Understanding the Burden on Palliative Care Home Carers: A Phenomenological Account

By Andrew M. Guilfoyle, Lauren Breen, Colleen Fisher and Moira O’Connor.

Published by The Social Sciences Collection

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Article: Print $US10.00
Article: Electronic $US5.00

Supporting carers is a key part of the Australian Federal Government’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 through 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.

Keywords: Support Needs of Carers, Palliative Care

International Journal of Interdisciplinary Social Sciences, Volume 3, Issue 8, pp.39-48. Article: Print (Spiral Bound). Article: Electronic (PDF File; 617.388KB).

Dr Andrew M. Guilfoyle

SENIOR LECTURER, School of Psychology and Social Sciences, Edith Cowan University, Perth, WA, Australia

Dr. Andrew Guilfoyle, Ph.D., is a Lecturer in the School of School of Psychology and Social Science teaching qualitative research. Andrew’s research has focused on improving the provision of health services, community health and well being, particularly for children and families including Indigenous and other cultural groups.

Dr. Lauren Breen

post-doctoral research fellow, School of Psychology and Social Science, Edith Cowan University, WA, Australia

Her Ph.D., is a Postdoctoral Research Scholar in the Centre for Social Research, School of Psychology and Social Science, Edith Cowan University. Dr Breen’s research interests centre on applied research in four domains-death and dying, grief and loss, children and families, and health, disability, and wellness. She is particularly interested in naturalistic research designs and qualitative methodologies.

Dr. Colleen Fisher

Senior Lecturer, Public Health, University of Western Australia, Perth, WA, Australia

Dr. Colleen Fisher is a senior lecturer in the School of Population Health at the University of Western Australia. She has been involved in research into psychosocial aspects of palliative care, health promotion, women’s heatlh, and prevention, early intervention and responses to family and domestic violence.

Dr. Moira O’Connor

Senior Research Fellow, Public Health, Curtin University, Perth, WA, Australia

Dr. Moira O’Connor is a Senior Research Fellow in the WA Centre for Cancer and Palliative Care. Her main areas of research include: psycho-oncology and psychosocial aspects of palliative care; women’s health; and health psychology. Her current projects include the role of the community pharmacists in palliative care; breast cancer follow up: what works best; how health professionals communicate about sexuality and intimacy issues; and carers’ needs in palliative care.


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