Consumers' longitudinal health information needs and seeking: a scoping review

Needing and seeking health information often is a longitudinal everyday life information behavior that involves the use of technology. However, no reviews of consumers' longitudinal health information needs (HIN) and health information-seeking (HIS) behavior have been conducted. We performed a scoping review to address this gap. Specifically, we surveyed the characteristics, timeline construction and research findings of studies investigating consumers' longitudinal HIN and HIS. Initial searches were conducted in November 2019 and updated in July 2022. A total of 128 papers were identified, reviewed and analyzed using content and thematic analyses. Results showed that most papers were quantitative, conducted in the USA, related to cancer, conducted during the diagnosis and treatment phases, and followed preset time intervals. Findings concerning the development patterns of consumers' HIN degrees and HIS effort were mixed (i.e. increasing, decreasing or being consistent over time). They seemed to be shaped by factors such as health conditions, data collection methods and the length of data collection. Consumers' use of sources changes depending on health status and source accessibility; their medical terminologies seem to expand over time. HIS has a strong emotional dimension which may lead to adaptive or maladaptive information behaviors (e.g. information avoidance). Overall, the results revealed a lack of understanding of HIN and HIS from a longitudinal perspective, particularly along health condition progression and coping trajectories. There is also a lack of understanding of the role of technologies in the longitudinal HIS process.