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Caregiving for the terminally ill: at what cost?

WA Centre for Cancer and Palliative Care, School of Nursing Midwifery and Postgraduate Medicine, Edith Cowan University, Churchlands, Western Australia, s.aoun{at}ecu.edu.au

Linda J Kristjanson

WA Centre for Cancer and Palliative Care, School of Nursing Midwifery and Postgraduate Medicine, Edith Cowan University, Churchlands, Western Australia

David C Currow

Department of Palliative and Supportive Services, Flinders University, South Australia

Peter L Hudson

School of Nursing and Centre for Palliative Care, University of Melbourne, Melbourne

This literature review exposes the nature and extent of physical and psychosocial morbidity and economic disadvantage, home palliative caregivers suffer as a direct result of their caregiving role. Research has demonstrated that caregivers providing support to individuals receiving palliative care report unmet needs for information, communication, service provision and support from health and community services. Three sets of challenges are highlighted in this literature review which help explain why the needs of home palliative caregivers are largely unmet: (i) barriers to seeking help; (ii) a dearth of research-based interventions focused on reducing the negative aspects of caregiving; and (iii) a number of impediments to effective policy and service development for family caregivers. Furthermore, invited submissions from caregivers echoed and confirmed the issues reported in the literature. Recommendations for enhancing caregiver support are outlined.

Key Words: informal care giving • unmet needs • impact of caregiving • service provision • barriers • palliative care research

Palliative Medicine, Vol. 19, No. 7, 551-555 (2005)
DOI: 10.1191/0269216305pm1053oa


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