Managing Cancer Experiences: An Interpretive Description Study of Internet Information Use

Abstract

Background: People with cancer increasingly use the Internet to find information about their illness. However, little is known regarding people's use of cancer-related Internet information (CRII) to manage their patient experience, defined as patients' cumulative perceptions of interactions with the healthcare system during their illness.

Objective: The purpose of this study was to create an understanding of CRII use by people newly diagnosed with cancer and how it shapes their patient experience and informs their interactions with healthcare professionals and healthcare services.

Methods: An embedded mixed design guided this study. Nineteen people with cancer were interviewed twice and completed a survey about CRII use. Qualitative data were analyzed using thematic analysis. Descriptive statistics summarized the quantitative findings.

Results: Participants of all ages and educational levels reported using CRII as a pivotal resource, across the cancer trajectory. Cancer-related Internet information played a central role in how patients understood their illness and when they sought and used healthcare services. Two themes emerged based on patient interviews: (1) person in context and (2) management of information.

Conclusion: Cancer-related Internet information plays a crucial role in how people manage their illness and take control of their patient experience. Participants used CRII to learn about their illness, support their efforts to self-manage, and complement information from professionals.

Implications for practice: Individuals and institutions can promote and encourage tailored CRII use by engaging patients and suggesting websites based on their needs. Doing so may create efficiencies in service use and empower patients to be more involved in their own care.