Thorne C, Newell M L, Peckham C S
Department of Epidemiology and Public Health, Institute of Child Health, London, UK.
Child Care Health Dev. 2000 Jan;26(1):29-40. doi: 10.1046/j.1365-2214.2000.00128.x.
Information relating to disclosure of infection status in families affected by HIV and the existence of plans for the future social care of children with infected parents was collected as part of a larger survey on clinical and psychosocial service use of these families. Parents and alternative carers of HIV-affected children in follow-up in 10 paediatric centres from seven European countries were surveyed. A total of 182 questionnaires were returned: most (73%) were completed by parents, of whom 92% were HIV-infected. Of the 226 children cared for by the respondents, most (62%) were HIV-infected. Disclosure of both the child's and the parent's infection status was rare and found to be associated with child's age in both cases. Infected children living with their parents were less likely to know their diagnosis than those living in alternative care. Uninfected parents and carers were significantly more likely to want professional help with disclosing to an infected child than infected parents. Infected parents also face difficult decisions regarding the issue of who will care for their children when they are unable to. Half of the infected parents had made long-term plans for their children's future social care. European parents were more likely to have made such plans than those from elsewhere (mainly Africa) and parents with plans had known about their HIV infection for significantly longer than those without. Increasing numbers of vertically infected children are reaching adolescence as a result of improvements in the management of paediatric HIV infection. As both disclosure and planning for the future social care of HIV-affected children have been found to be strongly associated with child's age, the changing epidemiology of paediatric HIV highlights the need for more information on these issues in order to support families more effectively.
作为一项关于这些家庭临床和心理社会服务使用情况的大型调查的一部分，收集了与受艾滋病毒影响家庭中感染状况披露以及为受感染父母的子女制定未来社会照料计划相关的信息。对来自七个欧洲国家的10个儿科中心接受随访的受艾滋病毒影响儿童的父母及替代照料者进行了调查。共收到182份问卷：大多数（73%）由父母填写，其中92%为艾滋病毒感染者。在受访者照料的226名儿童中，大多数（62%）感染了艾滋病毒。儿童及其父母感染状况的披露都很罕见，且在这两种情况下都发现与儿童年龄有关。与生活在替代照料环境中的儿童相比，与父母同住的感染儿童知晓自己诊断的可能性较小。未感染的父母和照料者比感染的父母更有可能希望在向感染儿童披露病情时获得专业帮助。感染的父母在无法照顾子女时，在由谁来照顾子女的问题上也面临艰难抉择。一半的感染父母为子女的未来社会照料制定了长期计划。欧洲父母比其他地区（主要是非洲）的父母更有可能制定此类计划，且有计划的父母知晓自己感染艾滋病毒的时间明显长于没有计划的父母。由于儿科艾滋病毒感染管理的改善，越来越多的垂直感染儿童正步入青春期。鉴于已发现受艾滋病毒影响儿童的感染状况披露和未来社会照料计划都与儿童年龄密切相关，儿科艾滋病毒流行病学的变化凸显了需要更多关于这些问题的信息，以便更有效地支持家庭。
