Health expectations : an international journal of public participation in health care and health policy · 2026
Access to Supportive Care Among Australian Cancer Carers: Experiences of Priority Populations.
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Cowdery Stephanie P, Livingston Patricia M, Tran Thach, Mikocka-Walus Antonina, Ugalde Anna, Yuen Eva, Jongebloed Hannah, Winter Natalie, Kiss Nicole, McCaffrey Nikki, Refahi Norah, White Victoria M
Аннотация
BACKGROUND: Informal carers are essential in supporting people with cancer yet often experience unmet supportive care needs.
AIMS: The aim of this study was to examine (a) access to supportive care services (b) perceived barriers to accessing services, and (c) the potential influence of carer health literacy on access and barriers to supportive care among carers across three priority population groups (rural-remote-dwelling, LGBTIQA+ and culturally and linguistically diverse (CALD)).
METHODS: Cross-sectional online survey of Australian adult cancer carers. Supportive care use, access barriers, and health literacy (Health Literacy of Caregivers Scale - Cancer (HLSC-C)) were assessed. Logistic regression examined differences across priority groups, and mediation analyses explored the role of health literacy.
RESULTS: Among 1154 carers, 61.9% accessed some supportive care (46.7% formal services), yet 86.6% reported at least one barrier, with 71.0% reporting two or more. Common barriers were time constraints, service availability, and long wait times. Compared to non-priority population carers, rural/remote carers had higher odds of reporting limited local availability and services not available when needed (aOR = 5.08 for both). CALD carers had higher odds of reporting a barrier (aOR = 1.81), including long wait times, cost, and lack of culturally appropriate services (aOR = 33.03). Health literacy significantly mediated the association between CALD status and reported barriers.
CONCLUSIONS: Cancer carers have limited access to supportive care and face systemic barriers. Inequities remain, particularly for carers from rural/remote areas and those from CALD backgrounds. To improve equity, there is a need for co-designed, accessible interventions that address health literacy and the diverse geographic, cultural, and linguistic needs of carers.
PATIENT OR PUBLIC CONTRIBUTION: People with lived experience of cancer caregiving were included on this study's advisory committee. In this role, their expertise informed the study design, including the development of the questionnaire, the Participant Information and Consent Form (PICF), and recruitment processes. They were also invited to contribute to data interpretation and the preparation of this manuscript. The lead consumer representative (NR) is listed as a co-author on this manuscript.
AIMS: The aim of this study was to examine (a) access to supportive care services (b) perceived barriers to accessing services, and (c) the potential influence of carer health literacy on access and barriers to supportive care among carers across three priority population groups (rural-remote-dwelling, LGBTIQA+ and culturally and linguistically diverse (CALD)).
METHODS: Cross-sectional online survey of Australian adult cancer carers. Supportive care use, access barriers, and health literacy (Health Literacy of Caregivers Scale - Cancer (HLSC-C)) were assessed. Logistic regression examined differences across priority groups, and mediation analyses explored the role of health literacy.
RESULTS: Among 1154 carers, 61.9% accessed some supportive care (46.7% formal services), yet 86.6% reported at least one barrier, with 71.0% reporting two or more. Common barriers were time constraints, service availability, and long wait times. Compared to non-priority population carers, rural/remote carers had higher odds of reporting limited local availability and services not available when needed (aOR = 5.08 for both). CALD carers had higher odds of reporting a barrier (aOR = 1.81), including long wait times, cost, and lack of culturally appropriate services (aOR = 33.03). Health literacy significantly mediated the association between CALD status and reported barriers.
CONCLUSIONS: Cancer carers have limited access to supportive care and face systemic barriers. Inequities remain, particularly for carers from rural/remote areas and those from CALD backgrounds. To improve equity, there is a need for co-designed, accessible interventions that address health literacy and the diverse geographic, cultural, and linguistic needs of carers.
PATIENT OR PUBLIC CONTRIBUTION: People with lived experience of cancer caregiving were included on this study's advisory committee. In this role, their expertise informed the study design, including the development of the questionnaire, the Participant Information and Consent Form (PICF), and recruitment processes. They were also invited to contribute to data interpretation and the preparation of this manuscript. The lead consumer representative (NR) is listed as a co-author on this manuscript.