Second, associations between adolescent knowledge of HIV-positive status and ART-adherence were tested in multivariate hierarchical logistic regressions, following Hosmer and Lemershow tests  (Table 3). In the initial model, all potential predictors and cofactors were included (child age, sex, language, urban/rural location, informal housing, household access to basic necessities, presence of biological caregiver, maternal and paternal orphanhood, perinatal or horizontal infection, pill burden and past-year changes of medication, clinic or hospital care, travel time to clinic and visiting clinic alone/accompanied). In the second model, all factors associated at p-value less than 0.1 with adherence were included, and in the final model, all factors associated at p-value less than 0.05 were shown.
Third, associations of age of disclosure and ART-adherence were examined for perinatally infected adolescents who knew their status (n = 362 of 540 perinatally infected) (Table 4). Horizontally infected adolescents were excluded as the processes of point-of-care testing do not entail family/healthcare worker choice about whether and when to disclose. The WHO guidelines recommend disclosure by the age of 12 for perinatally infected adolescents, and so associations between disclosure under age 12 and adherence were examined in multivariate logistic regression, using the same process and cofactors as on the full sample above.
Socio-demographic factors are summarized in Table 1. Children were 10–19 years old (mean 13.4, SD 2.67), 52% female and 79% perinatally infected. Ninety-six percent of adolescents spoke Xhosa as a first language, and 18% lived in informal ‘shack’ housing while the remainder lived in rural traditional or urban formal structures. Sixty-seven percent lacked basic necessities and 45% lived with a biological parent. Maternal/paternal orphanhood was 45 and 29%, respectively, and 15% were double orphans. Seventy percent of ART-initiated adolescents knew their HIV-status.
Self-reported nonadherence in the past week was 36%. Independent of socio-demographics, past-week full adherence was associated with lower likelihood of adolescents experiencing two or more of concurrent shingles, mouth ulcers or tuberculosis symptoms [odds ratio (OR) 0.55; 95% CI 0.40–0.76, P < 0.001] (Table 2).
Associations of adolescent knowledge of status to adherence
In the final adjusted model, adolescent knowledge of their HIV-status doubled the odds of past-week full adherence (OR 2.18; 95% CI 1.47–3.24, P < 0.001), independent of all cofactors of age, sex, location, ethnicity, informal housing, poverty, biological caregiver relationship, maternal/paternal orphanhood, perinatal infection, medication burden, changes in medication, clinic type, travel time to clinic and lone/accompanied clinic attendance. Full adherence was negatively associated with being older (OR 0.85; 95% CI 0.80–0.91, P < 0.001) and longer travel time to the clinic (OR 0.72; 95% CI 0.57–0.89, P < 0.005) (Table 3).
Associations of younger-age disclosure to nonadherence
In the final adjusted model, among perinatally infected adolescents who knew their status (n = 362), disclosure prior to age 12 was associated with past-week full adherence (OR 2.07; 95% CI 1.34–5.22, P < .005), independent of all cofactors of age, sex, location, ethnicity, informal housing, poverty, biological caregiver relationship, maternal/paternal orphanhood, perinatal infection, medication burden, changes in medication, clinic type, travel time to clinic and lone/accompanied clinic attendance. Full adherence was also negatively associated with longer travel time to the clinic (OR 0.54; 95% CI 0.39–0.73, P < 0.001) (Table 4).
Qualitative findings identified largely positive experiences of disclosure that may explain associations with higher adherence. In both home and clinic settings, disclosure provided opportunities to ask challenging questions, to express feelings of anxiety, shame and anger, and to improve treatment literacy. Disclosure was often reported as a dialogue, and efforts were made to modify information in accordance with the age, emotional maturity and clinical history of individual children or adolescents. In some healthcare settings, disclosure could also facilitate access to other forms of support such as social grants or support groups.
