Learning to Live With and Beyond Hematological Cancer: A Narrative Study for a Comprehensive Patient Perspective

The aim is to describe and conceptualize the lived experiences of people learning to live with and beyond hematological cancer throughout the cancer trajectory.

This study used a narrative qualitative methodology to explore the experiences and experiential learning processes of people living with and beyond hematological cancer throughout their cancer care trajectory. Participants were recruited via a Canadian patient advocacy organization, and data were collected via remote semi-structured interviews, which were transcribed into first-person narratives and validated by participants. Data were analyzed using a hybrid inductive/deductive content analysis framework based on an educational biography reconstruction analysis approach.

Twelve participants described their experiences during the hematological cancer care trajectory. These were conceptualized into 4 phases. The first phase, characterized as "Loss and Disruption," occurs during the time of the first symptoms and diagnosis. Next, we present the second phase, characterized by "Putting One's Life on Hold" during treatment. Then, we describe the third phase, characterized by "Rediscovery and Personal Development," which occurs at the end of treatment. The fourth phase, "Starting Over, Drawing from Experience" represents the experience of recurrence of cancer that is common in hemato-oncology.

This study highlights how the hematological cancer care trajectory influenced the process of learning to live with the disease. This experiential learning is closely tied to the different stages of the care trajectory, its key events, and the various individuals involved. These results will assist oncology nurses in developing sensitivity through a deeper understanding of each patient's unique journey and experiential learning.