“We Have to Be Strong Ourselves”: Exploring the Support Needs of Informal Carers of Aboriginal and Torres Strait Islander People with Cancer

Lorraine Bell, Kate Anderson, Afaf Girgis, Samar Aoun, Joan Cunningham, Claire E. Wakefield, Shaouli Shahid, Allan Ben Smith, Abbey Diaz, Daniel Lindsay, Adam Masa and Gail Garvey
Additional contact information
Lorraine Bell: Menzies School of Health Research, Charles Darwin University, Casuarina, NT 0810, Australia
Kate Anderson: Menzies School of Health Research, Charles Darwin University, Casuarina, NT 0810, Australia
Afaf Girgis: Centre for Oncology Education and Research Translation (CONCERT), Ingham Institute for Applied Medical Research, South Western Sydney Clinical School, University of New South Wales, Liverpool, NSW 2170, Australia
Samar Aoun: Public Health Palliative Care Unit, School of Psychology and Public Health, La Trobe University, Bundoora, VIC 3086, Australia
Joan Cunningham: Menzies School of Health Research, Charles Darwin University, Casuarina, NT 0810, Australia
Claire E. Wakefield: Kids Cancer Centre, Sydney Children’s Hospital, Sydney, NSW 2031, Australia
Shaouli Shahid: Centre for Aboriginal Studies, Curtin University, Bentley, WA 6102, Australia
Allan Ben Smith: Centre for Oncology Education and Research Translation (CONCERT), Ingham Institute for Applied Medical Research, South Western Sydney Clinical School, University of New South Wales, Liverpool, NSW 2170, Australia
Abbey Diaz: Menzies School of Health Research, Charles Darwin University, Casuarina, NT 0810, Australia
Daniel Lindsay: Menzies School of Health Research, Charles Darwin University, Casuarina, NT 0810, Australia
Adam Masa: Menzies School of Health Research, Charles Darwin University, Casuarina, NT 0810, Australia
Gail Garvey: Menzies School of Health Research, Charles Darwin University, Casuarina, NT 0810, Australia

IJERPH, 2021, vol. 18, issue 14, 1-16

Abstract: Informal carers provide an important role in supporting people with cancer. Aboriginal and Torres Strait Islander peoples experience higher cancer mortality than other Australians. To date, very little is known about the support needs of carers of Aboriginal and Torres Strait Islander adults with cancer. This article explored these needs through a qualitative study. Twenty-two semi-structured qualitative interviews and one focus group were conducted with carers of Aboriginal and Torres Strait Islander adults with cancer ( n = 12) and Aboriginal and Torres Strait Islander cancer survivors ( n = 15) from Queensland, Australia. Half of the carers interviewed were Aboriginal or Torres Strait Islander Australians. Interviews were transcribed, coded and thematically analysed following an interpretive phenomenological approach. Thematic analysis of carer and survivor interviews revealed four key themes relating to carers’ needs: managing multiple responsibilities; maintaining the carer’s own health and wellbeing; accessing practical support and information; and engaging with the health system. Within these overarching themes, multiple needs were identified including specific needs relevant for carers of Aboriginal and Torres Strait Islander peoples, such as advocating for the patient; accessing Indigenous support services and health workers; and ensuring that the cultural needs of the person are recognised and respected. Identifying the needs of informal carers of Aboriginal and Torres Strait Islander cancer patients will enable greater understanding of the support that carers require and inform the development of strategies to meet these areas of need.

Keywords: family carers; cancer; Indigenous; unmet needs; cultural needs; qualitative (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2021
References: View complete reference list from CitEc
Citations: View citations in EconPapers (1)

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