B10-C Why Not Ask the Experts? Family Caregivers' Experiences of Providing Palliative and End-of-Life Care

Abstract

It is well known that families provide the majority of palliative care. However, healthcare professionals often overlook the value of the knowledge and experience family caregivers have acquired. This study explores the specific and varied expertise of family members who cared for an older relative at the end of life. Fifty-eight qualitative, in-depth interviews were conducted with family caregivers, four to six months after the death of the family member they cared for. The purpose of the interviews was to enable participants to share their care giving and bereavement experiences prior to and following the death, as well as explore the circumstances of the family member’s last months of life and their death. The older decedents were Maori and New Zealand-European participants in the longitudinal study: Te Pu waitanga O Ng Tapuwae Kia Ora Tonu, Life and Living in Advanced Age: a Cohort Study in New Zealand (LiLACS NZ). A critical thematic analysis was applied to the data. During the interviews, study participants made reference to the diverse skills and abilities they drew upon while providing palliative and end-of-life care. Many of these required learning ‘on the job’ and, when examined more closely, reveal the expertise they accumulated over the course of the care they supplied to their relative. Three main themes identified are: 1) acquisition of medical and healthcare-related knowledge 2) coordination of care with healthcare providers, community services and family members and 3) implementation of hands-on nursing care. This presentation will discuss these themes in more detail, offering insight into the resourcefulness of family caregivers during a challenging time. This research supports a Health Promoting Palliative Care (HPPC) approach to palliative care that acknowledges family caregivers’ experience and positions them as experts. By adopting a similar stance, healthcare professionals could draw upon families’ expertise in order to enhance the palliative care services they provide.