Page 352 - SAHCS HIVMed Journal Vol 20 No 1 2019

Southern African Journal of HIV Medicine
ISSN: (Online) 2078-6751, (Print) 1608-9693
Page 1 of 10 Original Research

Disclosure of human immunodeficiency virus status to

children in South Africa: A comprehensive analysis

Authors: Background: The extent of disclosure of HIV status to children and adolescents and the context
Sabine L. van Elsland facilitating their disclosure process have received little attention.
1,2
Remco P.H. Peters 3
Cornelis Grobbelaar Objectives: To assess disclosure and provide a comprehensive analysis of characteristics
3
Patiswa Ketelo 3
Maarten O. Kok 4 associated with disclosure to children (3–14 years) receiving antiretroviral treatment in a South
Mark F. Cotton African semi-urban clinic.
5
A. Marceline van Furth 1
Methods: This cross-sectional study used structured interview administered questionnaires
Affiliations: which were supplemented with medical record data. Predictors included child, caregiver,
1 Department of Paediatric clinical and socio-economic characteristics, viral suppression, immune response, adherence,
Infectious Diseases and health-related quality of life and family functioning.
Immunology, Amsterdam
University Medical Center, Results: We included 190 children of whom 45 (23.7%) received disclosure about their HIV
Vrije Universiteit Amsterdam,
Amsterdam, the Netherlands status, of whom 28 (14.7%) were partially disclosed and 17 (8.9%) were fully disclosed. Older
age of the child and higher education of the caregiver were strongly associated with disclosure.
2 Department of Paediatrics Female caregivers, detectable viral load, syrup formulation, protease inhibitor (PI) regimens
and Child Health, Tygerberg with stavudine and didanosine, and self-reported non-adherence were strongly associated
Children’s Hospital, with non-disclosure.
Stellenbosch University,
Cape Town, South Africa Conclusion: When children do well on treatment, caregivers feel less stringent need to disclose.
Well-functioning families, higher educated caregivers and better socio-economic status
3 Anova Health Institute,
Johannesburg, South Africa enabled and promoted disclosure. Non-disclosure can indicate a sub-optimal social structure
which could negatively affect adherence and viral suppression. There is an urgent need to
4 Department of Health Care address disclosure thoughtfully and proactively in the long-term disease management. For the
Governance, Erasmus School disclosure process to be beneficial, an enabling supportive context is important, which will
of Health Policy and provide a great opportunity for future interventions.
Management, Erasmus
University Rotterdam, Keywords: Disclosure; Child; Paediatric; HIV; Quality of life; South Africa.
Rotterdam, the Nertherlands

5 FAM-CRU, Department of Introduction
Paediatrics and Child Health,
Stellenbosch University, Globally, 36.7 million people live with human immunodeficiency virus (HIV), of whom an
Tygerberg Hospital,
1
Cape Town, South Africa estimated 2.1 million are children (0–14 years). Fifteen per cent (320 000) of these children live in
South Africa. South Africa has more people receiving antiretroviral therapy (ART) than any
1,2
Corresponding author: other country in the world. In 2016, the coverage of paediatric ART was 55.0%, reaching 172 000
3
Sabine van Elsland, 2
[email protected] children. Depending on measure and definition, paediatric ART adherence ranges between 20.5%
and 89.1%. Poor adherence to medication is common, which contributes to substantial worsening
4
5
Dates: of disease, death and increased healthcare costs. Factors associated with ART adherence reported
Received: 11 July 2018 in a South African paediatric population include the impact of the condition on daily life,
Accepted: 05 Feb. 2019
Published: 22 Aug. 2019 household functioning, socio-economic status (SES), problems administering medication and
disclosure. Non-disclosure of HIV status to the child can lead to a delay in access to treatment,
4
non-adherence and consequent treatment failure. 6,7,8,9 Although studies have suggested both
positive and negative effects of disclosure for children, the lack of disclosure of HIV status to
10
children and adolescents ultimately adversely affects their well-being. 7
The availability and roll-out of treatment for adults and children highlight the need to address
disclosure. A review showed that the minority of HIV-infected children in resource-limited settings
7
know their HIV status, and identified child, caregiver, clinical and socio-economic characteristics
Read online: associated with disclosure. These predictors are not all studied within the same population.
Read online:
10
Scan this QR Delaying the initiation of the disclosure process makes it an increasingly difficult process. Research
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mobile device How to cite this article: Van Elsland SL, Peters RPH, Grobbelaar C, et al. Disclosure of human immunodeficiency virus status to children
to read online.
to read online. in South Africa: A comprehensive analysis. S Afr J HIV Med. 2019;20(1), a884. https://doi.org/10.4102/sajhivmed.v20i1.884
Copyright: © 2019. The Authors. Licensee: AOSIS. This work is licensed under the Creative Commons Attribution License.
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