# Models of support for disclosure of HIV status to HIV-infected children and adolescents in resource-limited settings

Elise Arrive, S. Ayaya, M. A. Davies, C. Chimbetete, A. Edmonds, P. Lelo, S. M. Fong, K. A. Razali, K. Kouakou, S. N. Duda, et al.

<figure><img src="image_1.png" /></figure>

## To cite this version:

Elise Arrive, S. Ayaya, M. A. Davies, C. Chimbetete, A. Edmonds, et al.. Models of support for disclosure of HIV status to HIV-infected children and adolescents in resource-limited settings. AIDS. Official journal of the international AIDS Society, 2018, 21 (7), pp.e25157. 10.1002/jia2.25157. hal-03163401

HAL Id: hal-03163401

https://hal.science/hal-03163401

Submitted on 9 Mar 2021

HAL is a multi-disciplinary open access archive for the deposit and dissemination of scientific research documents, whether they are published or not. The documents may come from teaching and research institutions in France or abroad, or from public or private research centers.

L'archive ouverte pluridisciplinaire HAL, est destinée au dépôt et à la diffusion de documents scientifiques de niveau recherche, publiés ou non, émanant des établissements d'enseignement et de recherche français ou étrangers, des laboratoires publics ou privés.

<figure><img src="image_2.png" /></figure>
SHORT REPORT

# Models of support for disclosure of HIV status to HIV-infected children and adolescents in resource-limited settings

Elise Arrivé¹,² ID, Samuel Ayaya³, Mary-Ann Davies⁴ ID, Cleophas Chimbetete⁵, Andrew Edmonds⁶, Patricia Lelo⁷, Siew Moy Fong⁸, Kamarul Azahar Razali⁹, Kouadio Kouakou¹⁰, Stephany N Duda¹¹, Valériane Leroy¹², Rachel C Vreeman¹³,¹⁴ ID and for the IeDEA Pediatric Working Group

**Corresponding author:** Elise Arrivé, Université de Bordeaux, UFR des Sciences Odontologiques, 146 rue Léo Saignat, 33076 Bordeaux Cedex, France. Tel: +33(0)5 57 57 30 11. (elise.arrive@u-bordeaux.fr)

**Abstract**

**Introduction:** Disclosure of HIV status to HIV-infected children and adolescents is a major care challenge. We describe current site characteristics related to disclosure of HIV status in resource-limited paediatric HIV care settings within the International Epidemiology Databases to Evaluate AIDS (IeDEA) consortium.

**Methods:** An online site assessment survey was conducted across the paediatric HIV care sites within six global regions of IeDEA. A standardized questionnaire was administered to the sites through the REDCap platform.

**Results:** From June 2014 to March 2015, all 180 sites of the IeDEA consortium in 31 countries completed the online survey: 57% were urban, 43% were health centres and 86% were integrated clinics (serving both adults and children). Almost all the sites (98%) reported offering disclosure counselling services. Disclosure counselling was most often provided by counsellors (87% of sites), but also by nurses (77%), physicians (74%), social workers (68%), or other clinicians (65%). It was offered to both caregivers and children in 92% of 177 sites with disclosure counselling. Disclosure resources and procedures varied across geographical regions. Most sites in each region reported performing staff members' training on disclosure (72% to 96% of sites per region), routinely collecting HIV disclosure status (50% to 91%) and involving caregivers in the disclosure process (71% to 100%). A disclosure protocol was available in 14% to 71% of sites. Among the 143 sites (79%) routinely collecting disclosure status process, the main collection method was by asking the caregiver or child (85%) about the child's knowledge of his/her HIV status. Frequency of disclosure status assessment was every three months in 63% of the sites, and 71% stored disclosure status data electronically.

**Conclusion:** The majority of the sites reported offering disclosure counselling services, but educational and social support resources and capacities for data collection varied across regions. Paediatric HIV care sites worldwide still need specific staff members' training on disclosure, development and implementation of guidelines for HIV disclosure, and standardized data collection on this key issue to ensure the long-term health and wellbeing of HIV-infected youth.

**Keywords:** disclosure; adolescents; low- and middle-income countries; vertical HIV infection; counselling; site assessment

Received 3 January 2018; Accepted 13 June 2018

Copyright © 2018 The Authors. Journal of the International AIDS Society published by John Wiley & sons Ltd on behalf of the International AIDS Society. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

# 1 | INTRODUCTION

Disclosure of HIV serostatus to perinatally HIV-infected children and adolescents is an important part of paediatric HIV care. HIV is a highly stigmatized disease requiring lifelong treatment, but also prevention counselling to avoid onward sexual and mother-to-child transmission. In addition, disclosure often involves explaining that the infection was acquired from a biological parent. It is therefore a complex process requiring a comprehensive assessment and appropriate involvement of children's cognitive, psychological, familial and social environments. Partial disclosure (without mentioning HIV/AIDS) can be started early (six to eight years) but should be completed by a full disclosure (with explicit information about his/her

HIV infection, HIV disease, AIDS, care and HIV transmission modes) by the age of 12 years the latest, as recommended by the World Health Organization (WHO) [1]. The potential emotional and social impact of HIV disclosure could aggravate behavioural disorders, familial conflicts and social stigma [2,3]. However, disclosure is important to improve adherence to antiretroviral therapy (ART) [4] and retention in care [5], as well as to promote safer sexual practices to prevent secondary transmission. Existing data suggest that the HIV disclosure process often occurs late and in the adolescent period [6-14]. Also, the prevalence of children and adolescents aware of their HIV status varies by setting and by the age of the patients, and has been reported to be from 13 to 60% in low- and middle-income countries (LMICs) [6-14].
With improved effectiveness of ART programmes for perinatally infected children, the numbers of adolescents who have grown up with HIV infection are increasing. Within this population, disclosure represents a new challenge for families, medical staff members and the adolescents themselves [15]. To face this challenge and support families, healthcare workers may need disclosure-specific guidance, skills and programmes. The WHO recommends that caregivers should be oriented to engage at appropriate ages with disclosure process which should be monitored and supported until full disclosure is achieved [16]. However, the disclosure process and associated services have not been well characterized across LMICs. The resources available for training providers in these countries about paediatric HIV disclosure are largely based on the Western disclosure model and experience [17]. While some models guiding disclosure have been implemented within research settings in LMICs [18-20], the depth of implementation of such models for HIV status disclosure in resource-limited, routine clinical care is unclear. Documenting existing strategies for the HIV disclosure process in these settings would help to characterize the current limits and strengths to HIV disclosure process, so that these data could be used to develop supportive interventions. Our objective was to describe current site characteristics related to the process of disclosure of HIV status within paediatric HIV care in LMICs.

