Melanie Murray

By partnering with the nursing team at SCGH and Murdoch University, we aim to set up a SCGH breast cancer patient consumer group. Through the modified James Lind Alliance Priority Setting Partnership approach, we will survey early breast cancer survivors from this group across three phases. There will also be involvement of carers, medical oncologists, nursing and allied health professionals.  In phase 1, one community conversation will be conducted to elicit initial set of research topics. This data will inform phase 2, a survey to collect diverse views from a wider participant pool. In phase 3, a pre-selected sample of potential research priorities is discussed in a consensus workshop to reach a group consensus of the top ten research priorities.

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.

Clinical trials help doctors find better treatments for cancer, but many patients don’t participate. Some may not know about clinical trials, while others may feel unsure or worried about joining. This research will explore how oncology patients understand and feel about clinical trials, helping us learn what encourages or discourages participation. We know that patient’s families, doctors, nurses, and researchers are also important in patients experience of clinical trials. We will focus on cancer patients experience in this study, but we hope to include the experience of other groups in later research.

We will interview cancer patients with and without experience in clinical trials to hear their thoughts, concerns, and expectations. By listening to their opinions, we can identify ways to make trials more patient-friendly and accessible. The study will take place at the SCGH Comprehensive Cancer Centre, ensuring that local patients’ voices help shape future cancer research.

The goal is to improve how clinical trials are explained, offered, and supported, so more people feel they have the information they need and are more comfortable taking part. This can lead to better cancer treatments for future patients, and more treatment options for current patients.

Advance care planning (ACP) is “a process that supports adults at any age or stage of health in understanding their health condition and sharing their values, life goals, and preferences regarding medical care¹”. ACP conversations enable the best care provisions for individuals by identifying their preferences and values salient to end-of-life decision-making. Nurses are pivotal in raising ACP awareness and leading ACP conversations on end-of-life decision-making. However, nurses and nursing students feel ill-prepared and uncomfortable and lack confidence in initiating ACP conversations with patients and families due to a lack of exposure to ACP conversations, the difficulty of organising ACP training at clinical sites and the lack of ACP training in the current nursing curriculum^2,3.

Avatar-based simulations provide an opportunity for students to immerse themselves in and prepare for these sensitive conversations. Virtual simulations have been investigated for their potential benefits in nursing education in areas such as pharmacology,⁴ interview skills,⁵ and clinical handover⁶ with positive findings, including making the learning more engaging and realistic and increasing communication skills. However, studies have yet to be identified that explore the use of avatar-based simulations in preparing health professionals for ACP conversations. Consequently, this project aims to explore ACP conversations in avatar-based simulations among nursing students. We anticipate these experiences will enhance their feelings of safety, engagement, competency and empowerment, resulting in graduates acquiring real-world transferrable communication skills that extend to a diverse range of people across Australian society in the specialist area of ACP.