艾滋病人群家庭生态在疾病管理中的困境与反思  

The dilemma and reflection of family ecosystem of people with HIV(PWH) in illness management

作　　者：谢美莲 张志云[1] 王克荣[1] 于艳平[1] 林兆霞[1] 马晓靖[1] 于争丽 科建雪 XIE Meilian;ZHANG Zhiyun;WANG Kerong;YU Yanping;LIN Zhaoxia;MA Xiaojing;YU Zhengli;KE Jianxue(Beijing Ditan Hospital,Capital Medical University,Beijing 100015 China)

机构地区：[1]首都医科大学附属北京地坛医院,100015

出　　处：《全科护理》2024年第20期3892-3896,共5页Chinese General Practice Nursing

摘　　要：目的:分析艾滋病人群在疾病发生、发展进程中家庭因素的作用与面对的问题。方法:采用定量与定性的混合型研究设计,在北京市某艾滋病定点医疗机构便利性抽样选取375例艾滋病确诊病人,采用网络问卷形式采集参与者的基本人口学资料、家庭现况,继而采用目的抽样法选取8例答卷者进行访谈,最终将两部分资料进行整合,分析家庭相关因素在疾病管理中的作用。结果:单因素分析结果显示,不同职业状况(χ^(2)=17.369,P=0.026)、家庭月收入(χ^(2)=26.542,P<0.001)、家庭居住区域(χ^(2)=13.823,P=0.001)的艾滋病病人CD_(4)^(+) T淋巴细胞计数比较差异有统计学意义。定性研究部分的资料分析最终提炼出3个主题,分别为爱与被爱中提升与坚持;愧疚与负累中被迫远离;耻辱中无法面对长辈亲情。定性与定量结果的汇总分析呈现出家庭在艾滋病人群疾病管理中的特殊意义。结论:家庭在艾滋病人群内心中呈现出的两面性仍然提示在未来疾病管理中的无限潜能。在遵循伦理的背景下,冲破传统保守认知的束缚,探讨基于家庭生态的良性互助照护模式将成为未来思考的方向。而要实现家庭生态客观因素的积极正向作用,则需要国家政策层面的大力扶持与变革。Objective:This study aims to analyze the role and challenges of family factors in the occurrence and progression of disease among the PWH.Methods:A mixed-methods research design was employed,involving both quantitative and qualitative approaches.A total of 375 PWH were conveniently selected from a designated AIDS medical institution in Beijing.Basic demographic data and family status of the participants were collected through an online questionnaire.The two datasets were subsequently integrated to examine the influence of family-related factors on disease management.Results:Univariate analysis revealed significant differences in CD 4+T cell counts based on various occupational statuses(χ^(2)=17.369,P=0.026),monthly family income(χ^(2)=26.542,P<0.001),and family living area(χ^(2)=13.823,P=0.001).In the qualitative component of the research,data analysis identified three key themes:the importance of love and being loved in promoting persistence;feelings of guilt and burden leading to social withdrawal;and the inability to confront the humiliation experienced by older family members.The synthesis of qualitative and quantitative findings underscores the critical role of family in the management of diseases among PWH.Conclusions:The dual nature of family in the lives of PWH highlights significant potential for future disease management strategies.In light of ethical considerations,it is essential to challenge traditional conservative beliefs and explore a model of mutual support based on family ecology.Achieving the positive impact of objective family ecological factors will require robust support and reform at the national policy level.

关 键 词：艾滋病 人类免疫缺陷病毒 家庭生态 疾病管理 健康照护 

分 类 号：R473.5[医药卫生—护理学]