Reflections on Cultivating Community–based Participatory Research Partnerships with the Afghan Immigrant Community

Background

Using a community–based participatory research (CBPR) approach, we describe the process of a first–time campus–community partnership between UC Berkeley School of Public Health and the Afghan Coalition in California.

Objectives: We reflect on lessons learned in cultivating a unique community health partnership to provide a preliminary understanding of how Afghan immigrant women view their breast health, and to determine and assess their barriers to breast cancer screening. This story will emphasize the importance and challenges of (1) negotiating equitable collaborative relationships, (2) recruitment and retention of participants by community members and ways to overcome cultural and language barriers, (3) training of community members, and (4) data dissemination.

Conclusion

Conducting meaningful community partnerships should be driven by a social justice agenda where community has control over the production of knowledge and engaged in all phases of research. There is also a need for transparency and mutual agreement around roles and responsibilities where researchers take on facilitative roles and do not attempt to control the research process.

These are the reflections of the first community/campus partnership between the Afghan Coalition of Alameda County, CA and the UC Berkeley School of Public Health in an effort to provide a preliminary understanding of how Afghan women view their breast health. This was done through in–depth semi–structured interviews conducted with non–English speaking first–generation immigrant Afghan women above the age of 40. This narrative aims to describe the experience of engaging in community–academic partnerships that brought forth essential information pertaining to the breast health screening practices of Afghan women which then led to a five–year breast health education intervention program funded by the National Institute of Health.

My mother, my sister, my aunt, my daughter . . .

In telling their stories, the women were speaking about their struggles, their pain and resilience. They painted an accurate picture of breast cancer in their communities, which remained a subject considered taboo in Afghan culture. It was clear this was more than a “make sure everyone gets a pamphlet” intervention. No intervention was going to work unless it was a part of the community itself; not for them or about them or even from them. In a refugee community struggling against the label of terrorist as the United States entered its second decade of war in Afghanistan, information and access to preventative healthcare, including breast cancer screening, was minimal. And the stories kept coming.

My niece, my daughter–in–law . . .

Working with the Afghan community of Alameda County, CA, the largest Afghan refugee population in the United States, two–thirds of whom are female, meant we were approaching a long–established community with its own politics, social and cultural norms, and community leaders. It can be easy, and expedient, to paint broad circles in the name of increased access, but it was clear that previous research on immigrant Muslim women and breast cancer hadn’t addressed the scope of what we were facing. The women here were less literate, unaware of screening recommendations, and hampered by their immigrant status, cultural valuation of female modesty, and a necessary wariness of any dealings with officialdom in the age of the “War on Terror” wherein the community was consistently approached for informants.

My mother–in–law, my cousin, my wife . . .

Establishing any partnership is part act of faith and part extended learning curve, but the development of a true partnership across culture, language, religion, and deep societal mistrust required more than good intentions. The high rates of breast cancer anecdotally reported in the population, as well as the lack of access to care still faced by an established community (mean residence in the US was 16 years) pointed to the need for a culturally based intervention program to establish and address attitudes toward breast cancer screening among a population with limited English language usage, high rates of illiteracy in any language, cultural concerns around female modesty, and limited access to healthcare providers. Two groups, from the UC Berkeley School of Public Health and the community via the non–profit Afghan Coalition came together for a...