Patients with advanced cancer and family caregivers’ knowledge of health and community services: a longitudinal study

Authors

  • Catherine M. Burns BA BSASW MPhil,

    Corresponding author
    1. Social Work Department, The Canberra Hospital, Canberra, Australian Capital Territory; School of Social Administration and Social Work, Flinders University, Adelaide, South Australia; and The Cancer Council South Australia, Unley, South Australia;
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  • Tracy Dixon BMath BSc(Hons),

    1. National Centre for Epidemiology and Population Health, Australian National University, Canberra, Australian Capital Territory;
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  • Wayne T. Smith FAFPHM PhD,

    1. Centre for Clinical Epidemiology and Biostatistics, University of Newcastle, Newcastle, New South Wales
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  • Paul S. Craft FRACP MPH

    1. Medical Oncology Unit, The Canberra Hospital, Canberra, Australian Capital Territory, Australia
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Correspondence
Ms Kate Burns The Cancer Council of South Australia PO Box 929 Unley South Australia 5061 Australia E-mail: catherine.burns@flinders.edu.au

Abstract

The present study examines the knowledge of health and community services reported by patients with advanced cancer and their family caregivers, and compares patient-stated use with their knowledge of availability. A longitudinal study of the quality of life of patients with advanced cancer was conducted out of the cancer services of The Canberra Hospital, a teaching service, in Canberra, Australian Capital Territory, Australia. Some 317 subjects were recruited sequentially, comprising patients (n = 181) and their nominated family caregivers (n = 136). Patients were more aware of the available health and community support services compared with their caregivers, and differences were significant for most allied professional services, as well as some key supportive care institutions and community programmes. Knowledge of community support services was variable and low for those specifically associated with terminal care. While congruence of knowledge for dyads was quite low in some areas, overall household knowledge was high. The identified sources were mainly non-medical. Nurses, social workers and alternative practitioners, as well as family, friends and commercial sources were the main categories which were identified. No statistically significant changes in knowledge or sources of information occurred over time. Further longitudinal research would assist healthcare teams to understand the role of health and community services in the advanced cancer setting. The identification of systemic and regional weaknesses in communication may assist in improving family knowledge and improve timely access to important supports in the advanced cancer setting.

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