Prevalence and Associated Characteristics of HIV-Infected Children in Latin America Who Know Their HIV Status

Prevalence and Associated Characteristics of HIV-Infected Children in Latin America Who Know... Abstract We estimated the prevalence of human immunodeficiency virus (HIV) disclosure in children from a prospective observational cohort study conducted at clinical sites in Brazil, Mexico, and Peru. Fewer than half of the children in this study knew their HIV status, which highlights the need for better strategies for disclosure that are age and culturally appropriate. In Latin America, an estimated 33000 children younger than 15 years are living with human immunodeficiency virus (HIV) [1]; the vast majority of these children acquired HIV through mother-to-child transmission. Because the availability of antiretroviral therapy coverage has increased in low- to middle-income countries (LMCs), HIV-infected children are living longer, which increases the necessity for providing appropriate medical and mental health care for these younger populations and their families. An area that requires further study on a global level is when and how best to inform children about their illness. According to World Health Organization (WHO) guidelines and the American Academy of Pediatrics, advising school-aged (6- to 12-year-old) children of their HIV-positive status (ie, disclosure) is recommended, with considerations for accommodating various levels of cognitive skill and emotional maturity [2, 3]. Other relevant factors that often motivate disclosure include the child’s health status and the child’s direct inquiries regarding the need for medications and clinic visits. Despite recommendations for disclosure and its potential beneficial effects on the physical and mental health of HIV-positive children, the proportion of those who know their status remains low [4, 5]. Authors of a review of studies that included estimates of proportions of children who knew their diagnosis reported a range of 1.2% to 75% (median, 29.5%). The proportions of children who knew their diagnosis were lower in studies conducted in LMCs than in industrialized countries (median, 20.4% vs 43.1%, respectively; P = .04). Furthermore, children from LMCs who knew their status tended to be older than those from industrialized countries (median, 9.6 vs 8.3 years, respectively; P = .09). To our knowledge, there have been no published studies on the rates of disclosure in Latin American children with HIV. In this study, we estimated the prevalence of school-aged children who knew their HIV-infection status and identified clinical and demographic characteristics associated with disclosure in HIV-infected children from Latin America. With a greater understanding of the prevalence of and characteristics associated with disclosure, interventions to implement age- and culturally appropriate methods of disclosure to children in resource-limited settings can be developed. METHODS The Eunice Kennedy Shriver National Institute of Child Health and Human Development International Site Development Initiative Pediatric Latin American Countries Epidemiologic Study (PLACES) is an observational prospective cohort study to document the demographic, clinical, immunologic, and virologic characteristics of HIV-infected children at participating clinical sites in Brazil, Mexico, and Peru. Data were collected using standardized case-report forms specifically designed for this study. The analyses reported in this study included the subset of vertically HIV-infected children of school age (≥5 years at enrollment) who were enrolled in 2008–2009. Participants underwent routine medical history and clinical evaluations at visits scheduled at 6-month intervals. Each child’s caregiver was asked at study enrollment and follow-up visits if the child knew his or her HIV-infection status and, if so, the age at which the status was disclosed to the child. RESULTS Among 500 children enrolled in the PLACES, 236 were eligible for this analysis on the basis of their age at enrollment (≥5 years, which corresponds to the youngest age at which a disclosure occurred in the Eunice Kennedy Shriver National Institute of Child Health and Human Development International Site Development Initiative database). Children were enrolled in the study for a mean duration of 33 months (standard deviation, 5 months). The prevalence of disclosure at enrollment was 21.2% (95% Clopper-Pearson confidence interval [CI], 16.2%–27.0%; age range, 5–11 years); most (82%) disclosures occurred at ≥8 years of age. Of those who did not know their status at enrollment, 22.6% (42) were made aware during study follow-up, and most (93%) disclosures made while the child was on-study occurred at ≥9 years of age. The mean age at the time of disclosure among those who ever knew their HIV status was 9.2 years (median, 9 years; range, 5–13 years). The mean age at the time of last study visit for children whose status was not disclosed to them was 9.1 years (median, 8 years; range, 6–13 years). The prevalence of disclosure for the entire sample by the time of their last PLACES visit was 39.0% (95% CI, 32.7%–45.5%). The prevalences of disclosure by the last study visit reported separately according to country were 40.7% (77 of 189; 95% CI, 33.7%–48.1%), 38.5 (15 of 39; 95% CI, 23.4%–55.4%), and 0% (0 of 8; 95% CI, 0.0%–36.9%) for Brazil, Mexico, and Peru, respectively. The mean ages at the time of disclosure among those who ever knew their HIV status were 9.3 and 9.1 years for Brazil and Mexico, respectively. None of the 8 participants from Peru were given disclosure regarding their HIV status (all of them were 5 years old at study enrollment). Characteristics significantly associated with children’s knowledge of their HIV status (Table 1) included fewer years of formal education completed by the primary caregiver (P = .04); lower education was associated with