not have full control over their care.
When our coaching team discussed this issue further, we concluded that the frustration and confusion surrounding the AYAs’ struggle to communicate with their HCPs seemed to be rooted in 3 different issues:
- Their perception that they, as the patients, were solely responsible for figuring out how to communicate with the HCPs involved in their care.
- They seemed to view their HCPs as authority figures, not as partners in their health care.
- The confusing balance of letting their parents or partners speak for them, while also wanting to speak up for themselves, further contributed to their frustration.
I would love for there to be more programs aimed at helping AYAs develop stronger communication skills, so that they feel more confident speaking up and taking charge during encounters with their HCPs. However, I also think more attention can be paid to making sure HCPs understand the impact their methods of communication (or lack thereof) can have on an AYA.
So, I wanted to share what I have found to be 5 important things for HCPs to consider when communicating with AYAs:
- Silence does not necessarily equal disinterest.
If the AYA is not being talkative and/or the parent or partner seems to be the primary speaker during interactions, it does not necessarily mean that the AYA does not want to be directly spoken to or involved in the conversation. Shyness, uncertainty about what to say, and feelings of being out of control can make it difficult for AYAs to feel comfortable engaging or talking during appointments or any other kinds of patient-provider interactions. Try to engage them and involve them in their care decisions, before assuming they do not want to talk or be involved.
- Think of conversations with AYAs as a partnership.
AYAs are not little kids, so they do not want to be told what to do, but they are not always grown adults either, so they may want to hear your thoughts before they make decisions. Clear explanations are always helpful, but the key is not to be patronizing. Help them understand what options they have when they need to make decisions, and thoughtfully take time to walk them through the pros and cons of different options. Giving them a chance to make choices helps restore some semblance of control over their lives, which can be really refreshing when their cancer experience has likely left them feeling completely out of control.
- Consider providing both written and oral resources/summaries.
AYAs have a lot going on – school, work, parents and/or partners involved in their care, financial concerns, etc. So, while they may listen intently during appointments, concrete reminders and physical copies of what you discussed can be helpful. Most cancer resource sites I have come across advise patients to take notes during appointments, but I do not think patients should have to be 100% responsible for doing this themselves. If providers can share copies of important things discussed in an appointment, like a list of medications and how they are to be taken, either digitally or on paper, AYAs can have a physical reminder of your conversation topics and more easily report back to loved ones who may be helping them through their treatment.
- Be sure to recognize how the physical impact of treatment may affect their body image and self-confidence, both during and after treatment.
The effects of cancer treatment can lead AYAs to feel more self-conscious about their appearance, and consequently less confident. Additionally, AYAs are often not too different in age from the young medical students and residents they encounter while inpatient, which I know from my own experience only compounds the self-consciousness issue. There was nothing I hated more while going through treatment at 13 and 14 years old than being inpatient and having to be woken up at 8am by a crowd of handsome young residents or medical students who wanted to discuss my most embarrassing personal details, from my bowel movements, to my scar tissue, and more. If possible, help break the ice for AYAs in these uncomfortable situations. AYAs want to feel like people who are cared about, not zoo animals who are being discussed by their keepers in an impersonal way. Come shake the AYA’s hand, introduce all the people you are with, or make a joke about yourself. My favorite attending oncologist was the one who, when I first met him, came into my hospital room by himself first, shook my hand while saying “Hi, I’m (first name)”, then introduced himself to my parents. Only after making sure we were all acquainted, did he usher in the residents and med students, introduce all of them to me, and then begin discussing my care. It made such an immense difference to me because I felt recognized as a person and not a case.
- Attention to overall well-being, especially psychosocial well-being, is key.
While oncologists may be most familiar and comfortable with the chemistry and biology of cancer care, AYAs often are less worried about the physical aspects of their treatment and more worried about the social and emotional challenges they are dealing with. Beginning appointments with a simple “how are you today” or “how have you been,” demonstrating a genuine interest in their life and challenges outside of treatment, can help create a stronger, more trusting patient-provider relationship. Do not underestimate how small talk can help set an AYA at ease and help them feel like you are on their level instead of some kind of authority figure.
With these 5 considerations in mind, I think it is also very important to highlight the concept that the responsibility of communication should be, first and foremost, the responsibility of HCPs. HCPs are, after all, “providers.”
HCPs are in a unique position to help AYA patients engage more actively in their care. By providing opportunities for AYAs to be included in discussions, be part of shared decision-making, receive oral and written appointment summaries and health resources, have their body image concerns or self-consciousness recognized and respected, and to be put at ease by communication styles that take their overall wellbeing into consideration, AYAs will be able to more easily take ownership of their health.
Clarissa Schilstra is a two-time cancer survivor. She was diagnosed with acute lymphoblastic leukemia for the first time when she was two and a half years old. She went through two and a half years of chemotherapy and survived. She led a happy and healthy life until June of 2007, shortly before her 13th birthday, when her cancer relapsed. She then went through another two and a half years of chemotherapy, this time accompanied by radiation. She is now twenty-two years old and a graduate of Duke University. Her passion is helping others cope with the ups and downs of life during and after cancer treatment. She currently works full-time as a research assistant in a pediatric health psychology lab at the University of Miami, but it is her goal to become a pediatric clinical psychologist and she would like to help improve the psychological care available to adolescents and young adults who have serious illnesses. As CKN Section Editor, Clarissa hopes to provide advice based on her personal experience and to share relevant news and research to help young adult patients and survivors find new ways to live their best life in spite of the shadow of cancer. You can find Clarissa’s book, Riding the Cancer Coaster: Survival Guide for Teens and Young Adults, on Amazon.com. To learn more about Clarissa and her book, or to find AYA cancer support resources, visit her website and blog at www.teen-cancer.com.