Authentic Community Based Participatory Research with Ethnic Communities to Address Stigmatized Issues

Background:  Community-based participatory research (CPBR) is a highly collaborative approach to research that involves community partners equally in the process, and acknowledges all participants’ unique strengths and contributions.   CBPR combines knowledge with action to achieve social change, improve health outcomes and reduce health disparities, and can apply any variety of research methodologies.

Program background:  The Federation of Families (FOF) Miami-Dade Chapter is a non-profit organization that provides support, education and guidance to families of children and youth with emotional, behavioral, substance abuse and mental health needs. Their priority is improving mental health and substance abuse services in a manner that is responsive to the cultural diversity of the community.  FOF is an integral part of a county-wide children’s system of care transformation process, with a strong social marketing component.  One of the goals of social marketing is to reduce cultural stigma that prevents families from immigrant communities to seek services for behavioral health needs of children and adolescents. This presentation will describe three instances of CBPR to develop culturally competent stigma reduction tools in the Haitian and Hispanic communities of Miami, Florida: (1) graphic stories to reduce stigma of mental health services among Latino families; (2) radio stories to reduce stigma of metal health services among Haitian families; (3) a story bank to encourage discussion of CAM (complementary & alternative medicine) for behavioral health among Hispanics.

Evaluation Methods and Results:  These projects incorporated CBPR in all phases, from planning to development, implementation and evaluation.  The research was conducted based on the premise that community members and researchers collaborate as equals to conduct research on an area that affects the well being the community (not of the researcher).  This follows a key principle of CBPR where beneficiaries of the interventions must be equal partners in the planning and implementation of the programs. Loosely based on the Community PROMISE model, widely used in HIV community-based prevention, this research can be described in three distinct phases: community identification, role model story development, and pilot testing.  For each case, there was extensive research on the issue and the target community's attitudes toward the issue (community identification). Next there were story development sessions with community partners (role model story development) to identic common relatable situations that could be used to challenge stigmatized attitudes and behaviors.  Finally, stories were developed with the community partners taking lead roles, and evaluated at the pilot stage (pilot testing).  The three projects are currently in different stages of evaluation.  Evaluation data and processes will be presented.

Conclusions:  CPBR is a crucial component to develop story-telling based interventions to overcome stigma related to behavioral health services in immigrant communities.  The overarching process results in the development of community opinion leaders, and the products have been embraced as culturally appropriate and accurate.   Ongoing evaluation shows high levels of satisfaction with the CBPR process, the story-telling products created, and their positive influence on stigma reduction.

Implications for research and/or practice:  While CBPR is time consuming and requires training and adequate personnel, it is worth applying when developing stigma reduction tools for complex health topics in hyper-cultural contexts.