Zafè Neg se Mistè: a grounded theory study of end-of-life decision-making for Haitian American families in south Florida

The purpose of this study was to investigate the process used by Haitians and Haitian Americans who must make healthcare decisions for a terminally ill family member. There is a large population of Haitians and Haitian Americans in South Florida and there has been no research regarding their decision-making process about end-of-life healthcare. The study design was descriptive, applying constructivist grounded theory methodology. Data were collected using semi-structured, face-to-face qualitative interviews. Data analysis and collection occurred simultaneously. Participants (n=12) were purposefully recruited, with 11 from a single, faith-based community. The findings resulted in six concepts: (1) imminent or actual death, (2) disrupted unity, (3) managing disrupted unity, (4) consequences, (5) restoring unity, and (6) creating memories you can live with. These six concepts, elaborated by an additional 17 dimensions, were incorporated into a process model relating to the cultural value of communal unity to the end-of-life decision-making process. The implications of this study include a need to improve the congruence between the nursing care provided at this vulnerable time and the cultural values of this population. Successful access to this population through the structure of the faith-based community points the way to increasing access to appropriate end-of-life healthcare. Practice implications informed by caring science include the importance of nurses’ coming to know the family and listening to the unique care needs.