A qualitative exploration of the non-financial costs of cancer care for Aboriginal and Torres Strait Islander Australians

Cummins, Rachel, Preston, Robyn, Topp, Stephanie M., Taylor, Judy, Larkins, Sarah, Callander, Emily, Bell, Lorraine, Arley, Brian, and Garvey, Gail (2023) A qualitative exploration of the non-financial costs of cancer care for Aboriginal and Torres Strait Islander Australians. Australian and New Zealand Journal of Public Health, 47 (5). 100085.

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Abstract

Objective: Knowledge is growing about cancer care and financial costs for Aboriginal and Torres Strait Islander people. However, much remains unknown about the true costs of cancer care, encompassing financial, emotional, and spiritual aspects. We aimed to explore and explain how non-financial costs affect the health-seeking behaviours of these clients.

Methods: Following Indigenous research protocols, this research was led by Aboriginal and Torres Strait Islander researchers and guided by Indigenous Hospital Liaison Officers. In-depth interviews and focus groups were conducted with 29 participants (Aboriginal and Torres Strait Islander cancer clients, their carers, and cancer-care professionals) at two Queensland public hospitals.

Results: Four interwoven themes encompass non-financial costs of healthcare: leaving home and family; loss of control during cancer treatment; health of the spirit; social costs. The Aboriginal relational concept of ‘being held’ is useful in considering client, family, and carer as central to care with the Indigenous Hospital Liaison Officer two-way interpreting between the care and client team.

Implications for Public Health: Framing the reasons that clients and carers have difficulty in engaging in treatment as ‘costs’ enables a focus on how the health system itself is implicated in the disengagement of Aboriginal and Torres Strait Islander clients from treatment.

Item ID: 80519
Item Type: Article (Research - C1)
ISSN: 1753-6405
Keywords: Aboriginal and Torres Strait Islander, barriers to care, cancer, out of pocket costs, social costs
Copyright Information: © 2023 The Authors. Published by Elsevier B.V. on behalf of Public Health Association of Australia. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
Funders: NHMRC Centre of Research Excellence in Targeted Approaches To Improve Cancer Services for Aboriginal and Torres Strait Islander Australians (TACTICS), NHMRC Centre of Research Excellence DISCOVER-TT, National Health and Medical Research Council (NHMRC), Australian Research Council (ARC)
Projects and Grants: NHMRC TACTICS 1153027, DISCOVER-TT 1041111, NHMRC 1173004, NHMRC 1176651, ARC IN180100047
Date Deposited: 08 Feb 2024 02:00
FoR Codes: 42 HEALTH SCIENCES > 4206 Public health > 420602 Health equity @ 50%
45 INDIGENOUS STUDIES > 4504 Aboriginal and Torres Strait Islander health and wellbeing > 450409 Aboriginal and Torres Strait Islander health services @ 50%
SEO Codes: 20 HEALTH > 2002 Evaluation of health and support services > 200204 Health inequalities @ 50%
21 INDIGENOUS > 2103 Aboriginal and Torres Strait Islander health > 210303 Aboriginal and Torres Strait Islander health system performance @ 50%
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