End-of-life care in intensive care unit: Family experiences

Abstract

To elicit family members' experiences of end-of-life care in adult intensive care units. A descriptive, exploratory, qualitative design was utilised. A purposive sampling method was used to select a sample of seventeen family members who had relatives receiving end-of-life care in the intensive care units at three academic affiliated, tertiary/quaternary specialist hospitals in the Johannesburg and Pretoria regions, South Africa. An interview guide was used to facilitate individual, semi-structured interviews with the selected participants. Data collection and analysis took place simultaneously as interviews were transcribed verbatim immediately after the interview. Tesch's (1990) steps of analysis were used to establish the major themes that arose from the data. Lincoln and Guba's (1985) criteria for ensuring trustworthiness of qualitative research were applied. Five major themes emerged: "most of the time we are in darkness", "emotional support", "involvement", "family presence" and "spiritual support". The findings reflect inadequate care to the families who had dying relatives in the intensive care unit. Negative experiences expressed by the families outweighed their positive experiences, as most families were not happy with the care observed or personally received while their relatives were in the intensive care unit.