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Research Grants Awarded
Designing a Narrative Intervention for Underserved Latina Women with Breast Cancer at the End of Life
Breast Cancer Disparities
The burden of breast cancer mortality is disproportionately borne by low-income women, particularly those who are women of color and/or who are not proficient in English. The Charlotte Maxwell Complementary Clinic (CMCC) and UCSF are collaborating on this community-based participatory research project because there is a great need for an inclusive, culturally sensitive approach to palliative care, but what little is known about quality end-of-life care may not be translatable or applicable to underserved Latina women dying from breast cancer. This collaborative pilot study will (1) collect and analyze qualitative data to describe and examine beliefs, values, concerns, expectations, and goals regarding the end of life as they are expressed and understood by participants (15 Latina CMCC patients?Spanish monolingual or bilingual, 15 physicians, 15 CAM practitioners, 15 informal caregivers); and (2) develop and pilot test an ethical will intervention (to be evaluated in a subsequent randomized, controlled trial). We will use an ethnographic approach to data collection (through a series of in-depth interviews with a total of 60 participants) and concurrent qualitative analysis of interview and field note data. To facilitate the process of creating an ethical will among women who may be too unwell to write one themselves or who are less comfortable with written communication, we will assemble the ethical wills from interview transcripts and present them to participants for their input and approval. Finding meaning at the end of life is particularly poignant for underserved, ethnic minority women with breast cancer; these women are diagnosed at relatively younger ages and with more advanced disease and are therefore confronted with issues of dying much earlier in the life course than is expected. The ethical will has the potential to decrease suffering by enhancing meaning for underserved women in the last stage of life.
End-of-life care for low-income women of color in the U.S. is an acute problem: these underserved women have a higher rate of recurrence and death, but their needs are less likely to be met, possibly due to language, cultural, educational, economic, and other sociocultural factors. We will interview Latina women with metastatic breast cancer who are clients at the Charlotte Maxwell Complementary Clinic (CMCC), as well as their physicians, CAM providers, and informal caregivers. By focusing on the women's values, needs, expectations, and concerns, we will examine ways to support and strengthen a sense of meaning as they die. Our research questions are: (1) What are the beliefs, values, concerns, expectations, and goals about the end of life from the viewpoints of underserved Latina women with breast cancer, as well as the people who provide their care? (2) Can we take the information obtained from the interviews and distill it into a brief document (an "ethical will") to enhance the sense of meaning for a woman as she dies? This project consists of recruiting and interviewing a total of 60 participants: underserved Latina CMCC clients (who speak Spanish or English), as well as the physicians, CAM providers, and informal caregivers that the women describe as being most integral to their care. The research team consists of two women with cancer who were low-income at the time that they were diagnosed; two healthcare providers for underserved women with breast cancer; and two researchers who have focused their work on underserved populations as well as women with breast cancer. Our long-term goal is to develop a patient-centered model of culturally-appropriate end-of-life care that takes into account that the burden of breast cancer is heavier for underserved women of color.