终末期心力衰竭患者疾病体验的质性研究

韦学萍; 范西真; 方媛; 陆朦

doi:10.16766/j.cnki.issn.1674-4152.002414

终末期心力衰竭患者疾病体验的质性研究

doi: 10.16766/j.cnki.issn.1674-4152.002414

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，安徽合肥 230001

基金项目:

安徽省重点研究与开发计划项目 1704f0804014

详细信息

通讯作者:
范西真，E-mail：fanxizhen@medmail.com.cn

中图分类号: R541.6
计量
- 文章访问数: 117
- HTML全文浏览量: 86
- PDF下载量: 2
- 被引次数: 0
出版历程
- 收稿日期: 2021-10-31
- 网络出版日期: 2022-08-20

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

Department of Cardiology, the First Affiliated Hospital of USTC, Division of Life Sciences and Medicine, University of Science and Technology of China, Hefei, Anhui 230001, China

摘要

摘要: 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。
- 终末期 /
- 心力衰竭 /
- 疾病体验 /
- 质性研究
Abstract: 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.
- End-stage /
- Heart failure /
- Disease experience /
- Qualitative research

HTML全文

表 1 受访者一般资料

Table 1. Respondent General Information

编号	性别	年龄(岁)	文化程度	婚姻状况	医保类型	职业
S1	男	53	初中	已婚	异地居民	个体户
S2	男	66	小学	已婚	异地居民	农民
S3	男	87	小学	已婚	省职工	退休
S4	男	80	初中	已婚	省职工	退休
S5	女	71	小学	已婚	异地居民	农民
S6	男	86	中专	已婚	市职工	退休
S7	男	33	初中	未婚	异地居民	无业
S8	女	54	小学	已婚	异地居民	无业
S9	女	71	文盲	已婚	异地居民	无业
S10	男	54	初中	已婚	合肥市居民	技工
S11	男	47	高中	已婚	合肥市医保	运动员
S12	女	52	小学	已婚	异地城乡	销售
S13	男	34	初中	已婚	合肥市职工	司机
S14	女	61	小学	已婚	合肥市职工	退休
S15	男	60	高中	离婚	安徽省职工	退休
S16	男	40	初中	已婚	异地城乡	无业
S17	男	66	本科	已婚	合肥市居民	退休
S18	男	31	初中	已婚	合肥市居民	中介职员

下载: 导出CSV

表 2 访谈提纲

Table 2. Interview outline

编号	访谈内容
1	请您谈谈每次发病时的症状体验(最主要的、最深刻的症状)。
2	请您谈谈目前的疾病阶段您的心理感受和体验，您有哪些困难？
3	请您谈谈您目前的生活现状，请对您目前的生活现状进行评价。
4	请您谈谈您目前对心力衰竭疾病是如何认识的(心力衰竭是怎样的一种疾病)？
5	请您谈谈您在心力衰竭疾病自我管理方面的认识、做法和态度。
6	请您谈谈心力衰竭疾病目前对您的家庭产生了哪些影响？

下载: 导出CSV

参考文献(16)

