Cancer-related fatigue is a distressing symptom experienced by individuals with a cancer diagnosis – and can persist far longer than expected, making it widely misunderstood by the general public and many health professionals.
Dr Andi Agbejule from Flinders University’s Caring Futures Institute is leading work to examine cancer-related fatigue more thoroughly, thanks to her recently receiving a prestigious Fatigue Fellowship though MASCC (the Multinational Association of Supportive Care In Cancer). This also complements her ongoing research around discrimination that affects cancer survivorship.
“Cancer-related fatigue can progress long after cancer treatment, and unlike normal fatigue, it cannot be relieved simply by sleep,” explains Dr Agbejule. “It can affect such things as cognition, memory, the ability to work and many other aspects of daily life.”
While there are effective ways to manage cancer-related fatigue, this problematic condition remains severely under-treated and under-managed in people who have had cancer.
“We have found that while there are many clinicians, hospitals and organisations wanting to help their patients who are experiencing cancer-related fatigue, they don’t readily know how to provide the necessary support.”
Dr Agbejule, who completed a Bachelor in Radiation Therapy before her PhD at Flinders University in cancer-related fatigue self-management support, aims to help organisations and clinics implement fatigue management programs, through providing clear insights into effective and innovative approaches for fatigue support.
During her PhD, Dr Agbejule created a MASCC-endorsed clinical practice framework for healthcare professionals to support cancer survivors’ self-management of their cancer-related fatigue, and she has also completed conversation analysis of telehealth cancer-related fatigue clinics.
Her project will develop further assistance for patients, focusing on how fatigue programs can be structured, implemented, and maintained with adequate staffing, facilities, administrative processes and manageable costs.
“Our plan is to speak with several fatigue clinics worldwide to understand their methods and approaches,” she says. “We hope to compile this information into a toolkit that organisations can adapt to their specific contexts, thereby improving the implementation of fatigue management programs.”
This information could also serve as a valuable resource for healthcare professionals and program developers, to help them refine their practices and elevate the quality of care provided to individuals experiencing fatigue.
Dr Agbejule’s other important research project into cancer-related discrimination examines the many difficulties facing people affected by cancer (including those who care for someone with a cancer diagnosis) as a result of their diagnosis. These challenges include issues relating to ongoing employment, accessing support payments through Centrelink, accessing superannuation, and applying for different types of insurances.
“Cancer-related discrimination involves direct and recurring experiences of stigmatisation or unfair conduct based on an individual’s history of cancer, current diagnosis, or perceived risk of developing cancer in the future,” says Dr Agbejule.
She is investigating the forms and impact of cancer-related discrimination reported in international literature, with the findings of her review to shine a brighter light on the experiences of individuals affected by cancer in Australia – so that more people in the community and health professions can better understand the specific challenges they face.
“We believe this research will shed light on the prevalence and impact of cancer-related discrimination, ultimately contributing to more equitable and supportive environments for those affected by cancer,” says Dr Agbejule.