The extent of disclosure of HIV status to children and adolescents and the context facilitating their disclosure process have received little attention.
To assess disclosure and provide a comprehensive analysis of characteristics associated with disclosure to children (3–14 years) receiving antiretroviral treatment in a South African semi-urban clinic.
This cross-sectional study used structured interview administered questionnaires which were supplemented with medical record data. Predictors included child, caregiver, clinical and socio-economic characteristics, viral suppression, immune response, adherence, health-related quality of life and family functioning.
We included 190 children of whom 45 (23.7%) received disclosure about their HIV 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. Female caregivers, detectable viral load, syrup formulation, protease inhibitor (PI) regimens with stavudine and didanosine, and self-reported non-adherence were strongly associated with non-disclosure.
When children do well on treatment, caregivers feel less stringent need to disclose. Well-functioning families, higher educated caregivers and better socio-economic status 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 address disclosure thoughtfully and proactively in the long-term disease management. For the disclosure process to be beneficial, an enabling supportive context is important, which will provide a great opportunity for future interventions.
Globally, 36.7 million people live with human immunodeficiency virus (HIV), of whom an estimated 2.1 million are children (0–14 years).
The availability and roll-out of treatment for adults and children highlight the need to address disclosure.
The South African National Department of Health has committed to prioritise support and guide primary caregivers and healthcare providers for disclosure. This approach intends to ensure the physical, emotional, cognitive and social well-being of the child.
To support the implementation of disclosure guidelines, we assessed the prevalence of disclosure of children’s HIV status to them. In addition, to better understand disclosure, we explored the association between disclosure and child, caregiver, clinical and socio-economic characteristics.
This cross-sectional study is a sub-analysis of data published elsewhere, which focused on ART adherence in a population of active paediatric patients aged 2–14 years who were on treatment at TC Newman Clinic – a semi-urban ART clinic in the Western Cape, South Africa – and their caregivers.
Paediatric disclosure can refer to disclosure of the child’s HIV status to the child, caregivers’ HIV status to children or children’s disclosure of their own HIV status to others. This study focused on disclosure of the child’s HIV status to the child. Based on caregiver interview, healthcare provider report and medical files, we categorised disclosure status into non-disclosure (the child is unaware of his or her condition and its effect on the body), partial disclosure (the child is aware of his or her condition without naming HIV) and full disclosure (the child is made aware of his or her condition which is named as HIV).
To provide a comprehensive analysis of predictor variables (child, caregiver, clinical and socio-economic characteristics) and their association with disclosure, we included general demographic information, supplemented with questionnaires. The validated PedsQLTM questionnaires measured health-related quality of life (HRQoL) combining caregiver proxy-report and child self-report (all children ≥ 5 years), and the impact of paediatric chronic health conditions on family and caregivers (family impact).
All analyses were done using IBM SPSS statistics version 25. To describe the association between possible predictor variables and disclosure, univariate logistic regression analyses were conducted presenting odds ratio (OR) and 95% confidence interval (CI) unless otherwise specified. Multivariate analyses are presented when confounding or effect modification was identified for child’s age or caregiver education. Fisher’s exact
To describe the relation between multiple possible predictor variables and disclosure, we present a prediction model which was constructed using the forward selection procedure. This method considered all predictors of disclosure by adding the predictor with the lowest
Stellenbosch University’s human research ethics committee approved this study (N11/11/329). In addition, hospital management approved the study in accordance with Provincial Research Policy (40/2009). Written informed consent was obtained from all caregivers and assent from children older than 7 with normal cognitive functioning.
At the start of the study, 238 active paediatric patients on ART aged 2–14 years attended the clinic. One caregiver refused to participate and 42 patients were missed because caregivers did not visit on the appointment date. With 5 children younger than 3 years of age, this sub-analysis included 190 children. For five households with two children in the study, only the child enrolled first was considered for SES analyses (
Most of the children (145 of 190, 76.3%) had not received disclosure about their HIV status, 28 children (14.7%) had received partial disclosure and 17 children (8.9%) had full disclosure. None of the children in early childhood (3–5 years) received disclosure (
Child characteristics associated with disclosure were age and HRQoL. The children were aged 3.2–12.9 years, the majority (74.2%) were of school going age (6 years and older) and 27.4% were young adolescents (10–14 years). Older children (young adolescents) were significantly more likely to be disclosed compared to younger children (under 10 years) (odds ratio [OR] 21.81; 9.41–50.52). Mean self-reported HRQoL index was 91.5%. Children who rated their HRQoL highly were less likely to have received disclosure compared to children who had low HRQoL (OR 0.29; 0.09–0.91). This association attenuated in multivariate analyses (OR 0.58; 0.15–2.30). We did not find significant associations between disclosure and sex of the child, overall HRQoL or school functioning (caregiver proxy-report or self-report) (
Associations between disclosure and child characteristics – Univariate analyses.
