Young people are often asked about college plans, careers and relationships. But what happens when a teen or young adult is in a situation where they need to focus on one day at a time?
Associate Professor of Health Communication Nick Iannarino — who’s researched health communication challenges for young adults with cancer diagnoses for 15 years — went right to the source and asked teens and 20-somethings about the support they need and the advice they’d give to peers.
“This is an important area of research because there is an overall lack of understanding about what quality of life means for a young adult and what their needs are,” Iannarino said. ““This population isn’t largely being addressed when it comes to their needs following a cancer diagnosis. Depending on where people fall in age range, they are typically grouped into older-aged individuals or pediatric. But adolescents and young adults are in a very different stage of life than these other groups.”
Iannarino — along with a team of researchers from Michigan Medicine’s Rogel Cancer Care Center, Mott Children’s Hospital and UM-Ann Arbor — conducted a study in which they talked with 27 Rogel and Mott patients, ages 12 to 25. The young people had diagnoses including ovarian cancer, leukemia, lymphoma, osteosarcoma and testicular cancer. Their findings were recently published in a Journal of Communication in Healthcare article.
Through open, honest conversations, Iannarino says the study participants highlighted the need for similar-age cancer support groups and advocacy opportunities, as well as having trusted doctors, family and friends.
Advice from participants included:
- Take it one day at a time. “Sometimes you have to accept that you don’t have full control over every day of your life or every move that you make. If you could just try to live optimistically and happily each day and find something in each day that makes you happy, that’s what you need to do because tomorrow is not guaranteed.”
- Reframe the situation. “Stay strong and keep your head up. No matter how much hair you lose, you’ll always grow it back.”
- Trust the medical team. “You just gotta trust the plan. I mean, you gotta have trust in the doctors and . . . that everything’s gonna work out.”
- Ask for support. “Don’t feel like you’re really making it hard on people when you ask for help. Even for little things. ’Cause, for me, I feel bad when I’m like, ‘Hey, Mom. Could I get some water? I don’t really feel like walking downstairs.’ She’s like, ‘For sure.’ At the start of it, I was like, ‘I really feel bad for doing this,’ but she tells me every day, ‘If you need to wake me up, just wake me up.’ Just hearing that makes me feel like more people should know that people are out to help you.”
- Think about a fertility backup plan before beginning chemotherapy. “For a lot of people, it’s not something that they’ve really thought about when they’re 21, 22 . . . if you have the resources, always freeze your eggs because you don’t know what you’ll want to do five, 10, 15 years from now.”
- Advocate for yourself. “(Doctors are) super-nice people. Ask ’em questions. But sometimes they’re not as good at handling the emotional side of things as someone else could be. If you want to talk to a therapist, you can tell your oncologist that and they’ll help point you in the right direction or they’ll bring in the person that you want to talk to for you because they’re full of resources and you can utilize all of them.There’s always gonna be someone there for you, even if you feel alone and you don’t have family support. Your doctors will help you find the person you need to talk to.”
Family support is also crucial, but sometimes family and friends don’t know how to best provide it, Iannarino said. Even as an expert, he’s struggled with this. “It’s human nature to not know if your actions are too much or not enough,” he said. “But it’s better to do your best and be present than it is to stop showing up because you aren’t sure what to do.” The nonprofit organization, b-present, where Iannarino serves on the board, is a comprehensive resource for families. They offer a support roadmap for each stage of the cancer journey.
Iannarino has friends who have fought cancer. One of his best friends since high school was diagnosed with testicular cancer at age 23. “I saw how it really affected his relationships and his identity. He didn’t want to rely on anyone else and didn’t want to ask for help, even though he needed to,” said Iannarino. “It made me very aware of the barriers young people have when speaking up.” His friend is doing well and is now married with a family, he added.
Iannarino said this advice-focused research work is one part of a larger study the group conducted surrounding cancer and developing adolescent and young adult identities.
Iannarino continues to explore doctor-patient cancer communication with adolescents and young adults, along with the ways health systems can best provide families with support and information, even when cancer centers have limited resources. “Asking adolescents and young adults the question, ‘What advice do you have for another person who is going through this situation?’ opens a door for communication that can build trust and lead to clinicians and patients talking more openly about needs,” he said. “And when those needs are identified, patients and their families can be better connected to the right resources.”
Story by Sarah Tuxbury
