Benham-Hutchins Marge, Staggers Nancy, Mackert Michael, Johnson Alisha H, deBronkart Dave
School of Nursing, University of Texas at Austin, 1710 Red River (D0100), Austin, TX, 78701, USA.
Department of Biomedical Informatics and College of Nursing, University of Utah, 5977 E. Pioneer Fork Road, Salt Lake City, UT, 84108, USA.
BMC Health Serv Res. 2017 Aug 4;17(1):529. doi: 10.1186/s12913-017-2487-6.
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.
以患者为中心的医疗护理促进了医疗团队中最突出且最重要的成员——患者，作为信息交流和决策的积极参与者的融入。慢性病患者的自我管理要求患者弥合多个护理场所和提供者之间的差距。住院治疗常常会打乱已建立的自我管理常规。住院期间获取医疗信息反映了患者参与自身护理的权利，并且有可能改善自我管理，以及促进住院期间及出院后的明智决策。本研究的目的是了解慢性病患者对住院期间所需医疗信息内容及获取方式的看法。
本探索性研究采用了定性研究方法。在线调查包括研究团队创建的开放式和有限回答式调查、人口统计学和医院特征问题，以及患者激活度量工具（PAM®）。通过患者支持小组、电子邮件邀请、邮件列表和博客，采用便利抽样和社交媒体滚雪球抽样的方式招募参与者。研究团队运用了描述性统计和定性内容分析技术。
研究样本（n = 34）年龄范围为20至76岁（μ = 48；标准差 = 16.87），白人（91%，n = 31），女性（88%，n = 30），且受教育程度很高（64%，n = 22为大学毕业生）。PAM®调查显示样本的激活程度很高。对开放式问题回答的定性分析得出了六个主题：照顾自己；我想了解一切；在交接班和查房时让我参与；我的期望；你们没在听；以及跟踪我的健康信息。
本研究表明，住院患者希望参与医护人员的讨论，如护理床边交接班和医疗查房。只有少数参与者从医院到家中的过渡顺利。参与者对住院期间及出院后医护人员之间沟通失败以及干扰患者与医护人员沟通流程的医护人员行为表示沮丧。患者还表示有兴趣保存自己的健康史和信息，但大多数人在住院期间不得不“拼凑”各种方法来跟踪自己不断变化的病情。
