About 70,000 adolescents and young adults (AYAs), defined as ages 15-39, are diagnosed with cancer each year. These individuals are often treated alongside people twice their age, in offices and clinics where the staff has little experience with the unique needs of AYAs, which can include social isolation, fertility concerns, body image, cognitive function, late treatment effects, and issues related to education, employment, and insurance. Unfortunately, completion of active treatment does not put an end to many of these concerns. Transitioning to survivorship can be particularly difficult for AYAs, who often lack the social support and resources to adjust to their new normal.
Enter Caroline Peterson, MA, ATR-BC, LPC, a licensed professional counselor, art therapist and mindfulness meditation instructor. Caroline has combined mindfulness-based stress reduction with art therapy and counseling to create a unique program, called Walkabout, to assist AYAs in transitioning to survivorship.
Taken from its origins as an adolescent aboriginal rite of passage, a walkabout is a maturational reflective journey of discovery in which aboriginal youth leave home to experience their capacity in the challenging wilderness. The Walkabout is a transformative journey, allowing them to look deep inside, and deeper at the world around them, growing into their true selves. AYAs face a similar challenging journey, beyond what is familiar and comfortable, when diagnosed with cancer. The Walkabout program provides a scene-change on the journey, providing the time, space and environment to personally make sense of what's next in life and build a strong view for surviving well.
OncoLink sat down with Caroline to learn more about the challenges facing AYAs transitioning to a survivor role and this unique program.
OncoLink: Thank you for speaking with us today! Many people do not understand why a cancer diagnosis is any different psychologically for an AYA than an older individual. Can you help us understand this better?
Caroline Peterson, MA, ATR-BC, LPC: The period of later adolescence and young adulthood is a time when individuals are truly coming into their own – manifesting their independence as they launch themselves into higher educational goals, planning careers or successfully advancing professional goals, as well as exploring or committing to partnering relationships and perhaps family planning goals. For healthy AYAs, this is a maturational period of life in which their youthful energy well matches this array of challenges and the future is perceived as bountiful. After a cancer diagnosis, an AYA is faced with uncertainty in all of these areas.
OncoLink: What do you see as the common psychosocial/psychological issues for AYAs during the transition from active treatment to survivor?
Caroline Peterson, MA, ATR-BC, LPC: Diagnosis and treatment for cancer affects AYAs globally, across the bio-psycho-social-spiritual domains of their lives. Treatment for cancer varies, and some treatments are quite arduous.
The post treatment period includes becoming comfortable with separation from the health care team and reclaiming many aspects of life, which have been disrupted, sometimes significantly. Even when post-treatment prognosis is excellent, the idea of the future is changed and learning to live with uncertainty is a significant challenge. Other challenges include self image related to body image and sexuality, work, family and social roles.
During the diagnostic and treatment period, AYAs often return to the care and focused attention of their parents, therefore, post-treatment roles require renegotiating independence with parents. Partner relationships may be deeply altered. AYAs who are parents face the ongoing needs of their children, even as they cope to find the right language to communicate with their children about their illness experience.
In the case of young adults diagnosed with sarcomas, who are one focus of the Walkabout program, the medical literature suggests that many sarcoma survivors experience persistent distress over time.
Walkabout is intended to help any AYA diagnosed with cancer to understand their distress and work with it directly and creatively.
OncoLink: The Walkabout program combines several approaches that have proven successful in decreasing distress from illness, anxiety, depression, fatigue and worried thinking. Can you describe the components of the program and how they meet the needs of the participants?
Caroline Peterson, MA, ATR-BC, LPC: Key elements include (1) engagement with peers; (2) mindfulness meditation skills training to be more attentive and aware, less reactive to challenging events in daily life, with increased vitality and greater ease of mind; (3) physical activity, including mindful walkabouts with a camera in hand; and (4) expressive therapy component using digital photography, art materials and collage to explore the present and imagine a meaningful future. Participants need not have any experience with photography or art to benefit from the program.
OncoLink: What skills are participants able to take away from Walkabout to help them cope with life's challenges long-term?
Caroline Peterson, MA, ATR-BC, LPC: Human beings are inherently creative and using our creativity has been described as "synonymous with health itself." By habit and culture, we articulate our experience more readily using the left or language side of the brain. The creative/expressive component of Walkabout aims to exercise the right side of the brain, to expand creative capacity, spatially, intuitively, and imaginally – like putting more lights on in a house or having more gigabytes.
Mindfulness skills training is another way to light up the brain. People who receive mindfulness skills training, as in the Walkabout, are reported to experience benefit beyond the training period. Overall, this could be described as a greater capacity in the mind and body for balance or what is called psycho-physiological self-regulation.
This balanced way of coping allows one to respond, rather than react, to stressful events. Using mindful attention and awareness to naturally calm the mind and body. Participants report a greater capacity to embrace each day fully and "surf" the normal ups and downs of living.
OncoLink: Who is the program for and how can AYA survivors in the Philadelphia area participate in Walkabout?
Caroline Peterson, MA, ATR-BC, LPC: The program is open throughout 2011 to AYA survivors, post treatment for cancer, who are between the ages of 18 and 38. People from throughout the Delaware Valley are welcome and I am happy to speak with anyone who has questions about the program or its dates and times. I can be reached at the Joan Karnell Cancer Center at Pennsylvania Hospital at 215-829-8700.
OncoLink: This sounds like a wonderful program! Caroline has created this video to explore the program and see what past participants say about the program.
Download Video: MP4