血友病疾病感知和需求质性研究的Meta整合  

Meta Integration of Qualitative Research on Illness Perception and Needs in Hemophilia Patients

作　　者：竺晨 史颜凯 卫心怡 陈全全 毛小培[4] 张晓兰[5] ZHU Chen;SHI Yan-kai;WEI Xin-yi;CHEN Quan-quan;MAO Xiao-pei;ZHANG Xiao-lan(School of Nursing,Zhejiang Chinese Medical University,Hangzhou 310053,Zhejiang Province,China;School of Nursing,Hangzhou Normal University,Hangzhou 311121,Zhejiang Province,China;Department of Joint diagnosis and treatment center,The First Affiliated Hospital of Zhejiang Chinese Medical University(Zhejiang Provincial Hospital of Chinese Medicine),Hangzhou 310006,Zhejiang Province,China;Department of Hematology,The First Affiliated Hospital of Zhejiang Chinese Medical University(Zhejiang Provincial Hospital of Chinese Medicine),Hangzhou 310006,Zhejiang Province,China;Department of Nursing,The First Affiliated Hospital of Zhejiang Chinese Medical University(Zhejiang Provincial Hospital of Chinese Medicine),Hangzhou 310006,Zhejiang Province,China)

机构地区：[1]浙江中医药大学护理学院,浙江杭州310053 [2]杭州师范大学护理学院,浙江杭州311121 [3]浙江中医药大学附属第一医院(浙江省中医院)关节病诊疗中心,浙江杭州310006 [4]浙江中医药大学附属第一医院(浙江省中医院)血液科,浙江杭州310006 [5]浙江中医药大学附属第一医院(浙江省中医院)护理部,浙江杭州310006

出　　处：《罕少疾病杂志》2024年第11期1-3,共3页Journal of Rare and Uncommon Diseases

基　　金：浙江省中医药科技计划项目(2024ZL394);浙江省医药卫生科技计划项目(2024KY1206)。

摘　　要：目的系统评价血友病患者(people with hemophilia,PWH)疾病感知和需求的质性研究。方法检索PubMed、Web of Science、Cochrane Library、Embase、CINAHL、中国知网、万方、维普及中国生物医学文献数据库中有关PWH疾病感知和需求的质性研究。检索时限为建库至2024年1月。采用澳大利亚JBI循证卫生保健中心质性研究质量评价标准评价文献质量,以Meta整合方法对结果进行归纳和整合。结果共纳入17篇文献,提炼55个主题,归纳8个类别,形成4个整合结果:疾病症状困扰使日常生活受阻;社交和家庭关系受到重创;调适与应对;存在多方面未满足的需求。结论PWH存在多方面疾病感知和需求,医护人员应多角度关注并评估其负性情绪,完善社会多维度支撑体系,协助其制定个性化自我管理策略,联合多学科构建持续性专业支持系统。Objective To synthesize qualitative research on illness perceptions and needs among people with hemophilia(PWH).Methods We searched databases including PubMed,Web of Science,Cochrane Library,Embase,CINAHL,CNKI,Wanfang,VIP,and CBM until January 2024.Studies were appraised using the JBI Critical Appraisal Tool,and data were synthesized via meta-integration.Results Analysis of 17 studies revealed 55 themes across 8 categories,highlighting 4 key insights:symptoms disrupting daily activities,impacts on masculinity,adaptive responses,and diverse unmet needs.Conclusion PWH face complex experiences affecting both physical and mental health.It is crucial for healthcare providers to offer comprehensive emotional evaluations,multidimensional social support,personalized self-management strategies,and foster interdisciplinary collaborations to meet their holistic needs.

关 键 词：血友病 男性 疾病体验 质性研究 Meta整合 护理 

分 类 号：R554.1[医药卫生—血液循环系统疾病]