Changing methods of disclosure. Literature review of disclosure to children with terminal illnesses, including HIV.
Changing methods of disclosure. Literature review of disclosure to children with terminal illnesses, including HIV.
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DOI：
10.1080/13511610.2011.553506
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发表时间：
2011
期刊：
影响因子：
--
通讯作者：
Heeren GA
中科院分区：
文献类型：
--
作者：
Heeren GA
在首次发现致命的艾滋病病毒 30 多年后，随着对传播、治疗和行为干预发展的了解不断增加，父母仍然面临着是否、何时以及如何告知孩子她或他的艾滋病毒状况的艰巨任务。除了一些一般的道德考虑之外，没有任何国家或国际指南可用于处理父母和卫生专业人员向儿童披露艾滋病毒状况的问题。大多数关于披露的研究都解决了成年人向其性伴侣、看护者、家庭和社区披露艾滋病毒呈阳性状况的耻辱问题和障碍，但很少有研究关注向艾滋病毒呈阳性的儿童披露情况。大多数涉及向儿童披露信息的研究仅限于规定阻碍此类披露的原因，而不是有效向儿童披露信息所需的技能和知识。世界各地艾滋病治疗的可用性不断增加，迫切需要向儿童披露信息。即便如此，披露因垂直传播而感染艾滋病毒的儿童仍然非常困难。缺乏针对医疗保健专业人员、父母或参与照顾艾滋病毒呈阳性儿童的人员的指导方针的干预措施。这些干预措施的设计应考虑到可能实施的文化，并适当考虑整合不同的家庭结构和儿童的发展。
More than 30 years after the first discovery of the deadly HIV virus, and in the wake of increased knowledge of transmission, treatment and behavioral intervention development, parents are still faced with the difficult task of whether, when and how to inform their child about her or his HIV status. Except for some general ethical considerations, there are no national or international guidelines available for handling HIV status disclosure to a child by parents and health professionals. Most studies on disclosure address the problem of stigma and the barriers to disclosure of HIV-positive status by adults to their sexual partners, caretakers, families and communities, but very few studies focus on disclosure to HIV-positive children. The majority of the studies that address disclosure to children limit themselves to stipulating reasons for barriers to such disclosure instead of the skills and knowledge necessary for effective disclosure to a child. Increasing availability of therapy for HIV across the world presses the issue of disclosure to the child. Even so, disclosure for children who are HIV-positive due to vertical transmission continues to be very difficult. There is a lack of interventions that consider guidelines for healthcare professionals, parents or persons involved with taking care of HIV-positive children. These interventions should be designed in an understanding manner towards the culture where they might be implemented and be as appropriate in the view of integrating different family structures and the child’s development.
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DOI：
10.1016/s0891-5245(00)33836-6
发表时间：
2000-09-01
期刊：
Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners
影响因子：
--
作者：
Instone, S L
通讯作者：
Instone, S L
影响因子：
2
作者：
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通讯作者：
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影响因子：
4.4
作者：
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通讯作者：
Bunnell, Rebecca
影响因子：
6
作者：
Corneli A;Vaz L;Dulyx J;Omba S;Rennie S;Behets F
通讯作者：
Behets F
影响因子：
8
作者：
Cohen, J;Reddington, C;Sullivan, J
通讯作者：
Sullivan, J