{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,13]],"date-time":"2026-11-13T23:23:22Z","timestamp":1794612202239,"version":"4.9.1"},"reference-count":30,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2021,2,6]],"date-time":"2021-02-06T00:00:00Z","timestamp":1612569600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2021,2,6]],"date-time":"2021-02-06T00:00:00Z","timestamp":1612569600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Public Health"],"published-print":{"date-parts":[[2021,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>It is estimated that 64,000 children under 15\u2009years of age are living with HIV in the Democratic Republic of Congo (DRC). Non-disclosure \u2013 in which the child is not informed about their HIV status - is likely to be associated with poor outcomes during adolescence including increased risk of poor adherence and retention, and treatment failure. Disclosing a child\u2019s HIV status to them can be a difficult process for care-givers and children, and in this qualitative study we explored child and care-giver experiences of the process of disclosing, including reasons for delay.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>A total of 22 in-depth interviews with care-givers and 11 in-depth interviews with HIV positive children whom they were caring for were conducted in one health-care facility in the capital city of Kinshasa. Care-givers were purposively sampled to include those who had disclosed to their children and those who had not. Care-givers included biological parents, grandmothers, siblings and community members and 86% of them were female. Interviews were conducted in French and Lingala. All interviews were translated and\/or transcribed into French before being manually coded. Thematic analysis was conducted. Verbal informed consent\/assent was taken from all interviewees.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>At the time of interview, the mean age of children and care-givers was 17 (15\u201319) and 47 (21\u201370) years old, respectively. Many care-givers had lost family members due to HIV and several were HIV positive themselves. Reasons for non-disclosure included fear of stigmatisation; wanting to protect the child and not having enough knowledge about HIV or the status of the child to disclose. Several children had multiple care-givers, which also delayed disclosure, as responsibility for the child was shared. In addition, some care-givers were struggling to accept their own HIV status and did not want their child to blame them for their own positive status by disclosing to them.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>Child disclosure is a complex process for care-givers, health-care workers and the children themselves. Care-givers may require additional psycho-social support to manage disclosure. Involving multiple care-givers in the care of HIV positive children could offer additional support for disclosure.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s12889-021-10327-5","type":"journal-article","created":{"date-parts":[[2021,2,8]],"date-time":"2021-02-08T21:11:23Z","timestamp":1612818683000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":10,"title":["\u201cIt\u2019s a secret between us\u201d: a qualitative study on children and care-giver experiences of HIV disclosure in Kinshasa, Democratic Republic of Congo"],"prefix":"10.1186","volume":"21","author":[{"given":"Elys\u00e9e Manziasi","family":"Sumbi","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6647-380X","authenticated-orcid":false,"given":"Emilie","family":"Venables","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rebecca","family":"Harrison","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mariana","family":"Garcia","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kleio","family":"Iakovidi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gilles","family":"van Cutsem","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jean Lambert","family":"Chalachala","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2021,2,6]]},"reference":[{"key":"10327_CR1","unstructured":"UNAIDS. HIV and AIDS estimates: Democratic Republic of Congo. 