缺失的声音:让感染艾滋病病毒的妇女有意义地参与艾滋病临床和治愈研究。

IF 1.8 3区 医学 Q2 FAMILY STUDIES
Susan C S Chong, Gene Lim, Kirsty Machon, Heather Mugwagwa, Jennifer Johnson, Roslyn Le Gautier, Jennifer Power
{"title":"缺失的声音:让感染艾滋病病毒的妇女有意义地参与艾滋病临床和治愈研究。","authors":"Susan C S Chong, Gene Lim, Kirsty Machon, Heather Mugwagwa, Jennifer Johnson, Roslyn Le Gautier, Jennifer Power","doi":"10.1080/13691058.2024.2408353","DOIUrl":null,"url":null,"abstract":"<p><p>Women living with HIV are consistently under-represented in HIV clinical trials, including cure trials. Little is known about how cisgender women living with HIV in Australia perceive HIV cure research, their level of trust in research institutions/staff, and factors salient to participation in HIV cure trials. Semi-structured interviews were conducted with women living with HIV and clinicians working with women living with HIV to investigate motivations and barriers to gender-equitable representation in HIV clinical research. Participant motivations for participation included altruistic desires to benefit younger women, and to optimise resulting interventions. Women living with HIV expressed optimism that a cure would dispel HIV-related stigma and brings about substantial material improvement to their lives. Reluctance to participate related to concerns regarding potential side-effects, antiretroviral treatment interruption, and impacts on fertility. Unfamiliarity with trials, confidentiality concerns and logistical difficulties were also cited. Lastly, onerous eligibility criteria, clinicians' assumptions about women's willingness and ability to meaningfully provide consent to participation were cited as barriers which could be addressed. Bolstering women's participation in HIV cure research requires consideration of factors relating to reproductive health, analytical treatment interruption, and recruitment. Engaging women living with HIV in trial design and promotion may help overcome these issues.</p>","PeriodicalId":10799,"journal":{"name":"Culture, Health & Sexuality","volume":null,"pages":null},"PeriodicalIF":1.8000,"publicationDate":"2024-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Missing voices: building women living with HIV's meaningful engagement in HIV clinical and cure research.\",\"authors\":\"Susan C S Chong, Gene Lim, Kirsty Machon, Heather Mugwagwa, Jennifer Johnson, Roslyn Le Gautier, Jennifer Power\",\"doi\":\"10.1080/13691058.2024.2408353\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>Women living with HIV are consistently under-represented in HIV clinical trials, including cure trials. Little is known about how cisgender women living with HIV in Australia perceive HIV cure research, their level of trust in research institutions/staff, and factors salient to participation in HIV cure trials. Semi-structured interviews were conducted with women living with HIV and clinicians working with women living with HIV to investigate motivations and barriers to gender-equitable representation in HIV clinical research. Participant motivations for participation included altruistic desires to benefit younger women, and to optimise resulting interventions. Women living with HIV expressed optimism that a cure would dispel HIV-related stigma and brings about substantial material improvement to their lives. Reluctance to participate related to concerns regarding potential side-effects, antiretroviral treatment interruption, and impacts on fertility. Unfamiliarity with trials, confidentiality concerns and logistical difficulties were also cited. Lastly, onerous eligibility criteria, clinicians' assumptions about women's willingness and ability to meaningfully provide consent to participation were cited as barriers which could be addressed. Bolstering women's participation in HIV cure research requires consideration of factors relating to reproductive health, analytical treatment interruption, and recruitment. Engaging women living with HIV in trial design and promotion may help overcome these issues.</p>\",\"PeriodicalId\":10799,\"journal\":{\"name\":\"Culture, Health & Sexuality\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":1.8000,\"publicationDate\":\"2024-09-27\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Culture, Health & Sexuality\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1080/13691058.2024.2408353\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"FAMILY STUDIES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Culture, Health & Sexuality","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1080/13691058.2024.2408353","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"FAMILY STUDIES","Score":null,"Total":0}
引用次数: 0

摘要

感染艾滋病毒的女性在艾滋病毒临床试验(包括治愈试验)中的代表性一直不足。关于澳大利亚感染艾滋病毒的顺性别女性如何看待艾滋病毒治愈研究、她们对研究机构/工作人员的信任程度以及参与艾滋病毒治愈试验的突出因素,人们知之甚少。我们对感染艾滋病病毒的女性患者和为女性患者服务的临床医生进行了半结构式访谈,以调查在艾滋病临床研究中实现性别平等的动机和障碍。参与者的参与动机包括使年轻女性受益的利他愿望,以及优化由此产生的干预措施。感染艾滋病毒的妇女乐观地认为,治愈艾滋病将消除与艾滋病毒有关的耻辱感,并给她们的生活带来实质性的改善。不愿意参与的原因是担心潜在的副作用、抗逆转录病毒治疗的中断以及对生育的影响。还有人提到对试验不熟悉、保密问题和后勤困难。最后,繁琐的资格标准、临床医生对妇女是否愿意和有能力有意义地同意参与试验的假设也被认为是可以解决的障碍。加强妇女对艾滋病治疗研究的参与需要考虑与生殖健康、分析性治疗中断和招募有关的因素。让感染艾滋病毒的妇女参与试验的设计和推广可能有助于克服这些问题。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Missing voices: building women living with HIV's meaningful engagement in HIV clinical and cure research.

Women living with HIV are consistently under-represented in HIV clinical trials, including cure trials. Little is known about how cisgender women living with HIV in Australia perceive HIV cure research, their level of trust in research institutions/staff, and factors salient to participation in HIV cure trials. Semi-structured interviews were conducted with women living with HIV and clinicians working with women living with HIV to investigate motivations and barriers to gender-equitable representation in HIV clinical research. Participant motivations for participation included altruistic desires to benefit younger women, and to optimise resulting interventions. Women living with HIV expressed optimism that a cure would dispel HIV-related stigma and brings about substantial material improvement to their lives. Reluctance to participate related to concerns regarding potential side-effects, antiretroviral treatment interruption, and impacts on fertility. Unfamiliarity with trials, confidentiality concerns and logistical difficulties were also cited. Lastly, onerous eligibility criteria, clinicians' assumptions about women's willingness and ability to meaningfully provide consent to participation were cited as barriers which could be addressed. Bolstering women's participation in HIV cure research requires consideration of factors relating to reproductive health, analytical treatment interruption, and recruitment. Engaging women living with HIV in trial design and promotion may help overcome these issues.

求助全文
通过发布文献求助,成功后即可免费获取论文全文。 去求助
来源期刊
CiteScore
4.60
自引率
4.50%
发文量
80
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术官方微信