Prevalence and Correlates of HIV Disclosure Among Children and Adolescents in Low- and Middle-Income Countries: A Systematic Review

Abstract

ObjectiveDisclosure of HIV status among children and adolescents living with HIV has both beneficial and challenging aspects. To address existing knowledge gaps and update the literature on childhood disclosure, we conducted a systematic review on caregivers’ perceptions and practices of HIV disclosure in low- and middle-income countries (LMICs).MethodsStandard databases were searched for studies conducted in LMICs, published in English between 2004 and 2015. Excluded articles were reviews or case reports, and those not reporting childhood disclosure. Data regarding prevalence, correlates and impact of disclosure, were presented as frequencies.ResultsTwo authors independently screened 982 articles. After applying eligibility criteria, 22 articles representing 12 countries and 2,843 children were reviewed. The proportion of fully disclosed children ranged from 1.7% to 41.0%. Up to 49.5% children were provided “deflected” information (use of a non-HIV-related reason for explaining illness and health care visits). Factors associated with full disclosure included antiretroviral treatment initiation and caregivers’ felt need for maintaining optimal adherence. Barriers to disclosure included fear of negative psychological reactions and inadvertent disclosure to others. Caregivers perceived a strong need for active participation from health care providers to aid the process of disclosure.ConclusionsFull disclosure of HIV status was not common among children and adolescents in LMICs, while the practice of deflected disclosure was prominent. Caregivers perceived the need for support from health care providers during the disclosure process. Evidence-based guidelines incorporating the developmental status of the child, locally prevalent cultures, and caregiver perceptions are prerequisite to enhancing disclosure in these settings.

Perinatally acquired HIV-positive status disclosure and associated factors in Dire Dawa and Harar, Eastern Ethiopia: a health facility-based cross-sectional study

“…The level of disclosure identified in our study was higher compared with previous studies in Ethiopia (17.4% to 39.5%),14 23 24 East Africa (26% to 43.1%),15 28 29 West Africa (21% to 29%),21 30 South Africa 39.6%31 and a review of 22 primary studies in low/middle-income countries (1.7% to 41%)%) 32. The higher level of disclosure in our study may be attributed to the higher mean age of children.…”

“…Similar findings have been reported elsewhere 14 24 28. A review article by Britto et al in low/middle-income countries reported deception as high as 49.5% where caregivers provided a non-HIV-related reason for explaining illness and healthcare visits 32. Deception is used by caregivers as a coping mechanism for their lack of self-efficacy to manage disclosure and fear of negative outcomes 24 37 39 40.…”

Perspectives on disclosure among children living with HIV in India

“…The disclosure of diagnosis to children, in particular, has been shown to be dependent on the growing child's cognitive abilities as well as attitudes and goals of the caregiver towards disclosure (Chaudoir, Fisher, & Simoni, 2011). Caregivers' concerns towards non-disclosure stem from its potential negative impact, including fear of negative psychological reactions among the children, and fear of subsequent disclosure to others, leading to stigmatization and further discrimination (Britto et al, 2016; Pinzón-Iregui et al, 2013). However, several clinical reports have indicated positive outcomes associated with disclosure including the promotion of trust, improved adherence, enhanced access to support services, open family communication and better long-term health and emotional well-being in children (Wiener et al, 2007; Lipson, 1994; Funck-Brentano, 1995; Mellins & Brackis-Cott, 2002).…”

“…Further, we found that parents and caregivers in this study seemed to be quite dependent on medical personnel for the process of disclosure. This may reflect the somewhat more paternalistic role played by medical personnel in some cultural settings (Britto et al, 2016). Future guidelines will need to delve deeper into the specific details of what information would qualify as ‘disclosure’ and address the need for support from medical personnel during the process of disclosure.…”

“…Recent reviews from low and middle income countries (LMICs) have suggested that rates of disclosure are low (Pinzón-Iregui, Beck-Sagué, & Malow, 2013; Britto et al, 2016). Data about the rates of disclosure among children living with HIV in India are scanty.…”