higher proportions of children who knew their HIV status. The vital status of the biological father also was significantly associated with disclosure (P = .03); a greater proportion of children whose biological father was deceased knew their HIV status. Mean log10 viral load at baseline and the proportion of children who had been prescribed antiretroviral medication were also significantly associated with HIV disclosure status. Table 1. Characteristics of Children ≥5 Years Old at Enrollment (n = 236) Characteristic  Overall (N = 236)  Disclosed by/at Enrollment (N = 50)  Not Disclosed by/at Enrollment (N = 186)  Pa  Age at enrollment (n [%])        <.0001   5 y  74 (31.4)  1 (1.4)  73 (98.6)     6 y  12 (5.1)  0 (0.0)  12 (100)     7 y  27 (11.4)  1 (3.7)  26 (96.3)     8 y  27 (11.4)  5 (18.5)  22 (81.5)     9 y  46 (19.5)  16 (34.8)  30 (65.2)     10 y  39 (16.5)  21 (53.8)  18 (46.2)     11 y  11 (4.7)  6 (54.5)  5 (45.5)    Mean age (SD) (y)  7.5 (2.0)  9.4 (1.1)  7.0 (1.9)  <.0001  Age at last visit (n [%])        <.0001   6 y  3 (1.3)  0 (0.0)  3 (100)     7 y  21 (8.9)  0 (0.0)  21 (100)     8 y  50 (21.3)  2 (4.0)  48 (96.0)     9 y  18 (7.7)  0 (0.0)  18 (100)     10 y  26 (11.1)  6 (23.1)  20 (76.9)     11 y  29 (12.3)  17 (58.6)  12 (41.4)     12 y  45 (19.1)  32 (71.1)  13 (28.9)     13 y  35 (14.9)  27 (77.1)  8 (22.9)     14 y  8 (3.4)  8 (100)  0 (0.0)     Unknown  1 (0.4)  1 (0.4)  0 (0.0)    Sex (n [%])        .75   Female  124 (52.5)  25 (50.0)  99 (53.2)     Male  112 (47.5)  25 (50.0)  87 (46.8)    Primary caregiver (n [%])        .59   Biological parent  178 (75.4)  40 (80.0)  138 (74.2)     Other relative  28 (11.9)  6 (12.0)  22 (11.8)     Adoptive parent/foster care manager/parent  30 (12.7)  4 (8.0)  26 (14.0)    Status of biological mother (n [%])        .56   Alive  178 (75.4)  35 (70.0)  143 (76.9)     Deceased  53 (22.5)  14 (28.0)  39 (21.0)     Unknown  5 (2.1)  1 (2.0)  4 (2.2)    Status of biological father (n [%])        .03   Alive  157 (66.5)  32 (64.0)  125 (67.2)     Deceased  45 (19.1)  15 (30.0)  30 (16.1)     Unknown  34 (14.4)  3 (6.0)  31 (16.7)    HIV status of biological father (n [%])        .18   Infected  143 (60.6)  36 (72.0)  107 (57.5)     Uninfected  38 (16.1)  5 (10.0)  33 (17.7)     Unknown  55 (23.3)  9 (18.0)  46 (24.7)     Education of primary caregiver (n [%])        .04   0–6 y  98 (41.5)  28 (56.0)  70 (37.6)     7–12 y  121 (51.3)  21 (42.0)  100 (53.8)     >12 y  17 (7.2)  1 (2.0)  16 (8.6)    CDC disease classification (n [%])        .37   None  19 (8.1)  3 (6.0)  16 (8.6)     A  69 (29.2)  17 (34.0)  52 (28.0)     B  70 (29.7)  18 (36.0)  52 (28.0)     C  78 (33.1)  12 (24.0)  66 (35.5)    CD4 absolute count        .08   Mean (SD) (cells per mL)  905.4 (433.0)  809.5 (301.3)  931.4 (459.6)     Data missing (n)  2  0  2    Log10 viral load        <.01   Mean (SD) (copies per mL)  2.97 (1.38)  2.34 (1.19)  3.13 (1.38)     Data missing (n)  2  1  1    Detectable viral load        .02   ≥400 copies/mL (detectable) (n [%])  113 (48.3)  16 (32.7)  97 (52.4)     <400 copies/mL (n [%])  121 (51.7)  33 (67.3)  88 (47.6)     Data missing (n)  2  1  1    Prescribed ARVs (n [%])        .01   Yes  191 (80.9)  47 (94.0)  144 (77.4)     No  45 (19.1)  3 (6.0)  42 (22.6)    Type of ARV regimen (n [%])        .78   PI and NNRTI  7 (3.7)  2 (4.3)  5 (3.5)     PI only  116 (60.7)  28 (59.6)  88 (61.1)     NNRTI only  59 (30.9)  16 (34.0)  43 (29.9)     Neither PI nor NNRTI  9 (4.7)  1 (2.1)  8 (5.6)    Characteristic  Overall (N = 236)  Disclosed by/at Enrollment (N = 50)  Not Disclosed by/at Enrollment (N = 186)  Pa  Age at enrollment (n [%])        <.0001   5 y  74 (31.4)  1 (1.4)  73 (98.6)     6 y  12 (5.1)  0 (0.0)  12 (100)     7 y  27 (11.4)  1 (3.7)  26 (96.3)     8 y  27 (11.4)  5 (18.5)  22 (81.5)     9 y  46 (19.5)  16 (34.8)  30 (65.2)     10 y  39 (16.5)  21 (53.8)  18 (46.2)     11 y  11 (4.7)  6 (54.5)  5 (45.5)    Mean age (SD) (y)  7.5 (2.0)  9.4 (1.1)  7.0 (1.9)  <.0001  Age at last visit (n [%])        <.0001   6 y  3 (1.3)  0 (0.0)  3 (100)     7 y  21 (8.9)  0 (0.0)  21 (100)     8 y  50 (21.3)  2 (4.0)  48 (96.0)     9 y  18 (7.7)  0 (0.0)  18 (100)     10 y  26 (11.1)  6 (23.1)  20 (76.9)     11 y  29 (12.3)  17 (58.6)  12 (41.4)     12 y  45 (19.1)  32 (71.1)  13 (28.9)     13 y  35 (14.9)  27 (77.1)  8 (22.9)     14 y  8 (3.4)  8 (100)  0 (0.0)     Unknown  1 (0.4)  1 (0.4)  0 (0.0)    Sex (n [%])        .75   Female  124 (52.5)  25 (50.0)  99 (53.2)     Male  112 (47.5)  25 (50.0)  87 (46.8)    Primary caregiver (n [%])        .59   Biological parent  178 (75.4)  40 (80.0)  138 (74.2)     Other relative  28 (11.9)  6 (12.0)  22 (11.8)     Adoptive parent/foster care manager/parent  30 (12.7)  4 (8.0)  26 (14.0)    Status of biological mother (n [%])        .56   Alive  178 (75.4)  35 (70.0)  143 (76.9)     Deceased  53 (22.5)  14 (28.0)  39 (21.0)     Unknown  5 (2.1)  1 (2.0)  4 (2.2)    Status of biological father (n [%])        .03   Alive  157 (66.5)  32 (64.0)  125 (67.2)     Deceased  45 (19.1)  15 (30.0)  30 (16.1)     Unknown  34 (14.4)  3 (6.0)  31 (16.7)    HIV status of biological father (n [%])        .18   Infected  143 (60.6)  36 (72.0)  107 (57.5)     Uninfected  38 (16.1)  5 (10.0)  33 (17.7)     Unknown  55 (23.3)  9 (18.0)  46 (24.7)     Education of primary caregiver (n [%])        .04   0–6 y  98 (41.5)  28 (56.0)  70 (37.6)     7–12 y  121 (51.3)  21 (42.0)  100 (53.8)     >12 y  17 (7.2)  1 (2.0)  16 (8.6)    CDC disease classification (n [%])        .37   None  19 (8.1)  3 (6.0)  16 (8.6)     A  69 (29.2)  17 (34.0)  52 (28.0)     B  70 (29.7)  18 (36.0)  52 (28.0)     C  78 (33.1)  12 (24.0)  66 (35.5)    CD4 absolute count        .08   Mean (SD) (cells per mL)  905.4 (433.0)  809.5 (301.3)  931.4 (459.6)     Data missing (n)  2  0  2    Log10 viral load        <.01   Mean (SD) (copies per mL)  2.97 (1.38)  2.34 (1.19)  3.13 (1.38)     Data