The role of disclosure in relation to assent to participate in HIV-related research among HIV-infected youth: a formative study.
The role of disclosure in relation to assent to participate in HIV-related research among HIV-infected youth: a formative study.
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DOI：
10.1186/1758-2652-12-17
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发表时间：
2009-08-27
影响因子：
6
通讯作者：
Behets F
中科院分区：
文献类型：
--
作者：
Corneli A;Vaz L;Dulyx J;Omba S;Rennie S;Behets F
这项研究的目的是制定一种文化上适当的方法，以便获得8至17岁儿童的同意，参加刚果民主共和国金沙萨与艾滋病毒有关的儿科业务研究。这一目标包括确定是否应将艾滋病毒披露作为参与研究之前批准程序的一部分，作为参与研究的一个组成部分，或不应纳入儿童参与研究的任何方面。还探讨了影响父母和照顾者在非研究背景下向儿童披露艾滋病毒状况的决定的因素。进行了定性的形成性研究。对19名艾滋病毒感染者、36名艾滋病毒感染者的父母和照顾者以及17名为艾滋病毒感染者及其家人提供护理和支持的卫生专业人员进行了半结构化访谈。参与者是从刚果民主共和国金沙萨的三个艾滋病毒护理、治疗和/或心理社会支助方案中特意挑选出来的。大多数受访青年认为，应该向参加艾滋病毒相关研究的未成年人通报他们的艾滋病毒阳性情况。在参与研究期间，父母、照顾者和卫生专业人员对是否以及何时应向未成年人披露艾滋病毒状况有不同的看法。青少年的年龄影响了父母和照顾者的反应，向青少年披露比向儿童披露更受支持。一些家长和照顾者以及一些卫生专业人员建议，未成年人在参与艾滋病毒相关研究时永远不应该被告知他们的艾滋病毒阳性状态，无论他们的年龄。在治疗方案范围内，向未成年人披露艾滋病毒状况得到了青年、父母和照顾者以及保健专业人员的支持，以此作为改善服药依从性的一种手段。在大多数未成年人不知道自己感染艾滋病毒的情况下，研究人员在向未成年人解释与艾滋病毒有关的研究时，应考虑排除“艾滋病毒”一词，并在与参与研究有关的同意书或资料表中省略该词。然而，在参加与艾滋病毒有关的研究，特别是涉及治疗的研究时，应与父母和照顾者一起启动个性化的披露计划。
The objective of this study was to develop a culturally appropriate approach for obtaining assent from children aged eight to 17 years to participate in paediatric HIV-related operational research in Kinshasa, Democratic Republic of Congo (DRC). Included within this objective was to determine whether or not HIV disclosure should be included as part of the assent process prior to research participation, a component of research participation, or not incorporated in any aspect of the child's involvement in the research. Factors that influence parents' and caregivers' decisions to disclose HIV status to children in non-research contexts were also explored. A qualitative formative study was conducted. Semi-structured interviews were conducted with 19 youth living with HIV, 36 parents and caregivers of youth living with HIV, and 17 health professionals who provide care and support to youth living with HIV and their families. Participants were purposefully selected from three HIV care, treatment and/or psychosocial support programmes in Kinshasa, DRC. Most youth interviewed believed minors participating in HIV-related research should be informed of their HIV-positive status. Parents and caregivers and health professionals had varied perspectives on if and when HIV status should be disclosed to minors during research participation. The age of the youth influenced parents and caregivers' responses, and disclosure to adolescents was more frequently supported than disclosure to children. Several parents and caregivers, as well as some health professionals, suggested that minors should never be told their HIV-positive status when participating in HIV-related research, regardless of their age. Within the context of treatment programmes, disclosure of HIV status to minors was supported by youth, parents and caregivers, and health professionals as a means to improve adherence to medication. In settings where most minors are unaware of their HIV infection, researchers should consider excluding the term, "HIV", when explaining HIV-related research to minors, and omitting it from assent forms or informational sheets related to research participation. However, an individualized disclosure plan should be initiated with parents and caregivers at the time of enrolment in HIV-related research, particularly in research that involves treatment.
影响因子：
4.4
作者：
Bikaako-Kajura, Winnie;Luyirika, Emmanuel;Bunnell, Rebecca
通讯作者：
Bunnell, Rebecca
DOI：
10.1080/09540120701742276
发表时间：
2008-01-01
影响因子：
1.7
作者：
Vaz, L.;Corneli, A.;Behets, F.
通讯作者：
Behets, F.
影响因子：
7.6
作者：
Geller, G;Tambor, ES;Wissow, LS
通讯作者：
Wissow, LS