Predictors and consequences of HIV status disclosure to adolescents living with HIV in Eastern Cape, South Africa: a prospective cohort study

Abstract

Introduction The World Health Organization recommends full disclosure of HIV‐positive status to adolescents who acquired HIV perinatally (APHIV) by age 12. However, even among adolescents (aged 10–19) already on antiretroviral therapy (ART), disclosure rates are low. Caregivers often report the child being too young and fear of disclosure worsening adolescents’ mental health as reasons for non‐disclosure. We aimed to identify the predictors of disclosure and the association of disclosure with adherence, viral suppression and mental health outcomes among adolescents in sub‐Saharan Africa. Methods Analyses included three rounds (2014–2018) of data collected among a closed cohort of adolescents living with HIV in Eastern Cape, South Africa. We used logistic regression with respondent random‐effects to identify factors associated with disclosure, and assess differences in ART adherence, viral suppression and mental health symptoms between adolescents by disclosure status. We also explored differences in the change in mental health symptoms and adherence between study rounds and disclosure groups with logistic regression. Results Eight hundred and thirteen APHIV were interviewed at baseline, of whom 769 (94.6%) and 729 (89.7%) were interviewed at the second and third rounds, respectively. The proportion aware of their HIV‐positive status increased from 63.1% at the first round to 85.5% by the third round. Older age (adjusted odds ratio [aOR]: 1.27; 1.08–1.48) and living in an urban location (aOR: 2.85; 1.72–4.73) were associated with disclosure between interviews. There was no association between awareness of HIV‐positive status and ART adherence, viral suppression or mental health symptoms among all APHIV interviewed. However, among APHIV not aware of their status at baseline, adherence decreased at the second round among those who were disclosed to ( N = 131) and increased among those not disclosed to ( N = 151) (interaction aOR: 0.39; 0.19–0.80). There was no significant difference in the change in mental health symptoms between study rounds and disclosure groups. Conclusions Awareness of HIV‐positive status was not associated with higher rates of mental health symptoms, or lower rates of viral suppression among adolescents. Disclosure was not associated with worse mental health. These findings support the recommendation for timely disclosure to APHIV; however, adherence support post‐disclosure is important.

The association between HIV diagnosis disclosure and adherence to anti-retroviral therapy among adolescents living with HIV in Sub-Saharan Africa: A systematic review and meta-analysis

“…The studies were conducted in five countries in Sub-Saharan Africa, namely: five studies from Ethiopia [ 45 , 46 , 48 , 49 , 55 ], two studies from South Africa [ 47 , 56 ], two studies from Uganda [ 52 , 57 ], one study from Kenya [ 50 ], one study from Namibia [ 54 ], and one multi-country (Burundi, Democratic Republic of Congo, and Cameroon) [ 53 ]. In terms of design nine studies were cross-sectional [ 45 – 50 , 52 , 54 , 57 ], one case-control [ 55 ], and two cohort [ 53 , 56 ]. Seven of the studies provided adjusted effect estimates [ 45 , 47 – 49 , 53 , 55 , 56 ], and others reported (or the authors of this meta-analysis calculated) crude estimates [ 46 , 50 , 52 , 54 , 57 ].…”

“…In terms of design nine studies were cross-sectional [ 45 – 50 , 52 , 54 , 57 ], one case-control [ 55 ], and two cohort [ 53 , 56 ]. Seven of the studies provided adjusted effect estimates [ 45 , 47 – 49 , 53 , 55 , 56 ], and others reported (or the authors of this meta-analysis calculated) crude estimates [ 46 , 50 , 52 , 54 , 57 ]. In studies that reported adjusted estimates [ 45 , 47 – 49 , 53 , 55 , 56 ], the factors controlled for include age (both caregiver and child), caregiver’s sex, country, education and school type, knowledge and attitude towards ART medication, motivation for medication, regimen type, caregiver’s substance use, family income, viral load change, child medication burden, distance travelled, and orphan hood.…”

“…Adherence was measured either using self-report/clinical record review in nine studies [ 45 , 47 – 50 , 53 , 55 – 57 ] or using pill count only in one study[ 54 ] or using mix of the two methods in two studies [ 46 , 52 ] based on the ≥95% cut-off which represent the proportion of prescribed ARV drugs that were taken during the period of assessment considered. Seven studies [ 47 , 49 , 50 , 52 , 54 , 56 , 57 ] measured adherence data from only adolescent population whereas the remaining six studies [ 45 , 46 , 48 , 52 , 53 , 55 ] measured from a mixed population (adolescents and children below the age of 10 years and as young as 2 months). Except in Dachew et al [ 48 ], that did not provide average age of children studied, the average age of children studied ranged from 9.4 years to 13.4 years.…”

Longitudinal Trajectories of Antiretroviral Treatment Adherence and Associations With Durable Viral Suppression Among Adolescents Living With HIV in South Africa

“…47 There was no significant association between knowledge of HIV status and the categorization into 4 adherence trajectories. This may be partly explained by the fact that the majority of adolescents already knew their HIV status at baseline 36 and the potential confounding effects of age at ART initiation and the duration of ART 48 or that the disclosure process or pattern may influence adherence more than knowledge of status. 49 The heterogeneity observed in the adherence trajectories among ALHIV in this study is very relevant to improving their HIV-related health outcomes, given that it is highly associated with VL outcomes.…”

“…Data were collected on sociodemographic characteristics, including age (divided into 10–14 and ≥15 year age groups), sex, urban/rural residence, and access to 8 socially perceived necessities for children and adolescents validated in a nationally representative South African Social Survey (eg, enough food). 35 HIV treatment factors included knowledge of HIV status, 36 estimated or self-reported time on ART (years), and mode of HIV acquisition. Mode of HIV acquisition (perinatally versus sexually acquired HIV) was defined following existing sub-Saharan African pediatric cohorts: age of ART initiation cutoff [≤10 years] 37 validated and updated with a detailed algorithm that considered other strong evidence (ie, self-reported sexual history and parental death) in the absence of definitive clinic notes ascribing mode of HIV acquisition.…”