“I want to know everything”: a qualitative study of perspectives from patients with chronic diseases on sharing health information during hospitalization

Abstract

BackgroundPatient-centered care promotes the inclusion of the most prominent and important member of the health care team, the patient, as an active participant in information exchange and decision making. Patient self-management of a chronic disease requires the patient to bridge the gap between multiple care settings and providers. Hospitalizations often disrupt established self-management routines. Access to medical information during hospitalization reflects patients’ rights to partner in their own care and has the potential to improve self-management as well as promote informed decision making during and after hospitalization. The objectives of this study were to elicit the perspectives of patients with chronic disease about desired medical information content and access during hospitalization.MethodsThis exploratory study incorporated a qualitative approach. The online survey included the research team created open and limited response survey, demographic and hospital characteristic questions, and the Patient Activation Measurement instrument (PAM®). Convenience and social media snowball sampling were used to recruit participants through patient support groups, email invitations, listservs, and blogs. The research team employed descriptive statistics and qualitative content analysis techniques.ResultsThe study sample (n = 34) ranged in age from 20 to 76 (μ = 48; SD = 16.87), Caucasian (91%, n = 31), female (88%, n = 30) and very highly educated (64%, n = 22 were college graduates). The PAM® survey revealed a highly activated sample. Qualitative analysis of the open-ended question responses resulted in six themes: Caring for myself; I want to know everything; Include me during handoff and rounds; What I expect; You’re not listening; and Tracking my health information.ConclusionsThis study revealed that hospitalized patients want to be included in provider discussions, such as nursing bedside handoff and medical rounds. Only a few participants had smooth transitions from hospital to home. Participants expressed frustration with failures in communication among their providers during and after hospitalization and provider behaviors that interfered with patient provider communication processes. Patients also identified interest in maintaining their own health histories and information but most had to “cobble together” a myriad of methods to keep track of their evolving condition during hospitalization.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-017-2487-6) contains supplementary material, which is available to authorized users.

Living with a chronic disease: A quantitative study of the views of patients with a chronic disease on the change in their life situation

“…The patients' own thoughts about their new situation can also influence how they cope. 6,7 Another aspect of coping with the new life situation is the type of support the patients can receive. The social support received depends on the patients' available network of people, and the need for social support will vary depending on the patients' age and need.…”

Supporting Collaborative Health Tracking in the Hospital

“…Highlighting the role of the patient in particular could facilitate their participation [3,28,36]. To support collection, the record should support multiple kinds of data formats (e.g.…”

“…Studies have shown that patients in the hospital essentially “want to know everything” [3] about their health status and care in the hospital. However, existing information sources often do not meet their information needs [26,42].…”

“…Kendall et al, surveying patients’ and caregivers difficulties in tracking information in the hospital, found that members of both populations struggled with tracking changes in symptoms and questions for the care team [26]. Benham-Hutchins et al, looking at how patients with chronic illnesses kept track of health and care information both in and out of the hospital, found they relied on a mix of methods such as paper-based logs, memory, and electronic methods including “multiple patient portals,” computer and phone applications, and digital notes [3]. This scattershot approach to tracking implies a need for better tools to support patients and caregivers in tracking health and care in the hospital.…”

“…[26,56]), but often lack the tools to fully engage with their health information and treatment. Their inability to access this information limits their participation in the care they receive [3,24,35]. …”