End-of-Life Family Decision-Making From Disclosure of HIV Through Bereavement

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Abstract

End-of-life decision-making is conceptualized as the foreground against the background of a family, transitional model of illness with the human immunodeficiency virus (HIV). Both foreground and background represent new knowledge and theory development emerging from six research studies over a 7-year period. The research was phenomenological, longitudinal, ethnographic, descriptive survey, narrative, and grounded using the constant comparative method. In all, 100 families were studied in their home settings in the District of Columbia and 29 states across the United States. Throughout the transitional process from disclosure of HIV through bereavement, families engaged in end-of-life decision-making. Their decision-making style was primarily cognitive or primarily emotional or somewhere in between. Families using a cognitive style of decision-making were less disrupted and more able to surmount hurdles and move toward goals. Exemplars from 23 families illustrated family decision-making and components of the transitional, family model.

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