Given that health disparities exist throughout the lifecourse, it is not a surprise that end of life (EOL) disparities exist along racial lines. Research shows that African Americans are less likely than Whites to have formal and/or informal discussions regarding EOL care. However, they are more likely to discuss medical decisions and EOL preferences with family members than with health care providers, and also more likely to discuss EOL medical decisions and preferences with family members than to complete formal advance directives. Such EOL communication within the family can lead to improved outcomes, including closer alignment with the wishes of the dying individual, less conflict between the physician and family, and less burden on the family. Furthering knowledge of EOL communication within families of seriously ill older adults could identify areas for intervention that would lessen the current racial disparities in EOL outcomes. Yet, we know little about the extent and/or predictors of such communications. The purpose of the proposed study is establish the means to examine EOL communication within African American families who have a family member (60 years or older) with a serious illness.
The specific aims are: 1) To test the feasibility of identifying and recruiting a primary and secondary family caregiver of 50 seriously ill older African Americans, and 2) To refine a semi-structured questionnaire and generate preliminary data on EOL content, style, and support for families of seriously ill older African Americans. Analyses of these preliminary data will examine relationships between characteristics of EOL communication (content, style, and support) and family members' evaluation of the communication (concerns and adequacy). To recruit family caregivers of seriously ill African Americans we will: (a) identify referral sources (community-based physicians, pastors, and funeral directors in North Carolina) who will contact seriously ill older adults; (b) obtain identifying information from the seriously ill adult for the two people who help him/her the most; and (c) recruit and interview the identified family caregivers. Data collected for Aim 2 will proceed in a sequential qualitative-quantitative mixed methods design. In the qualitative phase, caregivers of the first 16 seriously ill older adults (approximately 1/3 of entire sample) will participate in a semi-structured interview that will focus on open-ended questions. We will use the qualitative findings to develop a shorter and more quantitative questionnaire. The quantitative phase will consist of administering the new questionnaire to the caregivers of the other 34 seriously ill older adults (approximately 2/3 of the entire sample). This study will assist in developing recruitment strategies and measures for a larger, more in-depth study to learn ways in which communication can be improved so as to lessen unmet need and disparities in EOL care and outcomes. ? ? ?