## 2 | METHODS

An online site assessment survey was conducted across HIV care and treatment clinics caring for children within the International Epidemiology Databases to Evaluate AIDS (IeDEA) cohort consortium. IeDEA is an international research consortium established in 2005 by the National Institute of Allergy and Infectious Diseases (www.iedea.org/home/who-we-are). IeDEA collects HIV/AIDS data from seven international regional data centres, including four in Africa, and one each in the Asia-Pacific region, the Caribbean, Central and South America region (CCASA), and North America [21,22]. In the present study, focusing on LMICs, the North America region was not included. All IeDEA-participating sites and their corresponding central regional data centres have ethics approvals for the collection of patient-level data within the IeDEA data mergers and for routine surveys of site-level characteristics. Because the present survey did not include patient-level data from respondents or patients, and was a part of the routine site-level surveys, a separate ethics review was not required.

A standardized questionnaire was constructed and administered through the web-based REDCap platform (http://project-redcap.org/), as part of a site-level survey about adherence and support services for HIV-infected children and adolescents. The questionnaire was available in English and French.

All sites caring for children and still engaged in IeDEA consortium at the time of the survey were included in the study. Coordinators at each site were asked to determine the most appropriate person (one by site) to complete the survey as the person-in-charge of paediatric HIV services at each clinical site.

Questions were asked about the site (setting, level, public, size...), whether the staff members of the site had received training on counselling related to disclosure of HIV status to children, the site offered disclosure counselling services, the

site had a protocol for disclosure of HIV status to children, the site had disclosure status collected routinely and if so, the frequency and method of collection. We also asked the site representative to estimate the percentage of children at the site knowing that they are HIV-infected by the time they reach 14 years of age. No specific guidance was provided on what was considered for the survey to be disclosure counselling, training, protocol or data collection.

Frequencies and percentages were produced for categorical variables, with medians and interquartile ranges (IQRs) calculated for continuous variables.

We compared the report of disclosure services according to the reported percentage of children knowing their HIV status (<80% or ≥80%) using Chi square or Fisher exact tests. The threshold for significance was 0.05. The analyses were conducted with SAS software version 9.3.

## 3 | RESULTS

From June 2014 to March 2015, all 180 sites caring for children and still engaged in IeDEA consortium at the time of the survey in 31 countries of the six regions completed the online questionnaire (response rate of 100%); the majority (53%) were from Southern Africa, and were integrated clinics serving both adults and children (86%) (Table 1). In Asia, CCASA, Central, and West Africa, most of the sites were urban (94% to 100%) and represented regional, provincial, or university hospitals (94% to 100%). The Southern Africa sites were mainly health centres (60%), and in East Africa, they were distinct hospitals (50%). In both of these regions, the sites were mostly rural (57%). Survey respondents were mainly paediatricians (62%), clinical officers (14%), medical officers (6%), nurses (5%), non-paediatrician physicians (4%).

The clinics each reported caring for a median of 162 children (IQR: 81 to 351) during the previous 12 months.

Almost all the sites (98%) reported offering disclosure counselling services (Table 2). Disclosure resources and procedures varied across regions: staff members' training on disclosure was done in 72% to 96% of sites in each region, with lower frequencies in Central and East Africa. A disclosure protocol was available in 14% (Southern Africa) to 71% (CCASA) of sites within the region, and HIV disclosure status was collected routinely in 50% (Central Africa) to 91% (West Africa) of sites within the region. Eighty-three percent had at least three of the services or resources described above available. The main collection method of disclosure status was through asking the caregiver and child (85%) about the child's knowledge of his/her HIV status. Disclosure status was collected every three months in 63% of these sites and every month in 26%. Two-thirds of the sites collecting disclosure status (71%) stored this data electronically; 88% of the sites with electronic disclosure data were from Southern and East Africa.

Among the 53 sites (29%) with a formal disclosure protocol, 32 (60%) had designed it locally and 21 (40%) borrowed/ adapted from various external sources, including four from WHO guidelines, five from local national ART treatment guidelines, and 12 from independent sources (Table 2). For those sites with a disclosure protocol, the protocol was initiated a median of 4.6 years prior to the survey (IQR: 1.4 to 7.1), with a site from CCASA having a protocol for 16.7 years.
<table><caption>Table 1. Site characteristics of the paediatric leDEA consortium by region (N = 180 sites)</caption><thead><tr><th>Site characteristics</th><th>Asia<br>(N = 16; 9%)<br>N (%)</th><th>Latin America<br>(N = 7; 4)<br>N (%)</th><th>Central Africa<br>(N = 18; 10%)<br>N (%)</th><th>East Africa<br>(N = 33; 18%)<br>N (%)</th><th>Southern Africa<br>(N = 95; 53%)<br>N (%)</th><th>West Africa<br>(N = 11; 6%)<br>N (%)</th><th>Total<br>N (%)</th></tr></thead><tbody><tr><td>Location</td><td></td><td></td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>Urban</td><td>15 (94)</td><td>7 (100)</td><td>17 (94)</td><td>12 (36)</td><td>41 (43)</td><td>11 (100)</td><td>103 (57)</td></tr><tr><td>Rural</td><td>1 (6)</td><td></td><td>1 (6)</td><td>21 (64)</td><td>54 (57)</td><td></td><td>77 (43)</td></tr><tr><td>Clinic type</td><td></td><td></td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>Paediatric</td><td>13 (81)</td><td></td><td>1 (6)</td><td>1 (3)</td><td>3 (3)</td><td>7 (64)</td><td>25 (14)</td></tr><tr><td>Both adult and children</td><td>3 (19)</td><td>7 (100)</td><td>17 (94)</td><td>32 (97)</td><td>92 (97)</td><td>4 (36)</td><td>155 (86)</td></tr><tr><td>Level</td><td></td><td></td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>Health centre</td><td>2 (12)</td><td></td><td>1 (6)</td><td>13 (39)</td><td>56 (60)</td><td>1 (19)</td><td>73 (41)</td></tr><tr><td>District hospital</td><td></td><td></td><td></td><td>16 (49)</td><td>24 (25)</td><td>2 (18)</td><td>42 (23)</td></tr><tr><td>Regional, provincial, or<br>university hospital</td><td>13 (82)</td><td>7 (100)</td><td>17 (94)</td><td>4 (12)</td><td>7 (7)</td><td>8 (73)</td><td>56 (31)</td></tr><tr><td>Unknown</td><td>1 (6)</td><td></td><td></td><td></td><td>8 (8)</td><td></td><td>9 (5)</td></tr><tr><td>Respondent's role</td><td></td><td></td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>Clinician</td><td>1 (6)</td><td></td><td></td><td>4 (12)</td><td>78 (82)</td><td>1 (9)</td><td>84 (47)</td></tr><tr><td>Principal investigator</td><td>12 (75)</td><td>4 (57)</td><td>1 (5)</td><td>2 (6)</td><td>9 (9)</td><td>4 (36)</td><td>32 (18)</td></tr><tr><td>Head clinician/clinical officer</td><td>2 (12)</td><td>2 (29)</td><td>8 (45)</td><td>22 (67)</td><td>2 (2)</td><td>3 (27)</td><td>39 (22)</td></tr><tr><td>Head nurse</td><td></td><td></td><td>6 (33)</td><td>1 (3)</td><td>1 (1)</td><td></td><td>8 (4)</td></tr><tr><td>Site manager</td><td></td><td></td><td>3 (17)</td><td>3 (9)</td><td>4 (4)</td><td>1 (9)</td><td>11 (6)</td></tr><tr><td>Other</td><td>1 (6)</td><td>1 (14)</td><td></td><td>1 (3)</td><td>1 (1)</td><td>2 (18)</td><td>6 (3)</td></tr></tbody></table>

