Abstract P4-17-01: YSC's "shady pink elephant” end of life series
Authors: Esser MR , Rowe J , Schapmire T , Lewis S 
Published: March 2017

Background

Young Survival Coalition (YSC) is the premier organization dedicated to the critical issues confronted by young women diagnosed with breast cancer.Young women diagnosed with metastatic breast cancer (YWMBC) in particular, face unique concerns. As a result of a large survey to its metastatic constituency from September 2013 through February 2014, YSC gained important information about the lack of knowledge and education when it comes to end of life (EOL) planning and decisions. The survey was a result of YSC's Research Think Tank, which included a metastasis work group that identified the psychosocial needs of YWMBC as a priority.

Based on the results of this survey which showed 71% of YWMBC had not made EOL plans, YSC decided that offering education and tools regarding EOL was an important intervention to offer. In doing so, young women affected by breast cancer, young adult cancer survivors, co-survivors and healthcare providers will be better prepared to have difficult conversations by allowing stigma to be removed, intentions to be shared, and plans to be made, all to honor the young woman's wishes.

Methods

YSC created a three part end-of-life series called the “Shady Pink Elephant.” (hereinafter “Series”) Each part featured a subject matter expert and was offered as a Facebook event where the speaker was live-streamed and recorded. YSC also offered free continuing education credits for nurses and social workers. The recorded events are stored on YSC's YouTube channel as enduring material. The three parts include: (a) The Research and Benefit of Introducing Palliative Care Early; (b) Let's Have Dinner and Talk about Death; and (c) The “Nuts and Bolts” of End of Life Planning. YSC collaborated with the University of Louisville and received IRB approval to study the entire series as intervention. The study is in process and will conclude later in 2016.

Results

Nine participated in Series Part One of the live event. For Series Part Two, 31 participated in the live event. In the third and final part, 33 participated in the live event. The three parts housed on YSC's YouTube channel have been viewed a total of 747 times to date: 411 views for part one, 156 views for part two and 180 for part three. Thirty-three sought continuing education credit. Fourteen social workers and 5 nurses contacted the approving organization to receive continuing education credit for Series Part One, and 10 social workers and 1 nurse contacted the approving organization to receive continuing education credit for Series Part Three.

Conclusions

Live-streamed, recorded Facebook events are a novel and forward-thinking mode of programmatic offering. YSC learned through this process that live-streamed events are a feasible way to offer programming that reaches a larger and broader audience of young women affected by breast cancer and their loved ones.

Citation Format: Esser MR, Rowe J, Schapmire T, Lewis S. YSC's "shady pink elephant” end of life series [abstract]. In: Proceedings of the 2016 San Antonio Breast Cancer Symposium; 2016 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2017;77(4 Suppl):Abstract nr P4-17-01.