missing (n)  2  1  1    Detectable viral load        .02   ≥400 copies/mL (detectable) (n [%])  113 (48.3)  16 (32.7)  97 (52.4)     <400 copies/mL (n [%])  121 (51.7)  33 (67.3)  88 (47.6)     Data missing (n)  2  1  1    Prescribed ARVs (n [%])        .01   Yes  191 (80.9)  47 (94.0)  144 (77.4)     No  45 (19.1)  3 (6.0)  42 (22.6)    Type of ARV regimen (n [%])        .78   PI and NNRTI  7 (3.7)  2 (4.3)  5 (3.5)     PI only  116 (60.7)  28 (59.6)  88 (61.1)     NNRTI only  59 (30.9)  16 (34.0)  43 (29.9)     Neither PI nor NNRTI  9 (4.7)  1 (2.1)  8 (5.6)    Abbreviations: ARV, antiretroviral medication; NNRTI, nonnucleoside reverse transcriptase inhibitor; PI, protease inhibitors; SD, standard deviation. a Bivariate analysis was used to identify factors associated with disclosure. Specifically, the Fisher exact test was used to assess associations with categorical measures, and Student t tests were used for continuous measures. Significant results (P < .05) are in bold type. View Large DISCUSSION Fewer than half of the children (aged 5–14 years) included in this study, conducted in Latin American countries, knew their HIV status. This prevalence rate is lower than that observed in most studies. The low rates in these Latin American clinical sites highlight the need in resource-limited settings for more studies on the effects of disclosure to better characterize an appropriate process for disclosure that also incorporates the cultural context of the child and his or her family [6]. In this study, conducted in Latin America, disclosure of HIV status was significantly and inversely associated with educational level of the primary caregiver. This finding lends additional support for the need for evidence-based guidance and support for caregivers in disclosing HIV-infection status to their child using materials that are appropriate to the caregiver’s level of education. Guidance on the disclosure process also needs to take into consideration cultural and contextual issues, such as the dynamics of the family [7–9]. For example, in Latino cultures, the definition of family often extends to multigenerational members, particularly grandparents; therefore, their roles in the caretaking aspects of their grandchildren need to be considered during the disclosure process. Overall, disclosure should be considered a collaborative process that involves the entire family and multidisciplinary health care team with the support of national evidence-based guidelines. We also found a significant association between disclosure and the vital status of the child’s biological father. Because we did not collect information from the caregiver regarding the cause of the biological father’s death and/or the timing of the death in relation to the child’s age of disclosure, the clinical significance of this association needs further investigation; it should be noted that the vital status of the biological father was unknown for 14% of children in the overall sample. The death of the child’s father could have served as a motivator to disclose the child’s illness to encourage the child to take better care of his or her own health, such as by improving adherence to antiretroviral medications. It is also possible that the death of the child’s father left the surviving mother with a need for additional support regarding the child, which prompted disclosure of the child’s HIV infection. Additional studies are needed to better understand the relationship between a caregiver’s vital and health status and subsequent disclosure to the child. Finally, because the age at which the child learned of his or her HIV diagnosis might have preceded study enrollment, clinical predictors as influencing factors for HIV disclosure could not be assessed within this study. However, it is of interest to report that those children who did not know their HIV status at study enrollment had the highest mean viral load. Of course, this finding is not unexpected, because it was less likely for those children who did not know their HIV status to be prescribed antiretroviral medications at enrollment. Taken together, these findings indicate that disclosure of their HIV-infection status to a child might have positive effects on medication adherence and thus viral suppression. Additional areas that need further investigation in school-aged children with HIV infection are the numbers of those who, unbeknownst to their caregiver, already know their HIV status, whether study participation influenced disclosure, and postdisclosure assessments of the child to ascertain mental health, social, academic, and family functioning. Despite World Health Organization recommendations that school-aged children be told of their HIV diagnosis, reported rates of disclosure from this observational study conducted in 3 Latin American countries among a group of HIV-infected children aged 5 years or older remain low. Significant gaps exist in research and knowledge regarding disclosure rates in developing countries and low-resource settings, and gaps regarding age- and culturally appropriate processes for disclosure also exist [10]. Additional research to identify characteristics associated with children’s knowledge of their HIV status in Latin America and other resource-limited settings in which the HIV epidemic persists is needed to guide interventions aimed at increasing disclosure rates and providing support to HIV-infected children and their families [11, 12]. Notes Acknowledgments. Principal investigators, co-principal investigators, and study coordinators include the following: Belo Horizonte, Jorge A. Pinto, Flávia F. Faleiro, and Marcelle M. Maia (Universidade Federal de Minas Gerais); Caxias do Sul, Rosa Dea Sperhacke, Nicole Golin, and Sílvia Mariani Costamilan (Universidade de Caxias do Sul/Serviço Municipal de Infectologia); Nova Iguacu, Jose Pilotto, Luis Felipe Moreira, and Ivete Gomes (Hospital Geral Nova