“You need someone steering the ship for you”: Australian brain tumour care coordination needs, practices, and opportunities.

Abstract

Objective In Australia, care coordination has not been widely adopted in neuro-oncology services and there is a dearth of empirical evidence about routine care coordinator practices with brain tumour (BT) patients and their caregivers. In this study, we explored how neuro-oncology service models can best promote personalised, flexible interventions, and how BT care coordination can be effectively integrated within Australian health care services. Methods We used a qualitative approach, conducting semi-structured interviews with 21 informal brain tumour caregivers and 11 multidisciplinary health and social care professionals. Results Three main themes were developed: i) “No-one’s really on your team”: Need for patient-and family-centred care, partnership, and support; ii) “You need someone steering the ship for you”: Navigating complexity and guiding the whole family; and iii) “Good, shared decision-making communication improves patient outcomes every time”: Future opportunities and modifiable factors. Conclusion Care coordination can improve the responsiveness of BT care and increase the accessibility of already-existing services. However, many families do not have access to a central coordinating figure. Since BT care coordination is an emerging subspecialty in Australia, it is critical that neuro-oncology services review and evaluate these positions to ensure that they are adequately integrated and supported.