A cancer patient’s sense of agency as an active individual is not fixed, according to a study from the University of Eastern Finland. The study explored how a cancer patient’s experience of agency, i.e., their sense of being able to influence their life, changes during diagnosis and treatment, as well as in response to wider societal crises. Conducted as a co-research project, the study followed the long-term experience of a single patient.
The patient’s experience of agency was shaped not only by healthcare professionals, other cancer patients and close family members, but also by external events such as the COVID-19 pandemic and an increased threat of military conflict since Russia launched its war against Ukraine.
“The patient’s sense of agency shifted depending on the progression of treatment, emotions, physical reactions and the social environment,” Postdoctoral Researcher Eeva Aromaa notes.
As the patient’s sense of agency shifted, so too did the meanings the patient attached to cancer. At first, cancer was experienced as a secondary issue, which led to delays in diagnosis and treatment. Later, it became an ambiguous stranger that sparked curiosity and a desire to understand. Over time, cancer was seen as a travel companion, something to live with. Eventually, however, it became an enemy, evoking feelings of vulnerability and insecurity.
The study also sheds light on how personal history, social conditions and close relationships shape how the patient makes sense of their illness and their agency. Professor Päivi Eriksson notes that unexpected events, such as the pandemic or fear of war, altered the patient’s experience.
“During the pandemic, fear of infecting healthcare workers led to postponed treatment. At the same time, media portrayals of an overburdened healthcare system reinforced the sense of hesitancy. The threat of war further intensified feelings of insecurity and affected the patient’s mental wellbeing.”
The study highlights how the meanings the patient attached to cancer evolved over time, influenced by the course of treatment and broader societal conditions. These shifting meanings shaped how the patient perceived their ability to act and cope with the illness.
“Cancer affects not only the body but also the mind and identity, both of the patient and often their loved ones,” says Researcher Satu Koskinen.
The study suggests that changes in a patient’s sense of agency should be recognised and supported throughout care, rehabilitation and peer support. Healthcare professionals and peer supporters can listen closely to how a patient talks about cancer – for instance, as a travelling companion, an enemy, or something else – and offer support accordingly. Activities carried out with peers can help a patient reshape the meanings they attach to cancer and strengthen their sense of agency.
“A patient’s lived experience can become a valuable resource if they later choose to share it with others, for example as a peer supporter or expert by experience,” the researchers conclude.
This study was carried out as part of the CO-RESEARCH project, funded by the Research Council of Finland.
Further information:
Dr Eeva Aromaa, University of Eastern Finland, Business School, eeva.aromaa(at)uef.fi
https://uefconnect.uef.fi/eeva.aromaa/ Mobile: +358 40 3553983
Professor Päivi Eriksson, University of Eastern Finland, Business School, paivi.eriksson(at)uef.fi
https://uefconnect.uef.fi/paivi.eriksson/
Dr Satu Koskinen, satu.marianne.koskinen(at)gmail.com
Research article:
Aromaa E., Eriksson P. & Koskinen S. 2024. Collaborative autoethnography of cancer patients’ dynamic sense of agency. Qualitative Health Research, 35(7) 793–806. https://doi.org/10.1177/10497323241285959
