End-of-Life Caregiver's Perspectives on their Role: Generative Caregiving

PURPOSE: To describe caregivers' constructions of their caregiving role in providing care to elders they knew were dying from life-limiting illnesses. DESIGN AND METHODS: Study involved in-depth interviews with 27 family caregivers. Data were analyzed using constant comparative analysis. RESULTS: Four categories were identified: centering life on the elder, maintaining a sense of normalcy, minimizing suffering, and gift giving. Generative caregiving was the term adopted to describe the end-of-life (EOL) caregiving role. Generative caregiving is situated in the present with a goal to enhance the elder's present quality of life, but also draws from the past and projects into the future with a goal to create a legacy that honors the elder and the elder-caregiver relationship. IMPLICATIONS: Results contribute to our knowledge about EOL caregiving by providing an explanatory framework and setting the caregiving experience in the context of life-span development.