Performing care: emotion work and ‘dignity work’ – a joint autoethnography of caring for our mum at the end of life

Wilkinson, S ORCID: https://orcid.org/0000-0002-1564-5472 and Wilkinson, C (2020) Performing care: emotion work and ‘dignity work’ – a joint autoethnography of caring for our mum at the end of life. Sociology of Health and Illness, 42 (8). pp. 1888-1901. ISSN 0141-9889

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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.