Disclosure counselling was most often provided by counselors (88% of sites), but also by nurses (78%), physicians (76%), social workers (69%), or other clinicians (66%) (Table 3). Counselling was offered to both caregivers and children in 92% of the 177 sites providing disclosure counselling. Almost all the sites (95%) involved caregivers in the disclosure process, but nine did not (Table 3). Counsellors were the health-care workers most often involved in the disclosure process (74% to 100% of regional sites outside of Asia) except in Asia, where physicians participated more. Nurses were also frequently involved in East and Southern Africa (82% and 94% of regional sites, respectively).

The median site percentage of HIV-infected adolescents estimated by the site representatives as knowing their serostatus by age 14 was 80% (IQR: 75% to 80%) (Table 2). Sites with disclosure percentage of 80% or more reported higher frequency of paediatrician as a respondent, disclosure counselling, staff members' training on disclosure and collection of disclosure status but fewer frequency of disclosure protocols (Table 4).

## 4 | DISCUSSION

To the best of our knowledge, this study is the first characterizing HIV disclosure practices among a large sample of paediatric HIV clinical sites (N = 180) in LMICs. Most sites reported offering disclosure counselling services. Current guidelines do not characterize well recommended services associated to disclosure process [1]. We have therefore focused on those which were frequently reported in the literature as being important, such as counselling, training, protocol and collection of disclosure process [23,24]. These services,

except for the protocol, were associated here with a percentage of children knowing their HIV status by 14 years of age estimated by site representatives of 80% or more. Our study showed that counsellors were frequently the primary individuals involved in the disclosure process in our sites. However, in the literature describing interventions to support disclosure, there is no specific mention of counsellors having a role in this process [25], as usually “healthcare workers” or “providers” are cited as being involved with disclosure. Counsellors and social workers may have been combined into the designation of “provider,” and play key roles in the delivery of care. Further study to document their knowledge level, and attitudes, and practices relevant to disclosure, as well as their working conditions regarding disclosure (e.g. time and effort allocated, training received), could guide future interventions to strengthen counsellors’ skills to enhance the quality of disclosure.

Only one-third of the sites had a protocol for the disclosure process, reflecting the absence of specific disclosure guidelines and standardized procedures at the site level [26]. Collection of disclosure status was not systematic among many of the participating sites, despite these data being useful for routine paediatric HIV follow-up, particularly for targeting adherence support and transitions from paediatric care to adult care. In addition, these data would help clinic staff members to avoid inadvertent disclosure of a child’s status. Electronic capture of disclosure status was less common and is a particular barrier for conducting research on disclosure in these settings. Systematic collection of disclosure status would facilitate inclusion of this factor in retrospective or prospective studies related to clinical, immunological, virological and psychosocial outcomes.
<table><caption>Table 2. Site characteristics related to disclosure of HIV status to HIV-infected children and adolescents in the paediatric leDEA consortium by region (N = 180 sites)</caption><thead><tr><th>Site characteristics</th><th>Asia<br>(N = 16)<br>N (%)</th><th>Latin<br>America<br>(N = 7)<br>N (%)</th><th>Central<br>Africa<br>(N = 18)<br>N (%)</th><th>East<br>Africa<br>(N = 33)<br>N (%)</th><th>Southern<br>Africa<br>(N = 95)<br>N (%)</th><th>West Africa<br>(N = 11)<br>N (%)</th><th>Total<br>N (%)</th></tr></thead><tbody><tr><td>Disclosure counselling</td><td>16 (100)</td><td>6 (86)</td><td>18 (100)</td><td>31 (94)</td><td>95 (100)</td><td>11 (100)</td><td>177 (98)</td></tr><tr><td>Staff members' training on disclosure</td><td>15 (94)</td><td>6 (86)</td><td>13 (72)</td><td>24 (73)</td><td>91 (96)</td><td>10 (91)</td><td>159 (88)</td></tr><tr><td>Disclosure protocol</td><td>9 (56)</td><td>5 (71)</td><td>10 (56)</td><td>11 (33)</td><td>13 (14)</td><td>5 (45)</td><td>53 (29)</td></tr><tr><td>Years since a protocol has been initiated; median (IQR)</td><td>4.6 (3.5 to 6.0)</td><td>11.3 (10.3 to 12.2)</td><td>5.7 (2.7 to 5.7)</td><td>1.3 (1.2 to 2.9)</td><td>4.6 (2.5 to 6.7)</td><td>6.1 (5.6 to 7.6)</td><td>4.6 (1.4 to 7.1)</td></tr><tr><td>Collection of disclosure status</td><td>13 (81)</td><td>4 (57)</td><td>9 (50)</td><td>23 (70)</td><td>84 (88)</td><td>10 (91)</td><td>143 (79)</td></tr><tr><td>Disclosure status collection method</td><td></td><td></td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>Interview with caregiver</td><td>2 (15)</td><td>3 (75)</td><td>2 (22)</td><td>6 (26)</td><td>2 (2)</td><td>1 (10)</td><td>16 (11)</td></tr><tr><td>Interview with child</td><td></td><td></td><td></td><td>5 (22)</td><td></td><td></td><td>5 (4)</td></tr><tr><td>Interview with caregiver and child</td><td>11 (85)</td><td>1 (25)</td><td>7 (78)</td><td>12 (52)</td><td>82 (98)</td><td>9 (90)</td><td>122 (85)</td></tr><tr><td>Frequency</td><td></td><td></td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>Every month</td><td>1 (8)</td><td>2 (50)</td><td>6 (67)</td><td>22 (96)</td><td>2 (2.5)</td><td>4 (45)</td><td>37 (26)</td></tr><tr><td>Every three months</td><td>4 (31)</td><td>1 (25)</td><td>2 (22)</td><td></td><td>79 (94)</td><td>3 (33)</td><td>89 (63)</td></tr><tr><td>Every six months</td><td>4 (31)</td><td></td><td></td><td></td><td>1 (1)</td><td></td><td>5 (3)</td></tr><tr><td>Once a year</td><td>2 (15)</td><td>1 (25)</td><td>1 (11)</td><td></td><td></td><td></td><td>4 (3)</td></tr><tr><td>Other</td><td>2 (15)</td><td></td><td></td><td>1 (4)</td><td>2 (2.5)</td><td>2 (22)</td><td>7 (5)</td></tr><tr><td>Disclosure status data stored electronically</td><td>5 (38)</td><td>2 (50)</td><td>2 (22)</td><td>11 (48)</td><td>79 (94)</td><td>3 (30)</td><td>102 (71)</td></tr><tr><td>Estimated percentage of children knowing their HIV status by the age of 14</td><td>83 (75 to 95)</td><td>95 (20 to 100)</td><td>87 (75 to 95)</td><td>70 (30 to 90)</td><td>80 (80 to 80)</td><td>50 (10 to 70)</td><td>80 (75 to 80)</td></tr><tr><td>Median (Interquartile Range)</td><td></td><td></td><td></td><td></td><td></td><td></td><td></td></tr></tbody></table>