2018. https:\/\/www.unaids.org\/en\/regionscountries\/countries\/democraticrepublicofthecongo"},{"key":"10327_CR2","unstructured":"UNAIDS. Children and HIV factsheet, July 2015. http:\/\/www.unaids.org\/sites\/default\/files\/media_asset\/FactSheet_Children_en.pdf"},{"key":"10327_CR3","doi-asserted-by":"publisher","unstructured":"Mburu G, Hodgson I, Kalibala S, et al. Adolescent HIV disclosure in Zambia: barriers, facilitators and outcomes. J Int AIDS Soc. 2014;17(1):18866. Published 2014 Mar 10. doi:https:\/\/doi.org\/10.7448\/IAS.17.1.18866","DOI":"10.7448\/IAS.17.1.18866"},{"key":"10327_CR4","doi-asserted-by":"publisher","unstructured":"Toska E, Cluver LD, Hodes R, Kidia KK. Sex and secrecy: How HIV-status disclosure affects safe sex among HIV-positive adolescents. AIDS Care. 2015;27 Suppl 1(sup1):47\u201358. doi:https:\/\/doi.org\/10.1080\/09540121.2015.1071775","DOI":"10.1080\/09540121.2015.1071775"},{"key":"10327_CR5","unstructured":"World Health Organisation. Guideline on HIV Disclosure Counselling for Children up to 12. World Health Organisation, 2011. http:\/\/www.who.int\/hiv\/pub\/hiv_disclosure\/en\/"},{"key":"10327_CR6","unstructured":"M\u00e9decins Sans Fronti\u00e8res. Patient education and counselling guideline for children and adolescents living with HIV. 2017. M\u00e9decins Sans Fronti\u00e8res guidelines."},{"key":"10327_CR7","doi-asserted-by":"publisher","first-page":"42","DOI":"10.2471\/BLT.18.212993","volume":"97","author":"B McKinnon","year":"2018","unstructured":"McKinnon B, Vandermorris A. National age-of-consent laws and adolescent HIV testing in sub-Saharan Africa: a propensity-score matched study. Bull World Health Organ. 2018;97:42\u201350.","journal-title":"Bull World Health Organ"},{"key":"10327_CR8","doi-asserted-by":"crossref","unstructured":"Dusabe-Richards E, Rutakumwa R, Zalwango F, Asiimwe A, Kintu E, Ssembajja F et al. Dealing with disclosure: Perspectives from HIV-positive children and their older carers living in rural south-western Uganda, African Journal of AIDS Research, 2002; 15:4, 387\u2013395.","DOI":"10.2989\/16085906.2016.1256330"},{"issue":"1","key":"10327_CR9","doi-asserted-by":"publisher","first-page":"18","DOI":"10.1097\/QAI.0000000000001290","volume":"75","author":"KM Beima-Sofie","year":"2017","unstructured":"Beima-Sofie KM, Brandt L, Hamunime N, Shepard M, Uusiku J, John-Stewart GC, et al. Pediatric HIV disclosure intervention improves knowledge and clinical outcomes in HIV-infected children in Namibia. J Acquir Immune Defic Syndr. 2017;75(1):18\u201326.","journal-title":"J Acquir Immune Defic Syndr"},{"issue":"4","key":"10327_CR10","first-page":"101","volume":"26","author":"P Mandalazi","year":"2014","unstructured":"Mandalazi P, Bandawe C, Umar E. HIV disclosure: parental dilemma in informing HIV infected children about their HIV status in Malawi. Malawi Med J. 2014;26(4):101\u20134.","journal-title":"Malawi Med J"},{"key":"10327_CR11","doi-asserted-by":"publisher","first-page":"1028","DOI":"10.1186\/s12889-015-2372-3","volume":"15","author":"M Mweemba","year":"2015","unstructured":"Mweemba M, Musheke MM, Michelo C, Halwiindi H, Mweemba O, Zulu JM. \u201cWhen am I going to stop taking the drug?\u201d enablers, barriers and processes of disclosure of HIV status by caregivers to adolescents in a rural district in Zambia. BMC Public Health. 2015;15:1028.","journal-title":"BMC Public Health"},{"key":"10327_CR12","doi-asserted-by":"publisher","unstructured":"Madiba, S. Caregivers lack of disclosure skills delays disclosure to children with perinatal HIV in resource-limited communities: multi-center qualitative data from South Africa and Botswana. Nursing Research and Practice, 2016, 9637587. http:\/\/doi.org\/https:\/\/doi.org\/10.1155\/2016\/9637587.","DOI":"10.1155\/2016\/9637587"},{"key":"10327_CR13","unstructured":"Biressaw S, Abegaz WE, Abebe M, Taye WA, Belay M. Adherence to Antiretroviral Therapy and associated factors among HIV infected children in Ethiopia: unannounced home-based pill count versus caregivers\u2019 report. BMC Pediatrics, volume 13, Article number: 132 (2013)."