Thank you to everyone who submitted a nomination for our “Million Thanks” award! Suffice it to say, we have some pretty amazing people in our community. We are proud to be presenting this award to Dr. Cori Liptak of Dana-Farber Cancer Institute, whose work within the young adult survivor community inspired THREE separate nominations! We’ll be honoring Cori and our three finalists — Matt Sheers, Marcie Saganov and Bill Kubicek — at our “An Evening of a Million Thanks” celebration on November 22nd at Hampshire House in Boston. Thank you Cori, for taking the time to speak with us about your spectacular work for AYA survivorship at Dana Farber.
The adjectives used to describe you in your nominations included caring, innovative, and nurturing. After spending time with you, we agree wholeheartedly! What three adjectives would you use to describe your patients?
Courageous, persistent and inspiring!
Tell us about your role in Dana Farber’s Pediatric Psychosocial Oncology Program.
I am a Senior Psychologist in the Division of Pediatric Psychosocial Services at Dana-Farber/Boston Children’s Cancer and Blood Disorders Program. I work specifically within the Pediatric Neuro-oncology Program providing psychological care to patients and families coping with a diagnosis of a pediatric brain tumor. This involves caring for patients who are on active treatment as well as providing psychological assessment and care for those who are treated in the Pediatric Neuro-oncology Outcomes Clinic (our survivorship program). I follow patients ranging in age from infancy through young adulthood. I am also involved in our psychology training program and provide supervision to our neuro-oncology postdoctoral fellow, teach seminars at our institution and beyond, and conduct research.
Your multiple nominations could not say enough about your focus on survivorship and how dedicated you are to the psychosocial needs of AYA cancer survivors. You created the STEPS (Success through Education, Psychosocial Support, and Socialization) program to help survivors connect with their peers. Can you tell us about the program and the impact it has for young adults in our area?
When I started as a postdoctoral fellow at Dana-Farber in 2002, I was struck by the consistent report of social isolation that I was hearing from AYA brain tumor survivors and their parents. I would do what I could to find community-based recreational activities for patients, but there were not always activities that were easily accessible and there were also challenges experienced by the survivors that made not every activity an appropriate one for them. Peer relationships are so important during this developmental period and I felt a strong sense of responsibility to provide something for the patients that would help them connect with peers.
We did some support groups and other activities, which helped inform the development of the STEPS program. We recognized the importance of a frequent and safe contact for survivors that had a consistent structure, enjoyable activity that promoting communication and team building, and an opportunity for parents to connect and get information, were crucial. We started the program in 2008 and it has grown considerably over the years. Any patient who is 13 and over, has been treated for a pediatric brain tumor, is off active treatment for at least a year, and is followed through our Neuro-oncology Outcomes Clinic is eligible to attend. The entire family is welcome to attend. We meet every month and have dinner together and then the survivors will engage in a particular activity and the parents will have a speaker or a facilitated or non-facilitated group. We have been so fortunate to have groups from the hospital and the community come to STEPS to introduce fun, social, and creative activities to the group. We have had Casino Night, Zumba, Sculpting, and Music to just name a few of the fun activities.
We have had attendees from Massachusetts, New Hampshire, Rhode Island, Maine, and Connecticut so this group has provided a service to AYA survivors across the New England Area. Providing the opportunity for socialization is so important in that so many survivors, particularly once they are out of the structured school setting, do not have an opportunity to meet same-aged peers. STEPS gives the opportunity not only to meet other people and connect, but also to do so with the backdrop of a shared medical experience, which is clearly therapeutic.
One of your nominations discussed how STEPS improved the mood and social skills of survivors and gave them the ability to transfer these skills to their lives outside the group. Providing a foundation like this is so critical to survivorship. What other goals do you have for STEP participants?
Now that we have so many participants and participants who are getting older, the developmental needs are somewhat different between the younger adolescents and the older young adults. We are hoping to develop some different social opportunities for these two age groups. A particular area of interest for me is around the vocational challenges experienced by our young adult survivors. In addition to developing social connections, helping survivors recognize what they can accomplish as opposed to focusing on their limitations is so important. In addition, helping adolescents as they are experiencing transition out of high school is another important area of intervention. My overall goal for people attending STEPS is to find a way to help them feel good about themselves, provide them with an environment where they are accepted, help them establish important social connections that are satisfying, and provide a platform for them to support one another through the challenges of brain tumor survivorship. We also want to educate families about late-effects and other issues that are pertinent to brain tumor survivorship.
Cori, you’ve clearly had a huge impact on young adult survivors in our area. We can’t wait to meet and honor you at our “Evening of A Million Thanks” celebration on November 22nd at Hampshire House!