Early diagnosis and linkage of children and adolescents to care and treatment improves their quality of life and reduces the risk of transmitting HIV to others. The World Health Organization recommends full disclosure of HIV-positive status to adolescents who acquired HIV perinatally (APHIV) by age 12. However, even among adolescents (aged 10–19) already on antiretroviral therapy (ART), disclosure rates are low. Caregivers often report the child being too young and fear of disclosure worsening adolescents’ mental health as reasons for non-disclosure. Chidinma’s story highlights why early disclosure can improve the overall outcome of care for pediatric and adolescent people living with HIV.
On August 11, 2014, at the age of just one year, Miss Chidinma’s journey with the HIV project (ACHIEVE, now ASPIRE) began in Uke LGA of Nasarawa State. Her enrolment followed a period of febrile illness and slow growth, which raised concerns about her health. Despite early case diagnostics, initial efforts to manage her condition failed to maintain viral suppression. She is one of 260,000 children aged 0-14 years living with HIV in Nigeria who are unable to maintain viral suppression despite available treatment and support.
Miss Chidinma’s early years on the HIV project were marred by family turmoil. A dispute between her parents following the mother’s disclosure of her status to her father led to the end of her parent’s marriage and her care being transferred to her grandmother, who, unfortunately, lacked the education needed to ensure proper adherence to her treatment regimen despite several interventions, which led to Miss Chidinma being unsuppressed.
Last year marked a pivotal moment in Miss Chidinma’s journey as her mother got custody of her and assumed her care. She was initially counseled on adherence, which didn’t yield the needed success. However, she was counseled on disclosure, which she initially declined, but after several counseling sessions, her mother consented to disclosing and explaining her condition to her by her care providers. This singular act of transparency, in combination with her mother’s active involvement in her care, has tipped the winds in her favor. Since the disclosure of her condition, Miss Chidinma has shown remarkable progress. She has achieved viral suppression with a better understanding of her health and the importance of adherence to her treatment.
Since her diagnosis at age one, she has remained unsuppressed until this year, following her status disclosure. Miss Chidinma’s story highlights the critical role of early disclosure, family support, and education in managing HIV in children and adolescents. It underscores the importance of disclosure and the empowerment it can bring to young patients. Today, Miss Chidinma is a success story, showing that even the most challenging situations can be overcome with the right support and knowledge.
Objectives:
- To promote the benefits of early disclosure and education:
- The story highlights the importance of early and transparent disclosure of HIV-positive status to adolescents and its impact on treatment adherence and overall health outcomes.
- The story emphasizes the role of education and counselling for both caregivers and young patients in improving adherence to HIV treatment.
2. Emphasize the Role of Family Support in Treatment Success:
- The story stresses the crucial role of active family involvement and support in the care and treatment of children and adolescents living with HIV.
- It also showcases how family support, particularly from parents, can lead to significant improvements in health outcomes, including viral suppression.
The Takeaway Message:
Early and transparent disclosure of HIV status, coupled with proper education, counseling, and strong family support, is essential for improving treatment adherence and achieving better health outcomes in children and adolescents living with HIV.
