Patients’ Perspectives on Health Information Seeking Throughout the Colorectal Cancer Experience: A Qualitative Study

Abstract BACKGROUND: With limited research on how patients with colorectal cancer (CRC) access and apply health information, our objective was to explore patients’ perspectives on health information seeking.METHODS: We invited participants from Canada, 18 years of age or over, to participate. Semi-structured, open-ended interviews were conducted over the telephone and transcribed verbatim. Transcripts were analyzed using an interpretive description approach.RESULTS: Among 34 participants with CRC, 18 were females (52.9%). Twenty (58.8%) were diagnosed with CRC on or after the age of 50 years and 14 (41.2%) before the age of 50 years. Sixteen (47.1%) were diagnosed with colon cancer, 12 (35.3%) with rectal cancer and 6 (17.7%) with cancer at both sites. We identified three themes that reflect participants’ health information seeking in terms of perspectives on sources primarily sought. These themes and specific sub-themes that suggest areas for improvement are: 1) perceived expectations of physicians – which included sub-themes of varied interactions and relationships with physicians and feeling abandoned after active treatment; 2) importance of personal and social connections – which included the sub-theme of experiencing gaps with current in-person cancer support groups; and 3) use of the Internet for information – which included the sub-theme of using credible Internet sources.CONCLUSION: Our study identified gaps with respect to availability, access to, or knowledge of resources for CRC. Understanding how individuals with CRC seek health information have implications for informing interactions with patients and developing resources across the continuum of CRC care.