Untangling The Knitting Problem: An Exploration of The lnterplay Between The Cancer Journey, ldentity, lnformation, and The lnternet

Abstract

Background: Information helps support the identity of individuals navigating the cancer journey. However, information is one of the most prevalent unmet supportive care needs of those living with cancer. The objectives of this thesis are to 1) characterize how tools for assessing the information needs of those living with cancer have been developed, 2) determine what characteristics make information useful for navigating the cancer journey, and 3) conceptualize why and how individuals use the internet to access information including what characteristics make online information content useful. Methods: Objective 1 was addressed through a scoping review of the peer-reviewed literature exploring the development of information needs assessment tools for use in the cancer context. Objectives 2 and 3 were addressed using semi-structured interviews and classic grounded theory in two sequentially conducted studies. Results: The scoping review identified 21 tools for assessing information needs. Development of the tools was primarily informed by healthcare professionals and pre-existing literature, not those with lived cancer experience. The first grounded theory (n = 60) defined high-quality information as that which was accessible, credible, applicable, and framed in a way that was empowering and provided hope. The second grounded theory (N = 21) described that individuals used the internet when high-quality information for a challenge they were facing was not available from healthcare providers to address the key orientation questions of: 1) why the challenge is happening, 2) what to expect from it, and 3) what options exist for managing it. Recommendations for better online content include, but are not limited to, clearly identifying the population the content is for and the placement of hyperlinks after the key orientation questions have been addressed. Conclusion: Current understanding of what information needs are important for those living with cancer is highly influenced by what healthcare professionals consider important for patients to know - not necessarily the priorities of those living with cancer. Characterization of the challenges faced by those living with cancer is necessary to guide the development of information needs assessment tools and interventions. This work should be undertaken in partnership with those that have lived experience.