Understanding the burden on palliative care home carers: A phenomenological account

Abstract

Supporting carers is a key part of the Austrlian Federal goverment's aged care policy. If novel ways of supporting carers can be found, then the financial and social benefits flowing from terminally ill people being able to be cared for at home will benefit not only the particular individuals involved, but health and social institutions Australia-wide. This occurs throught the incorporation of the patient, primary caregiver, the family and their support networks into the plan of care. The research completed involved in depth interviews with in home palliative care providers (n=18). In this paper we explore a theme around which carers spoke of negotiating the often disparate values and beliefs held by the patients and health professionals involved in their care, and defending and advocating for the needs of the patients. The data we present here illustrate a potential power differential inherent in the roles of 'professional' and 'carer' and highlight the potential for conflict when health professionals, unwittingly, impose their values, beliefs, and ideals onto the patients and/or carers. The carer's role as the nexus between the patients and the professionals might be an additional burden of care that, to date remains unacknowledged in palliative care research and practice. Suggestions for future research, and the translation of research into practice, are provided.