JMIR Publications

ABSTRACT

Background:

Cancer patients and their supporters use information for emotional support and to assist with planning in the short and long term. The internet is a common source of information for those living with cancer. There is little peer-reviewed research to guide the creation of online content to assist those living with cancer.

Objective:

This study aimed to develop a grounded theory capable of 1) describing how individuals living with cancer use the internet and 2) inform the creation of online informational resources.

Methods:

Adults (18+) with a history of either being a cancer patient or supporting one were recruited from the province of Alberta, Canada. After informed consent, participants were engaged through digitally recorded one-on-one semi-structured interviews, focus groups, an online discussion board, and emails. Classic grounded theory was used to guide study procedures including participant selection for one-on-one interviews, and focus groups, as well as data analysis.

Results:

Twenty-one participants participated in 24 one-on-one interviews, and four focus groups between August 2021 and June 2022. Mean age was 53 (min = 19, max = 80). Breast (n=4), hematologic (n=4), and gynecological (n=4) cancers were the most common. Fourteen reported being either a current or former cancer patient, 6 reported supporting a cancer patient, and 1 reported a history of both being a patient and a supporter. Six interrelated concepts relevant to the participants experience navigating the cancer journey and internet use emerged. These included: 1) cancer challenges, 2) orientation, 3) consequences, 4) information sources, 5) personal and external factors, and 6) internet content design characteristics. Orientation emerged as the core concept of the theory. Participants described obtaining information from multiple sources, both on and offline, to become oriented to the cancer challenges they faced. When participants were oriented, they described fewer negative consequences resulting from the cancer challenge. The internet is the preferred source of information compared to health care providers in a number of situations due to personal and external factors. Data analysis identified that lack of end-user centered design as well as rabbit holing can limit the usefulness of online content, and in some cases result in increased negative consequences.

Conclusions:

The findings of this study inform recommendations for the design of online content to help enhance the usefulness of online cancer related content. The theory that emerged in this study is helpful in terms of building on existing work and adding new insight, but additional work is still needed. Clinicians are encouraged to support those living with cancer by collaboratively assisting them in finding reliable online content that meets their informational needs and being supportive and non-judgmental in helping them interpret what they find.