Background
Primary brain tumours are rare and associated with significant symptom burden and high supportive care needs. Timely and comprehensive patient navigation is vital, ensuring both people with brain tumours (PwBT) and their caregivers have the resources needed to negotiate the multidisciplinary team, treatment and survivorship care. We explored HCPs experiences and perceptions of the challenges in communicating with PwBT and their families.
Methods
This study formed part of a qualitative exploratory study investigating the roles, training and support needs of HCPs 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. Themes were developed in the data using interpretive description with three coders using Nvivo(v14) software. Questions focused on communication experiences and challenges in the NOCC role.
Results
Interviews were conducted with 12 HCP during 2023, lasting a median of 58 (range: 43-82) minutes. The participants from Australia/New Zealand had a median of 13 years of neuro-oncology clinical experience across medical, nursing, and allied health. A theme of ‘communication is key’ was identified and supported by three themes describing elements of communication in neuro-oncology: 1) In safe hands; describing care navigation for patients and families, providing a safety net during diagnosis and early treatment; 2) Delicate balance; managing elements of communication during each interaction. Balancing hope with reality, family with patient needs, process with time. 3) Creative communication; describing creative and adaptable communication styles in neuro-oncology.
Conclusion
Our results highlight the unique challenges and complex nature of communicating with PwBT and their families. There is no doubt of the centrality of communication when navigating care with PwBT. The findings will support development of training and support for health professionals already working within neuro-oncology and assist in defining core skills and future training needs.