Women with stage 4 breast cancer face significant adjustment challenges that differ from women who have early breast cancer. Studies identify that stage 4 breast cancer women experience a negative association of symptom distress and symptom management self-efficacy.
Aim
To develop relevant and meaningful care for stage 4 breast cancer women, a key strategy is to investigate their health literacy, diverse experiences and needs. Strengthening and improving equity for these women, through using a validated approach, will identify key priorities for the development of sustainable care interventions to promote self-empowerment, beyond clinical guidelines.
Method
In 2022, two cancer care centres in rural New South Wales, recruited 26 participants with stage 4 breast cancer, aged 42 – 80years. The Health Literacy Questionnaire (HLQ) was implemented as a validated multi-dimensional tool designed to identify health literacy strengths and limitations. The HLQ directly investigates how well patients can appropriately access and use health care information.
Results
The data from the HLQ highlighted key areas. The findings suggest trust of healthcare providers during this stage is difficult, leading to poor engagement. This impacted gaining knowledge to self-manage and created negative feelings. Some participants expressed feeling unsupported even during medical consultations. Thus, participants identified not being proactive in advocating for themselves and accepted information, as unable to ask questions. Problems extended to understanding written health information and medication instructions. Overall, difficulties navigating health information and being dependent on others for guidance was a common response.
Conclusion
The study represented the first use of the HLQ approach with this cohort. The results contribute to redefining care, improve insight into health literacy, understanding areas impacting negative association of symptom distress and self-management, extending on previous studies. Future direction is developing a model of care as a pathway to empower this cohort and translational all across tumour streams.