终末期心力衰竭患者疾病体验的质性研究

Qualitative study of disease experience in patients with end-stage heart failure

目的了解终末期心力衰竭患者的真实疾病体验,为制定有效的照护策略提供依据。方法采用现象学研究方法,对2021年4月—2021年6月在中国科学技术大学附属第一医院(安徽省立医院南区)心内科三病区住院的18例终末期心力衰竭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。结果终末期心力衰竭患者疾病体验在症状层面:体验深刻,以负性体验为主;在心理体验方面:青年患者心理负担重,对预后担忧,以负性体验为主,老年患者心理应对良好,能坦然面对疾病,以正性体验为主;在生活质量层面:均为负性体验;在家庭支持层面:青年患者家庭支持缺乏,经济负担重,负性体验多,老年患者家庭支持充足,得到关爱更多,正性体验多;在疾病认知层面:均为负性体验;在自我管理层面:体验有差异,青年患者由开始的负性体验转向正性体验,老年患者由开始的正性体验转变为负性体验。结论终末期心力衰竭患者疾病体验为正性和负性疾病体验共存,在疾病认知层面均为负性体验,在自我管理层面的疾病体验有差异。终末期心力衰竭患者应加强症状管理,减轻痛苦,提高生活质量;应加强疾病知识教育,做好疾病早期预防,控制疾病进展;应根据不同年龄阶段的特点,制定有效的照护策略,满足需求。

Objective To understand the real disease experience of patients with end-stage heart failure and provide a basis for the development of effective care strategies.Methods Using phenomenological research methods,semi structured in-depth interviews were conducted with 18 end-stage heart failure patients hospitalized in the heart failure center of the First Affiliated Hospital of the University of Science and Technology of China from April 2021 to June 2021,and the interview data were analyzed using Colaizzi 7-step analysis.Results Analysis of the disease experience of 18 patients with end-stage heart failure revealed that at the symptom level:the experience was deep and dominated by negative experience.At the level of psychological experience:young patients had a heavy psychological burden and were worried about the prognosis,with negative experience predominating,while older patients had good psychological coping and could face the disease openly,with positive experience predominating.At the level of quality of life:all heart failure patients had a negative experience.At the level of family support:young patients lacked family support,had a heavy financial burden,and had more negative experiences,while elderly patients had adequate family support,received more care,and had more positive experiences.At the level of disease perception:there were differences in experience among patients of different ages.Young patients changed from initial negative experience to positive experience,while elderly patients changed from initial positive experience to negative experience.Conclusion Patients with end-stage heart failure experience the coexistence of positive and negative disease experiences.All patients have negative experiences at the level of disease perception,and there are differences in experiences at the level of self-management.Patients with end-stage heart failure should have enhanced symptom management to reduce suffering and improve quality of life.Education on disease knowledge should be strengthened to provide early prevention and control disease progression,and effective care strategies should be developed to meet different needs according to the characteristics of different age groups.