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中国湖南省艾滋病病毒感染者的经历、挑战与需求:一项定性研究

Experiences, Challenges, and Needs of People Living with HIV in Hunan Province, China: A Qualitative Study.

作者信息

Shi Chunhong, Li Xiya, Dai Yehua, Chen Ming, Mao Lin, Zhou Xinyue, Lei Yanzhi, Yuan Wenxia

机构信息

School of Nursing, Xiangnan University, Chenzhou, People's Republic of China.

School of Public Health, Xiangnan University, Chenzhou, People's Republic of China.

出版信息

J Multidiscip Healthc. 2025 Mar 7;18:1405-1421. doi: 10.2147/JMDH.S512278. eCollection 2025.

Abstract

BACKGROUND

Globally, the human immunodeficiency virus (HIV) epidemic continues to pose significant challenges. In China, the differentiated services delivery (DSD) model has been implemented to improve healthcare for people living with HIV (PLHIV). However, challenges persist in fully implementing and scaling up the DSD model. Given the knowledge gaps and the need for better strategies to support this vulnerable population, our study aimed to explore the experiences, challenges, and needs of PLHIV to inform the development of patient-centered healthcare services.

METHODS

We employed a qualitative design to interview 20 PLHIV from July 27 to October 13, 2024, in the Infectious Disease Ward at the Second People's Hospital in Chenzhou, Hunan Province. Individual face-to-face in-depth interviews were conducted to collect data. Colaizzi's seven-step analysis method and NVivo 14 was used to analyze the transcripts.

RESULTS

The participants, aged 23 to 83 years, had been living with HIV for durations ranging from one month to 19 years. The interview data revealed four themes: (1) the dimension: multi-organ physical symptoms, increased physical vulnerability, and a desire for healthcare guidance; (2) the dimension: emotional distress, inadequate HIV-related knowledge, considerable stigma and discrimination, and a desire for respect and dignity; (3) the dimension: huge economic burden, fragile social networks, and a desire for social support; and (4) the dimension: mixed feelings about death, negative expectations of the future, seeking solace in faith, and a desire for a "good" death.

CONCLUSION

PLHIV in this study have undergone complex journeys across physical, psychological, societal, and spiritual dimensions, expressing urgent needs for support from various stakeholders. Our findings highlight the urgency of implementing patient-centered care, enhancing psychological support, reducing discrimination, and providing robust social and spiritual care through stakeholder collaboration to optimize the DSD model and resource allocation.

摘要

背景

在全球范围内,人类免疫缺陷病毒(HIV)疫情继续构成重大挑战。在中国,已实施差异化服务提供(DSD)模式以改善HIV感染者(PLHIV)的医疗保健。然而,在全面实施和扩大DSD模式方面仍存在挑战。鉴于存在知识差距以及需要更好的策略来支持这一弱势群体,我们的研究旨在探索PLHIV的经历、挑战和需求,以为以患者为中心的医疗服务发展提供信息。

方法

我们采用定性设计,于2024年7月27日至10月13日在湖南省郴州市第二人民医院传染病病房对20名PLHIV进行访谈。进行了个体面对面深入访谈以收集数据。采用Colaizzi七步分析法和NVivo 14对访谈记录进行分析。

结果

参与者年龄在23至83岁之间,感染HIV的时间从1个月到19年不等。访谈数据揭示了四个主题:(1)身体维度:多器官身体症状、身体脆弱性增加以及对医疗指导的渴望;(2)心理维度:情绪困扰、HIV相关知识不足、大量的耻辱和歧视以及对尊重和尊严的渴望;(3)社会维度:巨大的经济负担、脆弱的社会网络以及对社会支持的渴望;(4)精神维度:对死亡的复杂感受、对未来的消极期望、在信仰中寻求慰藉以及对“善终”的渴望。

结论

本研究中的PLHIV在身体、心理、社会和精神维度都经历了复杂的历程,表达了对各利益相关者支持的迫切需求。我们的研究结果凸显了实施以患者为中心的护理、加强心理支持、减少歧视以及通过利益相关者合作提供有力的社会和精神护理以优化DSD模式和资源分配的紧迫性。

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