No retraction, correction or concern found when last checked on Oct 21, 2026.
Disclosure of HIV status to children in resource‐limited settings: a systematic review
Rachel C Vreeman, Anna Maria Gramelspacher, Peter O Gisore and 2 more
Journal of the International AIDS Society · 2013 · Systematic review · CC BY
Abstract
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.
References 61
- 1.
Global HIV/AIDS response: epidemic update and health sector progress towards universal access—progress report 2011. 2011.
Not in our library
- 2.
2010 report on the global AIDS epidemic. The Joint United Nations Programme on HIV/AIDS (UNAIDS). Geneva. 2010.
Not in our library
- 3.
Antiretroviral therapy for HIV infection in infants and children: towards universal access. 2010.
Not in our library
- 4.
American Academy of Pediatrics Committee on Pediatrics AIDS. Pediatrics. 1999;103(1):164-6.
Not in our library10.1542/peds.103.1.164
- 5.
Progress on global access to HIV antiretroviral therapy: a report on “3 by 5” and beyond. 2006.
Not in our library
- 6.
Wiener L, Mellins CA, Marhefka S, Battles HB. Disclosure of an HIV diagnosis to children: history, current research, and future directions. J Dev Behav Pediatr. 2007;28(2):155-66.
Not in our library10.1097/01.dbp.0000267570.87564.cd
- 7.
Armistead L, Forehand R. For whom the bell tolls: parenting decisions and challenges faced by mothers who are HIV seropositive. Clin Psychol: Sci Pract. 1995;2(3):239-50.
Not in our library
- 8.
Rwemisisi J, Wolff B, Coutinho A, Grosskurth H, Whitworth J. What if they ask how I got it?’ Dilemmas of disclosing parental HIV status and testing children for HIV in Uganda. Health Policy Plan. 2008;23(1):36-42.
Not in our library10.1093/heapol/czm040
- 9.
Hogwood J, Campbell T, Butler S. I wish I could tell you but I can't: adolescents with perinatally acquired HIV and their dilemmas around self-disclosure. Clin Child Psychol Psychiatry. 2012;18(1):44-60.
Not in our library10.1177/1359104511433195
- 10.
Sherman BF, Bonanno GA, Wiener LS, Battles HB. When children tell their friends they have AIDS: possible consequences for psychological well-being and disease progression. Psychosom Med. 2000;62(2):238-47.
Not in our library10.1097/00006842-200003000-00016
- 11.
Gerson AC, Joyner M, Fosarelli P, Butz A, Wissow L, Lee S, et al. Disclosure of HIV diagnosis to children: when, where, why, and how. J Pediatr Health Care. 2001;15(4):161-7.
Not in our library10.1067/mph.2001.114835
- 12.
Lesch A, Swartz L, Kagee A, Moodley K, Kafaar Z, Myer L, et al. Paediatric HIV/AIDS disclosure: towards a developmental and process-oriented approach. AIDS Care. 2007;19(6):811-6.
Not in our library10.1080/09540120601129301
- 13.
Bachanas PJ, Kullgren KA, Schwartz KS, Lanier B, McDaniel JS, Smith J, et al. Predictors of psychological adjustment in school-age children infected with HIV. J Pediatr Psychol. 2001;26(6):343-52.
Not in our library10.1093/jpepsy/26.6.343
- 14.
Riekert KA, Wiener L, Battles HB. Prediction of psychological distress in school-age children with HIV. Child Health Care. 1999;28:201-20.
Not in our library
- 15.
Blasini I, Chantry C, Cruz C, Ortiz L, Salabarria I, Scalley N, et al. Disclosure model for pediatric patients living with HIV in Puerto Rico: design, implementation, and evaluation. J Dev Behav Pediatr. 2004;25(3):181-9.
Not in our library10.1097/00004703-200406000-00007
- 16.
Hammami N, Nostlinger C, Hoeree T, Lefevre P, Jonckheer T, Kolsteren P. Integrating adherence to highly active antiretroviral therapy into children's daily lives: a qualitative study. Pediatr. 2004;114(5):e591-7.
Not in our library10.1542/peds.2004-0085
- 17.
Ferris M, Burau K, Schweitzer AM, Mihale S, Murray N, Preda A, et al. The influence of disclosure of HIV diagnosis on time to disease progression in a cohort of Romanian children and teens. AIDS Care. 2007;19(9):1088-94.
Not in our library10.1080/09540120701367124
- 18.
Mellins CA, Brackis-Cott E, Dolezal C, Rchards A, Nicholas SW, Abrams EJ. Patterns of HIV status disclosure to perinatally HIV-infected children and subsequent mental health outcomes. Clin Child Psychol Psychiatry. 2002;7(1):101-14.
Not in our library
- 19.
Lester P, Chesney M, Cooke M, Weiss R, Whalley P, Perez B, et al. When the time comes to talk about HIV: factors associated with diagnostic disclosure and emotional distress in HIV-infected children. J Acquir Immune Defic Syndr. 2002;31(3):309-17.
Not in our library10.1097/00126334-200211010-00006
- 20.
Marhefka SL, Tepper VJ, Brown JL, Farley JJ. Caregiver psychosocial characteristics and children's adherence to antiretroviral therapy. AIDS Patient Care STDS. 2006;20(6):429-37.
Not in our library10.1089/apc.2006.20.429
- 21.
