Sanjeeva G N, Pavithra H B, Chaitanya S, Sunil Kumar D R, Rewari B B
a Department of Pediatrics , Pediatric Center of Excellence, Indira Gandhi Institute of Child Health , Bangalore , India.
b Pediatric Center of Excellence, Indira Gandhi Institute of Child Health , Bangalore , India.
AIDS Care. 2016 Nov;28(11):1416-22. doi: 10.1080/09540121.2016.1189503. Epub 2016 May 29.
Disclosure is an important component of comprehensive management of children living with HIV infection (CLHIV). Many parental concerns are barriers for disclosure in children and only few studies addresses children's perspective on these concerns. Our study aims to understand children's perspective on parental concerns for disclosure and assess the knowledge of HIV. A questionnaire-based cross-sectional study involving CLHIV between 10 and 18 years attending HIV clinic in southern India, was conducted. Data were collected by directly interviewing only the children after obtaining consent from parents/caregivers. Initial open-ended questions were asked to assess the disclosure status and only fully disclosed children were included. Out of 362 enrolled eligible children, the prevalence of full and partial disclosure was 36.7% and 24%, respectively. The mean age of disclosure was 10.4 years (SD ± 2.6) and non-parental family members in an informal setting were the most common source of disclosure (38.3%). Forty-six percentages of parents were unaware of their child's disclosure status. Only 2% had disclosed their status to others who were not part of their care. Among disclosed children, 33.8% became upset or sad upon knowing their status, 12% faced discrimination and 41.4% had complete knowledge about their illness. Though the prevalence of disclosure among CLHIV was high, a majority of them had incomplete knowledge about HIV infection. The parental concerns as reported in literature like the child is too young to disclose, concerns about coping, fear of stigma and discrimination and child disclosing to others were not expressed by children.
信息披露是感染艾滋病毒儿童（CLHIV）综合管理的重要组成部分。许多家长的担忧是儿童信息披露的障碍，而只有少数研究探讨了儿童对这些担忧的看法。我们的研究旨在了解儿童对家长信息披露担忧的看法，并评估他们对艾滋病毒的认知。我们在印度南部一家艾滋病毒诊所对10至18岁的感染艾滋病毒儿童进行了一项基于问卷调查的横断面研究。在获得家长/照顾者同意后，仅直接采访儿童来收集数据。最初提出开放式问题以评估信息披露状况，仅纳入完全披露信息的儿童。在362名登记的合格儿童中，完全披露和部分披露的患病率分别为36.7%和24%。信息披露的平均年龄为10.4岁（标准差±2.6），非正式场合中的非家长家庭成员是最常见的信息披露来源（38.3%）。46%的家长不知道其孩子的信息披露状况。只有2%的孩子向非其照顾团队成员的其他人披露了自己的状况。在已披露信息的儿童中，33.8%在得知自己的状况后变得心烦或悲伤，12%面临歧视，41.4%对自己的病情有全面了解。尽管感染艾滋病毒儿童的信息披露率较高，但他们中的大多数对艾滋病毒感染的了解并不完整。文献中报道的家长担忧，如孩子太小不能披露、对应对的担忧、对耻辱和歧视的恐惧以及孩子向他人披露等，儿童并未表达出来。
