What family caregivers learn when providing care at the end of life: A qualitative secondary analysis of multiple datasets

Abstract

OBJECTIVE: Although growing numbers of family members provide end-of-life care for dying persons, caregivers frequently report lacking essential information, knowledge, and skills. This analysis explicates what family members learn during the process of providing end-of-life care. METHOD: Four qualitative interview studies of family caregivers to those at the end of life (n = 156) formed the basis of a secondary data analysis. RESULTS: Thematic and cross-comparative analyses found three general kinds of learning that were described-knowledge about: (1) the situation and the illness (including what to expect), (2) how to provide care, and (3) how to access help. Learning gaps, preferences, and potential inequities were identified. Further, in some instances, participant talk about "learning" appears to reflect a meaning-making process that helps them accept their situation, as suggested by the phrase "I have had to learn." SIGNIFICANCE OF RESULTS: Findings can inform the development of individualized educational programs and interventions for family caregivers.