HIV cure research in South Africa: a preliminary exploration of stakeholder perspectives.

HIV cure research in South Africa: a preliminary exploration of stakeholder perspectives.
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DOI:
10.1080/09540121.2015.1112351
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发表时间:
2016
期刊:
影响因子:
1.7
通讯作者:
Cotton M
Cotton M
中科院分区:
医学4区
文献类型:
--
作者:
Moodley K;Staunton C;de Roubaix M;Cotton M

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艾滋病毒研究的进展导致制定了艾滋病毒治疗的创新战略,使患者在没有抗逆转录病毒治疗的情况下能够摆脱疾病。因此,正在全球范围内设计和规划研究。南非也不例外。然而,对利益相关者的知识、理解和对未来治愈研究的期望知之甚少。本研究的目的是在南非艾滋病毒治疗研究的形成阶段,深入了解利益相关者的观点。我们在南非西开普省一个繁忙的忙碌艾滋病研究诊所采访了15名利益相关者。这个有目的的样本包括病人,社区咨询委员会(CAB)成员,研究护士,医生,辅导员和项目经理。所有受试者均提供了知情同意书。访谈内容逐字记录,并采用专题内容分析法进行分析。这项研究得到了斯泰伦博斯大学健康研究伦理委员会的批准。出现的广泛主题包括治愈的意义,对艾滋病毒治愈研究的认识,这种研究的风险和好处。对艾滋病毒治疗研究的普遍认识和理解低于预期。医护人员将“治愈”解释为完全根除体内病毒,包括从水库,而患者认为治愈是恢复正常,不需要未来的药物治疗。一些与会者对这一疾病持宿命论态度,并将艾滋病毒描述为一种“末期疾病”,没有治愈的前景。总的来说,艾滋病毒治疗研究被认为是有风险的-从生物学、心理学和社会学角度来看。如果研究设计包括治疗中断,参与者只有在保证成功的情况下才会依从。鉴于这些艾滋病毒治疗研究的看法,可以预期在南非进行的拟议试验在同意过程和参与者招募方面会遇到重大挑战。真正的社区参与和密集的教育干预将是必要的,然后才能在该国进行未来的治疗研究。
Progress in HIV research has led to the development of innovative strategies for HIV cure so that patients can be disease free in the absence of antiretroviral therapy. Consequently research studies are being designed and planned globally. South Africa is no exception. However little is known about stakeholders’ knowledge, understanding and expectations of future cure research. This study aimed to obtain in depth qualitative insights into stakeholder perspectives at this formative stage of HIV cure research in South Africa. We interviewed 15 stakeholders in a busy HIV research clinic in the Western Cape, South Africa. This purposive sample comprised patients, community advisory board (CAB) members, research nurses, doctors, counsellors and a project manager. All participants provided informed consent. Interviews were transcribed verbatim and analysed using thematic content analysis. The study was approved by the Health Research Ethics Committee at Stellenbosch University. Broad themes that emerged included the meaning of cure, awareness of HIV cure research, risks and benefits of such research. General awareness and understanding of HIV cure research was lower than expected. Healthcare workers interpreted “cure” to mean complete eradication of virus from the body including from reservoirs while patients’ perceived cure to be a return to normality with no need for future medication. Some participants expressed a fatalistic attitude to the disease and described HIV as an “end-time illness” with no prospect of cure. In general, HIV cure research was regarded as risky - biologically psychologically and socially. If study designs were to include treatment interruption, participants would comply only if there was a guarantee of success. Given these perceptions of HIV cure research, significant challenges to consent processes and participant recruitment can be anticipated for proposed trials in South Africa. Authentic community engagement and intensive educational interventions will be necessary prior to future cure research in the country.
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