Abstract C05: Overcoming breast cancer related stigma: Lessons learned about outreach, recruitment, and retention of Korean breast cancer survivors from an ongoing randomized control trial intervention program
Authors: Lee Sunmin , Jung Mary , Uhm Sunghae , Sim Jamie 
Published: May 2016

Despite being one of the fastest growing Asian ethnic groups and experiencing large increases in breast cancer incidence, there has been very limited research conducted to further understand and improve survivorship among Korean breast cancer survivors. Many Korean women are foreign-born and face cultural and linguistic barriers, which makes it difficult for them to participate in existing English-speaking support groups. Thus, we developed the T.O.G.E.T.H.E.R. (Together Overcome and Get Empowered Through Health Education and Relationships) program, which is the first of its kind for Korean women with breast cancer. This on-going program consists of 7 weekly sessions containing culturally and linguistically tailored information to improve breast cancer survivorship by providing knowledge and skills to reduce stress, improve coping, and increase quality of life (QOL). Korean American women with breast cancer are hard-to-reach population given the strong stigma surrounding the condition. For instance, they often hide breast cancer diagnoses making recruitment particularly difficult.

Therefore, we elucidated lessons learned related to outreach, recruitment, and retention from our experiences conducting the TOGETHER program. We have completed three cohorts of our randomized control trial, consisting of 53 Korean breast cancer survivors. One group of women received a standard education program (including topics such as diet, exercise, complementary and alternative medicine, communicating with physicians, and managing treatment side effects, etc.), while the other received an enhanced program including the aforementioned topics and additional information on techniques for stress reduction, coping, relaxation, and mindfulness which aim to increase QOL. Participants were aged 30 years and older with stage 0 to III breast cancer.

In regards to recruitment, partnerships with community and faith based organizations, the local cancer registry, and physicians were critical in reaching out to potential participants. Other key methods for recruitment included utilizing personal networks and the local ethnic media (i.e., newspapers, radio, and television). We also created a Facebook page and website, where we regularly posted program updates in English and Korean. As part of our outreach efforts, we also provided a breast cancer seminar series with guest speakers (e.g., oncologist, breast imagining radiologist, breast surgeon, and oncology rehabilitation registered nurse) and organized various community breast cancer events (e.g., end-of-the-year TOGETHER program celebration, picnics, and program preview events for potential participants who were uncertain about participation). Additionally, we linked women who were hesitant about participating (due to strong stigma towards cancer) with past participants, who could provide personal perspectives about the program.

Although 55% of our participants were receiving major treatments during the program, we obtained complete data (i.e., three surveys administered at baseline, post intervention, and 7-week post intervention) for 91% of participants and had 77% of participants attend five or more out of the seven sessions in-person. We developed close relationships with participants through continuous contacts and follow-ups by phone and text messages from the research team, which also ensured participation and retention in the program. We also provided our participants with healthy, traditional Korean snacks that were prepared personally by our program coordinator and reinforced messages that were taught regarding maintaining a healthy diet. An intimate understanding of the community through the lessons learned from the TOGETHER program would aid future efforts targeting this underserved population.

Citation Format: Sunmin Lee, Mary Jung, Sunghae Uhm, Jamie Sim. Overcoming breast cancer related stigma: Lessons learned about outreach, recruitment, and retention of Korean breast cancer survivors from an ongoing randomized control trial intervention program. [abstract]. In: Proceedings of the Eighth AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 13-16, 2015; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2016;25(3 Suppl):Abstract nr C05.