Anne Williams Emerita Professor

The overall aim of this project was to explore the perspectives of CNWA CNCs in relation to their experiences of cancer care complexity. The specific objectives were to explore and describe:

• The characteristics of complex cancer patients who are referred to the CNCs.
• The specific needs of complex cancer patients.
• The strategies used by CNC to manage complex cancer patients.
• The barriers and facilitators related to optimal care for cancer patients with complex needs.

The study employed a qualitative approach using narrative inquiry. Interview questions were developed by the researchers based on the findings of the Cancer Care Complexity World Café. Interviews were semi-structured, audio-recorded, transcribed verbatim and thematically analysed. A total of 17 interviews were undertaken averaging 60 mins each (range 30-90minutes).

The Cancer Nurse Coordination Service (CNCS) is a specialist service who provide cancer care coordination to patients presenting as complex to oncology services in Western Australia (WA). Throughout the interviews, there was consensus regarding characteristics that influence the level of complexity a patient may present with. These characteristics include level of health literacy, people from culturally and linguistically diverse backgrounds, Aboriginal and Torres Strait Islander people, people experiencing poor mental health, and those with complex social situations. These may be in isolation, but patients presenting with more than one of these characteristics may have increased levels of complexity. This data led to the identification of five overarching themes; those being: Helicopter view, Assessing, Reassessing and Activating, Identifying and supporting patients with complex needs, Barriers to the CNC role, and CNC strategies.

Patients’ referred to the CNCS have varying needs in their care coordination including the practicalities of transport and/or accommodation, or financial assistance. Others require referral to allied health services such as dieticians, or counselling services. Others need linking in with community support services. These patients are vulnerable, and the difficulty of navigating cancer services within WA can be problematic, especially when treatments for some cancers are not available at one location. This is a complexity that creates a barrier that nurses need to negotiate in the coordination of patients requiring treatment across multiple sites.

The nature of the Western Australian geography sees patients travelling vast distances for treatment, not only from the regions, but at times within the metropolitan area where some health service providers have limited cancer treatment facilities. Other barriers include fractured or incompatible electronic medical databases across the health service providers, making it difficult to obtain patient data for monitoring or to ensure they’ve attended scans or blood tests prior to attending clinic or oncologist appointments.

The strengths of the role are that the CNCS is an independent, nurse-led service that works as a cohesive team who are well connected across multiple health service providers. Their networks are broad, and they have significant links to cancer support services throughout the state. They use several strategies to manage patient complexity including prioritisation and patient empowerment, taking a holistic psychosocial approach, strength in networking and teamwork, and being able to manage their own wellbeing and self-care. These are all keys to their success as a CNCS.