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首页> 外文期刊>BMC Health Services Research >“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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“I want to know everything”: a qualitative study of perspectives from patients with chronic diseases on sharing health information during hospitalization

机译：“我想什么都知道”：对慢性病患者住院期间共享健康信息观点的定性研究

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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.
机译：以患者为中心的护理促进了医疗团队中最杰出和最重要的成员，即患者，积极参与信息交换和决策。病人对慢性病的自我管理要求病人弥合多种护理环境和提供者之间的鸿沟。住院治疗通常会破坏既定的自我管理程序。住院期间访问医疗信息反映了患者在自己的护理中有伴侣的权利，并有可能改善自我管理并促进住院期间和之后的明智决策。这项研究的目的是就慢性疾病患者在住院期间所需的医疗信息内容和获取途径提出看法。这项探索性研究纳入了定性方法。在线调查包括研究团队创建的开放式和有限响应调查，人口统计学和医院特征问题以及患者激活测量工具（PAM？）。便利和社交媒体滚雪球采样用于通过患者支持小组，电子邮件邀请，列表服务和博客来招募参与者。研究团队采用了描述性统计和定性内容分析技术。研究样本（n = 34）的年龄介于20至76岁之间（μ= 48，SD = 16.87），白种人（91％，n = 31），女性（88％，n = 31）。 =？30）和受过高等教育（64％，n？=？22是大学毕业生）。 PAM？调查显示样品高度活化。对开放式问题解答的定性分析产生了六个主题：关爱自己;我想知道一切;在交接和回合中包括我;我所期望的;你没听和跟踪我的健康信息。这项研究表明，住院患者希望包括在提供者讨论中，例如护理床旁移交和医疗回合。只有少数参与者能够顺利地从医院过渡到家庭。参与者对住院期间和之后其提供者之间的通信失败以及对患者提供者沟通过程造成干扰的提供者行为感到沮丧。患者还发现有兴趣保持自己的健康史和信息，但大多数患者不得不“凑齐”各种方法来跟踪住院期间不断变化的状况。

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