By Rachel Kakraba
A Pediatrician and Senior Lecturer, Department of Child Health, University of Ghana, Dr. Adwoa Afrane, says Africa must increase investment in structured disclosure and transition-readiness programmes for children living with HIV, to ensure long-term treatment success and emotional wellbeing. Noting the importance of disclosure as foundational for transitioning into adulthood, she also urged caregivers to adopt a gradual, supportive approach when disclosing a child’s HIV status.
“How can we expect young people to successfully manage their HIV if they don’t know that they even have it? So disclosure isn’t just one conversation, it’s a journey.”
Dr. Afrane was speaking at a special session on transitioning of care and disclosure for children living with HIV, during the ongoing 23rd International Conference on AIDS and STIs in Africa, ICASA 2025.
Disclosure refers to the process by which children and adolescents are made aware of their HIV status, enabling them to share with others safely and empowering them to be engaged in, and lead, decision-making about their own health.
Dr. Afrane mentioned five stages disclosure goes through, stating that doing so before age 11 has better health outcomes.
“We start with before age 7, which is pre-disclosure, where we are building trust with a caregiver and with a child. Then comes the foundation stage about 7 to 9, where it’s a simple message, you must take medicine daily to stay healthy, very simple message.”
Adding on: “Then partial disclosure about 9 to 11, we add a bit more detail like your immune system needs some help. Then full disclosure around about 11 upwards, direct and clear. You have HIV and here’s what it means. And then finally, post-disclosure around 11 to 24 and beyond, where we have ongoing supports, counseling and peer groups.”
Dr. Afrane emphasized that disclosure to children must follow a step-by-step approach, with each stage carefully tailored to a child’s developmental readiness.
“We do it according to the child’s intellect and whether the caregiver thinks that the child is mentally ready for this, each stage building on the one before, so there’s no rushing.”
She mentioned that disclosure empowers children to take ownership of their health and promotes informed relationship decisions.
“Once a child understands that I must take this medication so that I’ll be healthy, you see that they’ll agree with you. Adolescence is already a very trying period, so we need to work with them with understanding, to know their diagnosis, their treatment, and how to manage their condition. They can protect their partners, their families, and most importantly their psychological health.”
She said that although disclosure offers significant advantages, many caregivers remain hesitant because of lingering fears, noting that increased access to technology and information means many young people are far more aware than adults assume.
“What are the biggest fears? What are caregivers saying? My child will become depressed. They will tell others, and face stigma. They’re too young to understand. These fears are real, they come from wanting to protect the child. But here’s the question, are these fears justified in this day and age with AI, you’ll be surprised at what the children are reading right now and learning by themselves.”
Making a reference to the “Sankofa study,” which developed a structured disclosure intervention, Dr. Afrane noted that disclosure, when done right, reduces depression.
“We enrolled HIV children aged 7 to 18 years who did not know their status and we followed them up. We found out that children under 11 years were actually six times more likely to be disclosed successfully than older children, so younger is actually better. What about depression? We used the Child Depression Inventory, CDI, and the Beck Depression Inventory, BDI. We found that the depression scores decreased after disclosure in children by 1.82 points, and in the caregivers by 2.65 points.”
Dr. Afrane called for stronger support systems to help children living with HIV transition smoothly into adolescence and adulthood, stressing that there is enough evidence to guide effective care.
“Every child living with HIV deserves to cross that bridge safely from childhood to adulthood. They deserve the best of us, and we have the evidence, we have the tools. What we need now is the commitment from clinicians, from policy makers, from the community to make this happen.”
Dr. Afrane said HIV is like any other chronic condition and can be well managed with medication, underscoring the need for everyone to support the care of those living with it.
