What is participatory research?

participatory_researchAt Sapna, Participatory Research is our raison d’etre and shapes everything we do. Yes, we’re pretty passionate about participatory research. And you should be too!

But, first, what in the world is it? In the academic world, most research projects originate in the mind of the academic researcher. Typically, researchers ‘swoop’ in like helicopters, conduct their projects, and vanish back to the Ivory Tower with research publications in hand. Participatory research is completely different. In the participatory research process, community members participate at every stage of the research process—including choosing the research questions,  designing studies, delivering programs, and building on results. Participatory research is research that is conducting for and with the community.

Our founder and director Alison Karasz used to be a typical academic researcher. As a graduate student, a post doc, and later an Associate Professor at Albert Einstein, Alison conducted studies on South Asian women’s health and mental health for 15 years. But she really wanted to give something back to the community that had nurtured her and given so much. With Dr. Jean Burg, a family doctor working in the Bronx Bangladeshi community, Alison found a better way to give back through participatory research. Alison and Jean’s first participatory research project. “Bondhu” (‘friend’) was funded by the National Institutes of Health in 2007. Alison and Jean worked with a group of researchers and Bangladeshi women from the community to understand women’s depression—the feelings, the thoughts, the causes, and the solutions. Together the group developed a new depression treatment model that combines economic empowerment and state of the art depression treat. Unlike a typical research project, “ASHA” (‘hope’) is still alive at Sapna NYC.

To understand a little bit more how Participatory Research works, think of it in three steps.

  1. What are we going to study? Studies are designed to answer questions that matter to the community. Instead of theories, participatory research projects begin with people—the problems they face the questions they want to ask. Participatory research reflects the needs of underserved people—people who may lack a voice. To see a report on our first study, click here: Tension paper
  2. What are we going to do about it? Participatory research leads to interventions that sustain and nourish a community. Typically, participatory research projects address health or other service needs, environmental hazards. Ideally, participatory research contributes to advocacy for social justice and becomes a voice for change. Often, participatory research interventions are carried out by the people we serve. At Sapna NYC, we use Action Groups to carry out some of our projects. These are groups of women from the community who have a particular concern or health problem. After receiving services, treatment, or education, Action Group members receive additional training on communication, outreach, and leadership. Then they fan out into communities with a mission to reach and educate isolated women in need of services. Another way Sapna NYC involves the community is through our Community Health worker program. CHWs are nonprofessional, peer workers who have close ties to a community. Scientific evidence suggests that community health workers are an underutilized resource that can deliver culturally competent, carrying, low cost care. At Sapna NYC, CHWS deliver almost all our programs.
  3. How will we know if it works? Most service organizations develop programs, deliver them, and…never know if they work or not! In the typical nonprofit world, ‘outcomes’ usually means the ‘number of participants.’ But in participatory research, scientific evaluation is key to the whole thing. At Sapna NYC, we work with researchers to conduct state of the art evaluations of our programs. So we know exactly when our programs work and when they don’t! To see some of our scientific papers and reports, please click below:
    Apple paper
    ASHA Paper

Participatory Research and Our Theory of Change

Sapna’s Theory of Change is built around participatory research—especially in our holistic approach to program design and our emphasis on the connection between social justices and program design. Most of our programs work at multiple levels—addressing not just individual issues, but also problems at the family, community, and ultimately the societal and policy level.

At Sapna NYC, our theory is that no South Asian woman is an island! Effective interventions need to address problems at multiple levels. In the social sciences, this theory is called the Social Ecological Model. The SEM shows that people are embedded in social networks, communities, and a larger societal context. To read more about our multi-level programs, click here.