de Iguacu–HIV Family Care Clinic); Porto Alegre, Rosa Dea Sperhacke, Breno Riegel Santos, and Rita de Cassia Alves Lira (Universidade de Caxias do Sul/Hospital Conceição), Rosa Dea Sperhacke, Mario Ferreira Peixoto, and Elizabete Teles (Universidade de Caxias do Sul/Hospital Fêmina), Rosa Dea Sperhacke, Marcelo Goldani, Carmem Lúcia Oliveira da Silva, and Margery Bohrer Zanetello (Universidade de Caxias do Sul/Hospital de Clínicas de Porto Alegre), and Regis Kreitchmann, Marcelo Comerlato Scotta, and Debora Fernandes Coelho (Irmandade da Santa Casa de Misericordia de Porto Alegre); Ribeirão Preto, Marisa M. Mussi-Pinhata, Maria Célia Cervi, Márcia L. Isaac, Fernanda Tomé Sturzbecher, and Bento V. Moura Negrini (Hospital das Clínicas da Faculdade de Medicina de Ribeirão Preto da Universidade de São Paulo); Rio de Janeiro, Ricardo Hugo S. Oliveira and Maria C. Chermont Sapia (Instituto de Puericultura e Pediatria Martagão Gesteira) and Esau Custodio Joao, Maria Leticia Cruz, Leon Claude Sidi, Maria Isabel Gouvêa, Mariza Curto Saavedra, Clarisse Bressan, and Fernanda Cavalcanti A. Jundi (Hospital dos Servidores do Estado); São Paulo, Regina Celia de Menezes Succi and Daisy Maria Machado (Escola Paulista de Medicina–Universidade Federal de São Paulo) and Marinella Della Negra, Wladimir Queiroz, and Yu Ching Lian (Instituto de Infectologia Emilio Ribas); Mexico City, Noris Pavía-Ruz, Dulce Morales-Pérez, and Karla Ojeda-Diezbarroso (Hospital Infantil de México Federico Gómez); and Lima, Jorge O. Alarcón Villaverde (Instituto de Medicina Tropical “Daniel Alcides Carrión,” Sección de Epidemiologia, Universidad Nacional Mayor de San Marcos), María Castillo Díaz (Instituto Nacional de Salud del Niño), and Mary Felissa Reyes Vega (Instituto de Medicina Tropical “Daniel Alcides Carrión,” Sección de Epidemiologia, Universidad Nacional Mayor de San Marcos). Data management and statistical center representatives include Yolanda Bertucci, Laura Freimanis Hance, René Gonin, D. Robert Harris, Roslyn Hennessey, Margot Krauss, Sue Li, Karen Megazzini, Orlando Ortega, James Korelitz, Sharon Sothern de Sanchez, Sonia K. Stoszek, and Qilu Yu (Westat, Rockville, MD). Eunice Kennedy Shriver National Institute of Child Health and Human Development (Bethesda, MD) staff include Rohan Hazra, Lynne M. Mofenson, and George K. Siberry. Disclaimer. The comments and views of the authors do not necessarily represent those of the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the Department of Health and Human Services, or the US government. Financial support. This work was supported by Eunice Kennedy Shriver National Institute of Child Health and Human Development contracts N01-HD-3-3345 (2002–2007), HHSN267200800001C (2007–2012), and HHSN275201300003C (2012–2017). Potential conflicts of interest. All authors: No reported conflicts. All authors have submitted the ICMJE Form for Potential Conflicts of Interest. Conflicts that the editors consider relevant to the content of the manuscript have been disclosed. References 1. UNAIDS. UNAIDS/AIDSinfo regional factsheets Latin American and the Caribbean/2015/HIV and AIDS estimates . Available at: http://aidsinfo.unaids.org/. Accessed 24 June 2016. 2. World Health Organization. Guideline on HIV disclosure counselling for children up to 12 years of age. Available at: http://www.who.int/hiv/pub/hiv_disclosure/en/. Accessed 31 August 2015. 3. American Academy of Pediatrics, Committee on Pediatric AIDS. Disclosure of illness status to children and adolescents with HIV infection. Pediatrics  1999; 103: 164– 6. CrossRef Search ADS PubMed  4. Pinzón-Iregui MC Beck-Sagué CM Malow RM . Disclosure of their HIV status to infected children: a review of the literature. J Trop Pediatr  2013; 59: 84– 9. Google Scholar CrossRef Search ADS PubMed  5. Vaz LM Eng E Maman S et al.   Telling children they have HIV: lessons learned from findings of a qualitative study in sub-Saharan Africa. AIDS Patient Care STDS  2010; 24: 247– 56. Google Scholar CrossRef Search ADS PubMed  6. Vreeman RC Gramelspacher AM Gisore PO et al.   Disclosure of HIV status to children in resource-limited settings: a systematic review. J Int AIDS Soc  2013; 16: 18466. Google Scholar CrossRef Search ADS PubMed  7. Centers for Disease Control and Prevention. Building our understanding: culture insights communicating with Hispanic/Latinos. Available at: http://www.cdc.gov/nccdphp/dch/programs/healthycommunitiesprogram/tools/pdf/hispanic_latinos_insight.pdf. 8. Varas-Díaz N Neilands TB Malavé Rivera S Betancourt E . Religion and HIV/AIDS stigma: implications for health professionals in Puerto Rico. Glob Public Health  2010; 5: 295– 312. Google Scholar CrossRef Search ADS PubMed  9. Murray LR Garcia J Muñoz-Laboy M Parker RG . Strange bedfellows: the Catholic Church and Brazilian National AIDS Program in the response to HIV/AIDS in Brazil. Soc Sci Med  2011; 72: 945– 52. Google Scholar CrossRef Search ADS PubMed  10. Gyamfi E Okyere P Appiah-Brempong E et al.   Benefits of disclosure of HIV status to infected children and adolescents: perceptions of caregivers and health care providers. J Assoc Nurses AIDS Care  2015; 26: 770– 80. Google Scholar CrossRef Search ADS PubMed  11. Allison SM Siberry GK . National Institutes of Health investment in studies of HIV disclosure to children. AIDS  2015; 29: S109– 18. Google Scholar CrossRef Search ADS PubMed  12. Blasini I Chantry C Cruz C et al.   Disclosure model for pediatric patients living with HIV in Puerto Rico: design, implementation, and evaluation. J Dev Behav Pediatr  2004; 25: 181– 9. Google Scholar CrossRef Search ADS PubMed  Published by Oxford University Press on behalf of The Journal of the Pediatric Infectious Diseases Society 2017. This work is written by (a) US Government employee(s) and is in the public domain in the US. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of the Pediatric Infectious Diseases Society Oxford University Press

