Perspectives of Adolescents and Carers Living with HIV/AIDS on Barriers to Disclosure of HIV Status related to Treatment Adherence in Millennials


  • Rio Ady Erwansyah 1Fakultas Keperwatan, Airlangga University, Surabaya, Indonesia
  • Nursalam
  • Ninuk Dian K



Perspektif; Anak; HIV; AIDS×


Disclosure of HIV status in children is part of comprehensive HIV management. Children must be informed about their illness diagnosis and explained if they must undergo long-term treatment. However, in the process, many obstacles are often encountered, such as stigma in the community that makes children reluctant to disclose their child's HIV status and the lack of experts who support the process. The stigma in the community also hinders adolescents in the process of adherence to treatment because of the fear related to discrimination and stigmatization that will be obtained. This systematic review was conducted through Scopus, Science Direct, and SAGE. The selection of inclusion criteria articles, articles published in the last five years and published in English, discussed the perspective of covering children's HIV status. Articles published not in English and articles with unclear literature except in this study. The PRISMA flowchart and JBI assessment checklist assessed bias and article quality. Twenty relevant articles will be reviewed. The results found that in caregiving and health workers should share responsibility and roles in diagnosis to support adolescents living on treatment and acceptance of their HIV status, empowering them to take responsibility for their health.