Across the sites, the median percent of children knowing their HIV status by 14 years of age estimated by the site representatives was high at 80%. This is in contrast with the literature, which has frequently reported lower proportions of children/adolescents aware of their HIV status, often less than 50% [13], and at an older age at disclosure. There are several significant limitations to the disclosure estimate reported here. First, this survey was not intended to measure disclosure prevalence directly with families or patients. The primary objective was to assess site services with the survey.

The disclosure percentage was estimated roughly by the person in charge of paediatric HIV care, without any requirement for patient data or underlying numbers to calculate this estimate. They may have reported higher rates of disclosure in the context of discussing paediatric services and guidelines that likely push for child HIV disclosure [1,16].

Another limitation of this survey was the reliance on self-reported practices, which were not cross-checked with the site and which may vary from the actual delivery of disclosure services. What we report here may be therefore the optimal
<table><caption>Table 3. Persons involved in services to support disclosure of HIV status to HIV-infected children and adolescents in the paediatric IeDEA consortium by region (N = 180 sites)</caption><thead><tr><th></th><th>Asia<br>(N = 16)<br>N (%)</th><th>Latin<br>America<br>(N = 7)<br>N (%)</th><th>Central<br>Africa<br>(N = 18)<br>N (%)</th><th>East<br>Africa<br>(N = 33)<br>N (%)</th><th>Southern<br>Africa<br>(N = 95)<br>N (%)</th><th>West<br>Africa<br>(N = 11)<br>N (%)</th><th>Total<br>N (%)</th></tr></thead><tbody><tr><td colspan="8"><strong>Persons delivering disclosure counselling</strong></td></tr><tr><td>Physicians</td><td>16 (100)</td><td>3 (50)</td><td>9 (50)</td><td>9 (29)</td><td>87 (92)</td><td>10 (91)</td><td>134 (76)</td></tr><tr><td>Nurses</td><td>7 (44)</td><td>4 (67)</td><td>10 (56)</td><td>25 (81)</td><td>89 (94)</td><td>3 (27)</td><td>138 (78)</td></tr><tr><td>Others clinicians</td><td>3 (19)</td><td>1 (17)</td><td></td><td>23 (74)</td><td>87 (92)</td><td>3 (27)</td><td>117 (66)</td></tr><tr><td>Counsellors</td><td>7 (44)</td><td>6 (100)</td><td>16 (89)</td><td>23 (74)</td><td>94 (99)</td><td>10 (91)</td><td>156 (88)</td></tr><tr><td>Social workers</td><td>4 (25)</td><td>5 (83)</td><td>12 (67)</td><td>15 (48)</td><td>80 (84)</td><td>6 (55)</td><td>122 (69)</td></tr><tr><td>Peers</td><td></td><td></td><td>1 (6)</td><td>1 (3)</td><td></td><td></td><td>2 (1)</td></tr><tr><td>Other</td><td></td><td></td><td></td><td>1 (3)</td><td>4 (4)</td><td></td><td>5 (3)</td></tr><tr><td colspan="8"><strong>Persons benefiting from disclosure counselling</strong></td></tr><tr><td>Caregivers</td><td>2 (12)</td><td></td><td>1 (6)</td><td>7 (23)</td><td></td><td>1 (9)</td><td>11 (6)</td></tr><tr><td>Children</td><td>1 (6)</td><td></td><td></td><td>2 (6)</td><td></td><td></td><td>3 (2)</td></tr><tr><td>Both caregivers and children</td><td>13 (82)</td><td>6 (100)</td><td>17 (94)</td><td>22 (71)</td><td>95 (100)</td><td>10 (91)</td><td>163 (92)</td></tr><tr><td colspan="8"><strong>Persons participating in the disclosure process</strong></td></tr><tr><td>Caregivers</td><td>16 (100)</td><td>5 (71)</td><td>16 (89)</td><td>32 (97)</td><td>94 (99)</td><td>8 (73)</td><td>171 (95)</td></tr><tr><td>Physicians</td><td>14 (87)</td><td>6 (86)</td><td>12 (67)</td><td>12 (36)</td><td>87 (92)</td><td>8 (73)</td><td>139 (77)</td></tr><tr><td>Nurses</td><td>10 (62)</td><td>2 (29)</td><td>12 (67)</td><td>27 (82)</td><td>89 (94)</td><td>1 (9)</td><td>141 (78)</td></tr><tr><td>Other clinicians</td><td>3 (19)</td><td></td><td>2 (11)</td><td>21 (64)</td><td>86 (91)</td><td>3 (28)</td><td>115 (64)</td></tr><tr><td>Counsellors</td><td>7 (44)</td><td>6 (86)</td><td>17 (94)</td><td>23 (70)</td><td>94 (99)</td><td>10 (91)</td><td>157 (87)</td></tr><tr><td>Social workers</td><td>6 (37)</td><td>5 (71)</td><td>12 (67)</td><td>15 (45)</td><td>81 (85)</td><td>4 (36)</td><td>123 (68)</td></tr><tr><td>Peers</td><td></td><td></td><td>2 (11)</td><td>1 (3)</td><td></td><td></td><td>3 (2)</td></tr><tr><td>Others</td><td></td><td></td><td></td><td></td><td>4 (4)</td><td></td><td>4 (2)</td></tr><tr><td colspan="8"><strong>Person collecting disclosure status</strong></td></tr><tr><td>Physicians</td><td>11 (69)</td><td>4 (57)</td><td>4 (22)</td><td>12 (36)</td><td>82 (86)</td><td>7 (64)</td><td>120 (67)</td></tr><tr><td>Nurses</td><td>9 (56)</td><td>1 (14)</td><td>3 (17)</td><td>14 (42)</td><td>81 (85)</td><td></td><td>108 (60)</td></tr><tr><td>Others clinicians</td><td>2 (12)</td><td>1 (14)</td><td></td><td>19 (58)</td><td>78 (82)</td><td>2 (18)</td><td>102 (57)</td></tr><tr><td>Counsellors</td><td>5 (31)</td><td>2 (29)</td><td>7 (39)</td><td>11 (33)</td><td>82 (86)</td><td>7 (64)</td><td>114 (63)</td></tr><tr><td>Social workers</td><td>4 (25)</td><td>1 (14)</td><td>8 (44)</td><td>7 (21)</td><td>79 (83)</td><td>4 (36)</td><td>103 (57)</td></tr><tr><td>Peers</td><td></td><td></td><td></td><td>1 (3)</td><td></td><td></td><td>1 (1)</td></tr><tr><td>Other</td><td>1 (6)</td><td></td><td></td><td>1 (3)</td><td></td><td></td><td>2 (1)</td></tr></tbody></table>

