Abstract
In this paper we, twin sisters, present a joint autoethnographic account of providing end of life care for our mum who had terminal cancer. Using the theoretical framing of performance from Goffman's theory of Dramaturgy, we present the findings from a joint autoethnography, focusing on two key themes: performing emotion work and performing what we conceptualise as 'dignity work'. This paper's contributions are twofold. First, conceptually, this paper offers an important contribution to literature concerned with the sociology of illness, by critically engaging with Goffman's notion of frontstage and backstage performance, applied to the context of home care provided by family carers. The second contribution of this paper is methodological; we promote the under-utilised approach of a joint autoethnography and argue for its usefulness in the context of end of life care. We contend that the process of writing this paper was emotionally challenging, yet arriving at the final paper, which serves as a legacy of our mum, was cathartic. We argue for the usefulness of written diaries as a backstage arena through which other informal carers can think through, and come to terms with, experiences of death and dying.
Highlights
We wrote this paper because we want to encourage other informal carers to bring to the fore candid accounts of the lived experiences of being a carer for a family member at home
This paper offers an important contribution to literature concerned with the sociology of illness, by critically engaging with Goffman’s (1959) notion of frontstage and backstage performance in the context of home care provided by informal carers
We have presented a joint autoethnographic account of providing end of life home care for our mum who had terminal cancer
Summary
We wrote this paper because we want to encourage other informal carers to bring to the fore candid accounts of the lived experiences of being a carer for a family member at home This is important because research in the UK has suggested that, alongside the rewards and pride of caring for a loved one, many carers suffer considerable stress during long periods of caring for someone (Hospice UK 2019). The trend over recent years has been a reducing proportion of deaths in hospital, and an increasing proportion of people dying in their own homes This said, an individual’s home is often hidden from society, and informal care is notoriously under-recognised as a result (Wibberley 2013)
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