Timing of and factors associated with HIV disclosure among perinatally infected children in rural Zambia

Abstract

Objective: This study was conducted to understand the process of disclosure among HIV-infected children receiving care in rural Zambia. Design: Cross-sectional and longitudinal analyses were conducted within an ongoing clinical cohort study of HIV-infected children receiving care in Macha, Zambia from 2007 to 2016. Methods: Children receiving HIV care were enrolled into the cohort study and assessed every 3 months. At each study visit, disclosure status was ascertained through questionnaire. Disclosure was categorized as none (child did not know they were chronically ill), partial (child knew they were chronically ill but not of their HIV infection status), or full (child knew they had HIV infection). Barriers to disclosure, and the timing of and factors associated with disclosure, were evaluated among children 5–15 years of age. Results: At study entry, the prevalence of full disclosure increased with age, from 2.1 to 76.2% among children 5–6 and 13–15 years of age, respectively. Reasons provided by caregivers for not disclosing the child's status included they felt the child was too young, they were afraid to, or they did not know how to tell the child. During follow-up, the median age at full disclosure was 9.0 years. Among children with full disclosure, 89.5% first had partial disclosure at a median age of 7.4 years. Factors associated with disclosure included being female, sharing responsibility for taking their own medication, and low weight-for-age z-score. Conclusion: Given the complexity of the disclosure process and potential for health benefits, interventions and protocols are needed to support caregivers through the disclosure process.

Who is Advocating for Children and Adolescents With HIV Infection?

“…One of the contributors to this lack of adherence may be that some adolescents have a poor understanding of their illness and the availability of medications to suppress the virus. Our review of this issue showed that in our own situation, the median age of disclosure of the fact that the child had HIV was at 9 years of age, though only 76% of those aged 13-15 years had been given full disclosure by the caregiver (Sutcliffe et al, 2020). We cannot expect children and adolescents to take control of and manage their chronic disease if they do not even know they have it!…”

“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

“…As children living with HIV can grow up into adolescence and adulthood if they remain adherent to treatment and for this, they need to be informed about their situation. Disclosure of a child’s HIV status is of clinical importance in children as it will help them comply with the HIV treatment regimen [ 6 , 7 ]. That is why the World Health Organization (WHO) recommends that children should be informed of their HIV status before the age of 12 years [ 8 ].…”

“…Several approaches to the disclosure of HIV status have been described [ 6 ]. Each of these places particular emphasis on the role of parents and health care workers (HCWs) in disclosing to children [ 17 , 18 , 19 ] without exploring the potential role that other individuals (peers,…) might play in the process of disclosure [ 20 , 21 ].…”

Content validation to support the monitoring of disclosure of HIV diagnosis in childhood

“…A cohort study in rural Zambia indicated that 89.5% of children were first reported to have partial disclosure at a median age of 7.4 years. Reasons for non-disclosure included caregivers considering the child to be too young, feeling scared or not knowing how to tell the child (10) . Furthermore, there is no consensus on who will disclose, whether it will be the parents or the professionals, which implies low disclosure rates in countries such as those in sub-Saharan Africa (5) .…”

“…Therefore, evidence-based interventions and protocols are needed to support caregivers (8,10) . Additionally, there is a lack of national and international evidence about the conduct of the disclosure follow-up.…”