The Dynamic Nature of a Cancer Patient’s Sense of Agency and Its Impact on Illness Perception

A recent study from the University of Eastern Finland highlights that a cancer patient's sense of agency—the feeling of being able to influence their own life—is not fixed but quite fluid, changing throughout the course of diagnosis, treatment, and in response to societal crises. Published in Qualitative Health Research, this research was a collaborative autoethnography focusing on the long-term experience of a single patient, revealing how their perception of control evolved over time.

The patient's experience of agency was influenced by multiple factors, including interactions with healthcare professionals, fellow cancer patients, family members, and external societal events like the COVID-19 pandemic and tensions arising from global conflicts such as the war in Ukraine. Postdoctoral Researcher Eeva Aromaa notes that "The patient's sense of agency shifted depending on treatment progression, emotional states, physical reactions, and their social environment."

Initially, cancer was perceived as a secondary issue, leading to delays in diagnosis and treatment. Later, it was viewed as an unfamiliar stranger that piqued curiosity and a desire to understand it better. As time went on, the patient began to see cancer as a travel companion—something to coexist with—before eventually perceiving it as an enemy that evoked feelings of vulnerability and insecurity.

The study emphasizes the role of personal history, social circumstances, and close relationships in shaping these perceptions. External factors such as media portrayals and societal crises also significantly influenced how the patient experienced their illness, often heightening feelings of uncertainty and insecurity. For example, during the pandemic, fears of infecting healthcare workers and overburdened systems led to postponed treatments, further impacting the patient’s mental health.

Importantly, the research underscores that these shifting perceptions of cancer influence a patient’s perceived ability to act and cope. Recognizing and supporting these changes throughout treatment and recovery are crucial. Healthcare providers and peer supporters can help by attentively listening to how patients describe their cancer—whether as a companion, enemy, or something else—and tailoring support accordingly. Peer activities can also help patients reshape their understanding of cancer and reinforce their sense of agency.

The findings suggest that patients' lived experiences can become invaluable resources if shared with others as peer supporters or experts by experience, empowering both individuals and communities. Overall, the study highlights the importance of acknowledging the dynamic nature of agency in cancer care and the potential benefits of personalized, socially aware support systems.