Atwiine Barnabas, Kiwanuka Julius, Musinguzi Nicholas, Atwine Daniel, Haberer Jessica E
a Department of Paediatrics and Child Health , Mbarara University of Science and Technology , Mbarara , Uganda.
AIDS Care. 2015;27(4):424-30. doi: 10.1080/09540121.2014.978735. Epub 2014 Nov 14.
Highly active antiretroviral therapy has enabled HIV-infected children to survive into adolescence and adulthood, creating need for their own HIV diagnosis disclosure. Disclosure has numerous social and medical benefits for the child and family; however, disclosure rates tend to be low, especially in developing countries, and further understanding of the barriers is needed. This study describes the patterns and correlates of disclosure among HIV-infected children in southwestern Uganda. A cross-sectional study was conducted in a referral hospital pediatric HIV clinic between February and April 2012. Interviews were administered to caregivers of HIV-infected children aged 5-17 years. Data collected included socio-demographic characteristics of the child and caregiver, reported disclosure status, and caregivers' reasons for full disclosure or non-full disclosure of HIV status to their children. Bivariate and multivariate analysis was done to establish the socio-demographic correlates of disclosure. Caregivers provided data for 307 children; the median age was eight years (interquartile range [IQR] 7-11) and 52% were males. Ninety-five (31%) children had received full disclosure (48% of whom were >12 years), 22 children (7%) had received partial disclosure, 39 (13%) misinformation, and 151 (49%) no disclosure. Full disclosure was significantly more prevalent among the 9-11 and 12- to 17-year-olds compared to 5- to 8-year-olds (p-value < 0.001). The most frequently stated reason for disclosure was the hope that disclosure would improve medication adherence; the most frequently stated reason for nondisclosure was the belief that the child was too young to understand his/her illness. There was an inverse relationship between age and full disclosure and partial disclosure was rare across all age groups, suggesting a pattern of rapid, late disclosure. Disclosure programs should emphasize the importance of gradual disclosure, starting at younger ages, to maximize the benefits to the child and caregiver.
高效抗逆转录病毒疗法已使感染艾滋病毒的儿童存活至青春期和成年期，因此需要对他们进行艾滋病毒诊断告知。告知对儿童及其家庭有诸多社会和医疗益处；然而，告知率往往较低，尤其是在发展中国家，因此需要进一步了解其中的障碍。本研究描述了乌干达西南部感染艾滋病毒儿童的告知模式及其相关因素。2012年2月至4月间，在一家转诊医院的儿科艾滋病毒诊所开展了一项横断面研究。对年龄在5至17岁的感染艾滋病毒儿童的照料者进行了访谈。收集的数据包括儿童和照料者的社会人口学特征、报告的告知状况，以及照料者向其子女完全告知或未完全告知艾滋病毒感染状况的原因。进行了双变量和多变量分析，以确定告知的社会人口学相关因素。照料者提供了307名儿童的数据；中位年龄为8岁（四分位间距[IQR]7 - 11），52%为男性。95名（31%）儿童已得到完全告知（其中48%年龄大于12岁），有22名儿童（7%）得到部分告知，39名（13%）得到错误信息，151名（49%）未得到告知。与5至8岁儿童相比，9至11岁以及12至17岁儿童中完全告知的情况显著更为普遍（p值<0.001）。最常提到的告知原因是希望告知能提高药物依从性；最常提到的不告知原因是认为孩子太小，无法理解自己的病情。年龄与完全告知之间呈反比关系，且各年龄组中部分告知的情况都很少见，这表明存在一种快速、延迟告知的模式。告知项目应强调从较小年龄开始逐步告知的重要性，以使对儿童及其照料者的益处最大化。