Many reports of disclosure included locally adapted analogies that healthcare workers used with the aim of explaining the virus and enhancing patient self-efficacy. In the most common of these analogies, healthcare workers described HIV as a tsotsi [gangster], the adolescent as a policeman and ART as a weapon: ‘When you drink them [ART], it puts the HIV in jail’, explained a doctor, [direct observation, Hospital X, 2014]. A doctor recounted: ‘At that point I also explain to them that they have a future, and they can live until they are old. They can go to university, and have a car, and have babies, and get married, and do all of the things that they want to do, as long as they take the ARVs’. In a few cases, strategies to induce fear during disclosure processes were reported to be counter-productive. Where adolescents were threatened with social censure, illness or death should they default from ART, disclosure processes were characterized by anxiety, anger and risks of prompting rebellion through ART defaulting.
Qualitative findings may also help to understand why earlier disclosure was associated with positive outcomes of higher adherence among perinatally infected adolescents. Healthcare workers described earlier disclosure as reducing levels and extent of deception: ‘That's why I know it's better if you tell them earlier, at age ten or eleven … When we’ve told older children, their reaction is worse … Firstly, you’ve lied to them, and they feel very, very hurt by that. And secondly, they are in such a difficult stage of their lives, to add to that, ‘Now you’ve got HIV’, and all the implications of that, it slays them’. [Hospital Y 2014].
However, qualitative findings also indicated that understandings of disclosure may vary between healthcare workers, caregivers and adolescents. For some adolescents, disclosure was only partially understood at first: ‘My grandmother said that I will take these pills until I die, because they are my life. And she said I have HIV. At that time I didn’t understand. I only understood when I was eleven years old … I thought she was kidding with me, but I took them anyway because I was sick and I thought the tablets were for my fever’ (14-year old HIV-positive girl, 17 December 2014). Complexities also emerged in the process of undertaking the quantitative research, which identified discrepant perceptions of disclosure. These were primarily cases in which clinics and caregivers reported that adolescents were unaware of their status, but adolescents identified that they were fully aware. For these adolescents, status knowledge had occurred through a range of processes, including ‘googling’ their medication, learning about HIV treatment at school, asking older cousins or siblings and having been told by a previous, now-deceased caregiver.
Around 2.1 million adolescents worldwide are currently living with HIV, of which 1.3 million live in Southern and Eastern Africa . Paediatric access to antiretroviral medication in the region is 29%, far behind adult access at 59% . For those adolescents who have access to HIV-treatment, it is essential that they are supported to maintain adherence and thus survive into adulthood .
This study provides strong empirical support that full disclosure to adolescents of their HIV-positive status is associated with higher ART adherence. Amongst perinatally infected adolescents, early disclosure prior to age 12 is associated with further improved adherence. Adherence was associated with reduced opportunistic infection symptoms. It is clear that paediatric disclosure is important, ideally undertaken early, and may be insufficiently utilized as a means to improve treatment outcomes.
Findings also suggest that paediatric disclosure can be done well in a low-resource context and in a range of government health facilities. Qualitative findings report that healthcare workers and caregivers are responsive to the incremental nature of disclosure, and that adolescents may require multiple opportunities to comprehend the meaning of their status. This aligns with HIV literature suggesting that disclosure is a multistage process rather than an event  and must adapt for paediatric developmental processes, perhaps especially when accompanied by HIV-related cognitive delays . Disclosure may also need to be sensitive to the caregivers’ stages of disclosure of their own HIV-status .
These findings add to a mixed but small literature. Of the seven known studies worldwide, only two include samples of over 100 adolescents and find either no associations between disclosure and adherence in Thailand  or negative associations in Kenya . However, both studies combined adolescent data with that of children as young as 6, and so adolescent-disaggregated analyses would allow more opportunity for comparison. In three smaller African studies [10,12,15], disclosure was associated with higher adherence. Other studies examine outcomes linked to adherence, such as a recent study in Cote D’Ivoire that found disclosure positively associated with adolescent retention in care . A recent meta-analysis of disclosure to children under age 12 found a 20%, but statistically nonsignificant association with adherence .
