Haidet Paul, Kroll Tony L, Sharf Barbara F
The Houston Center for Quality of Care and Utilization Studies, The DeBakey VA Medical Center, and Baylor College of Medicine, 2002 Holcombe Blvd, 152, Houston, TX 77030, USA.
Patient Educ Couns. 2006 Sep;62(3):323-9. doi: 10.1016/j.pec.2006.06.005. Epub 2006 Aug 2.
To describe the meaning of active participation from the patient's perspective.
We used a narrative framework to analyze transcripts generated from 16 qualitative open-ended, semi-structured interviews with primary care patients in Houston, Texas.
Patients' illness narratives reflected several themes related to patient participation. These included patients' perspectives of illness (i.e., how central the illness is in the patient's overall life story and how changeable the patient believes their illness to be) and aspects of actions pursued in the context of patients' illness narratives (i.e., the degree of illness-related activity that a patient engages in and the role of partnership with the patient's physician in health decision making and illness management). The relationships among these themes explained a limited number of distinct illness-management strategies pursued by patients.
Our findings revealed a level of complexity to patients' healthcare participation that has not been previously described. Patients' illness-management strategies were explained by four thematic story elements in dynamic interplay with unique variations for each individual. Further research is needed to explore how these story elements influence communication between patients and physicians.
By understanding the nature of and relationships between the thematic elements in patients' illness narratives, practitioners will be able to better inform their negotiations with patients regarding participation in healthcare.
从患者角度描述积极参与的意义。
我们采用叙事框架，分析了对德克萨斯州休斯顿市初级保健患者进行的16次定性开放式半结构化访谈所产生的文字记录。
患者的疾病叙事反映了与患者参与相关的几个主题。这些主题包括患者对疾病的看法（即疾病在患者整体生活故事中的核心程度以及患者认为其疾病的可变化程度）以及在患者疾病叙事背景下所采取行动的各个方面（即患者参与的与疾病相关活动的程度以及与患者的医生在健康决策和疾病管理中的伙伴关系的作用）。这些主题之间的关系解释了患者所采取的有限数量的不同疾病管理策略。
我们的研究结果揭示了患者医疗参与程度的复杂性，这是此前未曾描述过的。患者的疾病管理策略由四个主题故事元素在动态相互作用中以及每个个体的独特差异来解释。需要进一步研究以探索这些故事元素如何影响患者与医生之间的沟通。
通过理解患者疾病叙事中主题元素的性质及其之间的关系，从业者将能够更好地就患者参与医疗保健的问题与患者进行协商。
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