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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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          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.


          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.


          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.


          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 references 23

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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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            Prevalence and pattern of disclosure of HIV status in HIV-infected children in Ghana.

            With the advent of highly active antiretroviral therapy (HAART) HIV-infected children are surviving into adulthood. Despite emerging evidence of the benefits of disclosure, when and how to disclose the diagnosis of HIV to children remain a clinical dilemma. We investigated the prevalence and determinants of HIV disclosure in a cross-sectional study of 71 caregiver-child dyads from the Pediatric HIV/AIDS Care Program at Korle-Bu Teaching Hospital (Accra, Ghana). The children were between 8 and 14 years of age (median age, 10.39 years). The prevalence of disclosure was 21%. In the unadjusted analyses, the age of child, the level of education of child, deceased biologic father, administration of own HIV medications, and longer duration on HIV medication were significantly associated with disclosure. The low prevalence of disclosure underscores the need for a systematic and a staged approach in disclosing HIV status to infected children in resource limited countries.
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              Cohort Profile: Caribbean, Central and South America Network for HIV research (CCASAnet) collaboration within the International Epidemiologic Databases to Evaluate AIDS (IeDEA) programme.


                Author and article information

                J Int AIDS Soc
                J Int AIDS Soc
                Journal of the International AIDS Society
                John Wiley and Sons Inc. (Hoboken )
                04 July 2018
                July 2018
                : 21
                : 7 ( doiID: 10.1002/jia2.2018.21.issue-7 )
                [ 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@ )
                © 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 License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                Figures: 0, Tables: 4, Pages: 7, Words: 7680
                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
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                July 2018
                Converter:WILEY_ML3GV2_TO_NLMPMC version:version= mode:remove_FC converted:04.07.2018


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