Community Based Participatory Research with Underserved Latina Women with Breast Cancer: Lessons Learned

Background: Nueva Vida (NV) is a Latino-led organization founded in 1996 by a group of breast cancer survivors and health professionals to fill the gap for culturally sensitive bilingual support services for the Latina community in the Washington, DC area (i.e. MD, VA, and DC).  NV offers comprehensive support services to Latinas with Breast and Cervical cancer through two complementary programs:  Survivorship Support and Access Support.  The founders of NV, who understood the need to engage in more rigorous research and study design, initiated this study with the aim of increasing awareness of the needs of Latinas with cancer and demonstrate program effectiveness. NV desired to partner with a research team that understood what it was like to work in the community and adapt research to the reality of a community organization setting.  They identified two faculty from Catholic University of America (CUA), who were interested and open to the idea of helping to design a study that would measure program effectiveness. NV believed that CUA knew how to work with the community and listen to what NV wanted to evaluate.  A grant proposal was compiled with input from both CUA and NV. It was submitted and accepted by Susan G. Komen Foundation.

Purpose and Method: The purpose of this community-based participatory research project was to evaluate the impact of the Nueva Vida (NV) service model over a 12 month period with respect to self-efficacy, psychological distress, and quality of life of the program participants.  The study was conducted between 2008-2010.  The sampling plan included recruiting 60 Latinas (30 per year) diagnosed with breast cancer from those who contacted NV over a two year period. 

Results: Twice as many participants enrolled than originally expected. Data supports that NV services decreases overall distress, depression, and improvements in quality of life.  Moreover, decreases in anxiety and somatization are trending toward significance. There was no change in self-efficacy.

Implications: Challenges surfaced throughout the process and have implications for social work practice and research.  These included loss of participants to follow up, conflicting priorities of staff members (i.e. in addition to the research responsibilities, staff members have other duties and responsibilities making it challenging to balance regular service delivery and research related tasks), balancing service provision and research simultaneously, and designing research that allows for the provision of standard NV services while maintaining rigor in study design.  Suggestions include maintaining collaboration throughout the process by scheduling regular meetings and keeping those meetings, not letting egos get in the way, being flexible (i.e. researchers open to the needs of the community and the community open to the needs of the researchers) and being mindful that everyone can learn something from listening.