Abstract
Cancer journeys, encompassing patients’ cancer experiences through survivorship, are complex and diverse. Individuals must cope with numerous physical and emotional challenges, balancing clinical tasks alongside responsibilities of daily life. Understanding the breadth of factors that contribute to a patient’s cancer experience presents a critical challenge in developing holistic patient-centered technology. To further our understanding of the cancer journey, we conducted focus groups and interviews with 31 breast cancer patients. We present a cancer journey framework depicting the responsibilities, challenges, and personal impacts patients face while transitioning from diagnosis through post-treatment survivorship. Through this work, we aim to aid the development of health tools that consider a patient’s cancer journey and health needs more broadly, supporting patient’s health management alongside the complexities and priorities of daily life.
Highlights
For individuals battling cancer, the disease brings numerous physical, psychological, social, and personal consequences
Using interviews and focus groups with 31 breast cancer patients, we developed the framework that reveals the range of responsibilities, challenges, and personal impacts patients must cope with while managing this disease
The framework highlights how each of these responsibilities, challenges, and personal factors change over the course of the cancer trajectory
Summary
The disease brings numerous physical, psychological, social, and personal consequences. While resources exist to help patients manage their healthcare, these tools focus on supporting a small subset of patient needs. An opportunity exists to develop technology that supports the broader cancer experience, helping patients to overcome both medical and personal challenges. Our work aims to inform the development of holistic health tools that broadly consider a patient’s cancer journey and health needs, to improve patient support and minimize the number of resources a patient must discover and incorporate into their healthcare management. Using interviews and focus groups with 31 breast cancer patients, we developed the framework that reveals the range of responsibilities, challenges, and personal impacts patients must cope with while managing this disease. We aim to provide guidance for technology designers and researchers developing tools to support the wide range of cancer patient needs. Through the framework we offer a detailed description of the cancer journey for those who wish to understand this complex design space but may not be able to conduct the longitudinal fieldwork necessary to capture patients’ experiences
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