Reflections on Cultivating Community–based Participatory Research Partnerships with the Afghan Immigrant Community
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.
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 [End Page 21] 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 pilot study and the goal of developing a sustainable community based intervention project.
A Community Advisory Board (CAB) was established to develop research questions, partner in the data collection, and development of future intervention programs. The CAB) was representative of the Afghan community and consisted of local community leaders, elders, nurses, teachers, breast cancer survivors, and community health advisors invited by the Afghan Coalition. Transparency, roles, budget, and procedures were all collectively agreed upon and written into the grant proposal to avoid conflict or confusion at a later date. While this process was lengthy, particularly in the eyes of the University partners who were not fully enmeshed in the community politics and behind the scenes negotiations necessary, it did ensure community buy in.
The importance of tea in Afghan culture cannot be overstated. If this project was going to go anywhere it would go there on the strength of the tea.
They come in. Suddenly, all your academic notions of cultural relevancy and community participatory research become very real. Our partnership made our plans for a project design that would foster a warm and inclusive atmosphere possible. The multi–lingual interviewers, the careful recruitment of a broad cross section of the community, the careful attention to religious and cultural norms, remembering to provide childcare; it all begins to fade into the narrative of women’s stories. Our community partnership model helped contextualize our research within the historical and political [End Page 22] context of women’s lives—as refugees, as woman headed households, as trauma survivors, and as members of an incredibly close–knit tribal culture that has rebuilt a community as outsiders. Our community researchers were trained to conduct interviews both to overcome literacy issues and to make this project a truly shared experience. There was extensive follow up built into the project design to maximize retention. We wanted our partnership to have time to build on the conversations started over tea because that trust was the foundation for community–based intervention. Academic timetables being what they are the pace could feel particularly laborious at times, but the room built into our project, and funding, for talk was an essential part of its success.
And it was the stories that stuck. Women were interviewed one–on–on in one of several possible languages. As the tea flowed so did the stories. Some were unsurprising—trouble with transportation and a lack of interpreters—and others were more nuanced. By centering religion (the community 99.9% identifies as Muslim), we opened the doors to deep discussions of philosophy and identity, their community, and their role in Afghan life. These women viewed their bodies as divine gifts and felt a deep responsibility to care for them and do everything they can to be healthy and beat disease—a contrast to a more fatalist attitude we often expect to find in deeply religious communities in the West. Additionally, particularly as the US presents such a negative view of gender relations in Muslim societies, it was essential that we understand that our partners viewed their health as essential for the survival of the family and, by extension, the community. From this we began to build our intervention strategies.
“Islam doesn’t say we can’t go to a man doctor but I am Afghan and my culture says it’s not right”
One of the most powerful things to come out of our partnership was the development of intervention programming for men. Afghan culture is so often portrayed as profoundly segregated, and it initially seems counter–intuitive that in an attempt to empower women in their healthcare interactions we needed to focus on men as well. However, the community’s men serve as guardians, gatekeepers, and links to the outside world; ninety percent of the women interviewed indicated that they were reliant on a male relative for transportation, coordination of appointments, and, more tellingly, as decision makers for women’s health screening decisions. Our partnership was with the community, not only the women, and a variety of outreach programs to men—primarily focusing on general health and the link between women’s health and the health of the community—were initiated. Without full partnership and the use of community–based participatory research this essential aspect of an effective intervention program could have been missed.
“. . . to listen to a woman and to let her tell you what is bothering her. To not just ignore her and make her feel small”; “ . . . to be gentle, and caring’ and ‘Talk to her, explain everything . . .”
There are, of course, challenges to any partnership. When working cross culturally they serve to highlight the vastly different ways in which communities and cultures approach problems and make decisions. This project, by definition had to have a level of flexibility, which can be difficult when working with academic publishing timelines and grant reporting. We found the project to be a long–term process requiring patience and flexibility. Additionally we had to address clarity, even when speaking the same language, in a project operating with a minimum of three languages (English, Farsi, and Dari). As the academic partners it was essential that we move slowly and build trust in a community with a level of paranoia when faced with ‘official’ sources, both from their experiences in Afghanistan and the ongoing exploitation of the community by US agents looking for informants. As outsiders we were also working in a community with several waves of immigration experiences and complex social and cultural hierarchies of which we knew little. In this case face–to–face interactions through culturally meaningful ways such as ‘tea parties’ proved to create a welcoming and warm environment that paved the way for sustainable trusting relationships. [End Page 23]
The development of Afghan Women’s Breast Health Program required extensive negotiation, flexibility, and constantly open communication, and from it grew a trusting relationship that allowed us all to address a serious concern from a sustainable place; and was an education in the development of long–term, effective programming on both sides of the partnership. Several of our early participants have been hired as health facilitators, and programming continues to focus on a holistic model of individual and community health. The community partners knew that this was their program that was benefitting their community, and that ownership was a powerful motivator.
This narrative is intended as a composite of the work done by our partnership, particularly Rona Popal executive director of the Afghan Coalition, Joan Bloom of UC Berkeley Public Health, Aida Shirazi of UC Berkeley, and the women of the Afghan community who shared their stories with us.
Funding. The first pilot project was funded by the California Breast Cancer Research Program. The five year intervention program was funded by grant number 1UI54CA153506 from the National Cancer Institute.