AYAs Are Not Alone: Confronting Psychosocial Challenges of Cancer
When Huong Do was 23 years old and less than a year out of college, she found herself face-to-face with a medical diagnosis that few of her peers could understand or would ever have to confront: an aggressive large B-cell lymphoma. "The biggest thing at the beginning was that whenever I told somebody that I had cancer they treated it as a tragedy…and that made me very sad," said Do, now 34 and a biostatistician in New York. She found help at a weekly cancer support group run by Gilda's Club, now part of the Cancer Support Community.
"The thing about being with other people who have cancer is that this is life for all of us, so you find the humor in situations and can joke about things," Do explained. "And that made it more normal and let me move past feeling like it was a tragedy."
The desire for a sense of normalcy in the face of illness is typical of adolescents and young adults (AYAs) affected by cancer, who face myriad psychosocial challenges ranging from emotional to financial. These challenges occur in the context of a critical period in human development, when young people are becoming more independent, establishing relationships and careers, exploring their sexuality, and forming their own worldview.
Spurred by AYA cancer patients and survivors, health care providers have begun to recognize that AYA patients have unique and specific psychosocial needs. Getting support to meet those needs is critical for enabling AYAs to adapt and cope as they navigate the course of their illness and beyond.
And that support can come in many forms, from formal support groups to social events and adventure retreats that bring together AYA cancer patients and survivors.
Many Forms of Isolation
"When you're diagnosed with cancer, it really isolates you from your peers who are out there getting jobs, starting families," said Dr. Brad Zebrack of the University of Michigan School of Social Work, who is himself a Hodgkin lymphoma survivor.
Feeling alone and lonely is common for AYA cancer patients and survivors, and this isolation can be physical as well as emotional. Because cancer is relatively rare in teens and young adults, they may encounter few if any other patients their age in hospitals and doctor's offices. Moreover, treatment may require hospitalization, sometimes far from home.
Emotional isolation can result from being unable to hang out with one's friends and missing school, work, and important social events such as school dances and graduations. A desire for normalcy may keep AYAs from sharing their cancer experience with their healthy peers, adding to the sense of isolation. And AYAs with cancer often undergo physical changes such as hair loss or even amputations that make them feel different from their peers.
Furthermore, the experience of having cancer may change young people in ways that make it difficult to relate to their friends without cancer.
"These young people witness events that others their age don't necessarily experience, such as illness, suffering, and death," said Dr. Lori Wiener, who heads the Psychosocial Support and Translational Research Program in NCI's Pediatric Oncology Branch and works with AYA patients and survivors. "They grow in ways that their peers don't, and they may develop tremendous wisdom and a new perspective of what's important and what isn't," she said. Fear of one's own death can also contribute to feeling emotionally isolated.
All of this can add up to significant psychological distress. "Compared to older adults with cancer, young adults are more likely to be distressed and experience symptoms of depression and anxiety," said Dr. Zebrack. Such symptoms can be linked to being diagnosed with cancer at a time of life when many people feel invincible. "There's a likelihood that a 25-year-old has never even been to a funeral, let alone dealt with a life-threatening disease," he said.
Together, the emotional distress and isolation faced by AYAs may interfere with the development of their identity and sense of self, contribute to poor treatment adherence, and lead to other problems down the road.
Finding Help and Support
One key ingredient of effective support for AYAs is connecting with others who share the cancer experience. "The biggest part of finding people who have gone through the same experience as you is that you want to know that you're not alone, and it's not just you who's having a hard time with things and learning how to cope," said Do. Allowing AYA patients to continue living as normal a life as possible is also critical.
Growing awareness of the importance of age-appropriate psychosocial support, along with the advent of the Web, smart phones, and social media, have increased the number and variety of resources available for AYAs affected by cancer. These resources can provide an antidote to feelings of isolation and loneliness and help restore a sense of normalcy.
Some organizations provide financial help, career guidance, and other tangible support for AYA patients and survivors.
And, said Dr. Zebrack, who serves on the steering committee of the LIVESTRONG Young Adult Alliance, "A lot of these resources are being developed by young adults with cancer for young adults with cancer."
One such resource is the I'm Too Young for This! Cancer Foundation (iy), founded in 2007 by Matthew Zachary, who was diagnosed with brain cancer during his senior year of college in 1995. "Back then, there were very few [psychosocial] resources for anybody, let alone a young adult," said Zachary. iy takes an edgy, no-holds-barred approach to cancer support, with its annual OMG! Cancer Summit; the Stupid Cancer Show, a weekly online radio program; and local social events held around the country, including meetups, tweetups, boot camps, and barbecues.
"We build communities by way of giving these young adults what they've never had before," Zachary said. "You get to meet young adult survivors in a nonthreatening, nonclinical environment" at events that restore dignity, help AYAs feel normal, and empower survivors, he said. Zachary also sees iy as an "event-marketing and PR umbrella for the entire [AYA cancer] movement," helping to connect patients and survivors with service organizations like Camp Mak-A-Dream and First Descents.
Other support organizations founded by AYA cancer survivors include Planet Cancer, one of the first online communities for young adults with cancer; Vital Options International; LIVESTRONG; and the Ulman Cancer Fund for Young Adults.