However, findings, and those of other studies in the region , also show inaccurate assumptions about whether and the extent to which disclosure has taken place. Clinic documentation may be unreliable, and caregivers may inaccurately assume that adolescents know or understand their HIV-status. Such confusion may be exacerbated by changes in continuities of care, for instance when adolescents change clinics, transition from paediatric to adult care or change caregivers due to illness or bereavement. Findings additionally suggest that adolescents are not passive recipients of disclosure, but are actively engaging in searches to understand their illness and medication. Very few studies assess the effectiveness of programmes to support the process of paediatric disclosure, although recent encouraging evidence from a South African study of a family-based disclosure intervention for younger children shows increased disclosure, reduced parental and child psychological distress and improved child behavioural outcomes [43,44]. Emerging data from Zimbabwe and South Africa suggest positive adherence and communication impacts of family-based programmes for HIV-positive adolescents [45,46].
This study has a number of limitations. Firstly, although all disclosure had taken place prior to reporting of past-week adherence, the cross-sectional nature of the data limits corroboration of causal pathways. Secondly, only self-reported measures of adherence were available, due to infrequent testing of viral load and CD4+ cell count in low-resource health services. Thirdly, some of the qualitative findings, such as potential negative effects of ultimatum-based disclosure, were unable to be substantiated by testing in the quantitative data. And fourthly, of the 1075 living adolescents originally recorded in clinic records, 351 were unable to be traced due to false names or addresses given, or migration. This reflects the challenges facing both HIV-research and HIV-services serving a highly stigmatized and mobile young population. Despite these limitations, this study has notable strengths. It is the largest known study of ART adherence and disclosure among adolescents, and it is the only known study to use community-tracing in order to include adolescents not actively engaged in clinical care. Of 724 adolescent-caregiver dyads approached, refusal rates were very low at 5%. Self-reported adherence was strongly associated with lower rates of multiple opportunistic infection symptoms. Disclosure definitions followed guidelines requiring both naming and basic understanding of HIV , and disclosure was assessed sensitively and using multiple sources.
Adolescent adherence to ART remains a major challenge. But adherence is also a gateway to reducing HIV-mortality, preventing onwards transmission and limiting viral resistance. Disclosure of HIV status to children and adolescents may be daunting, particularly for families negotiating stigma, illness and bereavement . But this study shows substantive adherence benefits of HIV-status disclosure to paediatric and adolescent patients. It also shows that disclosure can and does take place well within resource-constrained state health services and family settings. It provides the first empirical testing and strong evidential support of the WHO's recommendations to disclose under the age of twelve. Full, enabling and developmentally appropriate disclosure of their HIV-status to paediatric populations may be a vital tool in promoting adolescent adherence.
This was a collaborative study between the Universities of Oxford and Cape Town, UNICEF, the South African National Departments of Health, Basic Education and Social Development, Pediatric AIDS Treatment for Africa and local CBOs the Raphael Centre, Small Projects Foundation and Keiskamma Trust. The authors would particularly like to thank Julia Rosenfeld, Maya Isaacohn, Marija Pantelic, Janina Steinert, Lizzy Button, Craig Carty, Gerry Boon, Luntu Galo, Sheree Goldswain, Justus Hofmeyr, Sibongile Mandondo and Nicoli Nattrass. This project would not be possible without excellent fieldworkers. We thank the healthcare workers, families and most of all we thank the adolescents who participated in this study.
This work was supported by the Nuffield Foundation under Grant CPF/41513, the International AIDS Society through the CIPHER grant (155-Hod), the Philip Leverhulme Trust (PLP-2014-095), the Economic and Social Research Council (IAA-MT13-003) and the Clarendon-Green Templeton College Scholarship (Elona Toska). Additional support for Lucie Cluver and Franziska Meinck was provided by the European Research Council (ERC) under the European Union's Seventh Framework Programme (FP7/2007-2013)/ ERC grant agreement no. 313421. Additional support for Rebecca Hodes was provided by South Africa's National Research Foundation and the University of Cape Town's Humanities Faculty.
Conflicts of interest
Authors declare no conflict of interest in conducting and publishing this research.
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Keywords:Copyright © 2015 Wolters Kluwer Health, Inc.
adolescent adherence; antiretroviral therapy; disclosure; HIV/AIDS