Individual Abstract within a Delegate Designed Symposium 2025 Joint Meeting of the COSA ASM and IPOS Congress

Towards carer-inclusive cancer care: findings from a national survey of informal carers  (126298)

Stephanie P Cowdery 1 , Trish Livingston 1 , Natalie Winter 1 , Sangeetha Thomas 1 , Victoria White 2
  1. Centre for Quality and Patient Safety Research, School of Nursing and Midwifery, Institute for Health Transformation Faculty of Heath, Deakin University, Burwood, Vic, Australia
  2. School of Psychology. Faculty of Health, Deakin University, Burwood, Vic, Australia

Objectives/Purpose: The rising prevalence of cancer and a shift toward outpatient and home-based care, places increasing burden on informal carers. Yet, the Australian Cancer Plan offers minimal acknowledgement of their role, reflecting a boarder lack of understanding and recognition of carers, their needs, and their complex interactions with the healthcare system. 

Sample and setting: A nationwide cross-sectional online survey was conducted between June 24, 2024, and January 31, 2025. Eligible participants were Australian residents aged 18+ who had cared for someone diagnosed with cancer in the past five years. 

Procedures: The survey utilised validated scales to assess psychological distress and carer burden; the DASS-21 and BSFC-s respectively. Demographic and patient clinical characteristics were collected, along with a set of items developed to assess perceived support for carers within the health system. Survey development was iterative based on a literature review and caregiver input. 

Results: A total of 1,214 carers completed the survey, the majority were women (91%) caring for someone with bowel, lymphoma, breast, lung, or prostate cancer. High rates of psychological distress were reported: 44% experienced elevated (moderate to extremely severe) depression and anxiety (41%), and 77% reported severe carer burden. Most carers felt unsupported by the health system: 87% were not asked about their needs and lacked sufficient support (76%) and information (61%). Less than half (49%) reported their caring role was valued by healthcare providers. For carers who spoke a language other than English, 75% were not offered information in-language, with only 20% offered access to a translator service. 

Conclusion and clinical implications: Despite their critical role, carers experience high distress, burden, and a lack of engagement from healthcare providers. Embedding routine needs assessments, improved communication and culturally responsive services into cancer care is vital to improve outcomes for both carers and people living with cancer.