Senyurek Gamze, Kavas Mustafa Volkan, Ulman Yesim Isil
Department of Medical Humanities, Amsterdam UMC, De Boelelaan 1089a |, 1081 HV, Amsterdam, Netherlands.
Department of History of Medicine and Ethics, Faculty of Medicine, Ankara University, Morfoloji Binasi, Tip Tarihi ve Etik AD. 06230, Altindag, Ankara, Turkey.
BMC Public Health. 2021 May 12;21(1):904. doi: 10.1186/s12889-021-10881-y.
Human immunodeficiency virus (HIV) infection rates have been gradually increasing in Istanbul, Turkey. Many people living with HIV (PLWH) here encounter difficulties, for example, in adapting to the chronic disease and obtaining continuous access to healthcare services. In this study, we aimed to explore the challenges PLWH face in their daily lives and understand their perceptions of themselves, healthcare professionals and services, and their social spheres via their expressed lived experiences in the healthcare setting.
Individual semi-structured in-depth interviews were conducted face-to-face with 20 PLWH in Istanbul. All the interviews were voice-recorded and transcribed verbatim except one, upon participant request, for which the interviewer took notes. These logs and the interviewer's notes were analyzed thematically using the inductive content analysis method.
The themes concerned experiences in three distinct contexts: 1) Interactions with healthcare providers; 2) Participants' responses to their HIV diagnosis; and 3) Interactions with their social networks. Firstly, the results highlighted that the participants perceived that healthcare professionals did not inform them about the diagnosis properly, failed to protect patients' confidentiality and exhibited discriminative behaviors towards them. Secondly, after the diagnosis the participants had difficulty in coping with their unsettled emotional state. While many ceased sexual activities and isolated themselves, some sought support. Lastly, living with HIV affected their relationships with their families and friends either positively or negatively. Moreover, they had to face the difficulties concerning spouse/partner notification issues about which many needed professional support.
Healthcare professionals' discriminative or inappropriate attitudes and customs in healthcare institutions are perceived to impair PLWH's utilization of healthcare services. Structural factors such as social pressure, societal ignorance about HIV, limited access to HIV prevention, and regulatory barriers might contribute to these challenges. The results suggest that it is necessary to raise healthcare professionals' and society's awareness about HIV and develop national policies to establish a well-functioning referral system and appropriate spouse/partner notification services.
土耳其伊斯坦布尔的人类免疫缺陷病毒（HIV）感染率一直在逐渐上升。这里的许多艾滋病毒感染者（PLWH）面临诸多困难，例如，难以适应慢性病以及持续获得医疗服务。在本研究中，我们旨在通过艾滋病毒感染者在医疗环境中的真实生活经历，探索他们在日常生活中面临的挑战，并了解他们对自身、医疗专业人员和服务以及社交领域的看法。
在伊斯坦布尔与20名艾滋病毒感染者进行了面对面的个人半结构化深入访谈。除一名参与者要求仅由访谈者做笔记外，所有访谈均进行了录音并逐字转录。使用归纳性内容分析法对这些记录和访谈者笔记进行了主题分析。
这些主题涉及三个不同背景下的经历：1）与医疗服务提供者的互动；2）参与者对HIV诊断的反应；3）与社交网络的互动。首先，结果突出显示参与者认为医疗专业人员没有正确告知他们诊断情况，未能保护患者隐私，并对他们表现出歧视行为。其次，诊断后，参与者难以应对自己不安的情绪状态。许多人停止了性行为并自我孤立，而有些人则寻求支持。最后，感染艾滋病毒对他们与家人和朋友的关系产生了积极或消极的影响。此外，他们不得不面对配偶/伴侣告知问题带来的困难，许多人在这方面需要专业支持。
医疗机构中医疗专业人员的歧视性或不适当态度及习惯被认为会损害艾滋病毒感染者对医疗服务的利用。社会压力、社会对艾滋病毒的无知、艾滋病毒预防途径有限以及监管障碍等结构性因素可能导致这些挑战。结果表明，有必要提高医疗专业人员和社会对艾滋病毒的认识，并制定国家政策，以建立一个运作良好的转诊系统和适当的配偶/伴侣告知服务。
