Southeast Asian Breast Health Navigation

Institution: Orange County Asian and Pacific Islander Community Alliance, Inc.
Investigator(s): Marjorie Kagawa-Singer, Ph.D., R.N., M.N., M.A. - Mary Anne Foo, M.P.H., CHES -
Award Cycle: 2006 (Cycle 12) Grant #: 12AB-3000 Award: $187,500
Award Type: CRC Pilot Award
Research Priorities
Community Impact of Breast Cancer>Disparities: eliminating the unequal burden of breast cancer

Initial Award Abstract (2006)
Southeast Asian (Cambodian, Laotian, Thai, and Vietnamese) women have the lowest rates of breast cancer screening among Asian and Pacific Islander women. Many Southeast Asian (SEA) women encounter enormous barriers to breast cancer screening and treatment services due to limited English proficiency; lack of transportation; living in impoverished conditions; working long hours and not being able to take time off from work for health care appointments; and lack of information and resources for their communities. While some studies exist showing lower screening rates among SEAs, there are very few studies and programs focused upon the Cambodian, Laotian, Thai, and Vietnamese communities in relation to cancer prevention and treatment. In recent years, there has been an increasing emphasis on the importance of employing community health outreach workers and navigators to reach those who have traditionally been labeled as “hard-to-reach.” However, while some studies have defined, described, and evaluated health navigator programs using a hospital and clinic-based model, relatively few studies have examined health navigator programs in community-based settings. And no studies to date have looked at patient navigation in Southeast Asian communities. Therefore, we are proposing a study to document what patient navigators do and describe how they perform their work to help women in the SEA communities to access breast health services.

By identifying and understanding the essential elements involved in a community-based patient navigation program, we will then develop a formal curriculum that can be used to train patient navigators helping women with breast health services in other underserved communities.

We seek to answer the following three research questions: 1) what are the important factors at the individual, interpersonal, and larger community levels that need to be addressed in an effective breast health navigation program? 2) how do navigators culturally tailor their strategies to help Southeast Asian women obtain necessary services from initial breast cancer screening exams through diagnostic, treatment and rehabilitation services? 3) what specific training components are necessary in a navigation program curriculum to successfully increase access to and utilization of quality breast health services for SEA women?

The project focuses on two main ideas: 1) that there are certain activities that can be done through patient navigation (interpretation, transportation, case management, social and family support, education, improved relations and communications with their provider, resource development, etc.) that help support a low income, limited English speaking Southeast Asian woman to be able to access breast health services; and 2) that this information can be used to develop a training curriculum for patient navigators helping women with breast health services in other underserved communities.

We will interview 24 medical care providers and 14 community health navigators and will train bilingual/ bicultural facilitators to conduct focus groups with 120 women to understand their experiences and perceptions of the elements needed in a patient navigation model to help support women gaining access to breast health prevention, diagnostic, treatment, and rehabilitation services. Findings from our study will also help us to develop a formal patient navigation curriculum that can be tested for its impact on increasing breast health among low income SEA women.

No published studies have looked at patient navigation in SEA communities, so our project will be the first of its kind to look at patient navigation for breast health services in these communities. The project is also unique in that we will be studying navigation processes and experiences not just from the navigator point of view, but from the multiple perspectives of the patient, medical provider, and navigator in order to identify the essential elements and describe the processes, skills, and strategies needed for a successful patient navigation training curriculum and program.

SEA community members are involved in every aspect of the program, including acting as co-investigators and advisory committee members. Community members, leaders, and health workers as well as breast cancer survivors and advocates helped to initiate and conceptualize our research study. They will also help guide the development of focus group and interview questions, review of translations, and will help us to interpret and disseminate our study findings. Our interviewers come from the SEA community and are all bilingual and bicultural and have more than 20-30 years of experience working in their communities. In addition, community members will help us to develop easy-to-understand reports summarizing the study findings and will organize bilingual community forums to publicize and disseminate the study results.

Final Report (2008)
Southeast Asian women have the lowest rates of breast cancer screening among Asian and Pacific Islander women. While some studies exist on the lower screening rates among Southeast Asians, there are very few studies and programs focused upon the Cambodian, Laotian, Thai, and Vietnamese communities in relation to the barriers and resources for cancer prevention and treatment. In recent years, community health outreach workers or "navigators" have shown success in guiding women through the health care system to access needed health care services such as breast health exams and follow-up care. Our study is the first to look at the process of patient navigation in Southeast Asian communities.

The aims of our study are to interview a total of 120-150 community members, patient navigators, and medical health providers to identify and understand the essential elements involved in tailoring community-based patient navigation programs to community needs and resources. The results of this study will help us to develop a formal curriculum to better train patient navigators who are assisting underserved, low income, and limited-English speaking women to access quality breast health services. To date 13 focus groups totaling 108 participants have been conducted, and three in-depth interviews with patient navigators have been completed.

Focus groups and interview transcriptions and translations are taking place and the balance of in-depth interviews with patient navigators and providers will be completed by July 2008. The mixed-methods will help us to identify the important ecological factors that influence health navigation for Southeast Asian women, to document and describe the roles and skills of community health navigators, and allow us to use grounded theory in analyzing and synthesizing the data to develop a formal patient navigation curriculum/model.

Data collection and data analysis will be completed by the end of Summer 2008, with community report backs and the development of a curriculum to take place in Fall 2008. This curriculum will be used to help train and develop community health navigators working to reduce health disparities in breast health among Southeast Asian communities.

Symposium Abstract (2007)
The goal of our research project is to examine, from the perspective of patients, navigators, and medical health system providers, the specific aspects of current community-based patient navigation efforts that influence and support Southeast Asian women at different stages of the cancer spectrum to obtain breast health care and services. We plan to use the pilot study findings to develop and refine a patient breast health navigation curriculum and model that can be tailored to the community needs and resources of Southeast Asian women in California as well as other underserved, uninsured, low-income, and limited-English proficient immigrant and refugee communities.

Our study involves qualitative focus groups and interviews with 100-120 Cambodian, Laotian, Thai, and Vietnamese patients, 8-14 navigators, and 16-24 providers to identify and document the essential elements they feel are needed for an effective, community-based patient health navigation program. At the symposium, we will present the preliminary results and findings from the project. We plan to focus on how navigation strategies are tailored for women at different stages of the cancer continuum, highlighting important community and cultural issues that may differ across the four Southeast Asian groups. We will also discuss ways in which trust, credibility, and respect are established by the health navigators and how different types of social support roles, interpersonal relationships, and social networks may affect navigation. All of these components are important elements that we anticipate will need to be included in a training curriculum for community-based patient health navigators.

In recent years, there has been increasing emphasis on the importance of community health workers and navigators in helping women access and navigate services across the cancer care continuum, from screening through diagnosis, treatment, and recovery. By looking at the specific barriers, facilitators, and lessons learned from our previous community-based health navigation programs, we hope our work will contribute new and useful strategies for designing cost-effective and culturally relevant breast cancer prevention and control programs that take into account the unique environmental and social characteristics of underserved communities.