Underserved Women with Breast Cancer at End of Life
Creators: name: University Of California Office Of The President
Publisher: name: University of California Office of the President
publisherIdentifier: https://ror.org/00dmfq477
publisherIdentifierScheme: ROR
Year: 2024

description: Introduction: End-of-life care, in general, is extremely inadequate 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, and also their physicians, CAM providers, and informal caregivers. We will focus on the women's values, needs, expectations, and concerns at end of life, as well as the communication that occurs between the clients and the providers. Our ultimate goal is to develop a model of patient-centered care from the pilot information we collect and to continue our work by applying for a full CRC to design and test an intervention to improve the quality of life at end of life for underserved women with metastatic breast cancer.
 
 
 
 
 
 
 
 Research Questions: 
 
 1. 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? 
 
 2. What communication about end-of-life issues takes place among underserved women with breast cancer, their physicians, CAM practitioners, and informal caregivers?
 
 
 
 
 
 
 
 Methods: This project consists of recruiting and interviewing 10 underserved women with metastatic breast cancer from among the clients at the community-based Charlotte Maxwell Complementary Clinic. The physician (oncologist), CAM provider, and informal caregiver that the client has selected as being most integral to her care will also be interviewed. Tapes of these interviews will be transcribed and their contents studied by the research team in order to develop an understanding of the needs of underserved women with metastatic breast cancer at end of life and how best to meet these needs.
 
 
 
 
 
 
 
 Innovative Elements: The research team consists of a woman with cancer who was low-income at the time that she was diagnosed; two women who are 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. We have formed a uniquely qualified team to study and work with an underserved community population.
 
 
 
 
 
 
 
 Community Involvement: We will form a five-member community advisory committee of CMCC clients with breast cancer; and 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 low income women, particularly low income women of color.
 
 
 
 
 
 
 
 CRC Award: We chose to apply for funding for this research study through the pilot CRC mechanism because of our interest in conducting the project using a participatory research approach. The research questions were introduced by CMCC. CMCC and UCSF will work collaboratively through all the phases of the pilot—from instrument design through data collection and analysis, to dissemination of findings. In addition to the fact that our research team brings together women with a variety of clinical, research, and advocacy backgrounds, we will increase our awareness of participant and community concerns by working with a five-member advisory committee comprised of clients from the broader CMCC community. This community advisory committee will be involved in discussions of recruitment strategies, instrument development, dissemination of findings, and development of an intervention derived from pilot data.