Abstract:

Objective To gain insights into the perception of the disease experience and recurrence risk from the perspective of patients who experienced first-ever and recurrent stroke. Methods A phenomenological approach was conducted and a total of 19 stroke survivors were enrolled for semi-structural in-depth interviews. Colaizzi method was used to analyze the data. Results The abstraction process generated 3 categories according to the number of recurrences,which showed different characteristics. First-ever stroke survivors could identify anomalies but lacked of professional information resources;they could actively seek treatment with awareness of benefits of timely hospitalization;they were overoptimistic towards prognosis and easily overlooked the risk of recurrence. For the patients with a second stroke,adequate information about warning signs was still needed;they perceived the severity of recurrent stroke and aroused self-reproach and self-examination;susceptibility of recurrence,sense of powerlessness and the loss of control were experienced. Regarding to patients with multiple recurrences,their social participation ability significantly decreased;they perceived no visible benefits of behavioral changes;they started to focus on life and death with positive or negative acceptance of recurrence. Conclusion Despite differences of patients,inadequate awareness of recurrence risks is a common phenomenon. It is recommended to develop a classified health guidance according to patients’ recurrence times,to implement risk communication education to promote disease awareness and recurrent risk perception of stroke survivors.

Key words: Stroke, Stroke, Disease Experience, Disease Experience, Recurrence Risk Perception, Recurrence Risk Perception, Qualitative Study, Qualitative Study, Nursing Care, Nursing Care

摘要：

目的 了解首发与复发脑卒中患者的疾病体验,探讨脑卒中患者复发风险感知的特征及变化。 方法 采用现象学研究方法,对19例脑卒中患者进行半结构式深入访谈,运用Colaizzi 7步分析法对访谈资料进行分析。结果 首发、首次复发和多次复发脑卒中患者的疾病体验和复发风险感知各有特征。首发脑卒中患者:可识别异常但缺乏专业信息渠道,主动就诊意识强并感知及时就诊益处大,预后态度过于乐观易忽略复发风险;首次复发脑卒中患者:复发警示症状感知水平有待提高,感知复发严重且能自觉反思,复发担忧、疾病控制无力感与无用感交织;多次复发脑卒中患者:社会参与能力明显下降,质疑行为改变益处,积极或消极接受复发且生死观话题突出。 结论 首发与复发脑卒中患者的疾病体验和复发风险感知水平不同,普遍存在复发风险意识不足的现象,建议根据发作次数设计分类健康指导方案,关注复发风险并实施风险沟通教育,提高脑卒中患者疾病认识和复发风险感知水平。

关键词: 脑卒中, 脑卒中, 疾病体验, 疾病体验, 复发风险感知, 复发风险感知, 质性研究, 质性研究, 护理, 护理