Patient and clinician perspectives of desired features for a web-based self-management program (icanmanage.ca): exposing patients "hard work" of managing acute cancer.

Abstract

People with cancer benefit from self-management support, but report limitations in the type/amount of support they receive from healthcare professionals during cancer treatment. To intervene in this critical period, our team is developing a web-based self-management system, called I Can Manage Cancer (ICMC). The purpose of this paper is to report patient and clinician perspectives on the preferred features and functions in a self-management system that informed the development of the ICMC program. We used descriptive qualitative methods, conducting interviews with people diagnosed with cancer (n = 16) and focus groups with cancer clinicians (n = 19). Data were thematically analyzed using the NVivo qualitative software. People with cancer describe engaging in hard work when employing cancer self-management. Our findings lend insight into features and functions they deem vital in a self-management system to support this work. Based on patient and clinician accounts, we developed three themes describing specific content and design features for the ICMC program to support self-management needs of people with cancer during the acute phase of treatment: (1) being able to connect, observe, and learn from others; (2) the ability to tailor and customize information; and (3) the capacity to track symptoms over time. Clinicians and patients emphasized the need to optimize all available resources to support people with cancer as they engage in the work to manage their diagnosis. Our findings describe the how peoples' cancer experiences and the gaps in self-management care can be enhanced by specific features and functions within the ICMC.