},{"key":"10327_CR14","doi-asserted-by":"crossref","unstructured":"Dachew, BA, Tesfahunegn TB, Birhanu AM. Adherence to highly active antiretroviral therapy and associated factors among children at the University of Gondar Hospital and Gondar Poly Clinic, Northwest Ethiopia: a cross-sectional institutional based study. BMC Public Health Volume 14, Article number: 875 (2014).","DOI":"10.1186\/1471-2458-14-875"},{"key":"10327_CR15","doi-asserted-by":"publisher","unstructured":"Biadgilign S, Deribew A, Amberbir A, Deribe K. Adherence to highly active antiretroviral therapy and its correlates among HIV infected pediatric patients in Ethiopia. BMC Pediatr. 2008, 8: 53\u2013https:\/\/doi.org\/10.1186\/1471-2431-8-53.","DOI":"10.1186\/1471-2431-8-53"},{"issue":"Suppl 1","key":"10327_CR16","doi-asserted-by":"publisher","first-page":"S47","DOI":"10.1097\/QAD.0000000000000669","volume":"29","author":"RC Vreeman","year":"2015","unstructured":"Vreeman RC, Scanlon ML, Inui TS, McAteer CI, Fischer LJ, McHenry MS, et al. 'Why did you not tell me?': perspectives of caregivers and children on the social environment surrounding child HIV disclosure in Kenya. AIDS. 2015;29(Suppl 1):S47\u201355.","journal-title":"AIDS."},{"key":"10327_CR17","unstructured":"Desclaux A, Alfieri C. L'annonce du statut VIH de l'enfant: exp\u00e9riences des m\u00e8res et interpr\u00e9tations des soignants au Burkina Faso. SAHARA-J: Journal of Social Aspects of HIV\/AIDS, 2013; 10: supplement 1."},{"key":"10327_CR18","doi-asserted-by":"publisher","first-page":"77","DOI":"10.1191\/1478088706qp063oa","volume":"3","author":"V Braun","year":"2006","unstructured":"Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77\u2013101. https:\/\/doi.org\/10.1191\/1478088706qp063oa.","journal-title":"Qual Res Psychol"},{"key":"10327_CR19","doi-asserted-by":"crossref","unstructured":"Okawa S, Mwanza-Kabaghe S, Mwiya M, Kikuchi K, Jimba M, Kankasa, C et al Adolescents\u2019 Experiences and Their Suggestions for HIV Serostatus Disclosure in Zambia: A Mixed-Methods Study Front Public Health 2017: 5:326.","DOI":"10.3389\/fpubh.2017.00326"},{"key":"10327_CR20","unstructured":"Moodley K, Myer L, Michaels D, Cotton M. Paediatric HIV disclosure in South Africa-caregivers\u2019 perspectives on discussing HIV with infected children: scientific letter. S Afr Med J. 2006;96(3):201\u20132. 204."},{"issue":"4","key":"10327_CR21","doi-asserted-by":"publisher","first-page":"247","DOI":"10.1089\/apc.2009.0217","volume":"24","author":"LM Vaz","year":"2010","unstructured":"Vaz LM, Eng E, Maman S, Tshikandu T, Behets F. Telling children they have HIV: lessons learned from findings of a qualitative study in sub-Saharan Africa. AIDS Patient Care STDS Apr. 2010;24(4):247\u201356.","journal-title":"AIDS Patient Care STDS Apr"},{"issue":"4","key":"10327_CR22","doi-asserted-by":"publisher","first-page":"307","DOI":"10.1097\/DBP.0b013e31820f7a47","volume":"32","author":"LM Vaz","year":"2011","unstructured":"Vaz LM, Maman S, Eng E, Barbarin OA, Tshikandu T, Behets F. Patterns of disclosure of HIV status to infected children in a sub-Saharan African setting. J Dev Behav Pediatr. 2011;32(4):307\u201315.","journal-title":"J Dev Behav Pediatr"},{"key":"10327_CR23","doi-asserted-by":"publisher","unstructured":"Nichols, J., Steinmetz, A. & Paintsil, E. Impact of HIV-status disclosure on adherence to antiretroviral therapy among HIV-infected children in resource-limited settings: a systematic review. AIDS Behav 21, 59\u201369 (2017). https:\/\/doi.org\/https:\/\/doi.org\/10.1007\/s10461-016-1481-z.","DOI":"10.1007\/s10461-016-1481-z"},{"issue":"2","key":"10327_CR24","first-page":"49","volume":"5","author":"S Madiba","year":"2013","unstructured":"Madiba S. The impact of fear, secrecy, and stigma on parental disclosure of HIV status to children: a qualitative exploration with HIV positive parents attending an ART clinic in South Africa. Glob J Health Sci. 2013;5(2):49\u201361.","journal-title":"Glob J Health Sci"},{"issue":"253","key":"10327_CR25","first-page":"1","volume":"4","author":"A Alemu","year":"2013","unstructured":"Alemu A, Berhanu B, Emishaw S. Challenges of caregivers to disclose their children\u2019s HIV positive status receiving highly active antiretroviral therapy at pediatric antiretroviral therapy clinics in Bahir Dar, north West Ethiopia. J AIDS Clin Res. 