Engaging the Community to Deliver Educational Programming for Young Breast Cancer Survivors

Background: In the United States, about 5% of breast cancer survivors are premenopausal (young) at diagnosis. Young breast cancer survivors (YBCS) have greater health disparities than older survivors: higher incidence of advanced disease, mortality, and poorer quality of life. YBCS report age-specific survivorship needs (e.g. managing children and family relationships, sexuality, cognitive demands, and work) in addition to general survivorship needs. The Young Breast Cancer Survivorship Network (led by trained oncology nurses) is adapted from an evidence-based survivorship tool that addresses age-specific needs by educating, supporting, and networking among YBCS and community stakeholders. Using the community-based participatory research (CBPR) model in the context of young breast cancer survivorship in central Alabama, the Network engaged equitable partners to design and disseminate age-specific education within four outreach components: (1) survivorship service referral; (2) monthly education and support seminars; (3) annual workshop; and (4) electronic education via website and Facebook.

 

Methods:Partners (YBCS and other community stakeholders) completed surveys after each seminar and workshop. Data were analyzed for age-specific needs.  A YBCS advisory board met to validate identified themes that were subsequently adapted for dissemination in the Network’s components. Component data were tracked.

Results:In 2 years, the Network referred 83 YBCS for services and provided 16 seminars to 149 attendees. On a 1-10 scale, attendees highly rated helpfulness (9.7) and meeting survivorship needs (9.8). Participants stated that their objectives were met (99%) and information was useful (100%). The Network’s 2 annual workshops educated 173 YBCS, families, and healthcare providers with high helpfulness and satisfaction ratings. The Network website, housing 46 electronic tip-sheets and community partners links, and Facebook page respectively had 290 daily visits and 165 likes.

Discussion:  Age-specific survivorship education was disseminated through partner engagement. Further study of YBCS using CBPR can improve education delivery and decrease health disparities among YBCS. Future directions of the Network include expansion of dissemination through internet and social media presence.