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

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          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 (Ie DEA) consortium.

          Methods

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

          Results

          From June 2014 to March 2015, all 180 sites of the Ie DEA 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.

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          Most cited references18

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          Disclosure of HIV status to children in resource-limited settings: a systematic review

          Introduction Informing children of their own HIV status is an important aspect of long-term disease management, yet there is little evidence of how and when this type of disclosure takes place in resource-limited settings and its impact. Methods MEDLINE, EMBASE and Cochrane Databases were searched for the terms hiv AND disclos* AND (child* OR adolesc*). We reviewed 934 article citations and the references of relevant articles to find articles describing disclosure to children and adolescents in resource-limited settings. Data were extracted regarding prevalence of disclosure, factors influencing disclosure, process of disclosure and impact of disclosure on children and caregivers. Results Thirty-two articles met the inclusion criteria, with 16 reporting prevalence of disclosure. Of these 16 studies, proportions of disclosed children ranged from 0 to 69.2%. Important factors influencing disclosure included the child's age and perceived ability to understand the meaning of HIV infection and factors related to caregivers, such as education level, openness about their own HIV status and beliefs about children's capacities. Common barriers to disclosure were fear that the child would disclose HIV status to others, fear of stigma and concerns for children's emotional or physical health. Disclosure was mostly led by caregivers and conceptualized as a one-time event, while others described it as a gradual process. Few studies measured the impact of disclosure on children. Findings suggested adherence to antiretroviral therapy (ART) improved post-disclosure but the emotional and psychological effects of disclosure were variable. Conclusions Most studies show that a minority of HIV-infected children in resource-limited settings know his/her HIV status. While caregivers identify many factors that influence disclosure, studies suggest both positive and negative effects for children. More research is needed to implement age- and culture-appropriate disclosure in resource-limited settings.
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            HIV Status Disclosure and Retention in Care in HIV-Infected Adolescents on Antiretroviral Therapy (ART) in West Africa

            Objective We assessed the effect of HIV status disclosure on retention in care from initiation of antiretroviral therapy (ART) among HIV-infected children aged 10 years or more in Cote d'Ivoire, Mali and Sénégal. Methods Multi-centre cohort study within five paediatric clinics participating in the IeDEA West Africa collaboration. HIV-infected patients were included in this study if they met the following inclusion criteria: aged 10–21 years while on ART; having initiated ART≥200 days before the closure date of the clinic database; followed ≥15 days from ART initiation in clinics with ≥10 adolescents enrolled. Routine follow-up data were merged with those collected through a standardized ad hoc questionnaire on awareness of HIV status. Probability of retention (no death or loss-to-follow-up) was estimated with Kaplan-Meier method. Cox proportional hazard model with date of ART initiation as origin and a delayed entry at date of 10th birthday was used to identify factors associated with death or loss-to-follow-up. Results 650 adolescents were available for this analysis. Characteristics at ART initiation were: median age of 10.4 years; median CD4 count of 224 cells/mm3 (47% with severe immunosuppression), 48% CDC stage C/WHO stage 3/4. The median follow-up on ART after the age of 10 was 23.3 months; 187 adolescents (28.8%) knew their HIV status. The overall probability of retention at 36 months after ART initiation was 74.6% (95% confidence interval [CI]: 70.5–79.0) and was higher for those disclosed compared to those not: adjusted hazard ratio for the risk of being death or loss-to-follow-up = 0.23 (95% CI: 0.13–0.39). Conclusion About 2/3 of HIV-infected adolescents on ART were not aware of their HIV status in these ART clinics in West Africa but disclosed HIV status improved retention in care. The disclosure process should be thus systematically encouraged and organized in adolescent populations.
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              Factors Associated with HIV/AIDS Diagnostic Disclosure to HIV Infected Children Receiving HAART: A Multi-Center Study in Addis Ababa, Ethiopia

