Abstract:
Purpose: To address a gap in the research by exploring bereaved family caregivers' experiences of the transition of their family member from a hospice inpatient unit (HIPU) to an aged residential care (ARC) facility at the end of life. Methods: Face to face interviews were conducted with a purposive sample of nine family caregivers who were the main providers of physical and emotional support to their family member at home who was transferred from one HIPU to an ARC facility at the end of life. Interviews considered: the family caregivers' journey into the caregiving role, their experience and the effects of the transition process of their family member from home to the HIPU and then to ARC, touching on aspects of bereavement and rediscovering resilience. Results: Family caregivers experienced a range of impacts and effects from transitions involving their family members from home to HIPU and on to an ARC facility where they died. Four main themes crafted from the participant interviews encompassed their experiences: 1. care at home isn't always possible, 2. hospice as a stepping stone, 3. gaps of care in care, and 4. aftermath. Thirteen subthemes were also identified. Implications: Understanding family caregivers' experiences and needs leading up to, during, and after transition of their family member from a HIPU to an ARC facility at the end of life is important because this knowledge promotes health professionals' recognition of family caregivers' contribution to palliative care at home and in other care settings, acknowledges the demands on their physical, emotional, and social wellbeing, identifies what supports are available and those needed , supports their efforts in advocating for the best quality of care for their family member, and may facilitate less complex grief and bereavement. Results indicate the ongoing need to improve partnership and communication between family caregivers, ARC facility staff, and hospice and palliative care service professionals in the light of increasing need for palliative care provision, in different care settings.
