Information seeking and avoidance throughout the cancer patient journey: Two sides of the same coin? A synthesis of qualitative studies

Objective: Understanding what motivates patients to seek or avoid information beyond the medical consultation is essential for effective information provision that will be relevant to patients' needs and preferences. We conducted a synthesis of published qualitative research to provide insight into patients' motivations for cancer information seeking and avoidance. Methods: We searched five electronic databases: Medline, CINAHL, PsycINFO, Communication and Mass Media Complete, and Sociological Abstracts. We complemented this process by reviewing reference lists of relevant articles and searching in Google Scholar. We independently assessed the quality of selected studies and used the technique of meta-ethnography to synthesize available findings. Results: Eighteen articles that reported the information-seeking experiences of 650 patients diagnosed with more than 20 different types of cancer were included. Key concepts were experience of diagnosis, sense of control, trust in medical expertise, hope and fear, and need to resume normality. The synthesis revealed the fluid boundaries existing between information seeking and avoidance throughout the cancer journey and pointed toward the exploration of factors that could influence patients' motivations to engage in information seeking. Patient characteristics, disease characteristics, characteristics of incoming information, and the context of cancer care were found to facilitate or hinder individuals' willingness and potential to assume the role of 'informed patient'. Conclusions: This meta-ethnography suggests that information seeking and avoidance should not be necessarily considered as two distinct behaviors pertaining to different groups of patients; rather, a number of personal and contextual characteristics should be taken into account when evaluating patient desire for information.