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Publications

Journal Article Ppublish

PubMed: 42717602 DOI: 10.1111/hex.70830

Access to Supportive Care Among Australian Cancer Carers: Experiences of Priority Populations.

Health Expect 29(5):e70830

Authors: Stephanie P Cowdery, Patricia M Livingston, Thach Tran, Antonina Mikocka-Walus, Anna Ugalde, Eva Yuen, Hannah Jongebloed, Natalie Winter, Nicole Kiss, Nikki McCaffrey, Norah Refahi, Victoria M White

Affiliations

  • Centre for Quality and Patient Safety Research; Institute for Health Transformation, Deakin University, Geelong, Victoria, Australia.
  • Office of the Executive Dean, Faculty of Health, Deakin University, Geelong, Victoria, Australia.
  • School of Psychology, Deakin Lifespan Institute, Faculty of Health, Deakin University, Burwood, Victoria, Australia.
  • School of Nursing and Midwifery, Faculty of Health, Deakin University, Geelong, Victoria, Australia.
  • Monash Health, Clayton, Victoria, Australia.
  • Institute for Physical Activity and Nutrition, Deakin University, Geelong, Victoria, Australia.
  • Deakin Health Economics, School of Health and Social Development, Institute for Health Transformation, Deakin University.

Abstract

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.

MeSH

Caregivers, Neoplasms, Health Services Research, Linguistics, Health Literacy, Literacy