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Abstract

Abstract We estimated the prevalence of human immunodeficiency virus (HIV) disclosure in children from a prospective observational cohort study conducted at clinical sites in Brazil, Mexico, and Peru. Fewer than half of the children in this study knew their HIV status, which highlights the need for better strategies for disclosure that are age and culturally appropriate. In Latin America, an estimated 33000 children younger than 15 years are living with human immunodeficiency virus (HIV) [1]; the vast majority of these children acquired HIV through mother-to-child transmission. Because the availability of antiretroviral therapy coverage has increased in low- to middle-income countries (LMCs), HIV-infected children are living longer, which increases the necessity for providing appropriate medical and mental health care for these younger populations and their families. An area that requires further study on a global level is when and how best to inform children about their illness. According to World Health Organization (WHO) guidelines and the American Academy of Pediatrics, advising school-aged (6- to 12-year-old) children of their HIV-positive status (ie, disclosure) is recommended, with considerations for accommodating various levels of cognitive skill and emotional maturity [2, 3]. Other relevant factors that often motivate disclosure include the child’s health status and the child’s direct inquiries regarding the need for medications and clinic visits. Despite recommendations for disclosure and its potential beneficial effects on the physical and mental health of HIV-positive children, the proportion of those who know their status remains low [4, 5]. Authors of a review of studies that included estimates of proportions of children who knew their diagnosis reported a range of 1.2% to 75% (median, 29.5%). The proportions of children who knew their diagnosis were lower in studies conducted in LMCs than in industrialized countries (median, 20.4% vs 43.1%, respectively; P = .04). Furthermore, children from LMCs who knew their status tended to be older than those from industrialized countries (median, 9.6 vs 8.3 years, respectively; P = .09). To our knowledge, there have been no published studies on the rates of disclosure in Latin American children with HIV. In this study, we estimated the prevalence of school-aged children who knew their HIV-infection status and identified clinical and demographic characteristics associated with disclosure in HIV-infected children from Latin America. With a greater understanding of the prevalence of and characteristics associated with disclosure, interventions to implement age- and culturally appropriate methods of disclosure to children in resource-limited settings can be developed. METHODS The Eunice Kennedy Shriver National Institute of Child Health and Human Development International Site Development Initiative Pediatric Latin American Countries Epidemiologic Study (PLACES) is an observational prospective cohort study to document the demographic, clinical, immunologic, and virologic characteristics of HIV-infected children at participating clinical sites in Brazil, Mexico, and Peru. Data were collected using standardized case-report forms specifically designed for this study. The analyses reported in this study included the subset of vertically HIV-infected children of school age (≥5 years at enrollment) who were enrolled in 2008–2009. Participants underwent routine medical history and clinical evaluations at visits scheduled at 6-month intervals. Each child’s caregiver was asked at study enrollment and follow-up visits if the child knew his or her HIV-infection status and, if so, the age at which the status was disclosed to the child. RESULTS Among 500 children enrolled in the PLACES, 236 were eligible for this analysis on the basis of their age at enrollment (≥5 years, which corresponds to the youngest age at which a disclosure occurred in the Eunice Kennedy Shriver National Institute of Child Health and Human Development International Site Development Initiative database). Children were enrolled in the study for a mean duration of 33 months (standard deviation, 5 months). The prevalence of disclosure at enrollment was 21.2% (95% Clopper-Pearson confidence interval [CI], 16.2%–27.0%; age range, 5–11 years); most (82%) disclosures occurred at ≥8 years of age. Of those who did not know their status at enrollment, 22.6% (42) were made aware during study follow-up, and most (93%) disclosures made while the child was on-study occurred at ≥9 years of age. The mean age at the time of disclosure among those who ever knew their HIV status was 9.2 years (median, 9 years; range, 5–13 years). The mean age at the time of last study visit for children whose status was not disclosed to them was 9.1 years (median, 8 years; range, 6–13 years). The prevalence of disclosure for the entire sample by the time of their last PLACES visit was 39.0% (95% CI, 32.7%–45.5%). The prevalences of disclosure by the last study visit reported separately according to country were 40.7% (77 of 189; 95% CI, 33.7%–48.1%), 38.5 (15 of 39; 95% CI, 23.4%–55.4%), and 0% (0 of 8; 95% CI, 0.0%–36.9%) for Brazil, Mexico, and Peru, respectively. The mean ages at the time of disclosure among those who ever knew their HIV status were 9.3 and 9.1 years for Brazil and Mexico, respectively. None of the 8 participants from Peru were given disclosure regarding their HIV status (all of them were 5 years old at study enrollment). Characteristics significantly associated with children’s knowledge of their HIV status (Table 1) included fewer years of formal education completed by the primary caregiver (P = .04); lower education was associated with higher proportions of children who knew their HIV status. The vital status of the biological father also was