Information in Crisis: Health & Technology-related Information Behaviors of Parents in Emergency Departments
This research examined the information behavior of parents (including legal guardians) during an emergent health situation with a child. Although many studies examine health-related information behaviors, very few explore health consumers’ information practices during moments of health crisis. This study explored parents’ information needs, source use, and source preferences during a visit to the emergency department. An online questionnaire was administered using iPads given to 897 parents with children at one of 32 participating general emergency departments (ED) across Canada. Before taking their child to the ED, only 38.8% (n=348) of parents looked for information; those who did search looked most frequently for information about specific symptoms or severity of illness. Prior to visiting the ED the sources most frequently accessed were the internet and direct contact with healthcare professionals. At the emergency department, parents’ information needs centred on immediate concerns, including explanations of their child’s illness, treatments, and care instructions. Household income, education level, and parents’ age were factors that affected information seeking in emergent health situations. Overwhelmingly, speaking to a healthcare professional in person is the typical and preferred way to obtain health information when facing a health crisis involving a child. The results have implications for how and when healthcare information is shared; the findings add to the limited research on parents’ information behavior, particularly their roles as information proxies for their children.
Managing Personal Information Over the Long-term, Or Not? Experiences by Type 1 Diabetes Patients
Si Sun, Nicholas J. Belkin
Rutgers University, United States of America
The management of chronic conditions is often accompanied with the long-term management of health information. By examining how patients manage their health information over time, we can develop guidelines and design technologies to support this patient work, and also contribute the patients’ perspective to the existing literature on personal information management. This study explored the long-term personal information management (LTPIM) behaviors of people living with chronic conditions. We conducted semi-structured interviews and photo-documentation with 23 experienced type 1 diabetes patients. This mixed methods approach helped us identify five LTPIM styles, including designer, achiever, gatekeeper, curator and monitor. Those LTPIM styles differ in the information tools people used, the intensity of long-term information management behaviors, and their motivators. The nuances in those LTPIM styles are unique to the context of chronic conditions, but the categorization of those LTPIM styles can potentially be transferable to LTPIM in non-health contexts. Our results support previous literature on the major differences between LTPIM and personal information management in general. Further, we point to issues in current technologies used by patients for LTPIM, indicating a space for improvement.
Impact of Patient-provider Communication on Online Health Information Behaviors in Chronic Illness
Rutgers, the State University of New Jersey, United States of America
This article analyzes the role that patient-provider communication has in shaping online health information seeking in patients diagnosed with chronic kidney disease [CKD]. Twelve participants, all diagnosed with CKD, were each interviewed twice for a total of 24 interviews; the posts they made to three different online support groups were also harvested. Data were collected and analyzed using grounded theory methods. There are multiple factors related to patient-provider communication that influence online health information seeking, including dismissive responses from providers, the type of an information need, time pressure, information overload, the healthcare system, and the desire to verify or crosscheck information by consulting multiple sources. These results highlight the importance of effective communication between people diagnosed with CKD and their healthcare providers, as these interactions impact online health information behavior. In particular, providers should foster an open attitude towards online health information seeking; they should also encourage patients to verify information found online.