              Background Diagnostic disclosure of HIV/AIDS to a child is becoming an increasingly common issue in clinical practice. Nevertheless, some parents and health care professionals are reluctant to inform children about their HIV infection status. The objective of this study was to identify the proportion of children who have knowledge of their serostatus and factors associated with disclosure in HIV-infected children receiving HAART in Addis Ababa, Ethiopia. Methods A cross-sectional study was conducted in five hospitals in Addis Ababa from February 18, 2008–April 28, 2008. The study populations were parents/caretakers and children living with HIV/AIDS who were receiving Highly Active Antiretroviral Therapy (HAART) in selected hospitals in Addis Ababa. Univariate and multivariate logistic regression analysis were carried out using SPSS 12.0.1 statistical software. Results A total of 390 children/caretaker pairs were included in the study. Two hundred forty three children (62.3%) were between 6–9 years of age. HIV/AIDS status was known by 68 (17.4%) children, 93 (29%) caretakers reported knowing the child's serostatus two years prior to our survey, 180 (46.2%) respondents said that the child should be told about his/her HIV/AIDS status when he/she is older than 14 years of age. Children less than 9 years of age and those living with educated caregivers are less likely to know their results than their counterparts. Children referred from hospital's in-patient ward before attending the HIV clinic and private clinic were more likely to know their results than those from community clinic. Conclusion The proportion of disclosure of HIV/AIDS diagnosis to HIV-infected children is low. Strengthening referral linkage and health education tailored to educated caregivers are recommended to increase the rate of disclosure.
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                Author and article information

                Contributors
                elise.arrive@u-bordeaux.fr
                Journal
                J Int AIDS Soc
                J Int AIDS Soc
                10.1002/(ISSN)1758-2652
                JIA2
                Journal of the International AIDS Society
                John Wiley and Sons Inc. (Hoboken )
                1758-2652
                04 July 2018
                July 2018
                : 21
                : 7 ( doiID: 10.1002/jia2.2018.21.issue-7 )
                : e25157
                Affiliations
                [ 1 ] ISPED Centre INSERM U1219‐ Epidémiologie‐Biostatistique Université de Bordeaux Bordeaux France
                [ 2 ] INSERM U1219 Centre Inserm Epidémiologie et Biostatistique Université de Bordeaux Bordeaux France
                [ 3 ] School of Medicine College of Health Science Moi University Eldoret Kenya
                [ 4 ] University of Cape Town Cape Town South Africa
                [ 5 ] Newlands Clinic Harare Zimbabwe
                [ 6 ] Department of Epidemiology Gillings School of Global Public Health The University of North Carolina at Chapel Hill Chapel Hill NC USA
                [ 7 ] School of Public Health The University of Kinshasa Kinshasa Congo
                [ 8 ] Hospital Likas Kota Kinabalu Malaysia
                [ 9 ] Hospital Kuala Lumpur Kuala Lumpur Malaysia
                [ 10 ] CIRBA Abidjan Cote D'Ivoire
                [ 11 ] Vanderbilt University School of Medicine Nashville TN USA
                [ 12 ] Inserm U1027 Université de Toulouse 3 Toulouse France
                [ 13 ] Indiana University School of Medicine Indianapolis IN USA
                [ 14 ] Academic Model Providing Access to Healthcare (AMPATH) Eldoret Kenya
                Author notes
                [*] [* ] 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@ 123456u-bordeaux.fr )
                Author information
                http://orcid.org/0000-0002-5502-2069
                http://orcid.org/0000-0001-8496-6475
                http://orcid.org/0000-0001-5460-8204
                Article
                JIA225157
                10.1002/jia2.25157
                6031071
                29972632
                bfc17816-e8f3-44dc-b44f-7d74297d6598
                © 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 http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                History
                : 03 January 2018
                : 13 June 2018
                Page count
                Figures: 0, Tables: 4, Pages: 7, Words: 7680
                Funding
                Funded by: National Institute of Allergy and Infectious Diseases
                Funded by: Eunice Kennedy Shriver National Institute of Child Health & Human Development
                Funded by: National Institute on Drug Abuse
                Funded by: National Cancer Institute
                Funded by: National Institute of Mental Health
                Funded by: National Institutes of Health
                Award ID: U01AI069911
                Award ID: U01AI069919
                Award ID: U01AI096299
                Award ID: U01AI069924
                Award ID: U01AI069907
                Funded by: Australian Government Department of Health and Ageing
                Funded by: Faculty of Medicine, UNSW Sydney
                Categories
                Short Report
                Short Reports
                Custom metadata
                2.0
                jia225157
                July 2018
                Converter:WILEY_ML3GV2_TO_NLMPMC version:version=5.4.1.1 mode:remove_FC converted:04.07.2018

                Infectious disease & Microbiology
                disclosure,adolescents,low‐ and middle‐income countries,vertical hiv infection,counselling,site assessment

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