higher end of service delivery and what actually happens might be somewhat or even much worse. Finally, the sites participating in this survey were predominantly in urban settings, except in Southern Africa and the survey may characterize resources reflecting the highest levels of HIV care and treatment for children in these countries. However, the majority of these sites were routine care clinics that provided standard and representative HIV care, often in partnership with the Ministries of Health. A few sites were more focused on research. The HIV care provided by these sites was generally considered representative of the care available in each location [27].

## 5 | CONCLUSION

While the majority of IeDEA paediatric sites reported offering disclosure counselling services, educational and social support resources and data collection capacity around disclosure

<table><caption>Table 4. Site characteristics related to disclosure of HIV status to HIV-infected children and adolescents in the paediatric IeDEA consortium according to the estimated percentage of children knowing their HIV status by the age of 14 Median (N = 180 sites)</caption><thead><tr><th>Estimated percentage of children<br>knowing their HIV status by the<br>age of 14</th><th>&lt;80%<br>N (%)</th><th>&ge;80%<br>N (%)</th><th>p value</th></tr></thead><tbody><tr><td>Paediatrician responding</td><td>16 (33)</td><td>95 (72)</td><td>&lt;10<sup>-4a</sup></td></tr><tr><td>Disclosure counselling</td><td>46 (96)</td><td>131 (99)</td><td>0174<sup>b</sup></td></tr><tr><td>Staff members' training on disclosure</td><td>34 (71)</td><td>125 (95)</td><td>&lt;10<sup>-4a</sup></td></tr><tr><td>Disclosure protocol</td><td>25 (52)</td><td>28 (21)</td><td>&lt;10<sup>-4a</sup></td></tr><tr><td>Collection of disclosure status</td><td>34 (71)</td><td>125 (95)</td><td>&lt;10<sup>-4a</sup></td></tr></tbody></table>

<footnote><sup>a</sup>Chi squared test; <sup>b</sup>Fisher exact test.</footnote>
varied by region. Disclosure counselling was mainly delivered by counsellors rather than formal medical staff members, training support was inconsistent, and moderate to low proportions of disclosure protocol use was reported in all the regions. To design appropriate interventions for paediatric HIV disclosure, more information about counsellors' knowledge, attitudes, practices and working conditions is needed, as is more information about the disclosure training content and categories of healthcare workers who received specific disclosure-related training. Paediatric HIV care sites worldwide still need specific support on HIV disclosure to ensure the long-term health and wellbeing of HIV-infected youth.

## AUTHORS' AFFILIATIONS

¹ISPD, Centre INSERM U1219- Epidémiologie-Biostatistique, Université de Bordeaux, Bordeaux, France; ²INSERM U1219, Centre Inserm Épidémiologie et Biostatistique, Université de Bordeaux, Bordeaux, France; ³School of Medicine, College of Health Science, Moi University, Eldoret, Kenya; ⁴University of Cape Town, Cape Town, South Africa; ⁵Newlands Clinic, Harare, Zimbabwe; ⁶Department of Epidemiology, Gillings School of Global Public Health, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA; ⁷School of Public Health, The University of Kinshasa, Kinshasa, Congo; ⁸Hospital Likas, Kota Kinabalu, Malaysia; ⁹Hospital Kuala Lumpur, Kuala Lumpur, Malaysia; ¹⁰CIRBA, Abidjan, Cote d'Ivoire; ¹¹Vanderbilt University School of Medicine, Nashville, TN, USA; ¹²Inserm U1027, Université de Toulouse 3, Toulouse, France; ¹³Indiana University School of Medicine, Indianapolis, IN, USA; ¹⁴Academic Model Providing Access to Healthcare (AMPATH), Eldoret, Kenya

## COMPETING INTERESTS

The authors declare not conflict of interest.

## AUTHORS' CONTRIBUTIONS

EA contributed to the writing of the protocol, the questionnaire, and the manuscript, and analysed the data. MAD, CC, PL, SMF, KAR, KK and AE contributed to data collection, and reviewed and edited the manuscript. SND contributed to data collection and preparation, and review of the manuscript. VL contributed to the writing of the questionnaire and data collection and reviewed and edited the manuscript. SA and RCV contributed to the writing of the protocol and the questionnaire, data collection and reviewed and edited the manuscript.

## ACKNOWLEDGEMENTS

We thank the respondents from the IeDEA paediatric sites for their participation in this study.

**East Africa:** Diero L, Ayaya S, Sang E, Moi University, AMPATH Plus, Eldoret, Kenya; Bukusi E, Charles Karue Kibaara, Elisheba Mutegi, KEMRI (Kenya Medical Research Institute), Kisumu, Kenya; John Ssali, Mathew Ssemakadde, Masaka Regional Referral Hospital, Masaka, Uganda; Fred Nalugoda, Francis X. Wasswa, Rakai Health Sciences Program, Kalisizo, Uganda; G.R. Somi, Joseph Nondi, NACP (National AIDS Control Program) Dar es Salaam, Tanzania; Rita Elias Lyamuya, Francis Mayanga, Morogoro Regional Hospital, Morogoro, Tanzania; Kapella Ngonyani, Jerome Lwali, Tumbi Regional Hospital, Pwani, Tanzania; Mark Urassa, Denna Michael, Richard Machemba, National Institute for Medical Research (NIMR), Kisesa HDSS, Mwanza, Tanzania; Kara Wools-Kaloustian, Constantin Yiannoutsos, Rachel Vreeman, Beverly Musick, Indiana University School of Medicine, Indiana University, Indianapolis, IN, USA.

