Hospice family caregivers' preparedness to provide care during the death vigil.

Abstract

Family caregivers of hospice patients face numerous demands during their family member's final days of life, including escalating symptom management needs, physical strain, and intense emotional challenges. Informed by preparedness theory and the National Cancer Institute framework for patient-centered communication (adapted for family caregivers), this qualitative descriptive study explored the knowledge, skills, and presence family caregivers required to fulfill their role as their family member was actively dying, as well as their perceptions of their communication with hospice teams during this particularly stressful time. Data for this secondary analysis were drawn from individual interviews with a convenience and snowball sample of 50 bereaved caregivers who had participated in a broader cross-sectional study of hospice death vigils, defined as gatherings of family members and friends around a person who is in the final week of life. Interview transcripts were analyzed using an abductive content analysis approach, combining artificial intelligence (AI)-assisted coding with investigator review. Findings indicated that, caregivers received information, identified ways to provide comfort, and recognized the importance of being present as their family member was dying however, their actions were often reactive rather than proactive, reflecting a potential gaps in preparedness. Caregivers highlighted supportive communication with hospice providers and identified opportunities for improving communication to support their preparedness to provide adequate care and maintain their own well-being during their family member's final days.