Decisions and caregiving: end of life among blacks from the perspective of informal caregivers and decision makers.

This focus group study describes end-of-life caregiving and decision making among blacks from the perspective of the informal caregivers and decision makers. The Behavioral Model of Health Services Use framed the study. Five focus groups with a total of 53 informal caregivers/decision makers were conducted. A qualitative phenomenological approach was used for the data analysis. Findings are presented under the themes of end of life caregiving and decision making roles, dynamics and process, and beliefs and values. The common thread of care giving and decision-making within relationship and six subthemes were identified. Findings also suggest the need for support and inclusion of designated informal caregivers and decision-makers in the advance care planning process early in the disease trajectory.