[1]曹宁宁,范秀珍.青少年系统性红斑狼疮患者父母照护体验的质性研究[J].军事护理,2023,40(03):66-69.[doi:10.3969/j.issn.2097-1826.2023.03.016]
 CAO Ningning,FAN Xiuzhen.Parents' Experiences of Caring for Adolescents with Systemic Lupus Erythematosus:A Qualitative Study[J].Nursing Journal Of Chinese People's Laberation Army,2023,40(03):66-69.[doi:10.3969/j.issn.2097-1826.2023.03.016]
点击复制

青少年系统性红斑狼疮患者父母照护体验的质性研究
分享到:

《军事护理》[ISSN:2097-1826/CN:31-3186/R]

卷:
40
期数:
2023年03期
页码:
66-69
栏目:
研究生毕业论文专栏
出版日期:
2023-03-15

文章信息/Info

Title:
Parents' Experiences of Caring for Adolescents with Systemic Lupus Erythematosus:A Qualitative Study
文章编号:
2097-1826(2023)03-0066-04
作者:
曹宁宁1范秀珍2
(1.山东大学附属省立医院 风湿免疫科,山东 济南 250021; 2.山东大学齐鲁医学院 护理与康复学院,山东 济南 250012)
Author(s):
CAO Ningning1FAN Xiuzhen2
(1.Department of Rheumatology and Immunology,Shandong Provincial Hospital,Shandong University,Jinan 250021,Shandong Province,China; 2.School of Nursing and Rehabilitation,Cheeloo College of Medicine,Shandong University,Jinan 250012,Shandong,China)
关键词:
青少年 系统性红斑狼疮 父母 照护体验 质性研究
Keywords:
adolescents systemic lupus erythematosus parents caring experience qualitative study
分类号:
R47
DOI:
10.3969/j.issn.2097-1826.2023.03.016
文献标志码:
A
摘要:
目的 探讨青少年系统性红斑狼疮患者父母的照护体验。方法 采用目的抽样法,选取2021年4月至2022年3月在济南市某三级甲等医院风湿免疫科住院的青少年系统性红斑狼疮患者的父母作为研究对象,对其进行半结构式深入访谈,采用Colaizzi现象学7步分析法对访谈资料进行分析。结果 青少年系统性红斑狼疮患者父母照护体验可归纳为5个主题:负性情绪、知识缺乏、照顾负担、创伤后成长和期待未来。结论 护士应关注青少年系统性红斑狼疮患者父母的照护体验和感受,并对其提供疾病知识及心理疏导等专业支持,从而改善其心理状态,实现对患者的最佳照护。
Abstract:
Objective To explore the parents' experiences of caring for adolescents with systemic lupus erythematosus(SLE).Methods Purposive sampling was used to select parents of SLE adolescents for semi-structured in-depth interviews from the Department of Rheumatology and Immunology in a tertiary hospital in Jinan City from April,2021 to March,2022.The Colaizzi phenomenological 7-step analysis method was used to analyze the interview data.Results Five themes on the parents' experiences of caring for SLE adolescents were summarized,including negative emotions,lack of knowledge,caring burden,post-traumatic growth and expectations for future.Conclusions Nurses should pay attention to the parents' experiences and feelings of caring for SLE adolescents,and provide them with professional supports in disease information and psychological counseling,so as to improve their mental status and achieve optimal care for the patients.

参考文献/References:

