Improving outcomes for cancer caregivers around the world

In an increasingly interconnected world, the impact of a cancer diagnosis extends far beyond the individual patient. This realisation became the central focus of research being conducted by Olinda Santin, reader in supportive cancer care in the School of Nursing and Midwifery at Queen’s University Belfast (QUB).

“My research examines the psychological, physical and social impact of a cancer diagnosis on a patient’s entire support network,” explains Santin. “In recent years, I’ve been working with family members, healthcare professionals and academics to develop digital resources that can support families, while being easily slotted into healthcare frameworks so we don’t overburden an already stressed system.”

A large-scale population study at QUB’s Centre for Public Health became the foundation for Santin’s work. It asked patients and their family members about their health needs, with the results revealing that there was a large group of people who, although they may not have received a cancer diagnosis themselves, had been impacted hugely by such a diagnosis. 

Motivated to better meet the needs of cancer caregivers, Santin launched an international research programme examining these needs in various countries, including Australia, Vietnam and Colombia. The findings have been consistently clear – caring for someone with cancer negatively impacts health, with formal support often lacking. By collaborating with patients, caregivers, academics and healthcare professionals as equal partners, Santin developed tailored digital resources that have been replicated and adapted for use in the various countries included in her research. 

“One of the key aspects of this research is its focus on collaboration and co-design,” Santin adds. “For instance, our Australian research was conducted in partnership with Cancer Council Australia and Swinburne University of Technology, while our Vietnamese project was a collaboration with the Hanoi University of Public Health.”

Admittedly, expanding Santin’s research in the field of nursing globally has presented challenges. One of the most significant has been bridging the gap between developing a proven resource and getting it into the hands of those who need it most. This challenge is magnified in low-resource contexts, where funding for such research is limited. 

“As cancer rates continue to rise globally, the burden on families in many regions intensifies, making the rapid integration of effective support systems more urgent than ever – especially in low-resource contexts,” Santin says. “I have witnessed first-hand the immense pressure on caregivers, such as a Vietnamese farmer in her 60s who travelled hundreds of kilometres to care for her daughter. She had to make difficult decisions about her daughter’s treatment without a clear understanding of medical terms like chemotherapy, all while living in a hospital with no proper facilities.”

Looking ahead, Santin’s aim is to continue developing and implementing digital resources to better meet the needs of cancer caregivers, and, in turn, improve health outcomes for cancer patients themselves – especially in low-resource settings. 

“If we want to better support patients, we must bring their families and caregivers along on that journey,” Santin says. “Digital tools are crucial because they can be accessed by a wide audience, modified easily and, most importantly, are available at a time and place that suits the caregiver’s demanding schedule. This is the essence of my work – leveraging technology to deliver evidence-based support directly to families, ensuring no one has to navigate the cancer journey alone.”

To learn more about research in the fields of medicine, nursing and psychology join QUB for a roundtable discussion featuring three esteemed academics: Martin Dempster, Mark Lawler and Olinda Santin. Hosted by former BBC journalist Mark Devenport, this conversation will focus on the hidden impact of cancer, exploring the long-term impact of cancer on patients and caregivers.