Navigating the Cancer Journey Using Web-Based Information: Grounded Theory Emerging From the Lived Experience of Cancer Patients and Informal Caregivers With Implications for Web-Based Content Design

**Background:** Unmet information needs are highly prevalent among cancer patients and informal caregivers, with prevalence exceeding 50% in some settings. The internet is a key resource—76-83% of patients report using it for cancer information—but existing web-based content often suffers from poor accountability, readability issues, and misalignment with user needs. Existing theoretical models (e.g., Wilson, Longo, Freimuth) describe information-seeking behavior but do not specifically address how web-based content can be optimized to meet the needs of those living with cancer.

**Methods:** This classic grounded theory study recruited adults (≥18 years) with a history of being cancer patients or informal caregivers from Alberta, Canada, between August 2021 and June 2022. Recruitment used email lists from Alberta Health Services and a cancer support clinic network, plus posters in clinical areas. After informed consent, participants completed a short intake survey and engaged in digitally recorded one-on-one semistructured interviews (via telephone or Zoom), focus groups (via Zoom), email correspondence, and a private password-protected web-based discussion forum. An initial interview guide was modified as the study progressed per grounded theory methodology. Data collection and analysis (open, selective, and theoretical coding using NVivo Plus v12) continued until theoretical saturation was achieved. Field notes, transcripts, emails, and forum posts were analyzed.

**Key Results:** Twenty-one participants took part in 23 one-on-one interviews, 5 focus groups, 26 web-based forum posts, and 10 emails. Mean age was 53 (SD 15.3) years; 76% (16/21) were female. Breast, gynecological, and hematological cancers were each reported by 19% (4/21) of participants. 67% (14/21) were patients, 29% (6/21) informal caregivers, and 5% (1/21) both. 52% (11/21) reported curative treatment intent, 38% (8/21) noncurative, and 14% (3/21) were unsure. Average interview duration was 52 minutes 30 seconds; average focus group duration was 57 minutes 48 seconds.

The emergent theory—'orientation theory'—consists of six interconnected concepts: (1) cancer challenges (direct and secondary), (2) orientation (the core concept), (3) consequences, (4) information sources, (5) personal and external factors, and (6) internet content design characteristics. Participants faced numerous challenges and used the internet to address three key orientation questions: 'Why is this happening?', 'What can I expect?', and 'What are my options for dealing with this?' Better orientation resulted in improved well-being; being unoriented was associated with increased uncertainty, emotional distress, and resource depletion. Health care providers and the internet were identified as primary information sources. Six situations where participants preferred the internet to health care providers were identified: accessing routine health services, accessing additional services, inability to access providers, sensitive/anonymous questions, validating/fact-checking information, and questions not directly related to personal care. Participants described 'rabbit holing' (following unfamiliar terms into unrelated searches) and lack of end user–oriented design (too much content, poor organization, distressing content without warning) as key challenges with existing web content.

**Clinical Implications:** Clinicians should provide direction to credible websites, facilitate access to nurse educators, and consider providing educational content to help patients evaluate web-based information quality. Clinicians should not assume that lack of questions means no unanswered questions, particularly for sensitive topics like end of life and sexuality. Five recommendations for web-based content design are provided: (1) clearly identify the cancer challenge, target population, and presence of potentially distressing information; (2) provide content in multiple formats (printer-friendly, audio, video, alternative languages); (3) state who created the content and the processes involved; (4) place hyperlinks after the three key orientation questions have been addressed; and (5) optimize content for search engine discovery (especially Google).