A Call for Connection

Q&A with Karen Fasciano, PsyD Dana-Farber Cancer Institute

Hospitals and providers serving adoles­cent and young adult cancer patients are increasingly recognizing the vital role that connecting with other young people plays in the overall well-being of their patients. The Young Adult Pro­gram (YAP) at Dana-Farber Cancer In­stitute (DFCI) provides resources, emo­tional support, and opportunities for young patients ages 18 to 39 to connect. Karen Fasciano, PsyD, clinical psycholo­gist and program director, answers some questions about the psychosocial chal­lenges young adults face and how YAP is making a difference.

Q. What are some common factors that lead to the sense of isolation that many young adult (YA) cancer patients describe as a major challenge of receiving a cancer diagnosis?

A. Many YAs need to change aspects of their lives when they are diagnosed, including where they are living (moving home or closer to treatment) or taking a temporary leave from work or school. Their daily routines change, and they are not able to engage in the same social life due to fatigue, medical demands, not feeling well, hospitalizations, or infection risks. In addition, many YAs find that their peers, however well intentioned, do not understand what they are experiencing. YAs feel alone with the intense feelings related to having a life-threatening illness and the dramatic ways that their life so quickly changed.

Q. How does the Young Adult Program at DFCI address this issue among YA patients?

A. The mission of our program is to ease the emotional burden of cancer during young adulthood. Through emotional support services, education, group programming, and our interactive website, we assist YAs with identifying their support needs, coping with emotional distress, communicating effectively with their support systems, and integrating the many changes that cancer brings during young adulthood.

Each patient will find different aspects of the program helpful at different times in treatment. Some will benefit from the clinical emotional support services provided by our social workers and psychologist. Some will prefer to meet other young adults in person in our support group and educational offerings. Others use our interactive website to assist them in understanding the many emotional aspects of cancer during young adulthood, finding new coping skills for these challenges, and connecting with peers who are also coping with cancer at DFCI through social networking.

Caregivers of YAs need support, too, and we have created a website for them to gain insight about supporting YAs and themselves. It also enables them to connect with other caregivers (parents, young spouses, or siblings).

All YAs are unique, and how and when they might want to be part of a community is something we can help them discover during their process of treatment and healing.

Q. Online communities are a source of support for many young patients. What has been DFCI’s experience in implementing an online community for your patients?

A. YAs use online communities. Having a community for the YAs treated at DFCI has been quite helpful to many of them. They can make general posts and inquiries or post and get support in a chat group that has a particular focus—based on either a common issue or a specific disease. Many of the YAs who interact online also meet in person, and this helps build the connections and the support; however, YAs are encouraged to self-monitor in online communities, which are not right for everyone. In order to self-monitor, YAs need to think about how other people’s experiences will support them and in what ways the information might cause increased anxiety for them. 

Q. You recently held a Young Adult Conference. What was the objective of the conference, and how did young patients participate in and benefit from the meeting?

A. Our annual conference is one of our most successful events. It is open to YA patients and their caregivers. It provides a focused time for YAs to think about cancer during young adulthood, its impact, and ways to integrate the experience into their developing identities. A large focus of the day is to encourage participants to learn from one another, and we try to structure the day so that this will happen. We try to use technology as much as possible; during our most recent conference, we used Twitter and also created videos (available at youtube.com/watch?v=Zv1oHP83t_E).