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

Abstract

A qualitative exploration of the non-financial costs of cancer care for Aboriginal and Torres Strait Islander Australians Rachel Cummins,1,† Robyn Preston,2,3, * Stephanie M. Topp,4 Judy Taylor,3 Sarah Larkins,3 Emily Callander,5,6 Lorraine Bell,7,8 Brian Arley,9 Gail Garvey7,10 1 Djiru/Jirrabal/Bwgcolman, College of Medicine and Dentistry, Bebegu Yumba, James Cook University, Townsville, Australia 2 Public Health, College of Science and Sustainability, School of Health, Medical and Applied Sciences, CQUniversity, Townsville, Australia 3 College of Medicine and Dentistry, James Cook University, Townsville, Australia 4 College of Public Health, Medical and Veterinary Sciences, James Cook University, Townsville, Australia 5 Monash University, School of Public Health and Preventive Medicine, Melbourne, VIC 3004, Australia 6 Health Services Management, University of Technology Sydney, School of Public Health, Sydney, Australia 7 Menzies School of Health Research, Darwin, Northern Territory, Australia 8 Australian e-Health Research Centre CSIRO, Brisbane, Queensland, Australia 9 Daru, Tudugal, Menzies School of Health Research, Charles Darwin University, Darwin, Australia 10School of Public Health, Faculty of Medicine, The University of Queensland, Darwin, Australia Submitted: 29 December 2022; Revision requested: 1 August 2023; Accepted: 5 August 2023 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. Keywords: Aboriginal and Torres Strait Islander, cancer, out of pocket costs, social costs, barriers to care