Abstract
BACKGROUND: Primary brain tumours are associated with a significant symptom burden and high supportive care needs, presenting in varied and unique ways along the disease trajectory. Timely and comprehensive patient navigation is vital to ensuring both people with brain tumours (PwBT) and their caregivers have the resources and support needed to negotiate the multidisciplinary team, treatment pathways and survivorship care. We explored HCPs’ experiences and perceptions of the particular challenges in communicating with PwBT and their families. Material and Methods:This study formed part of a qualitative exploratory study investigating the roles, training and support needs of healthcare professionals involved in neuro-oncology care coordination (NOCC) for PwBT and their families. Semi-structured interviews were conducted with HCPs via videoconferencing and were audio-recorded and transcribed. Questions focused on communication experiences and challenges in the NOCC role. Themes were developed in the data using interpretive description with three coders using NVivo v14 software. RESULTS: Interviews were conducted with 12 HCPs between June and November 2023, lasting a median of 58 (range: 43-82) minutes. Participants were from Australia and Aotearoa New Zealand with a median of 13 years of neuro-oncology clinical experience across medical, nursing, and allied health disciplines. An overarching meta-theme of ‘communication is key’ was identified and supported by three themes describing the elements of communication in neuro-oncology: 1) In safe hands; describing the way care is navigated for patients and families, and the importance of providing a safety net during diagnosis and early treatment; 2) Delicate balance; recognising elements of communication needing to be balanced during each interaction. Balancing hope with reality, family with patient needs, process with time. 3) Creative communication; describing the importance of creative and adaptable communication styles required for NOCC. CONCLUSION: Our results highlight the unique challenges and complex nature of communicating with PwBT and their families and the pivotal nature of communication in NOCC. The findings will support the development of training and support for health professionals already working within neuro-oncology and assist in defining the core skill set and training needs of health professionals seeking to move into this area of practice.