**West Africa:** Sikiratou Adouni Koumakpai-Adeothy, CNHU, Cotonou, Benin; Lorna Awo Renner, Korle Bu Hospital, Accra, Ghana; Sylvie Marie N'Gbeche, ACONDA CePreF, Abidjan, Ivory Coast; Clarisse Amani Bosse, ACONDA_BTCT+, Abidjan, Ivory Coast; Krouadio Kouakou, CIRBA, Abidjan, Cote d'Ivoire; Madeleine Amorissani Folquet, CHU de Cocody, Abidjan, Cote d'Ivoire; François Tanoh Eboua, CHU de Yopougon, Abidjan, Cote d'Ivoire; Fatoumata Dicko Traore, Hopital Gabriel Toure, Bamako, Mali; Elom Takassi, CHU Sylvanus Olympio, Lomé,Togo; François Dabis, Elise Arrive, Eric Balestre, Renaud Becquet, Charlotte Bernard, Shino Chassagne Arikawa, Alexandra Doring, Antoine Jaquet, Karen Malateste, Elodie Rabourdin, Thierry Tiendrebeogo, ADERA, Isped & INSERM U1219, Bordeaux, France; Sophie Desmonde, Julie Jesson, Valeriane Leroy, Inserm 1027, Toulouse, France; Didier Kavmou Ekouevi, Jean-Claude

Azani, Patrick Coffie, Abdoulaye Cissé, Guy Gnepa, Apollina Horo, Christian Kouadio, Boris Tchounga, PACC!, CHU Treichville, Abidjan, Côte d'Ivoire.

**Central Africa:** Nimbona Pélagie, ANSS, Burundi; Patrick Gateretse, Jeanine Munezero, Valentin Niteraka, Théodore Niyongabo, Christelle Twizere, Centre National de Reference en Matière de VIH/SIDA, Burundi; Hélène Bukuru, Thierry Nahimana, CHUK, Burundi; Jérémie Biziragusenyuka, Risase Scholastique Manyundo, HPRC, Burundi; Kien Atsu, Tabeyang Mbuh, Bamenda Hospital, Cameroon; Rogers Ajeh, Mark Benwi, Anastase Dzudie, Akindeh Mbuh, Marc Lionel Ngamani, Victorine Nkome, CRENC & Douala General Hospital, Cameroon; Djenabou Amadou, Eric Ngassam, Eric Walter Pefura Yone, Jamot Hospital, Cameroon; Alice Ndelle Ewanoge, Norbert Fuhngwa, Chris Moki, Limbe Regional Hospital, Cameroon; Catherine Akele, Faustin Kitetele, Patricia Lelo, Martine Tabala, Kalembelemba Paediatric Hospital, Democratic Republic of Congo; Emile Wemakoy Okitolonda, Landry Wenzi, Kinshasa School of Public Health, Democratic Republic of Congo; Merlin Diafouka, Martin Herbas Ekat, Dominique Mahambou Nsonde, CTA Brazzaville, Republic of Congo; Adolpe Mafou, CTA Pointe-Noire, Republic of Congo; Fidele Ntarambirwa, Bethsaida Hospital, Rwanda; Yvonne Tuyishimire, Busanza Health Center, Rwanda; Theogene Hakizimana, Gahanga Health Center, Rwanda; Josephine Yinkamiye, Gikondo Health Center, Rwanda; Sandrine Mukantwali, Kabuga Health Center, Rwanda; Henriette Kayitesi, Olive Uwamahoro, Kicukiro Health Center, Rwanda; Viateur Habumuremiy, Masaka Health Center, Rwanda; Joyce Mukamana, Narugunga Health Center, Rwanda; Jean Claude Dusingize, Gallican Kubwimana, Pacifique Mugunzi, Benjamin Muhoza, Athanase Munyaneza, Emmanuel Ndahiro, Diane Nyiransabimana, Jean d'Amour Sinayobye, Vincent Sugira, Rwanda Military Hospital, Rwanda; Chantal Benekigeri, Gilbert Mbaraga, WE-ACTx Health Center, Rwanda; Adebola Adedimeji, Kathryn Anastos, Madeline Dilorenzo, Lynn Murchison, Jonathan Ross, Albert Einstein College of Medicine, USA; Diane Addison, Meg Baker, Ellen Brazier, Heidi Jones, Elizabeth Kelvin, Sarah Kulkarni, Denis Nash, Olga Tymejczyk, City University of New York (CUNY), School of Public Health, USA; Batya Elul, Columbia University, USA; Xiatao Cai, Don Hoover, Hae-Young Kim, Chunshan Li, Qiuhu Shi, Data Solutions, USA; Kathryn Lancaster, Marcel Yotebieng, Ohio State University, USA; Mark Kuniholm, University at Albany, State University of New York, USA; Andrew Edmonds, Angela Parcesepe, University of North Carolina at Chapel Hill, USA; Stephany Duda; Vanderbilt University School of Medicine, USA; April Kimmel, Virginia Commonwealth University School of Medicine, USA; Margaret McNairy, Weill Cornell Medical Center.

**Southern Africa:** Gary Maartens, Aid for AIDS, South Africa; Michael Vinikoor, Centre for Infectious Disease Research in Zambia (CIDRZ), Zambia; Monique van Lettow, Dignitas, Malawi; Robin Wood, Gugulethu ART Programme, South Africa; Nosisa Sipambo, Harriet Shezi Clinic, South Africa; Frank Tanser, Africa Centre for Health & Population Studies (Hlabisa), South Africa; Jonathan Euvrard, Khayelitsha ART Programme, South Africa; Geoffrey Fatti, Kheth'Impilo, South Africa; Sam Phiri, Lighthouse Clinic, Malawi; Cleophas Chimbetete, Newlands Clinic, Zimbabwe; Karl Technau, Rahima Moosa Mother and Child Hospital, South Africa; Brian Eley, Red Cross Children's Hospital, South Africa; Josephine Muhairwe, SolidarMed Lesotho; Anna Jores, SolidarMed Mozambique; Kamelia Kamenova, SolidarMed Zimbabwe, Matthew P Fox, Themba Lethu Clinic, South Africa; Hans Prozesky, Tygerberg Academic Hospital, South Africa; Nina Anderegg, Marie Ballif, Julia Bohlius, Cam Ha Dao Ostinelli, Frédérique Chammartin, Matthias Egger, Lukas Fenner, Per von Groote, Andreas Haas, Taghavi Katayoun, Eliane Rohner, Adrian Spörri, Gilles Wandeler, Elizabeth Zaniewski, Kathrin Zürcher, Institute of Social and Preventive Medicine, University of Bern, Switzerland; Andrew Boulle, Morna Cornell, Mary-Ann Davies, Victoria Iyun, Nicola Maxwell, Leigh Johnson, Patience Nyakato, Gem Patten, Michael Schomaker, Priscilla Tsondai, School of Public Health and Family Medicine, University of Cape Town, South Africa.