[1]	CRESPO-LEIRO M G, METRA M, LUND L H, et al. Advanced heart failure: A positionstatement of the heart failure association of the european society of cardiology[J]. Eur J Heart Fail, 2018, 20(11): 1505-1535. doi: 10.1002/ejhf.1236
[2]	中华医学会心血管病学分会心力衰竭学组, 中国医师协会心力衰竭专业委员会, 中华心血管病杂志编辑委员会. 中国心力衰竭诊断和治疗指南2018[J]. 中华心力衰竭和心肌病杂志, 2018, 2(4): 196-197, 225. https://www.cnki.com.cn/Article/CJFDTOTAL-ZLYS201904009.htm Heart Failure Group, Chinese Society of Cardiology, Chinese Medical Doctor Association, Heart Failure Committee, Editorial Committee of Chinese Journal of Cardiology. Chinese guideline for diagnosis and treatment of heart failure 2018[J]. Chinese Journal of Cardiology, 2018, 2(4): 196-197, 225. https://www.cnki.com.cn/Article/CJFDTOTAL-ZLYS201904009.htm
[3]	张盼盼, 田晶, 杨弘, 等. 基于随机森林的慢性心力衰竭患者报告结局量表的预后评估价值[J]. 郑州大学学报(医学版), 2020, 55(6): 786-790. https://www.cnki.com.cn/Article/CJFDTOTAL-HNYK202006011.htm ZHANG P P, TIAN J, YANG H, et al. Prognostic value of the reported outcome scale for patients with chronic heart failure based on random forest[J]. Journal of Zhengzhou University(Medical Sciences), 2020, 55(6): 786-790. https://www.cnki.com.cn/Article/CJFDTOTAL-HNYK202006011.htm
[4]	商淑华, 孙国珍, 陈媛媛. 终末期心力衰竭患者真实体验的质性研究[J]. 中国实用护理杂志, 2019, 35(5): 331-336. doi: 10.3760/cma.j.issn.1672-7088.2019.05.003 SHANG S H, SUN G Z, CHEN YUANYUAN. A qualitative research of true experience in patients with end-stage heart failure[J]. Chinese Journal of Practical Nursing, 2019, 35(5): 331-336. doi: 10.3760/cma.j.issn.1672-7088.2019.05.003
[5]	KIM H, SEFCIK J S, BRADWAY C. Characteristics of qualitative descriptive studies: A systematic review[J]. Res Nurs Health, 2017, 40(1): 23-42. doi: 10.1002/nur.21768
[6]	PARK K O, PARK S H, YU M. Physicians' experience of communication with nurses related to patient safety: A phenomenological study using the colaizzi method[J]. Asian Nurs Res, 2018, 12(3): 166-174. doi: 10.1016/j.anr.2018.06.002
[7]	桑渊唯, 陈丽. 急性左心衰院前急救和转运的护理干预[J]. 吉林医药学院学报, 2019, 40(4): 272-273. https://www.cnki.com.cn/Article/CJFDTOTAL-JLDS201904013.htm SANG Y W, CHEN L. Nursing intervention of pre-hospital first aid and transport of acute left heart failure[J]. Journal of Jilin Medical College, 2019, 40(4): 272-273. https://www.cnki.com.cn/Article/CJFDTOTAL-JLDS201904013.htm
[8]	郭娟, 毕清泉. 老年慢性心力衰竭患者乐观应对和社会支持及营养评价与生命质量的关系分析[J]. 中华全科医学, 2020, 18(12): 2047-2050, 2135. doi: 10.16766/j.cnki.issn.1674-4152.001685 GUO J, BI Q Q. Analysis of the relationship between optimistic coping style, social support, nutrition evaluation and quality of life in elderly patients with chronic heart failure[J]. Chinese Journal of General Practice, 2020, 18(12): 2047- 2050, 2135. doi: 10.16766/j.cnki.issn.1674-4152.001685
[9]	张烜舜, 孙梦雯, 严光, 等. 冻干重组人脑利钠肽治疗老老年慢性心力衰竭患者的疗效观察[J]. 中华全科医学, 2018, 16(12): 1964-1966, 1999. doi: 10.16766/j.cnki.issn.1674-4152.000535 ZHANG H S, SUN M W, YAN G, et al. Clinical effect of lyophilized recombinant human brain natriuretic peptide on chronic congestive heart failure in the very old patients[J]. Chinese Journal of General Practice, 2018, 16(12): 1964-1966, 1999. doi: 10.16766/j.cnki.issn.1674-4152.000535
[10]	刘冠英, 蔡洵红, 区秀青, 等. 早期心脏康复护理在慢性心力衰竭病人中的应用研究[J]. 循证护理, 2021, 7(5): 671-674. https://www.cnki.com.cn/Article/CJFDTOTAL-XZHL202105022.htm LIU G Y, CAI X H, QU X Q, et al. Application study on early cardiac rehabilitation nursing in patients with chronic heart failure[J]. Chinese Evidence-based Nursing, 2021, 7(5): 671-674. https://www.cnki.com.cn/Article/CJFDTOTAL-XZHL202105022.htm
[11]	莫然, 谭慧琼, 刘少帅, 等. 我国心力衰竭患者疾病认知程度的现况调查[J]. 中国循环杂志, 2020, 35(4): 355-360. doi: 10.3969/j.issn.1000-3614.2020.04.007 MO R, TAN H Q, LIU S S, et al. Current status on knowledge of heart failure among heart failure patients in China[J]. Chinese Circulation Journal, 2020, 35(4): 355-360. doi: 10.3969/j.issn.1000-3614.2020.04.007
[12]	MAMAS M A, SPERRIN M, WATSON M C, et al. Do patients have worse outcomes in heart failure than in cancer?A primary care-based cohort study with 10-yearfollow-up in Scotland[J]. Eur J Heart Fail, 2017, 19(9): 1095-1104. doi: 10.1002/ejhf.822
[13]	邱爱平, 王靖怡, 刘胜姣. 心理护理干预对老年慢性心力衰竭患者情绪、心功能及生活质量的影响[J]. 海南医学, 2020, 31(13): 1766-1768. doi: 10.3969/j.issn.1003-6350.2020.13.037 QIU A P, WANG JY, LIU S J. Effect of psychological nursing intervention on mood, cardiac function, and quality of life in elderly patients with chronic heart failure[J]. Hainan Medical Journal, 2020, 31(13): 1766-1768. doi: 10.3969/j.issn.1003-6350.2020.13.037
[14]	宋红霞, 韩梅, 田敏, 等. 终末期心脏病患者在院期间心理状况的质性研究[J]. 中国实用护理杂志, 2017, 33(5): 380-383. doi: 10.3760/cma.j.issn.1672-7088.2017.05.016 SONG H X, HAN M, TIAN M, et al. A qualitative study on the psychological experiences of the patients with end-stage cardiopathy[J]. Chinese Journal of Practical Nursing, 2017, 33(5): 380-383. doi: 10.3760/cma.j.issn.1672-7088.2017.05.016
[15]	柳秋实, 魏子秀, 李伟, 等. 自尊、心理控制源在慢性心力衰竭老年患者再入院次数和自我感受负担间的多重中介作用[J]. 中华行为医学与脑科学杂志, 2020, 29(5): 458-463. doi: 10.3760/cma.j.cn371468-20200304-01089 LIU Q S, WEI Z X, LI W, et al. Multiple mediating effects of self-esteem and source of psychological control on readmission and self-perceived burden in elderly with chronic heart failure[J]. Chinese Journal of Behavioral Medicine and Brain Science, 2020, 29(5): 458-463. doi: 10.3760/cma.j.cn371468-20200304-01089
[16]	蒋维连, 李芳, 杨平, 等. 老年慢性心力衰竭患者的多学科健康素养管理实践[J]. 中华全科医学, 2021, 19(3): 416-420. doi: 10.16766/j.cnki.issn.1674-4152.001825 JIANG W L, LI F, YANG P, et al. Multidisciplinary health literacy management practices in elderly patients with chronic heart failure[J]. Chinese Journal of General Practice, 2021, 19(3): 416-420. doi: 10.16766/j.cnki.issn.1674-4152.001825