Background and Aims: Brain cancer causes physical, psychosocial, and cognitive impairments which necessitate extensive support and hinder patients’ ability to navigate complex health systems. Cancer care coordination has an integral role in patient care. Given the nature of brain cancer, the role of Brain Cancer Care Coordinators (BCCCs) may differ from other CCCs, yet the specifics of their role are not well documented. Ethnographic methods are increasingly recognised as a useful method for capturing complexity within health settings. This study aimed to use ethnographic methods to characterise the role of BCCCs in a New South Wales cancer centre.
Methods: Between November 2024 and March 2025 a researcher employed ethnographic participant observation to characterise the role of two BCCCs who were employed at a multi-site cancer service in NSW. Observational and reflexive field notes recorded the activities of BCCCs and how they enacted these activities within the structures, roles, and expectations of the cancer centre. Data were analysed using thematic analysis.
Results: This study supports ethnographic participant observation as a feasible and valuable method for documenting the activities and impacts of the BCCC service. Participant observation provided nuanced and direct insights into previously undocumented and otherwise intangible features of the role. Preliminary findings demonstrate how BCCCs provide complex and responsive person-centred clinical, psychosocial, practical, and financial support for patients, caregivers, clinicians, and health systems. Additionally, the study described how the BCCC role utilises high-level tumour-specific and psychosocial clinical skills to navigate the many complex and emotional aspects of the role.