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

ABSTRACT: Patient-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.This 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.The 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.This 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.

SUBMITTER: Benham-Hutchins M

PROVIDER: S-EPMC5544974 | biostudies-other | 2017 Aug

REPOSITORIES: biostudies-other

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Project description:Rationale & objectiveAcute kidney injury (AKI) in the hospital often occurs with other serious illnesses that take medical priority. Despite a persistent risk of adverse outcomes following hospital discharge, AKI survivors often receive inadequate education about how best to mitigate risks once home. We sought to identify AKI survivors' perceived barriers to shared and informed decision-making regarding their AKI diagnosis and self-management.Study designSemistructured phone interviews were used to assess patients' perceived barriers and facilitators to AKI self-management after a hospital-related AKI event.Setting & participantsAKI survivors discharged from Duke University Hospital in Durham, NC, were recruited for interviews to discuss their AKI experiences. Those who received dialysis for AKI were excluded because their perceptions of AKI care were hypothesized to be much different from those of patients not requiring dialysis.Analytical approachTwenty-four interviews were conducted between May and August 2018. Interviews were recorded, transcribed, and analyzed by study team members to identify common themes and discrepancies and reach a final consensus.ResultsFive consistent themes emerged after thematic saturation: (1) patients were unaware of their AKI diagnosis; (2) patients lacked information about AKI and how to manage it at home; (3) patients identified a lack of understanding about AKI; (4) patients were concerned about dialysis; and (5) patients wanted to know how to prevent AKI in the future.LimitationsLimitations include recruitment from a single center, all study participants receiving a nephrology consultation, and several patients being unable to participate because of persistent illness following hospitalization.ConclusionsAKI survivors are unaware of their diagnosis, receive suboptimal education while hospitalized, and are not equipped with tools to mitigate risks following discharge. Patient-centered interventions promoting AKI awareness and self-management may improve long-term outcomes for high-risk AKI survivors.

Project description:BackgroundThe (GuideSafe™) Exposure Notification System (ENS) was built and deployed in (Alabama) for anonymous sending and receiving of COVID-19 exposure alerts to people who have been in close contact with someone who later reports a positive COVID-19 test. Little is known about how the demographic groups perceive recent privacy-preserving the ENS innovations, including their usability, usefulness, satisfaction, and continued interest in sharing COVID-19 exposure information. The purpose of this study was to investigate how users across the demographic groups perceive the sharing of exposure information with various types of organizations and to investigate how end-user perceptions of the ENS usability, usefulness, and satisfaction differ across the demographic groups within the context of a statewide deployment of an exposure notification system.MethodsA survey was administered to (state residents blinded for review) (N = 1,049) to assess propensity to share COVID-19 infection data and evaluate end-user perceptions about usability, usefulness, and satisfaction with the (Alabama) ENS. The ANOVA and the Tukey's Honestly Significant Difference (HSD) post-hoc tests were conducted to assess the demographic group differences.ResultsThe ENS survey participants had a high awareness of contact tracing, exposure notifications, and the (GuideSafe™) ENS and reported having downloaded the app. Survey results revealed the majority of participants rated the app as useful (n = 490, 79%), easy to use (n = 490, 79%), and reported satisfaction with its use (n = 546, 88%). Other results suggest that ethnicity and age may be important factors for trust in sharing exposure information.ConclusionThe (GuideSafe™) system was one integrated component of comprehensive education and work re-entry strategy across (Alabama) that reached a broad user base. Users across the different demographic groups perceive the sharing of information about their communicable disease exposures differently. Furthermore, demographic factors play a role in which types of organizations individuals are willing to share their communicable disease exposure information. Public health institutions, employers, schools, healthcare providers, and technology designers may want to consider these findings as they construct technologies and perform outreach campaigns aimed at reducing infection rates with the ENS and related technologies.

Project description:Evidence-based methods to identify behavioural problems among children are not regularly used within the Swedish Child healthcare. A new procedure was therefore introduced to assess children through parent- and preschool teacher reports using the Strengths and Difficulties Questionnaire (SDQ). This study aims to explore nurses', preschool teachers' and parents' perspectives of this new information sharing model. Using the grounded theory methodology, semi-structured interviews with nurses (n = 10) at child health clinics, preschool teachers (n = 13) and parents (n = 11) of 3-, 4- and 5-year-old children were collected and analysed between March 2014 and June 2014. The analysis was conducted using constant comparative method. The participants were sampled purposively within a larger trial in Sweden. Results indicate that all stakeholders shared a desire to have a complete picture of the child's health. The perceptions that explain why the stakeholders were in favour of the new procedure-the 'causal conditions' in a grounded theory model-included: (1) Nurses thought that visits after 18-months were unsatisfactory, (2) Preschool teachers wanted to identify children with difficulties and (3) Parents viewed preschool teachers as being qualified to assess children. However, all stakeholders had doubts as to whether there was a reliable way to assess children's behaviour. Although nurses found the SDQ to be useful for their clinical evaluation, they noticed that not all parents chose to participate. Both teachers and parents acknowledged benefits of information sharing. However, the former had concerns about parental reactions to their assessments and the latter about how personal information was handled. The theoretical model developed describes that the causal conditions and current context of child healthcare in many respects endorse the introduction of information sharing. However, successful implementation requires considerable work to address barriers: the tension between normative thinking versus helping children with developmental problems for preschool teachers and dealing with privacy issues and inequity in participation for parents.

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

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