significantly associated with disclosure (P = .03); a greater proportion of children whose biological father was deceased knew their HIV status. Mean log10 viral load at baseline and the proportion of children who had been prescribed antiretroviral medication were also significantly associated with HIV disclosure status. Table 1. Characteristics of Children ≥5 Years Old at Enrollment (n = 236) Characteristic  Overall (N = 236)  Disclosed by/at Enrollment (N = 50)  Not Disclosed by/at Enrollment (N = 186)  Pa  Age at enrollment (n [%])        <.0001   5 y  74 (31.4)  1 (1.4)  73 (98.6)     6 y  12 (5.1)  0 (0.0)  12 (100)     7 y  27 (11.4)  1 (3.7)  26 (96.3)     8 y  27 (11.4)  5 (18.5)  22 (81.5)     9 y  46 (19.5)  16 (34.8)  30 (65.2)     10 y  39 (16.5)  21 (53.8)  18 (46.2)     11 y  11 (4.7)  6 (54.5)  5 (45.5)    Mean age (SD) (y)  7.5 (2.0)  9.4 (1.1)  7.0 (1.9)  <.0001  Age at last visit (n [%])        <.0001   6 y  3 (1.3)  0 (0.0)  3 (100)     7 y  21 (8.9)  0 (0.0)  21 (100)     8 y  50 (21.3)  2 (4.0)  48 (96.0)     9 y  18 (7.7)  0 (0.0)  18 (100)     10 y  26 (11.1)  6 (23.1)  20 (76.9)     11 y  29 (12.3)  17 (58.6)  12 (41.4)     12 y  45 (19.1)  32 (71.1)  13 (28.9)     13 y  35 (14.9)  27 (77.1)  8 (22.9)     14 y  8 (3.4)  8 (100)  0 (0.0)     Unknown  1 (0.4)  1 (0.4)  0 (0.0)    Sex (n [%])        .75   Female  124 (52.5)  25 (50.0)  99 (53.2)     Male  112 (47.5)  25 (50.0)  87 (46.8)    Primary caregiver (n [%])        .59   Biological parent  178 (75.4)  40 (80.0)  138 (74.2)     Other relative  28 (11.9)  6 (12.0)  22 (11.8)     Adoptive parent/foster care manager/parent  30 (12.7)  4 (8.0)  26 (14.0)    Status of biological mother (n [%])        .56   Alive  178 (75.4)  35 (70.0)  143 (76.9)     Deceased  53 (22.5)  14 (28.0)  39 (21.0)     Unknown  5 (2.1)  1 (2.0)  4 (2.2)    Status of biological father (n [%])        .03   Alive  157 (66.5)  32 (64.0)  125 (67.2)     Deceased  45 (19.1)  15 (30.0)  30 (16.1)     Unknown  34 (14.4)  3 (6.0)  31 (16.7)    HIV status of biological father (n [%])        .18   Infected  143 (60.6)  36 (72.0)  107 (57.5)     Uninfected  38 (16.1)  5 (10.0)  33 (17.7)     Unknown  55 (23.3)  9 (18.0)  46 (24.7)     Education of primary caregiver (n [%])        .04   0–6 y  98 (41.5)  28 (56.0)  70 (37.6)     7–12 y  121 (51.3)  21 (42.0)  100 (53.8)     >12 y  17 (7.2)  1 (2.0)  16 (8.6)    CDC disease classification (n [%])        .37   None  19 (8.1)  3 (6.0)  16 (8.6)     A  69 (29.2)  17 (34.0)  52 (28.0)     B  70 (29.7)  18 (36.0)  52 (28.0)     C  78 (33.1)  12 (24.0)  66 (35.5)    CD4 absolute count        .08   Mean (SD) (cells per mL)  905.4 (433.0)  809.5 (301.3)  931.4 (459.6)     Data missing (n)  2  0  2    Log10 viral load        <.01   Mean (SD) (copies per mL)  2.97 (1.38)  2.34 (1.19)  3.13 (1.38)     Data missing (n)  2  1  1    Detectable viral load        .02   ≥400 copies/mL (detectable) (n [%])  113 (48.3)  16 (32.7)  97 (52.4)     <400 copies/mL (n [%])  121 (51.7)  33 (67.3)  88 (47.6)     Data missing (n)  2  1  1    Prescribed ARVs (n [%])        .01   Yes  191 (80.9)  47 (94.0)  144 (77.4)     No  45 (19.1)  3 (6.0)  42 (22.6)    Type of ARV regimen (n [%])        .78   PI and NNRTI  7 (3.7)  2 (4.3)  5 (3.5)     PI only  116 (60.7)  28 (59.6)  88 (61.1)     NNRTI only  59 (30.9)  16 (34.0)  43 (29.9)     Neither PI nor NNRTI  9 (4.7)  1 (2.1)  8 (5.6)    Characteristic  Overall (N = 236)  Disclosed by/at Enrollment (N = 50)  Not Disclosed by/at Enrollment (N = 186)  Pa  Age at enrollment (n [%])        <.0001   5 y  74 (31.4)  1 (1.4)  73 (98.6)     6 y  12 (5.1)  0 (0.0)  12 (100)     7 y  27 (11.4)  1 (3.7)  26 (96.3)     8 y  27 (11.4)  5 (18.5)  22 (81.5)     9 y  46 (19.5)  16 (34.8)  30 (65.2)     10 y  39 (16.5)  21 (53.8)  18 (46.2)     11 y  11 (4.7)  6 (54.5)  5 (45.5)    Mean age (SD) (y)  7.5 (2.0)  9.4 (1.1)  7.0 (1.9)  <.0001  Age at last visit (n [%])        <.0001   6 y  3 (1.3)  0 (0.0)  3 (100)     7 y  21 (8.9)  0 (0.0)  21 (100)     8 y  50 (21.3)  2 (4.0)  48 (96.0)     9 y  18 (7.7)  0 (0.0)  18 (100)     10 y  26 (11.1)  6 (23.1)  20 (76.9)     11 y  29 (12.3)  17 (58.6)  12 (41.4)     12 y  45 (19.1)  32 (71.1)  13 (28.9)     13 y  35 (14.9)  27 (77.1)  8 (22.9)     14 y  8 (3.4)  8 (100)  0 (0.0)     Unknown  1 (0.4)  1 (0.4)  0 (0.0)    Sex (n [%])        .75   Female  124 (52.5)  25 (50.0)  99 (53.2)     Male  112 (47.5)  25 (50.0)  87 (46.8)    Primary caregiver (n [%])        .59   Biological parent  178 (75.4)  40 (80.0)  138 (74.2)     Other relative  28 (11.9)  6 (12.0)  22 (11.8)     Adoptive parent/foster care manager/parent  30 (12.7)  4 (8.0)  26 (14.0)    Status of biological mother (n [%])        .56   Alive  178 (75.4)  35 (70.0)  143 (76.9)     Deceased  53 (22.5)  14 (28.0)  39 (21.0)     Unknown  5 (2.1)  1 (2.0)  4 (2.2)    Status of biological father (n [%])        .03   Alive  157 (66.5)  32 (64.0)  125 (67.2)     Deceased  45 (19.1)  15 (30.0)  30 (16.1)     Unknown  34 (14.4)  3 (6.0)  31 (16.7)    HIV status of biological father (n [%])        .18   Infected  143 (60.6)  36 (72.0)  107 (57.5)     Uninfected  38 (16.1)  5 (10.0)  33 (17.7)     Unknown  55 (23.3)  9 (18.0)  46 (24.7)     Education of primary caregiver (n [%])        .04   0–6 y  98 (41.5)  28 (56.0)  70 (37.6)     7–12 y  121 (51.3)  21 (42.0)  100 (53.8)     >12 y  17 (7.2)  1 (2.0)  16 (8.6)    CDC disease classification (n [%])        .37   None  19 (8.1)  3 (6.0)  16 (8.6)     A  69 (29.2)  17 (34.0)  52 (28.0)     B  70 (29.7)  18 (36.0)  52 (28.0)     C  78 (33.1)  12 (24.0)  66 (35.5)    CD4 absolute count        .08   Mean (SD) (cells per mL)  905.4 (433.0)  809.5 (301.3)  931.4 (459.6)     Data missing (n)  2  0  2    Log10 viral load        <.01   Mean (SD) (copies per mL)  2.97 (1.38)  2.34 (1.19)  3.13 (1.38)     Data missing (n)  2  1  1    Detectable viral load        .02   ≥400 copies/mL (detectable) (n [%])  113 (48.3)  16 (32.7)  