[1] 中华医学会风湿病学分会,国家皮肤与免疫疾病临床医学研究中心,中国系统性红斑狼疮研究协作组.2020中国系统性红斑狼疮诊疗指南[J].中华内科杂志,2020,59(3):172-185.
[2] CHARRAS A,SMITH E,HEDRICH C M.Systemic lupus erythematosus in children and young people[J/OL].[2023-02-02].
[3] 巩树梅,王怡沁,毛海颖,等.气管内异物患儿父母照护体验的质性研究[J].解放军护理杂志,2018,35(1):20-24.
[4] 李峥,刘宇.护理学研究方法[M].北京:人民卫生出版社,2015:260-261.
[5] DANKERT A,DURAN G,ENGST-HASTREITER U,et al.Fear of progression in patients with cancer,diabetes mellitus and chronic arthritis[J].Rehabilitation(Stuttg),2003,42(3):155-163.
[6] BANDURA A.Self-efficacy:toward a unifying theory of behavioral change[J].Psychol Rev,1977,84(2):191-215.
[7] 马燕,戴谦,杜琳.白血病患儿患病期间父母真实体验的质性研究[J].护士进修杂志,2019,34(23):2174-2177.
[8] 彭梦云,吴丽,赵方方,等.脑瘫患儿父母照护体验质性研究的Meta整合[J].中国护理管理,2020,20(9):1379-1385.
[9] 王蕾,汪秋伊,李星,等.系统性红斑狼疮网络健康信息的可读性评估[J].护理研究,2020,34(24):4344-4349.
[10]李香风,王心茹,王多多,等.系统性红斑狼疮患者家庭抗逆力与照顾负担的相关性研究[J].护理学杂志,2021,36(15):60-63.
[11]UZUNER S,DURCAN G,SAHIN S,et al.Caregiver burden and related factors in caregivers of patients with childhood-onset systemic lupus erythematosus[J].Clin Rheumatol,40(12):5025-5032.
[12]WALSH F.Applying a family resilience framework in training,practice,and research:mastering the art of the possible.[J].Fam Process,2016,55(4):616-632.
[13]陆朋玮,孙静,连冬梅,等.风湿性疾病患儿父母创伤后成长的质性研究[J].中国护理管理,2017,17(8):1141-1145.
[14]范艳竹,陆朋玮,李倩.颅脑肿瘤患儿父母疾病不确定感及应对方式的调查[J].中华现代护理杂志,2019,25(30):3858-3861.
[15]辛菊花,杨巧芳,申文佳.慢性病患者家庭抗逆力的研究进展[J].职业与健康,2022,38(5):712-715.
[16]刘翱搏,支慧,尹红梅,等.Williams生活技能训练对系统性红斑狼疮患儿父母应对方式的影响[J].中华现代护理杂志,2020,26(21):2880-2884.
[17]田新平,李梦涛,曾小峰.我国系统性红斑狼疮的诊治现状与未来发展方向:来自中国系统性红斑狼疮发展报告2020年年度报告[J].中华内科杂志,2022,61(6):611-616.

相似文献/References:

[1]陈海丽,肖志田,叶敬花,等.青少年癫痫患儿过渡期护理需求的研究进展[J].军事护理,2021,38(05):71.[doi:10.3969/j.issn.1008-9993.2021.05.019]
[2]袁书琪,王会儒,钱丽萍,等.运动干预对改善系统性红斑狼疮患者疲乏的Meta分析[J].军事护理,2021,38(07):20.[doi:10.3969/j.issn.1008-9993.2021.07.005]
 YUAN Shuqi,WANG Huiru,QIAN Liping,et al.Effects of Exercise on Improving Fatigue of Patients with Systemic Lupus Erythematosus: A Meta-Analysis[J].Nursing Journal Of Chinese People's Laberation Army,2021,38(03):20.[doi:10.3969/j.issn.1008-9993.2021.07.005]
[3]周黎雪,姜云霞,周云平,等.支持不当评估量表的汉化及其信效度检验[J].军事护理,2022,39(03):1.[doi:10.3969/j.issn.1008-9993.2022.03.001]
 ZHOU Lixue,JIANG Yunxia,ZHOU Yunping,et al.Chinese Translation of the Problematic Support Scale and Its Reliability and Validity Testing[J].Nursing Journal Of Chinese People's Laberation Army,2022,39(03):1.[doi:10.3969/j.issn.1008-9993.2022.03.001]
[4]温敬冬,宁松毅,周胜蓝,等.青少年1型糖尿病患者疾病感受与体验的质性研究[J].军事护理,2022,39(05):35.[doi:10.3969/j.issn.1008-9993.2022.05.009]
 WEN Jingdong,NING Songyi,ZHOU Shenglan,et al.The Disease Perceptions and Experience of Adolescents with Type 1 Diabetes: A Qualitative Research[J].Nursing Journal Of Chinese People's Laberation Army,2022,39(03):35.[doi:10.3969/j.issn.1008-9993.2022.05.009]

备注/Memo

备注/Memo:
【 收稿日期 】 2022-07-07 【 修回日期 】 2023-02-02
【 作者简介 】 曹宁宁,硕士在读,电话:0531-68776555
【 通信作者 】 范秀珍,电话:0531-88380230
更新日期/Last Update: 2023-03-15