Mellins CA, Brackis-Cott E, Dolezal C, Abrams EJ. The role of psychosocial and family factors in adherence to antiretroviral treatment in human immunodeficiency virus-infected children. Pediatr Infect Dis J. 2004;23(11):1035-41.
Not in our library10.1097/01.inf.0000143646.15240.ac
- 22.
Sopena S, Evangeli M, Dodge J, Melvin D. Coping and psychological adjustment in adolescents with vertically acquired HIV. AIDS Care. 2010;22(10):1252-8.
Not in our library10.1080/09540121003668110
- 23.
Michaud PA, Suris JC, Thomas LR, Kahlert C, Rudin C, Cheseaux JJ. To say or not to say: a qualitative study on the disclosure of their condition by human immunodeficiency virus-positive adolescents. J Adolesc Health. 2009;44(4):356-62.
Not in our library10.1016/j.jadohealth.2008.08.004
- 24.
Relf MV, Bishop TL, Lachat MF, Schiavone DB, Pawlowski L, Bialko MF, et al. A qualitative analysis of partner selection, HIV serostatus disclosure, and sexual behaviors among HIV-positive urban men. AIDS Educ Prev. 2009;21(3):280-97.
Not in our library10.1521/aeap.2009.21.3.280
- 25.
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.
Not in our library10.1111/j.1440-1754.2006.00855.x
- 26.
Guideline on HIV disclosure counselling for children up to 12 years of age. 2011.
Not in our library
- 27.
Chazal E. Therapeutic education: recommendations regarding disclosure of HIV status to children under ARV in MSF projects. 2005.
Not in our library
- 28.
Disclosure process for children and adolescents living with HIV: practical guide. 2010.
Not in our library
- 29.
Bank W. Country and lending groups. 2011.
Not in our library
- 30.
Bikaako-Kajura W, Luyirika E, Purcell DW, Downing J, Kaharuza F, Mermin J, et al. Disclosure of HIV status and adherence to daily drug regimens among HIV-infected children in Uganda. AIDS Behav. 2006;10(Suppl 4):S85-93.
Not in our library10.1007/s10461-006-9141-3
- 31.
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;26(3):349-54.
Not in our library10.1097/qai.0b013e3181565df0
- 32.
Corneli A, Vaz L, Dulyx J, Omba S, Rennie S, Behets F. The role of disclosure in relation to assent to participate in HIV-related research among HIV-infected youth: a formative study. J Int AIDS Soc. 2009;12(1):17.
Not in our library10.1186/1758-2652-12-17
- 33.
Vaz L, Corneli A, Dulyx J, Rennie S, Omba S, Kitetele F, et al. The process of HIV status disclosure to HIV-positive youth in Kinshasa, Democratic Republic of the Congo. AIDS Care. 2008;20(7):842-52.
Not in our library10.1080/09540120701742276
- 34.
Biadgilign S, Deribew A, Amberbir A, Deribe K. Barriers and facilitators to antiretroviral medication adherence among HIV-infected paediatric patients in Ethiopia: a qualitative study. Sahara J. 2009;6(4):148-54.
Not in our library10.1080/17290376.2009.9724943
- 35.
Hejoaka F. Care and secrecy: being a mother of children living with HIV in Burkina Faso. Soc Sci Med. 2009;69(6):869-76.
Not in our library10.1016/j.socscimed.2009.05.041
- 36.
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.
Not in our library10.1007/s10461-010-9741-9
- 37.
Kouyoumdjian FG, Meyers T, Mtshizana S. Barriers to disclosure to children with HIV. J Trop Pediatr. 2005;51(5):285-7.
Not in our library10.1093/tropej/fmi014
- 38.
Moodley K, Myer L. Paediatric HIV disclosure in South Africa – caregivers’ perspectives on discussing HIV with infected children. S Afr Med J. 2006;96(3):201-4.
Not in our library
- 39.
Myer L, Moodley K, Hendricks F, Cotton M. Healthcare providers’ perspectives on discussing HIV status with infected children. J Trop Pediatr. 2006;52(4):293-5.
Not in our library10.1093/tropej/fml004
- 40.
Petersen I, Bhana A, Myeza N, Alicea S, John S, Holst H, et al. Psychosocial challenges and protective influences for socio-emotional coping of HIV+ adolescents in South Africa: a qualitative investigation. AIDS Care. 2010;22(8):970-8.
Not in our library10.1080/09540121003623693
Cited by papers we hold 5
- Disclosure and health-related outcomes among children living with HIV and their caregivers · 2021Not checked
- Biomedical Science’s Embodiments in Contemporary Laos. Informal Caregivers and Children Living with HIV · 2021Not checked
- Mental health challenges among adolescents living with HIV · 2017No notice
- HIV status disclosure rate and reasons for non-disclosure among infected children and adolescents in Enugu, southeast Nigeria · 2016Not checked
- Contemporary issues on the epidemiology and antiretroviral adherence of HIV‐infected adolescents in sub‐Saharan Africa: a narrative review · 2015No notice
Reads
Read by people on this page
None yet.
Checked or read by AI through naulon
None yet.
A person counts once a day per paper. We keep no cookie and no address: a reader is a hash that changes every day. Any month under five reads shows no number.
Are you an author?
Is this your paper?
Claim it to add your note and be paid when agents cite it. Free.