**Asia-Pacific:** PS Ly*, and V Khol, National Centre for HIV/AIDS, Dermatology and STDs, Phnom Penh, Cambodia; J Tucker, New Hope for Cambodian Children, Phnom Penh, Cambodia; N Kumarasamy*, and E Chandrasekaran, YRGCARE Medical Centre, CART CRS, Chennai, India; DK Wati*, D Vedaswari, and IB Ramajaya, Sanglah Hospital, Udayana University, Bali, Indonesia; N Kurniati*, and D Muktirti, Cipto Mangunkusumo - Faculty of Medicine Universitas Indonesia, Jakarta, Indonesia; SM Fong*, M Lim, and F Daut, Hospital Likas, Kota Kinabalu, Malaysia; NK Nik Yusoff*‡, and P Mohamad, Hospital Raja Perempuan Zainab II, Kelantan, Malaysia; TJ Mohamed* and MR Drawis, Paediatric Institute, Hospital Kuala Lumpur, Kuala Lumpur, Malaysia; R Nallusamy*, and KC Chan, Penang Hospital, Penang, Malaysia; T Sudjaritruk*, V Sirisanthana, and L Aurpibul, Department of Paediatrics, Faculty of Medicine, and Research Institute for Health Sciences, Chiang Mai University, Chiang Mai, Thailand; R Hansudewechakul*, P Ounchanum, S Denjanta, and A Kongphonoi, Chiangrai Prachanukroh Hospital, Chiang Rai, Thailand; P Lumbiganon*†, P Kosaraksa, P
Tharnprisan, and T Udomphanit, Division of Infectious Diseases, Department of Paediatrics, Faculty of Medicine, Khon Kaen University, Khon Kaen, Thailand; G Jourdain, PHPT-IRD UMI 174 (Institut de recherche pour le développement and Chiang Mai University), Chiang Mai, Thailand; T Puthanakit*, S Anugulruengkit, W Jantarabenjakul and R Nadsasarn, Department of Paediatrics, Faculty of Medicine and Research Unit in Paediatric and Infectious Diseases, Chulalongkorn University, Bangkok, Thailand; K Chokephaibulkit*, K Lappha, W Phongsamart, and S Sricharoenchai, Department of Paediatrics, Faculty of Medicine Siriraj Hospital, Mahidol University, Bangkok, Thailand; KH Truong*, QT Du, and CH Nguyen, Children's Hospital 1, Ho Chi Minh City, Vietnam; VC Do*, TM Ha, and VT An Children's Hospital 2, Ho Chi Minh City, Vietnam; LV Nguyen*, DTK Khu, AN Pham, and LT Nguyen, National Hospital of Paediatrics, Hanoi, Vietnam; ON Le, Worldwide Orphans Foundation, Ho Chi Minh City, Vietnam: AH Sohn*, JL Ross, and C Sethaputra, TREAT Asia/amfAR – The Foundation for AIDS Research, Bangkok, Thailand; DA Cooper, MG Law*, and A Kariminia, The Kirby Institute, UNSW Australia, Sydney, Australia: (*Steering Committee members; † Current Steering Committee Chair; ‡ co-Chair).

**Caribbean, Central and South America:** Fundación Huésped, Argentina; Pedro Cahn, Carina Cesar, Valeria Fink, Omar Sued, Emanuel Dell'Isola, Hector Perez, Jose Valiente, and Cleyton Yamamoto; Instituto Nacional de Infectología-Fiocruz, Brazil: Beatriz Grinsztejn, Valdilea Veloso, Paula Luz, Raquel de Boni, Sandra Cardoso Wagner, Ruth Friedman, and Ronaldo Moreira; Universidade Federal de Minas Gerais, Brazil: Jorge Pinto, Flavia Ferreira, Marcelle Maia; Universidade Federal de São Paulo, Brazil: Regina Célia de Menezes Succi, Daisy Maria Machado, and Aida de Fátima Barbosa Gouvêa; Fundação Arriarán, Chile: Marcelo Wolff, Claudia Cortes, Maria Fernanda Rodriguez, and Gladys Allendes; Les Centres GHESKIO, Haiti: Jean William Pape, Vanessa Rouzier, Adias Marceolin, and Christian Podrin; Hospital Escuela Universitario, Honduras: Marco Tulio Luque; Instituto Hondureño de Seguridad Social, Honduras: Denis Padgett; Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Mexico: Juan Sierra Madero, Brenda Crabtree Ramirez, Paco Belaunzaran, and Yanink Caro Vega; Instituto de Medicina Tropical Alexander von Humboldt, Peru: Eduardo Gotuzzo, Fernando Mejia, and Gabriela Carriquiry; Vanderbilt University Medical Center: Catherine C. McGowan, Bryan E. Shepherd, Timothy Sterling, Karu Jayathilake, Anna K. Person, Peter F. Rebeiro, Mark Giganti, Jessica Castilho, Stephany N. Duda, Fernanda Maruri, and Hilary Vansell.

## FUNDING

The International Epidemiology Databases to Evaluate AIDS (leDEA) is supported by the National Institute of Allergy and Infectious Diseases, Eunice Kennedy Shriver National Institute of Child Health & Human Development, National Institute on Drug Abuse, National Cancer Institute, and the National Institute of Mental Health, in accordance with the regulatory requirements of the National Institutes of Health under Award Numbers U01AI069911 (East Africa), U01AI069919 (West Africa), U01AI096299 (Central Africa), U01AI069924 (Southern Africa) and U01AI069907 (Asia Pacific). The Kirby Institute (data center for leDEA Asia Pacific) is funded by the Australian Government Department of Health and Ageing and is affiliated with the Faculty of Medicine, UNSW Sydney. The content of this manuscript is solely the responsibility of the authors and does not necessarily represent the official views of the abovementioned funding bodies.