One of the earliest support programs created specifically for teens with cancer in the United States is Teen Impact, which was founded in 1988 by Dr. Aura Kuperberg and several colleagues at Children's Hospital Los Angeles. Dr. Kuperberg recognized the need for such a program while working with parents of young people with cancer and seeing firsthand the special needs of adolescents.
"The general goal is to help young people cope and adjust, but we do it through the power of peer support," with guidance from psychologists and social workers, Dr. Kuperberg said. "We provide 'clinical social therapy,' a unique model that combines therapy in a social package" in the form of 3-day retreats, dances, and other informal get-togethers that include formal discussion groups where young people can share their true feelings and "tell their story and not be judged or feel pitied," she said.
Teen Impact now serves preteens and young adults as well as teens and offers support groups for parents and siblings of patients.
As more face-to-face and online support options become available for AYAs affected by cancer, it's important to recognize that one size does not fit all. "Like any psychosocial intervention for any cancer patient, the goal is targeted interventions," Dr. Zebrack said. "We need the research to know which interventions, or which support programs, are most relevant and most appropriate for which AYA subgroups."
In the meantime, Dr. Kuperberg said, "the increasing number of survivors, including survivors of childhood cancers who grow into adolescence and young adulthood, has created a demand for new and innovative programs that meet their specific needs."
But total immersion in the world of cancer support can be unhealthy, Dr. Wiener said. Her previous research with young people living with HIV showed that "those who are able to balance a life spent with people who really understand what they're going through with a life of 'normalcy' are the ones who do the best," and she believes the same applies to AYAs affected by cancer. These days, she noted, technologies such as texting and videoconferencing help AYA patients keep in touch regularly with friends and even continue their schooling.
Dr. Zebrack advises AYAs to "get tips from others who've been through what you're going through," and "use what seems to work for you and jettison what doesn't seem to be helpful." A major point, he said, is to "figure out how you can get involved in your own care, to not be a victim and just let things happen to you."
Helping other AYAs newly diagnosed with cancer also is empowering and helps young people adjust psychologically.
Room for Improvement
Physicians and nurses must also play a role in helping their AYA cancer patients cope with their illness. Indeed, Dr. Zebrack said, "There needs to be a little bit more understanding of theories of human development as they apply to teens and young adults."
For instance, providers should let AYA patients get involved in their own care and decision making, should not condescend when talking with these patients, and should be open and frank in addressing patient concerns such as fertility preservation and sexuality. Adjusting treatment schedules and appointment times to enable AYA patients to attend important social events is also helpful.
Zachary, too, sees room for improvement among providers. For that reason, he said, iy "often targets young nurses, young social workers, young oncologists, residents, and fellows through our outreach, to let them know that this is about their generation."
"Training pertaining to the developmental needs of adolescents and young adults is still in its infancy and requires a lot of attention and research," Dr. Wiener said. "But the need for it has been recognized and heard."
Forging Ahead with Psychosocial Research for AYAs
When it comes to research on psychosocial issues that affect AYA cancer patients and survivors, "we have done some important descriptive work in the past, and much more of that needs to continue. But more and more there's [also] intervention work going on," said Dr. Pamela Hinds, who directs the Department of Nursing Research and Quality Outcomes at Children's National Medical Center in Washington, DC.
One issue that Dr. Hinds and her colleagues are studying is fatigue and altered sleep during cancer treatment and survivorship. "Fatigue is almost a universal experience, and it can linger from the point of diagnosis for up to 15 years after treatment ends," said Dr. Hinds. "If a child or adolescent is fatigued to a high level, they are not able to participate in developmentally important activities such as socializing," she noted.
She and her colleagues found that physical activity can help fight fatigue in adolescents who are hospitalized for cancer therapy. They are also testing other interventions, such as ways to filter light and noise from patients' rooms.
In an ongoing study funded by the nonprofit HopeLab Foundation, Dr. Brad Zebrack of the University of Michigan and his colleagues have been following teens and young adults, ages 14 to 39, over a 2-year period. The researchers are assessing the teens' use of psychosocial support services while measuring their levels of distress and quality of life at four intervals over the course of the study, to see if there is any association between changes in distress levels and use of support services.
Meanwhile, in NCI's Pediatric Oncology Branch, Dr. Lori Wiener is developing an advanced care planning guide for AYA cancer patients who are facing the possibility of a terminal illness. She and her colleagues are also conducting an inpatient study aimed at "trying to take the isolation out of medically required isolation." (Patients often have to be medically isolated when they have an infection or when the risk of infection is high.) "We're trying to better understand the process and to develop interventions that can increase understanding and reduce loneliness, anxiety, and emotional isolation," Dr. Wiener explained.
In another effort to reduce isolation among hospitalized AYA cancer patients, Dr. Aura Kuperberg at Children's Hospital Los Angeles received a grant to enable live webcasting of Teen Impact's group sessions to patients who are confined to their hospital rooms. "Teens will be able to view the sessions from their computers and interact with members of the live group while lying in their hospital beds," said Dr. Kuperberg, who led a pilot project on a similar approach and plans to study the program's effectiveness.
"This is a very exciting time for psychosocial interventions that are new and being studied, and interventions that are being incorporated into clinical practice," concluded Dr. Hinds.