Caregiver perceptions and motivation for disclosing or concealing the diagnosis of HIV infection to children receiving HIV care in Mbarara, Uganda: a qualitative study.
Caregiver perceptions and motivation for disclosing or concealing the diagnosis of HIV infection to children receiving HIV care in Mbarara, Uganda: a qualitative study.
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DOI：
10.1371/journal.pone.0093276
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发表时间：
2014
期刊：
影响因子：
3.7
通讯作者：
Haberer JE
中科院分区：
文献类型：
--
作者：
Kiwanuka J;Mulogo E;Haberer JE
向感染艾滋病毒的儿童披露艾滋病毒诊断对照料者来说是一项挑战。尽管目前提出了建议，但数据表明，向在资源有限的环境中接受护理的感染艾滋病毒的儿童透露艾滋病毒状况的程度非常低。很少有研究描述在这种情况下儿童的披露过程，特别是向感染艾滋病毒的儿童披露的动机、事先目标和直接结果。本研究调查了照顾者在披露之前对披露概念的感知，他们对披露或不披露的动机，以及他们向感染艾滋病毒的儿童披露信息的短期和长期意图。对40名接受艾滋病毒治疗但不知道其艾滋病毒状况的艾滋病毒感染儿童（5-15岁）的主要照顾者进行了深入访谈。艾滋病毒感染儿童的照料者主要认为披露信息是单一事件，而不是逐步提供有关儿童疾病的信息的过程。他们认为，披露这些信息对孩子和他们自己都有潜在的好处，同时也是一个解释父母在将艾滋病毒传播给孩子的过程中所扮演角色的机会。护理人员希望亲自进行披露；然而，大多数人都对负面结果感到恐惧，并且在管理披露过程中缺乏自我效能感。因此，大多数人通过欺骗来避免或延迟披露，直到他们意识到自己准备好了披露。披露艾滋病毒的干预措施应考虑到，照料者可能希望对向其照料的儿童披露艾滋病毒负直接责任。但是，需要赋予它们实际的技能，使它们认识到尽早开始披露过程的机会，并支持它们以适合发展的方式分阶段进行管理。同伴咨询师在信息披露过程中的潜在作用值得进一步研究。
Disclosure of the diagnosis of HIV to HIV-infected children is challenging for caregivers. Despite current recommendations, data suggest that levels of disclosure of HIV status to HIV-infected children receiving care in resource-limited settings are very low. Few studies describe the disclosure process for children in these settings, particularly the motivators, antecedent goals, and immediate outcomes of disclosure to HIV-infected children. This study examined caregivers' perception of the disclosure concept prior to disclosure, their motivation towards or away from disclosure, and their short- and long-term intentions for disclosure to their HIV-infected children. In-depth interviews were conducted with primary caregivers of 40 HIV-infected children (ages 5–15 years) who were receiving HIV care but did not know their HIV status. Caregivers of HIV-infected children mainly perceived disclosure as a single event rather than a process of gradual delivery of information about the child's illness. They viewed disclosure as potentially beneficial both to children and themselves, as well as an opportunity to explain the parents' role in the transmission of HIV to the children. Caregivers desired to personally conduct the disclosure; however, most reported being over-whelmed with fear of negative outcomes and revealed a lack of self-efficacy towards managing the disclosure process. Consequently, most cope by deception to avoid or delay disclosure until they perceive their own readiness to disclose. Interventions for HIV disclosure should consider that caregivers may desire to be directly responsible for disclosure to children under their care. They, however, need to be empowered with practical skills to recognize opportunities to initiate the disclosure process early, as well as supported to manage it in a phased, developmentally appropriate manner. The potential role for peer counselors in the disclosure process deserves further study.
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影响因子：
3.2
作者：
Hsieh, HF;Shannon, SE
通讯作者：
Shannon, SE
影响因子：
4.4
作者：
Bikaako-Kajura, Winnie;Luyirika, Emmanuel;Bunnell, Rebecca
通讯作者：
Bunnell, Rebecca
影响因子：
1.7
作者：
Madiba S;Mokwena K
通讯作者：
Mokwena K
影响因子：
8
作者：
Butler AM;Williams PL;Howland LC;Storm D;Hutton N;Seage GR 3rd;Pediatric AIDS Clinical Trials Group 219C Study Team
通讯作者：
Pediatric AIDS Clinical Trials Group 219C Study Team
DOI：
10.1016/s0891-5245(01)59193-2
发表时间：
2001-07-01
期刊：
Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners
影响因子：
--
作者：
Gerson, A C;Joyner, M;Hutton, N
通讯作者：
Hutton, N