2013;4(253):1\u20137.","journal-title":"J AIDS Clin Res"},{"key":"10327_CR26","doi-asserted-by":"publisher","first-page":"540","DOI":"10.1186\/s12913-018-3354-9","volume":"18","author":"FW Kalembo","year":"2018","unstructured":"Kalembo FW, Kendall GE, Ali M, et al. Healthcare workers\u2019 perspectives and practices regarding the disclosure of HIV status to children in Malawi: a cross-sectional study. BMC Health Serv Res. 2018;18:540.","journal-title":"BMC Health Serv Res"},{"key":"10327_CR27","doi-asserted-by":"crossref","unstructured":"Venables E, Casteels I, Sumbi EM, Goemaere E. \u201cEven if she\u2019s really sick at home, she will pretend that everything is fine.\u201d: Delays in seeking care and treatment for advanced HIV disease in Kinshasa, Democratic Republic of Congo. PLOS ONE, 2019.","DOI":"10.1371\/journal.pone.0211619"},{"key":"10327_CR28","first-page":"201","volume":"96","author":"K Moodley","year":"2006","unstructured":"Moodley K, Myer L, Michaels D, Cotton M. Paediatric HIV disclosure in South Africa \u2013 caregivers\u2019 perspectives on discussing HIV with infected children. S Afr Med J. 2006;96:201\u20134.","journal-title":"S Afr Med J"},{"key":"10327_CR29","doi-asserted-by":"publisher","first-page":"176","DOI":"10.1016\/S0968-8080(13)41701-9","volume":"21","author":"G Mburu","year":"2013","unstructured":"Mburu G, Hodgson I, Teltschik A, Ram M, Haamujompa C, Bajpai D, et al. Rights-based services for adolescents living with HIV: adolescent self-efficacy and implications for health systems in Zambia. Reprod Health Matters. 2013;21:176\u201385. https:\/\/doi.org\/10.1016\/S0968-8080(13)41701-9.","journal-title":"Reprod Health Matters"},{"key":"10327_CR30","doi-asserted-by":"crossref","unstructured":"Demmer C. Experiences of families caring for an HIV-infected child in KwaZulu-Natal, South Africa: an exploratory study. AIDS Care (2011) 23:873\u20139. analys.","DOI":"10.1080\/09540121.2010.542123"}],"container-title":["BMC Public Health"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1186\/s12889-021-10327-5.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/article\/10.1186\/s12889-021-10327-5\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1186\/s12889-021-10327-5.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,2,8]],"date-time":"2021-02-08T21:12:05Z","timestamp":1612818725000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmcpublichealth.biomedcentral.com\/articles\/10.1186\/s12889-021-10327-5"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,2,6]]},"references-count":30,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2021,12]]}},"alternative-id":["10327"],"URL":"https:\/\/doi.org\/10.1186\/s12889-021-10327-5","relation":{},"ISSN":["1471-2458"],"issn-type":[{"value":"1471-2458","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,2,6]]},"assertion":[{"value":"12 January 2020","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"25 January 2021","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"6 February 2021","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"Verbal informed consent was taken from all care-givers and children \u226518 before interviews began and documented by the research team. Verbal informed assent was taken from interviewees 15\u201318\u2009years old, in addition to verbal informed consent from their care-giver. This study and the consent procedures were approved by the <i>M\u00e9decins Sans Fronti\u00e8res<\/i> Ethics Review Board, Geneva, Switzerland (1724) and the Ethics Committee of the School of Public Health, University of Kinshasa, DRC (032\/2017). Children who had not been disclosed to were not eligible for the study so as to respect the decision of their care-givers about disclosing. This was verified by the counselling team. Verbal consent was considered appropriate in this context, based on prior experience conducting studies amongst this population.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Consent for publication was obtained from all study participants during the verbal informed consent process described above.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare that they have no competing interests.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"313"}}