Collaborative Development, Promotion and Evaluation of a Web-Based Intervention for African-American Young Breast Cancer Survivors

Theoretical Background and research questions/hypothesis: Young breast cancer survivors (YBCS)–those >45 years–are often diagnosed with breast cancer at a later stage, receive more aggressive treatment, and experience more severe side effects than older women. African-American women experience the highest breast cancer incidence of any ethnic/racial group under 45 and significantly elevated mortality. Many lack access to support services, but most have Internet access. , The Young Sisters Initiative: A Guide to a Better You! Program (YSI), a Web-based intervention providing psychosocial and reproductive health information to African American YBCS, was developed and evaluated in partnership with Sisters Network^® Inc. (SNI).

Methods: We partnered with SNI, a trusted community organization and subject matter experts to create and share culturally appropriate materials. The YSI was modeled after the Sisters Peer Counseling in Reproductive Issues after Treatment program, an evidence-based intervention for African-American BCS of all ages. The YSI was designed for ease of use and visual appeal; its images, design, tone and were adapted for African American YBCS, following formative evaluation. The mixed-method process evaluation design involved collection and analysis of data before, during, and after YSI implementation, through  document review, interviews, a pre-exposure demographic screener, Google Analytics data and a post-exposure survey with YSI visitors.

Results: Core program elements (use of partnerships and Web presence) were implemented as intended. From March-July 2013, 1,442 people visited the YSI Web-site; 476 completed the screener.  The racial/ethnic backgrounds of the participants matched the intended target audience: 60% of users were African-American YBCS; most other users were African-American BCS diagnosed after age 45. YSI visitors, particularly those >45 years, perceived the YSI as easy to access, navigate and use, and indicated plans to return and recommend the YSI to other survivors. Key strategies for marketing the YSI included conducting personal outreach to survivors; leveraging local and national partnerships and national digital networks to encourage use of the YSI; dissemination of consistent, culturally appropriate messaging in YSI electronic and other materials; and the use of Web-based promotion strategies (e-mail and social media: Facebook, Twitter and YouTube).  These strategies were critical to disseminating the YSI’s psychosocial and reproductive health information to YBCS.

Conclusions: The YSI successfully reached African-American YBCS, who found it useful and relevant to their needs. In-person communication with trusted sources, and culturally-tailored digital and social media are critical to successful delivery of a Web-based intervention for African American YBCS. The YSI is a model program promoting health equity via dissemination of health information to this underserved audience that commonly lacks access to cancer support services.

Implications for research and/or practice: Lessons learned for development and improvement of interventions for “hard-to-reach” and vulnerable populations include developing and utilizing consistent, culturally-appropriate program messaging; engagement of experts to ensure content is current and accurate; leveraging of partnerships for promotion and recruitment; ongoing collection of stakeholder feedback; and use of social media and in-person strategies to engage the target audience.