Underserved Women with Breast Cancer at End of Life
|Institution:||University of California, San Francisco|
Shelley Adler , Ph.D. -
Beverly Burns , MS, BA, -
|Award Cycle:||2004 (Cycle 10)||Grant #: 10AB-1101||Award: $10,000|
|Award Type:||CRC Pilot Award|
|Sociocultural, Behavioral, and Psychological Issues>Sociocultural, Behavioral, and Psychological Issues: the human side|
This is a collaboration with: 10AB-1100 -
Initial Award Abstract (2004)
[This abstract describes an intended research project. Beginning, July 1, 2004, the team will utilize a small planning grant to gather necessary preliminary data, and strengthen the research plan and the scientific and community collaborations, in order to submit a CRC Pilot application in early Spring, 2005. Funding for this research depends on the success of that competitive application.] Our research team is a collaboration of university and community-based women's health providers and researchers who will study experiences at the end of life for underserved women with metastatic breast cancer. End-of-life care, in general, is poor in the U.S. For low income, underserved women this problem is more acute since the risk of recurrence and death is higher and their needs are less likely to be met. We will interview 10 women with metastatic breast cancer who are clients at CMCC, as well as their physicians, CAM providers, and informal caregivers. By focusing on the women's values, needs, expectations, and concerns we hope to find ways to support and strengthen a sense of meaning as they die. Additionally, we will focus on the communication that occurs between the clients and the providers during the end of life. Finally, by doing these interviews and providing a distilled version of the conversations (an ethical will) to the women, we hope to develop an intervention which may enhance quality of life. Our research questions are:
- What are the beliefs, values, concerns, expectations, and goals about end of life from the viewpoints of underserved women with breast cancer, their physicians, CAM practitioners, and informal caregivers?
- What communication about end-of-life issues take place among underserved women with breast cancer, their physicians, CAM practitioners, and informal caregivers?
- Can we take the information obtained from the interviews and distill it into a short (2-3 pages) coherent document (an ethical will) that might enhance the sense of meaning for a woman as she dies?
Final Report (2006)
The California Breast Cancer Research Program, on the basis of its scientific peer review and the California Breast Cancer Research Council’s programmatic review, awarded a research assistance grant to the University of California, San Francisco, and the Charlotte Maxwell Complementary Clinic to develop further the pilot Community Research Collaboration application submitted for CBCRP’s funding cycle X: “Underserved Women with Breast Cancer at End of Life.” The purpose of the award was to enable the Co-PIs to address scientific and collaborative issues raised during the scientific peer review of the pilot CRC application. We addressed the following issues in our work: the conceptual framework of end of life issues to be used in the study; the manner in which the analysis will investigate interrelationships among the sources of data to be gathered during the study; recruitment issues regarding physician and complementary and alternative medicine practitioner participation; and the issue of the acceptability by patients of the proposed interview instruments. We strengthened the collaborative elements of the application, including specifying a conflict resolution mechanism for disagreements which may arise between the partners and describing and improving the plans for translating results, facilitating learning, and for informing others about the results of the study. We submitted a revised Concept Paper and, subsequently, a revised pilot CRC application, which, due to the work facilitated by the research assistance resources provided by the planning grant, resulted in award funding.