Providing young adult patients with resources for emotional support services and referrals to local and national support programs should be standard of care.
—Karen Fasciano, PsyD
For young adults diagnosed with cancer, coping with the aftermath of the disease can be especially daunting. Although all cancer survivors share some common concerns and distress, for young adults grappling with body image, sexuality, peer pressure, dating, marriage, family planning, education, and career goals, the experience of having a life-threatening illness can be uniquely challenging and isolating.
To ease the emotional burden of living with cancer for young survivors, in 2010, the Dana-Farber Cancer Institute in Boston launched a Young Adult Program. The program provides survivors between the ages of 18 and 34 being treated at the cancer institute with an array of clinical services to help them cope. This initiative includes an interactive website (www.dana-farber.org/yap), which provides real-time online support groups, coping skill resources, educational material, and archived educational workshops. Survivors can also “friend” other survivors, have instant-message chats, and post comments and videos on the website.
The ASCO Post talked with Karen Fasciano, PsyD, Clinical Psychologist and Director of Dana-Farber’s Young Adult Program about the goals of the program, why young adults face greater emotional distress than pediatric or older cancer survivors, and what oncologists can do to ease the emotional burden of their young adult patients.
Why did Dana-Farber Cancer Institute launch the Young Adult Program?
At Dana-Farber, we have world-class medical and pediatric oncology programs and are also committed to the emotional care of our patients during the cancer experience. As part of standard care, pediatric patients receive psychosocial support services. In the adult oncology setting, young adults had access to psychosocial programs, but most were not developmentally targeted to their needs.
We were fortunate to receive philanthropic funding to change the structure of our supportive care for young adults and began our Young Adult Program. The program was created with input from medical and psychosocial clinicians who work with young adult patients, but most importantly with input from members of our young adult advisory board. The advisory board is made up of a very dedicated group of young adults who have coped with cancer and now donate their time and knowledge of the experience to guide our programmatic and clinical offerings.
I can conclusively say that young adults receiving medical oncology care at Dana-Farber are offered emotional support that is targeted to their specific needs and delivered in ways that are acceptable to their life stage.
What types of online programs do you provide?
In addition to the virtual community where young adults can post a profile and messages, as well as instant-message, the website also has an overt educational component, including a skill-building section to help them enhance their coping skills while going through cancer treatment. We offer different strategies for managing issues like anxiety, communication challenges, changes in goals, and other problems arising from their cancer diagnosis.
These sections are skill-based and draw from principles of cognitive behavioral therapy, but are presented in a targeted way that address concerns relevant to young adults. The website also provides educational material on such issues as exercise and sexual health.
There are a number of other national social networking websites for young adults with cancer, but we wanted to create a local community at Dana-Farber that helps young adult patients feel more connected and less isolated. Preliminary results from our survey indicate that young adults feel less alone as a result of their participation on the website.
How does cancer affect young adults differently from children or older adults with the disease?
Having cancer during young adulthood disrupts lives in a different way than it does the lives of pediatric or older adult patients. For example, young adults are often just starting out in their professional careers, and disruptions in that process can be more difficult to overcome than gaps in more established careers. In addition, a cancer diagnosis at this time can create a burden on forming new intimate relationships, which can be complicated by the emotional demands of having cancer, body image self-consciousness, and sexual health concerns—all the issues that are developmentally paramount to this population.
Having cancer challenges young adults’ worldview and their sense of control, and exposes them to uncertainty and mortality in a way that many have not experienced before. The diagnosis happens during a very important developmental time when many changes are taking place and normal developmental tasks are disrupted.
For young patients with an incurable cancer and a shortened life expectancy, the emotional upheaval can be especially difficult. They have to discover ways to live a life that is meaningful to them, while at the same time accepting the loss of a long future—a struggle the majority of their healthy peers will not face for decades.
Once treatment is completed, how diligent are young adults about maintaining their follow-up medical care?
This is definitely an area of concern. Usually, young adults who have never been sick prior to their cancer diagnosis don’t advocate for their health care in the same way older adults or parents of pediatric patients do. In my clinical experience, once young adults are done with their treatment, some become strong advocates for their health care and are vigorous about maintaining their routine follow-up medical care, and others may not be as vigilant, in some cases because they are not given specific survivorship care plans and do not understand what is expected of them.
And young survivors want to put the experience behind them and move on with their lives?
Many may want to do that, but most young survivors will not be able to leave the experience of cancer behind them, because it leaves a lasting impression on their lives. Young adults often expect that once they complete treatment, they will be physically and mentally back to normal. But then they find that there is some emotional healing that often comes with the end of treatment and that getting acclimated back into their normal day-to-day lives is not as easy as they expected it would be.
What can oncologists do to improve the emotional care of their young adult patients?
Involving the patient’s family and support system in the patient’s care is essential for a young adult’s emotional well-being. Young adults may not know when or how to ask for this kind of help, but they will need emotional support. Oncologists should talk with their young adult patients about the psychosocial issues they may be experiencing and suggest appropriate solutions and referrals to mental health professionals.
It is important to acknowledge the life disruptions a cancer diagnosis causes and try to limit them as much as possible, while at the same time normalizing the emotional impact of cancer. Providing young adult patients with resources for emotional support services and referrals to local and national support programs should be standard of care. ■
Disclosure: Dr. Fasciano reported no potential conflicts of interest.