1. Madiba S. Caregivers Lack of Disclosure Skills Delays Disclosure to Children with Perinatal HIV in Resource-Limited Communities: Multicenter Qualitative Data from South Africa and Botswana. Nursing Research and Practice. 2016;2016:1-7. doi:10.1155/2016/9637587
2. Sariah A, Rugemalila J, Somba M, et al. “experiences with disclosure of HIV-positive status to the infected child”: Perspectives of healthcare providers in Dar es Salaam, Tanzania. BMC Public Health. 2016;16(1):1-10. doi:10.1186/s12889-016-3749-7
3. WHO. Guideline on HIV disclosure counselling for children up to 12 years of age. Published online 2011:1-46.
4. Federal Ministry of Health Nigeria. National AIDS and STI’s Control Programme, Federal Ministry of Health: 2016 National Guidelines for HIV Prevention Treatment and Care.; 2016.
5. Ady Erwansyah R, Efendy F. Stigmatization of Household Mother with HIV/AIDS in Tulungagung District, East Java, Indonesia. International Journal of Nursing and Health Services (IJNHS). 2020;3(1):128-132. doi:10.35654/ijnhs.v3i1.203
6. Gyamfi E, Okyere P, Appiah-Brempong E, Adjei RO, Mensah KA. Benefits of Disclosure of HIV Status to Infected Children and Adolescents: Perceptions of Caregivers and Health Care Providers. Journal of the Association of Nurses in AIDS Care. 2015;26(6):770-780. doi:10.1016/j.jana.2015.08.001
7. Lowenthal ED, Jibril HB, Sechele ML, Mathuba K, Tshume O, Anabwani GM. Disclosure of HIV status to HIV-infected children in a large African treatment center: Lessons learned in Botswana. Children and Youth Services Review. 2014;45(C):143-149. doi:10.1016/j.childyouth.2014.03.031
8. Juanamasta IG, Nursalam N, Efendi F, Erwansyah RA. Stigma of People Living with HIV/AIDS. NurseLine Journal. 2020;4(2):154-162.
9. Lorenz R, Grant E, Muyindike W, et al. Caregivers’ attitudes towards HIV testing and disclosure of HIV status to at-risk children in rural Uganda. PLoS ONE. 2016;11(2):1-22. doi:10.1371/journal.pone.0148950
10. Appiah SCY, Ivanova O, Hoelscher M, Kroidl I, Dapaah JM. Disclosure of HIV/AIDS status to infected children in Ghana – A north-south comparison of barriers and enablers. Children and Youth Services Review. 2021;122:105753. doi:10.1016/j.childyouth.2020.105753
11. Abraha A, Myléus A, Byass P, Kahsay A, Kinsman J. The effects of maternal and child HIV infection on health equity in Tigray Region, Ethiopia, and the implications for the health system: a case–control study. AIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV. 2019;31(10):1271-1281. doi:10.1080/09540121.2019.1601670
12. Mugisha J, Mugisha J, Kinyanda E, et al. Health care professionals’ perspectives on barriers to treatment seeking for formal health services among orphan children and adolescents with HIV/AIDS and mental distress in a rural district in central, Uganda. Child and Adolescent Psychiatry and Mental Health. 2020;14(1):1-10. doi:10.1186/s13034-020-00332-8
13. Atanuriba GA, Apiribu F, Boamah Mensah AB, et al. Caregivers’ Experiences with Caring for a Child Living with HIV/AIDS: A Qualitative Study in Northern Ghana. Global Pediatric Health. 2021;8. doi:10.1177/2333794X211003622
14. Holden S, Gordon-Dseagu VLZ, Gordon G, et al. Building resilience to adverse childhood experiences: An assessment of the effects of the Stepping Stones with Children training programme on Tanzanian children affected by HIV and their caregivers. Health Education Journal. 2019;78(2):124-137. doi:10.1177/0017896918787217
15. Tanner AE, Philbin MM, Ma A, et al. Adolescent to Adult HIV Health Care Transition From the Perspective of Adult Providers in the United States. Journal of Adolescent Health. 2017;61(4):434-439. doi:10.1016/j.jadohealth.2017.05.011
16. Arage G, Assefa M, Worku T, Semahegn A. Survival rate of HIV-infected children after initiation of the antiretroviral therapy and its predictors in Ethiopia: A facility-based retrospective cohort. SAGE Open Medicine. 2019;7:205031211983895. doi:10.1177/2050312119838957
17. Madiba S, Diko C. Telling Children with Perinatal HIV About Their HIV Serostatus: Healthcare Workers’ Practices and Barriers to Disclosing in a South African Rural Health District. Journal of Primary Care and Community Health. 2021;12. doi:10.1177/2150132720984757
18. McHenry MS, Nyandiko WM, Scanlon ML, et al. HIV Stigma: Perspectives from Kenyan Child Caregivers and Adolescents Living with HIV. Journal of the International Association of Providers of AIDS Care. 2017;16(3):215-225. doi:10.1177/2325957416668995
19. Kalembo FW, Kendall GE, Ali M, Chimwaza AF. Healthcare workers’ perspectives and practices regarding the disclosure of HIV status to children in Malawi: A cross-sectional study. BMC Health Services Research. 2018;18(1):1-10. doi:10.1186/s12913-018-3354-9
20. Y?lmaz S, Calikoglu EO, Kosan Z. for an Uncommon Neurosurgical Emergency in a Developing Country. Nigerian Journal of Clinical Practice. 2019;22:1070-1077. doi:10.4103/njcp.njcp
21. Zhou E, Qiao Z, Cheng Y, et al. Factors associated with depression among HIV/AIDS children in China. International Journal of Mental Health Systems. 2019;13(1):1-9. doi:10.1186/s13033-019-0263-1
22. Gibbs C, Melvin D, Foster C, Evangeli M. ‘I don’t even know how to start that kind of conversation’: HIV communication between mothers and adolescents with perinatally acquired HIV. Journal of Health Psychology. 2020;25(10-11):1341-1354. doi:10.1177/1359105318755544
23. Heerink F, Krumeich A, Feron F, Goga A. ‘We are the advocates for the babies’ - understanding interactions between patients and health care providers during the prevention of mother-to-child transmission of HIV in South Africa: a qualitative study. Global Health Action. 2019;12(1). doi:10.1080/16549716.2019.1630100
24. Nabukeera S, Kagaayi J, Makumbi FE, Mugerwa H, Matovu JKB. Factors associated with virological non-suppression among HIV-positive children receiving antiretroviral therapy at the Joint Clinical Research Centre in Lubowa, Kampala Uganda. PLoS ONE. 2021;16(1 January):1-12. doi:10.1371/journal.pone.0246140
25. Mohamed Y, Kupul M, Gare J, et al. Feasibility and acceptability of implementing early infant diagnosis of HIV in Papua New Guinea at the point of care: A qualitative exploration of health worker and key informant perspectives. BMJ Open. 2020;10(11):1-10. doi:10.1136/bmjopen-2020-043679
26. Munambah N, Ramugondo EL, Cordier R. Play of children living with HIV/AIDS in a low-resourced setting: Perspectives of caregivers. British Journal of Occupational Therapy. Published online 2021. doi:10.1177/03080226211026556
27. Musakwa N, Feeley A, Magwete M, et al. Dietary intake among paediatric HIV-positive patients initiating antiretroviral therapy in Johannesburg, South Africa. Vulnerable Children and Youth Studies. 2020;15(2):155-170. doi:10.1080/17450128.2019.1668581
28. Jerene D, Tiberg I, Hallström I. How Can Clinical Outcomes among Adolescents Living with HIV in Ethiopia be Improved? Healthcare Professionals’ Perspectives. Comprehensive Child and Adolescent Nursing. 2021;00(00):1-10. doi:10.1080/24694193.2021.1914774
29. Mutabazi JC, Gray C, Muhwava L, et al. Integrating the prevention of mother-to-child transmission of HIV into primary healthcare services after AIDS denialism in South Africa: perspectives of experts and health care workers - a qualitative study. BMC health services research. 2020;20(1):582. doi:10.1186/s12913-020-05381-5




How to Cite

Rio Ady Erwansyah, Nursalam, & Ninuk Dian K. (2022). Perspectives of Adolescents and Carers Living with HIV/AIDS on Barriers to Disclosure of HIV Status related to Treatment Adherence in Millennials. Jurnal Kedokteran, 11(2), 897–908.



Literature Review