97 (52.4)     <400 copies/mL (n [%])  121 (51.7)  33 (67.3)  88 (47.6)     Data missing (n)  2  1  1    Prescribed ARVs (n [%])        .01   Yes  191 (80.9)  47 (94.0)  144 (77.4)     No  45 (19.1)  3 (6.0)  42 (22.6)    Type of ARV regimen (n [%])        .78   PI and NNRTI  7 (3.7)  2 (4.3)  5 (3.5)     PI only  116 (60.7)  28 (59.6)  88 (61.1)     NNRTI only  59 (30.9)  16 (34.0)  43 (29.9)     Neither PI nor NNRTI  9 (4.7)  1 (2.1)  8 (5.6)    Abbreviations: ARV, antiretroviral medication; NNRTI, nonnucleoside reverse transcriptase inhibitor; PI, protease inhibitors; SD, standard deviation. a Bivariate analysis was used to identify factors associated with disclosure. Specifically, the Fisher exact test was used to assess associations with categorical measures, and Student t tests were used for continuous measures. Significant results (P < .05) are in bold type. View Large DISCUSSION Fewer than half of the children (aged 5–14 years) included in this study, conducted in Latin American countries, knew their HIV status. This prevalence rate is lower than that observed in most studies. The low rates in these Latin American clinical sites highlight the need in resource-limited settings for more studies on the effects of disclosure to better characterize an appropriate process for disclosure that also incorporates the cultural context of the child and his or her family [6]. In this study, conducted in Latin America, disclosure of HIV status was significantly and inversely associated with educational level of the primary caregiver. This finding lends additional support for the need for evidence-based guidance and support for caregivers in disclosing HIV-infection status to their child using materials that are appropriate to the caregiver’s level of education. Guidance on the disclosure process also needs to take into consideration cultural and contextual issues, such as the dynamics of the family [7–9]. For example, in Latino cultures, the definition of family often extends to multigenerational members, particularly grandparents; therefore, their roles in the caretaking aspects of their grandchildren need to be considered during the disclosure process. Overall, disclosure should be considered a collaborative process that involves the entire family and multidisciplinary health care team with the support of national evidence-based guidelines. We also found a significant association between disclosure and the vital status of the child’s biological father. Because we did not collect information from the caregiver regarding the cause of the biological father’s death and/or the timing of the death in relation to the child’s age of disclosure, the clinical significance of this association needs further investigation; it should be noted that the vital status of the biological father was unknown for 14% of children in the overall sample. The death of the child’s father could have served as a motivator to disclose the child’s illness to encourage the child to take better care of his or her own health, such as by improving adherence to antiretroviral medications. It is also possible that the death of the child’s father left the surviving mother with a need for additional support regarding the child, which prompted disclosure of the child’s HIV infection. Additional studies are needed to better understand the relationship between a caregiver’s vital and health status and subsequent disclosure to the child. Finally, because the age at which the child learned of his or her HIV diagnosis might have preceded study enrollment, clinical predictors as influencing factors for HIV disclosure could not be assessed within this study. However, it is of interest to report that those children who did not know their HIV status at study enrollment had the highest mean viral load. Of course, this finding is not unexpected, because it was less likely for those children who did not know their HIV status to be prescribed antiretroviral medications at enrollment. Taken together, these findings indicate that disclosure of their HIV-infection status to a child might have positive effects on medication adherence and thus viral suppression. Additional areas that need further investigation in school-aged children with HIV infection are the numbers of those who, unbeknownst to their caregiver, already know their HIV status, whether study participation influenced disclosure, and postdisclosure assessments of the child to ascertain mental health, social, academic, and family functioning. Despite World Health Organization recommendations that school-aged children be told of their HIV diagnosis, reported rates of disclosure from this observational study conducted in 3 Latin American countries among a group of HIV-infected children aged 5 years or older remain low. Significant gaps exist in research and knowledge regarding disclosure rates in developing countries and low-resource settings, and gaps regarding age- and culturally appropriate processes for disclosure also exist [10]. Additional research to identify characteristics associated with children’s knowledge of their HIV status in Latin America and other resource-limited settings in which the HIV epidemic persists is needed to guide interventions aimed at increasing disclosure rates and providing support to HIV-infected children and their families [11, 12]. Notes Acknowledgments. Principal investigators, co-principal investigators, and study coordinators include the following: Belo Horizonte, Jorge A. Pinto, Flávia F. Faleiro, and Marcelle M. Maia (Universidade Federal de Minas Gerais); Caxias do Sul, Rosa Dea Sperhacke, Nicole Golin, and Sílvia Mariani Costamilan (Universidade de Caxias do Sul/Serviço Municipal de Infectologia); Nova Iguacu, Jose Pilotto, Luis Felipe Moreira, and Ivete Gomes (Hospital Geral Nova de Iguacu–HIV Family Care Clinic); Porto Alegre, Rosa Dea Sperhacke, Breno Riegel Santos, and Rita de Cassia Alves