Perspectives and experiences of caregivers in disclosing HIV serostatus to school-age children in Mara region, Tanzania

Abstract

ABSTRACT Background: Human Immunodeficiency Virus (HIV) continues to be a significant public health, especially in sub-Saharan Africa, where approximately 2.9 million children were living with HIV in 2020. Antiretroviral therapy (ART) is the most effective way of managing HIV, including in children. Caregivers are responsible for administering medications, managing side effects, and ensuring adherence to treatment schedules. However, caregivers face various challenges, including disclosing HIV seropositive status to their children. Objective: This study aimed to explore the perspectives and experiences of caregivers of school-age children attending ART clinics in the Mara Region in Tanzania regarding disclosing HIV seropositive status to children. Methods: This was a descriptive phenomenological study exploring how caregivers of HIV-positive children experience the process of disclosing their child's status. The study used purposive sampling to select caregivers of school-aged children (ages 6-14) attending Shirati Mennonite Church of Tanzania Hospital's care and treatment clinics in Rorya District, Mara Region, Tanzania. They used an in-depth interview guide to gather data from these participants. Data collected from the in-depth interviews were transcribed verbatim and analyzed thematically to identify key themes related to the perceptions and experiences of caregivers in revealing HIV seropositive status to their children. Findings: The findings revealed that the age at which caregivers choose to disclose serostatus to their children varies depending on their cognitive ability and self-awareness. The disclosure process was profoundly personal, and caregivers underwent emotional and spiritual preparations. Children's reactions post-disclosure were generally positive, though some experienced shock and distress. The decision to disclose was driven by the need to ensure the child's awareness of their HIV seropositive status and adhering to treatment. Some caregivers also felt that disclosing the status would help the children protect themselves and others as they approached adolescence. Reported challenges in the disclosure process included children's emotional distress and limited support from healthcare providers. Conclusion: Caregivers' motives for disclosing HIV seropositive status to their children are driven by a balance of perceived risks and benefits. Caregivers' experiences in revealing a child's HIV seropositive status are highly individualized, and they faced challenges in disclosing HIV seropositive status to children, emotional distress and limited support from healthcare providers. This individual uniqueness underscores the need for healthcare workers to provide tailored support to assist caregivers in navigating the complex emotional and practical aspects of HIV seropositive status disclosure to their children to leverage perceived enablers.