The experience of supporting a dying relative: Reflections of caregivers

Abstract

This article describes family caregivers' responses to a National Inquiry into the Social Impact of Caregiving for Terminally Ill, initiated by Palliative Care Australia, which aimed to influence policy and practice to support caregivers. Caregivers recounted their experiences of supporting a dying relative and reported their unmet needs and the impact that the caregiving role had on their financial, physical and psychosocial well-being. The issues raised by caregivers were consistent with data obtained from a wide cross-section of service providers and a number of findings were congruent with empirical literature related to family caregiving. Caregivers' reports confirm that, to maintain their health and well-being, they need adequate resources, fairer remuneration, quality respite care, education about the role, equipment, psychosocial support, home-help, improved access to the paid workforce and to gain community recognition. Such collected evidence reinforced the importance of policy responses and resource allocations that are focused on helping caregivers perform a vital role into the future.