Lira (Universidade de Caxias do Sul/Hospital Conceição), Rosa Dea Sperhacke, Mario Ferreira Peixoto, and Elizabete Teles (Universidade de Caxias do Sul/Hospital Fêmina), Rosa Dea Sperhacke, Marcelo Goldani, Carmem Lúcia Oliveira da Silva, and Margery Bohrer Zanetello (Universidade de Caxias do Sul/Hospital de Clínicas de Porto Alegre), and Regis Kreitchmann, Marcelo Comerlato Scotta, and Debora Fernandes Coelho (Irmandade da Santa Casa de Misericordia de Porto Alegre); Ribeirão Preto, Marisa M. Mussi-Pinhata, Maria Célia Cervi, Márcia L. Isaac, Fernanda Tomé Sturzbecher, and Bento V. Moura Negrini (Hospital das Clínicas da Faculdade de Medicina de Ribeirão Preto da Universidade de São Paulo); Rio de Janeiro, Ricardo Hugo S. Oliveira and Maria C. Chermont Sapia (Instituto de Puericultura e Pediatria Martagão Gesteira) and Esau Custodio Joao, Maria Leticia Cruz, Leon Claude Sidi, Maria Isabel Gouvêa, Mariza Curto Saavedra, Clarisse Bressan, and Fernanda Cavalcanti A. Jundi (Hospital dos Servidores do Estado); São Paulo, Regina Celia de Menezes Succi and Daisy Maria Machado (Escola Paulista de Medicina–Universidade Federal de São Paulo) and Marinella Della Negra, Wladimir Queiroz, and Yu Ching Lian (Instituto de Infectologia Emilio Ribas); Mexico City, Noris Pavía-Ruz, Dulce Morales-Pérez, and Karla Ojeda-Diezbarroso (Hospital Infantil de México Federico Gómez); and Lima, Jorge O. Alarcón Villaverde (Instituto de Medicina Tropical “Daniel Alcides Carrión,” Sección de Epidemiologia, Universidad Nacional Mayor de San Marcos), María Castillo Díaz (Instituto Nacional de Salud del Niño), and Mary Felissa Reyes Vega (Instituto de Medicina Tropical “Daniel Alcides Carrión,” Sección de Epidemiologia, Universidad Nacional Mayor de San Marcos). Data management and statistical center representatives include Yolanda Bertucci, Laura Freimanis Hance, René Gonin, D. Robert Harris, Roslyn Hennessey, Margot Krauss, Sue Li, Karen Megazzini, Orlando Ortega, James Korelitz, Sharon Sothern de Sanchez, Sonia K. Stoszek, and Qilu Yu (Westat, Rockville, MD). Eunice Kennedy Shriver National Institute of Child Health and Human Development (Bethesda, MD) staff include Rohan Hazra, Lynne M. Mofenson, and George K. Siberry. Disclaimer. The comments and views of the authors do not necessarily represent those of the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the Department of Health and Human Services, or the US government. Financial support. This work was supported by Eunice Kennedy Shriver National Institute of Child Health and Human Development contracts N01-HD-3-3345 (2002–2007), HHSN267200800001C (2007–2012), and HHSN275201300003C (2012–2017). Potential conflicts of interest. All authors: No reported conflicts. All authors have submitted the ICMJE Form for Potential Conflicts of Interest. Conflicts that the editors consider relevant to the content of the manuscript have been disclosed. References 1. UNAIDS. UNAIDS/AIDSinfo regional factsheets Latin American and the Caribbean/2015/HIV and AIDS estimates . Available at: http://aidsinfo.unaids.org/. Accessed 24 June 2016. 2. World Health Organization. Guideline on HIV disclosure counselling for children up to 12 years of age. Available at: http://www.who.int/hiv/pub/hiv_disclosure/en/. Accessed 31 August 2015. 3. American Academy of Pediatrics, Committee on Pediatric AIDS. Disclosure of illness status to children and adolescents with HIV infection. Pediatrics  1999; 103: 164– 6. CrossRef Search ADS PubMed  4. Pinzón-Iregui MC Beck-Sagué CM Malow RM . Disclosure of their HIV status to infected children: a review of the literature. J Trop Pediatr  2013; 59: 84– 9. Google Scholar CrossRef Search ADS PubMed  5. Vaz LM Eng E Maman S et al.   Telling children they have HIV: lessons learned from findings of a qualitative study in sub-Saharan Africa. AIDS Patient Care STDS  2010; 24: 247– 56. Google Scholar CrossRef Search ADS PubMed  6. Vreeman RC Gramelspacher AM Gisore PO et al.   Disclosure of HIV status to children in resource-limited settings: a systematic review. J Int AIDS Soc  2013; 16: 18466. Google Scholar CrossRef Search ADS PubMed  7. Centers for Disease Control and Prevention. Building our understanding: culture insights communicating with Hispanic/Latinos. Available at: http://www.cdc.gov/nccdphp/dch/programs/healthycommunitiesprogram/tools/pdf/hispanic_latinos_insight.pdf. 8. Varas-Díaz N Neilands TB Malavé Rivera S Betancourt E . Religion and HIV/AIDS stigma: implications for health professionals in Puerto Rico. Glob Public Health  2010; 5: 295– 312. Google Scholar CrossRef Search ADS PubMed  9. Murray LR Garcia J Muñoz-Laboy M Parker RG . Strange bedfellows: the Catholic Church and Brazilian National AIDS Program in the response to HIV/AIDS in Brazil. Soc Sci Med  2011; 72: 945– 52. Google Scholar CrossRef Search ADS PubMed  10. Gyamfi E Okyere P Appiah-Brempong E et al.   Benefits of disclosure of HIV status to infected children and adolescents: perceptions of caregivers and health care providers. J Assoc Nurses AIDS Care  2015; 26: 770– 80. Google Scholar CrossRef Search ADS PubMed  11. Allison SM Siberry GK . National Institutes of Health investment in studies of HIV disclosure to children. AIDS  2015; 29: S109– 18. Google Scholar CrossRef Search ADS PubMed  12. Blasini I Chantry C Cruz C et al.   Disclosure model for pediatric patients living with HIV in Puerto Rico: design, implementation, and evaluation. J Dev Behav Pediatr  2004; 25: 181– 9. Google Scholar CrossRef Search ADS PubMed  Published by Oxford University Press on behalf of The Journal of the Pediatric Infectious Diseases Society 2017. This work is written by (a) US Government employee(s) and is in the public domain in the US.

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Journal of the Pediatric Infectious Diseases SocietyOxford University Press

Published: Mar 1, 2018

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