Family perceptions of the transition from hospital to home palliative care: a phenomenological study

Abstract

Purpose Home palliative care allows people in a palliative situation to remain in the comfort of their own homes. However, this transition poses significant challenges to family members, requiring logistical, physical, and emotional adaptations. This study aimed to explore the lived experiences of family members caring for a person in a palliative situation at home, focusing on the challenges, emotions, and coping strategies during the transition from hospital to home. Method A descriptive phenomenological study was conducted with 20 family members involved in the care of patients followed by three community palliative care teams in Portugal. Data were collected through individual interviews and analyzed using Giorgi’s method. Results Three themes emerged: (1) Emotional and Relational Experience of the Family Member, (2) Family’s Challenges and Adaptation, and (3) Support for the Family. Despite the burdens, care is viewed as a moral and emotional responsibility. Support from palliative care teams and self-directed learning were key coping strategies. Conclusions The study deepens understanding of the family experience during the transition to home palliative care, highlighting the complexity of this process and the need for emotional, organizational, and educational support.