Beyond Individual Illness: Using Illness Narratives to Explore the Navigation of Care and Work When a Relative Is Dying

超越个体疾病:运用疾病叙事探讨亲人临终时如何兼顾照护与工作

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Abstract

Sociologists have frequently written about family involvement in end-of-life care, highlighting the emotional and physical labour involved. Research has also examined how individuals juggle paid work commitments with informal long-term care. Less is known about the impact of illness trajectory on care and work in the temporarily ambiguous context of terminal illness. Drawing on qualitative data collected using in-depth interviews and analysed thematically, this article explores how individuals manage paid work commitments when they are informally caring for a relative who is terminally ill. Informed by illness narratives as retold by bereaved relatives, this article examines the impact that illness can have on a 'carer's' ability to engage in paid work. This article concludes by highlighting the temporal and socially embedded nature of care. By uncoupling illness experience from the individual sufferer and using it as a vehicle through which to analyse other social lives and social phenomena (namely, work and care), this article offers a novel contribution to the sociology of health and illness and to wider sociological discussions on the use of narrative. It also extends the focus of sociological debates on care by problematising the relationship between care and work across the boundaries of life and death.

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