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Dr Emma Kirby is a UNSW Scientia Fellow in the Centre for Social Research in Health,

University of New South Wales, Australia, and a recent Australian Research Council DECRA Fellow.

Dr Emma Kirby is a sociologist, focused on experiences of health and illness. A main area of focus lies in exploring palliative and end-of-life care and interpersonal relationships in health care, to reveal how social interactions shape care and support during illness. She has attracted over AUD$2m in competitive research funding, and has over 50 publications in leading journals including Social Science & Medicine, Sociology of Health & Illness, Qualitative Health Research, Journal of Palliative Medicine, and the Internal Medicine Journal. She is currently leading a three year project which will offer policy and practice-relevant data to improve our understanding of the role and significance of informal carers in end of life settings.

Exploring palliative and end of life care: relations of care:

lived experience and choice in an Australian context

With an increasing number of Australians dying every year, developing a better understanding of the lived experience of patients, families and clinicians is critical. This is particularly pertinent given broad shifts in healthcare provision and responsibility, and with an ageing population. Drawing on a range of projects undertaken within a research team at UNSW Sydney, I focus in particular on the dynamics of formal versus informal support, and their respective and complex roles in end of life contexts. Here I use qualitative data from several case studies, funded by the Australian Research Council and focused on transitions to and through palliative care, cancer survivorship, and informal care, to explore the lived experience of the end of life from a range of stakeholder perspectives. First, drawing on studies of family carers of patients with advanced cancer, I discuss some of the everyday complexities of the formal-informal care nexus, highlighting the ways by which hope, denial, and stoicism among families inflect doctors’ decision-making and treatment trajectories in palliative and end of life care. Second, drawing on qualitative interviews and photo elicitation, I examine how living with cancer is constructed, understood and valued by those approaching the end of life, including constructions of time and relation. Third, I discuss the ways by which social context and social relations shape decision-making and discourses around health care choice for people living with cancer. Finally, I outline typologies of responses to cancer diagnosis (and often poor prognosis), to recontextualise diagnosis as inherently social in character. These discrete but interrelated projects seek to highlight concealed relations of suffering, burden and opportunity within contemporary caring relations in Australia and beyond.

All welcome