Page 353 - SAHCS HIVMed Journal Vol 20 No 1 2019

Page 2 of 10 Original Research

is needed on effective strategies for disclosure in resource- and their association with disclosure, we included
limited settings. 10,11 Reported full disclosure to the child in general demographic information, supplemented with
South Africa ranges between 7.9% and 9.0%. 12,13,14 questionnaires. The validated PedsQL questionnaires
TM
measured health-related quality of life (HRQoL) combining
The South African National Department of Health has caregiver proxy-report and child self-report (all children ≥ 5
committed to prioritise support and guide primary caregivers years), and the impact of paediatric chronic health conditions
and healthcare providers for disclosure. This approach on family and caregivers (family impact). 17,18,19 Socio-
intends to ensure the physical, emotional, cognitive and economic status was calculated using 21 questions from the
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social well-being of the child. A literature review including Census 2011. A higher score (%) indicated better HRQoL,
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17 studies in low-middle-income countries reported a mean overall family functioning and SES. A combination of
age for disclosure as 9.6 years (8.1–15.0), and that 20.4% of adherence monitoring measures was included. Pill count
children (3.2% – 69.2%) knew their status. National was calculated using the number of pills taken or the volume
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guidelines recommend all children from age 3 years to be
prepared for disclosure. Disclosure is the first step for for liquid formulations (dispensed minus returned) as a
children transitioning into adolescents and young adults percentage of medication prescribed. Adherence was defined
who successfully manage their own HIV care. 16 as 95% – 105% (a score > 100% could be explained by ingestion
of more pills than prescribed and lost pills). Self-reported
To support the implementation of disclosure guidelines, we adherence for the last 3 days was recorded with the validated
assessed the prevalence of disclosure of children’s HIV status paediatric AIDS clinical trials group (PACTG) adherence
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to them. In addition, to better understand disclosure, we modules. Adherence was defined as no missed dosages in
explored the association between disclosure and child, the last 3 days for self-report. Treatment success was defined
caregiver, clinical and socio-economic characteristics. by a suppressed viral load (< 50 copies/mL), and immune
response defined by CD4 count (> 5 00 cells/mm ). This
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Methods information was retrieved from medical records (6 months
before or 3 months after inclusion). Regimen specifications
This cross-sectional study is a sub-analysis of data published were retrieved from medical records and questionnaires
elsewhere, which focused on ART adherence in a population (formulation, prescription, treatment start, progress,
of active paediatric patients aged 2–14 years who were on complications, difficulties administering medication, side
treatment at TC Newman Clinic – a semi-urban ART clinic in effects).
the Western Cape, South Africa – and their caregivers. For
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this sub-analysis, we included all children aged 3–14 years
who were on treatment between September 2012 and Statistical analyses
September 2013. The age group was based on national All analyses were done using IBM SPSS statistics version 25.
disclosure guidelines. Children and their caregivers who did
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not meet these inclusion criteria were excluded from the To describe the association between possible predictor
study. For this study, we assessed prevalence of disclosure variables and disclosure, univariate logistic regression
and explored all possible characteristics associated with analyses were conducted presenting odds ratio (OR) and 95%
disclosure. Structured questionnaires were administered in confidence interval (CI) unless otherwise specified.
interviews while patients were waiting to see the doctor and Multivariate analyses are presented when confounding or
supplemented with medical record data. effect modification was identified for child’s age or caregiver
education. Fisher’s exact p-value was presented for cell size
Definition of disclosure below 5. Significance was measured at p ≤ 0.05.
Paediatric disclosure can refer to disclosure of the child’s HIV To describe the relation between multiple possible predictor
status to the child, caregivers’ HIV status to children or variables and disclosure, we present a prediction model
children’s disclosure of their own HIV status to others. This
study focused on disclosure of the child’s HIV status to the which was constructed using the forward selection procedure.
child. Based on caregiver interview, healthcare provider report This method considered all predictors of disclosure by
and medical files, we categorised disclosure status into non- adding the predictor with the lowest p-value under 0.05 to
disclosure (the child is unaware of his or her condition and its the crude model, which was repeated until no additional
effect on the body), partial disclosure (the child is aware of his predictor had a p-value < 0.05. The overall percentage correct
or her condition without naming HIV) and full disclosure (the classified cases and Hosmer and Lemeshow chi-square test
child is made aware of his or her condition which is named as with p-value for goodness of fit are presented for each model
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HIV). When referred to disclosure, we consider both partial (good fit is indicated by p-value > 0.05).
and full disclosure unless otherwise specified.
Ethical considerations
Measurements Stellenbosch University’s human research ethics committee
To provide a comprehensive analysis of predictor variables approved this study (N11/11/329). In addition, hospital
(child, caregiver, clinical and socio-economic characteristics) management approved the study in accordance with

http://www.sajhivmed.org.za 346 Open Access