People with rare cancer often face additional barriers when it comes to finding the right information and support they need. At the same time, healthcare professionals grapple with how to communicate clearly and compassionately when information on less common cancers is so scarce.
Tamsin Farrugia, a La Trobe Industry PhD candidate with Rare Cancers Australia, is addressing this challenge by researching how people with rare cancers seek, receive and make sense of the information they need from diagnosis through to treatment and beyond.
As part of her PhD, Tamsin undertook a systematic literature review and conducted in-depth interviews with both rare cancer survivors and healthcare professionals.
Together, these studies reveal just how complex it is to provide meaningful information to a highly diverse group of patients, and how important it is to get it right.
“The research highlights that, even when information is limited, survivors need personalised, relevant, face-to-face communication.”
“Although information about many rare cancers is often limited, it remains essential that what is available is delivered in a way that is personalised, evidence-based, and communicated in a manner that patients can easily understand and apply to their own circumstances.”
The next phase of Tamsin’s PhD is to analyse national survey data that explores the lived experience of people affected by cancer. Tamsin will identify gaps between rare and common cancer patients to inform where greater rare cancer supportive care is needed.
Tamsin’s research will inform recommendations to oncology healthcare professionals.
“Recommendations will focus on promoting clear, empathetic and patient-centred communication practices that acknowledge the uncertainty and complexity that is often associated with a rare cancer diagnosis.”
“By supporting healthcare professionals in delivering information that is both evidence-based and personally meaningful, my research seeks to enhance patients’ understanding, trust and engagement in their care.”