## REFERENCES

1. World Health Organization. Guideline on HIV disclosure counselling for children up to 12 years of age. [Internet]. 2011 [cited 2018 May 19]. Available from: http://apps.who.int/iris/bitstream/10665/44777/1/9789241502863_eng.pdf.

2. Gray GE. Adolescent HIV–cause for concern in Southern Africa. PLoS Med. 2010;7(2):e1000227.

3. Foster C, Waelbrouck A, Peltier A. Adolescents and HIV infection. Curr Opin HIV AIDS. 2007;2(5):431–6.

4. Vreeman RC, Gramelspacher AM, Gisore PO, Scanlon ML, Nyandiko WM. Disclosure of HIV status to children in resource-limited settings: a systematic review. J Int AIDS Soc. 2013;16:18466.

5. Arrive E, Dicko F, Amghar H, Aka AE, Dior H, Bouah B, et al. HIV status disclosure and retention in care in HIV-infected adolescents on antiretroviral therapy (ART) in West Africa. PLoS ONE. 2012;7(3):e33690.

6. Kallem S, Renner L, Ghebremichael M, Paintsil E. Prevalence and Pattern of Disclosure of HIV Status in HIV-Infected Children in Ghana. AIDS Behav. 2011;15(6):1121–7.

7. Arun S, Singh AK, Lodha R, Kabra SK. Disclosure of the HIV infection status in children. Indian J Pediatr. 2009;76(8):805–8.

8. Bakeera-Kitaka S, Nabukeera-Barungi N, Nostlinger C, Addy K, Colebunders R. Sexual risk reduction needs of adolescents living with HIV in a clinical care setting. AIDS Care. 2008;20(4):426–33.

9. Oberdorfer P, Puthanakit T, Louthrenoo O, Charnsil C, Sirisanthana V, Sirisanthana T. Disclosure of HIV/AIDS diagnosis to HIV-infected children in Thailand. J Paediatr Child Health. 2006;42(5):283–8.

10. Bhattacharya M, Dubey AP, Sharma M. Patterns of diagnosis disclosure and its correlates in HIV-Infected North Indian children. J Trop Pediatr. 2011;57(6):405–11.

11. Biadgilign S, Deribew A, Amberbir A, Escudero HR, Deribe K. Factors associated with HIV/AIDS diagnostic disclosure to HIV infected children receiving HAART: a multi-center study in Addis Ababa, Ethiopia. PLoS ONE. 2011;6(3):e17572.

12. Brown BJ, Oladokun RE, Osinusi K, Ochigbo S, Adewole IF, Kanki P. Disclosure of HIV status to infected children in a Nigerian HIV Care Programme. AIDS Care. 2011;23:1053–8.

13. Britto C, Mehta K, Thomas R, Shet A. Prevalence and correlates of HIV disclosure among children and adolescents in low- and middle-income countries: a systematic review. J Dev Behav Pediatr. 2016;37(6):496–505.

14. Menon A, Glazebrook C, Campain N, Ngoma M. Mental health and disclosure of HIV status in Zambian adolescents with HIV infection: implications for peer-support programs. J Acquir Immune Defic Syndr. 2007;46(3):349–54.

15. Rujumba J, Mbasaalaki-Mwaka CL, Ndeezi G. Challenges faced by health workers in providing counselling services to HIV-positive children in Uganda: a descriptive study. J Int AIDS Soc. 2010;13:e9.

16. World Health Organization. Key considerations for differentiated antiretroviral therapy delivery for specific populations: children, adolescents, pregnant and breastfeeding women and key populations. [Internet]. 2017 [cited 2018 May 19]. Available from: http://www.who.int/hiv/pub/arv/hiv-differentiated-care-models-key-populations/en/.

17. African Network for the Care of Children Affected by HIV/AIDS. Handbook on Paediatric AIDS in Africa. Kampala, Uganda: ANECCA. 2006.

18. Brandt L, Beima-Sofie K, Hamunime N, Shepard M, Ferris L, Ingo P, et al. Growing-up just like everyone else: key components of a successful pediatric HIV disclosure intervention in Namibia. AIDS. 2015;29 Suppl 1:S81–9.

19. Reynolds NR, Ofori-Atta A, Larvey M, Renner L, Antwi S, Enimil A, et al. SANKOFA: a multisite collaboration on paediatric HIV disclosure in Ghana. AIDS. 2015;29 Suppl 1:S35–45.

20. Beck-Sague CM, Devieux J, Pinzon-Iregui MC, Lerebours-Nadal L, Abreu-Perez R, Bertrand R, et al. Disclosure of their HIV status to perinatally infected youth using the adapted Basini disclosure model in Haiti and the Dominican Republic: preliminary results. AIDS. 2015;29 Suppl 1:S91–8.

21. leDEA Pediatric Working Group. A survey of paediatric HIV programmatic and clinical management practices in Asia and sub-Saharan Africa—the International epidemiologic Databases to Evaluate AIDS (leDEA). J Int AIDS Soc. 2013;16:17998.

22. McGowan CC, Cahn P, Gotuzzo E, Padgett D, Pape JW, Wolff M, et al. Cohort Profile: Caribbean, Central and South America Network for HIV research (CCASanet) collaboration within the International Epidemiologic Databases to Evaluate AIDS (leDEA) programme. Int J Epidemiol. 2007;36(5):969–76.

23. Aderomilehin O, Hanciles-Amu A, Ozoya OO. Perspectives and practice of HIV disclosure to children and adolescents by Health-care providers and caregivers in sub-Saharan Africa: a systematic review. Front Public Health. 2016;4:166.

24. Dahourou D, Raynaud JP, Leroy V. The challenges of timely and safe HIV disclosure among perinatally HIV-infected adolescents in sub-Saharan Africa. Curr Opin HIV AIDS. 2018;13(3):220–9.

25. Beima-Sofie KM, Brandt L, Hamunime N, Shepard M, Uusiku J, John-Stewart GC, et al. Pediatric HIV Disclosure Intervention Improves Knowledge and Clinical Outcomes in HIV-Infected Children in Namibia. J Acquir Immune Defic Syndr. 2017;75(1):18–26.

26. Beima-Sofie K, John-Stewart G, Shah B, Wamalwa D, Maleche-Obimbo E, Kelley M. Using health provider insights to inform pediatric HIV disclosure: a qualitative study and practice framework from Kenya. AIDS Patient Care STDS. 2014;28(10):555–64.

27. Vreeman RC, Lindegren ML, Wester CW, Blevins M, AH S, Davis MA, et al. Trends in Global Pediatric HIV Programmatic Capacity among Sites of the International Epidemiologic Databases to Evaluate AIDS (leDEA) Consortium. International AIDS Society meeting; Durban, South Africa. 2016: TUPEB109.