The Consequences of Delaying Telling Children with Perinatal HIV About Their Diagnosis as Perceived by Healthcare Workers in the Eastern Cape; A Qualitative Study.

Sphiwe Madiba,Cynthia Diko

doi:10.3390/children7120289

Sphiwe Madiba, Cynthia Diko

Open Access

https://doi.org/10.3390/children7120289

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Journal: Children	Publication Date: Dec 11, 2020
Citations: 11	License type: CC BY 4.0

Affiliation: Sefako Makgatho Health Sciences University

Abstract

Although the benefits of disclosure are considerable, informing children with perinatal HIV of their own HIV status is often delayed to late adolescence. This study examined the social and contextual challenges that influence delaying disclosure to children and assessed the outcomes of delayed disclosure on the psychosocial health of children as perceived by the healthcare workers (HCWs) providing care to these children. Data were collected from HCWs via focus group discussions. Nurses, lay counsellors, social workers, and dieticians were selected from facilities in a rural South African health district. Thematic analysis was performed. The caregivers’ social context was the main barrier against informing children timely about their HIV diagnosis. The extent of the internalised HIV stigma influenced the delay in disclosing to the children. Delaying disclosure contributes to children’s refusing to take their medication, leads to the accidental disclosure of HIV, give rise to anger and resentment towards the caregiver, increase the risk of secondary transmitting of HIV, and poor health outcomes. It is essential to train HCWs to support caregivers and children through the disclosure process to ensure that caregivers realise the benefits of disclosure. Strategies to encourage caregivers to disclose early should be sensitive to their concerns about the negative impacts of disclosure.

Highlights

In many settings in sub-Saharan Africa (SSA), significant numbers of children and adolescents with perinatal human immunodeficiency virus (HIV) who regularly attend clinics and take antiretroviral treatment (ART) are not fully informed about their HIV diagnosis [1,2,3]
The study findings suggest that delaying disclosure to older children and adolescents contributes to children defaulting or refusing to take their medication and poor self-care behaviours
Knowing their own HIV serostatus is important for children and adolescents, making it possible for them to attain independence in caring for themselves and motivating them to take their medications consistently

Summary

Introduction

In many settings in sub-Saharan Africa (SSA), significant numbers of children and adolescents with perinatal human immunodeficiency virus (HIV) who regularly attend clinics and take antiretroviral treatment (ART) are not fully informed about their HIV diagnosis [1,2,3]. Disclosure of HIV status becomes crucial and beneficial as children approach puberty and need to transition to adult care. HIV disclosure is positively associated with safer sex behaviours in adolescents and increased access to social support [4,5,6,7,8,9,10]. Being aware of their own HIV status as they transition into adolescence is crucial for young people living with HIV in order that they may assume some responsibility for managing their own treatment [11]. In SSA, disclosure to children with perinatal HIV (PHIV) ranges from

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