“It’s a secret between us”: a qualitative study on children and care-giver experiences of HIV disclosure in Kinshasa, Democratic Republic of Congo

Abstract

Background It is estimated that 64,000 children under 15 years of age are living with HIV in the Democratic Republic of Congo (DRC). Non-disclosure – 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’s 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. Methods 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. Results At the time of interview, the mean age of children and care-givers was 17 (15–19) and 47 (21–70) 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. Conclusions 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.

Antiretroviral therapy non-adherence among children living with HIV in Dire Dawa, Eastern Ethiopia: a case-control study

“…A study in Ghana on children's (6-15 years old) adherence to ART reported that disclosure of HIV status was not only associated with improved adherence but also with psychological well-being [23]. With the disclosure of HIV status, children get cleared with many of their previously unanswered questions concerning the reasons why they were taking medications, engage in peer support groups and ask questions for social support, and improve relationships with caregivers [24,25]. Evidence from a systematic review by Ammon et al also reported that children who received disclosure of their HIV status earlier, before age 12, had good adherence to ART [14].…”

High Rates of Viral Suppression and Care Retention Among Youth Born Outside of the United States with Perinatally Acquired HIV

“…This in turn could delay disclosure due to familial stigma and guilt and thereby affect adherence. 28–30…”

“The Peer Educator Is the Game-Changer of My Life”: Perceptions of Adolescents Living with HIV in DR Congo on Involving Peer Educators in the Process of HIV Disclosure

“…Studies in sub-Saharan Africa (SSA) have shown that the proportion of adolescents to whom HIV disclosure has been done range from as low as 9% (South Africa) to 72% (Ouganda) [ 11 , 12 , 13 ]. This is a result of multiple factors such as parents/caregivers fear of the child disclosing his/her status to others, a lack of knowledge on how the disclosure should be made, considering that the children are young and cannot withstand the psychological impact of diagnosis [ 11 , 14 , 15 ]. It is a real challenge if we want to end the AIDS epidemic by 2030 by achieving 95% diagnosed among all PLHIV, 95% on antiretroviral therapy (ART) among diagnosed, and 95% virally suppressed among treated [ 16 ].…”