Zero Breast Cancer (ZBC) at Collaborative for Health & Environment (CHE) offers breast cancer prevention and survivorship health and wellness programs, including a health and wellness coaching program. We also provide resources on breast cancer prevention for audiences of all ages — from five-year-old children through survivors.
For more than 28 years, ZBC has centered community perspectives in our program and resource development. To illustrate how this works, I’m going to explain the development of our bilingual Generations/Generaciones resources about the impact of endocrine disrupting chemicals (EDCs) across generations.
Study participants shape outreach
The funding of our resource development often starts with grants to researchers that include a community advisory board and funds for dissemination of findings. We facilitate the advisory boards, which usually include 8-12 study participants, and lead dissemination efforts.
For example, for a Child Health and Development Studies (CHDS) project from 2016 to 2020, we facilitated the Breast Cancer and the Environment across Generations (BCEG) Advisory Group. The research was funded by the California Breast Cancer Research Program and studied the multigenerational impact of EDCs.
CHDS started enrolling pregnant participants and their partners in the 1960s. The project collected health data including blood serums which can be measured for EDCs. The research follows the health outcomes of those individuals, their children, and their grandchildren throughout their lives. The BCEG Advisory group consisted of three generations of Black, Latina, and white women – mothers, daughters, and granddaughters – who are participants in the larger CHDS study.
The BCEG Advisory Group guided the dissemination of findings. Participants decided that the target audience for dissemination should be young adults ages 18-35 pre-pregnancy. They wanted to include people of all genders, and they also wanted to explain how EDCs impact health beyond breast cancer.
Their top priority was videos, but we did not have enough funding for those at the time. They decided to start with a series of six posters and a companion section of our website. Based on their guidance, each poster has a message that protecting yourself protects future generations, a statement about the harm of EDCs, and one action that can be taken to reduce exposure. Then the website goes into more detailed information about the way EDCs impact multiple generations, the routes of exposure, and more tips to reduce exposure.
Messaging guidance
To select which topic areas, messages, and graphics to use, we obtained additional funding to conduct a focus group and then interviewed 15 young adults pre-pregnancy two times – first about topics and messages, and then about three potential graphic styles. We focused on finding young adults from diverse racial/ethnic backgrounds who had lower incomes or education levels.
This target audience feedback was shared with the BCEG Advisors, and the group used those insights to determine what we would do. The topics selected include pesticides; drink and food containers; food preparation; dust, dirt, and cleaning products; personal care products; and receipts. A photorealistic graphic style was chosen with the focus on hands.
After developing these resources, we conducted a survey that received 73 responses. The survey gave us more information about how people were interpreting our resources, providing us with more feedback to refine them. We also used target audience and BCEG Advisor feedback for dissemination strategies, which included sharing the posters at high schools, health clinics, and even on train stops.
Translation, adaptation - & next steps
After the resources were launched in English, we made the materials available in Spanish with supplemental funding, resulting in our Generaciones resources. Our efforts went beyond translation of the words into a full cultural and linguistic adaptation with interviews with eight native Spanish speaking young adults. Our native Spanish-speaking staff person led this effort.
We received feedback that changed a few of the photos for the posters and refined the language used. Some of the feedback was also used to inform adjustments to the explanations in the English version.
Following the BCEG Advisory Group priorities, we are currently producing videos for two new CHDS projects focusing on the intergenerational transmission of breast cancer risk due to EDC exposures. We’re also undergoing a similar process for a chemical mixtures study led by Dr. Kimberly Badal at UCSF.
Centering community perspectives has proven essential to creating resources that resonate with our target audience. Since our overall goal is moving all communities toward a world with zero breast cancer, this is a priority in all that we do.
Lianna led programs at Zero Breast Cancer (ZBC) for seven years before the organization became a project of CHE in 2024. She is a National Board-Certified Health and Wellness Coach (NBC-HWC) after receiving training and certification at Emory University. Prior to joining ZBC, she had over a decade of experience as a sociological researcher and educator. Her expertise is in qualitative health research; she has studied bone marrow donation, dying in hospitals, and mothering children with autism. Lianna earned her M.A. and C.Phil. in Sociology with a concentration in Gender Studies at the University of California, Los Angeles.