Child characteristics | Total |
Disclosure |
||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|
Mean | % | Non-disclosed (mean) | Non-disclosed ( |
Non-disclosed (%) | Full/partial (mean) | Full/partial ( |
Full/partial (%) | Odds Ratio | 95% CI | |||
Mean (s.d.) | 8.1 (2.6) | - | - | 7.3 (2.3) | - | - | 10.7 (1.4) | - | - | - | - | - |
Median (IQR) | 8.5 (5.8-10.2) | - | - | 7.3 (5.2-9.0) | - | - | 10.8 (9.9-11.8) | - | - | - | - | - |
3–5 years | - | 49 | 25.8 | - | 49 | 33.8 | - | 0 | 0 | - | - | - |
6–9 years | - | 89 | 46.8 | - | 78 | 53.8 | - | 11 | 24.4 | - | - | 0.008 |
10–14 years | - | 52 | 27.4 | - | 18 | 12.4 | - | 34 | 75.6 | - | - | 0.000 |
Young child (< 10 years) | - | 138 | 72.6 | - | 127 | 87.6 | - | 11 | 24.4 | - | - | - |
Early adolescence (≥ 10 years) | - | 52 | 27.4 | - | 18 | 12.4 | - | 34 | 75.6 | 21.81 | 9.41–50.52 |
0.000 |
Female | - | 109 | 57.4 | - | 84 | 57.9 | - | 25 | 55.6 | - | - | - |
Male | - | 81 | 42.6 | - | 61 | 42.1 | - | 20 | 44.4 | 1.10 | 0.56-2.16 | 0.778 |
Mean (s.d.) | 90.5 (10.4) | - | - | 90.1 (11.3) | - | - | 92.0 (6.4) | - | - | - | - | - |
12.8–88.0 | - | 47 | 25.1 | - | 35 | 24.6 | - | 12 | 26.7 | - | - | - |
88.1–93.0 | - | 46 | 24.6 | - | 39 | 27.5 | - | 7 | 15.6 | 0.52 | 0.19–1.48 | 0.222 |
93.1–96.6 | - | 45 | 24.1 | - | 30 | 21.1 | - | 15 | 33.3 | 1.46 | 0.59–3.60 | 0.412 |
96.7–100 | - | 49 | 26.2 | - | 38 | 26.8 | - | 11 | 24.4 | 0.84 | 0.33–2.16 | 0.724 |
Mean (s.d.) | 91.5 (11.4) | - | - | 90.0 (9.1) | - | - | 91.9 (12.0) | - | - | - | - | - |
6.5–88.0 | - | 36 | 23.2 | - | 23 | 19.5 | - | 13 | 35.1 | - | - | - |
88.1–94.5 | - | 42 | 27.1 | - | 33 | 28.0 | - | 9 | 24.3 | 0.48 | 0.18–1.32 | 0.154 |
94.6–99.9 | - | 41 | 26.5 | - | 31 | 26.3 | - | 10 | 27 | 0.57 | 0.21–1.53 | 0.265 |
100 | - | 36 | 23.2 | - | 31 | 26.3 | - | 5 | 13.5 | 0.29 | 0.09–0.91 |
0.035 |
Mean (s.d.) | 82.8 (18.2) | - | - | 83.6 (18.1) | - | - | 80.5 (18.4) | - | - | - | - | - |
5.0–74.9 | - | 34 | 23.1 | - | 25 | 22.7 | - | 9 | 24.3 | - | - | - |
75.0–89.9 | - | 41 | 27.9 | - | 29 | 26.4 | - | 12 | 32.4 | 1.15 | 0.42–3.18 | 0.778 |
90.0–99.9 | - | 31 | 21.1 | - | 23 | 20.9 | - | 8 | 21.6 | 0.97 | 0.32–2.93 | 0.951 |
100 | - | 41 | 27.9 | - | 33 | 30.0 | - | 8 | 21.6 | 0.67 | 0.23–1.99 | 0.475 |
Mean (s.d.) | 81.6 (19.3) | - | - | 82.3 (18.9) | - | - | 79.3 (20.5) | - | - | - | - | - |
5.0–74.9 | - | 36 | 20.9 | - | 28 | 20.9 | - | 8 | 21.1 | - | - | - |
75.0–89.9 | - | 56 | 32.6 | - | 39 | 29.1 | - | 17 | 44.7 | 1.53 | 0.58–4.03 | 0.394 |
90.0–99.9 | - | 40 | 23.3 | - | 35 | 26.1 | - | 5 | 13.2 | 0.5 | 0.15–1.70 | 0.267 |
100 | - | 40 | 23.3 | - | 32 | 23.9 | - | 8 | 21.1 | 0.88 | 0.29–2.64 | 0.813 |
CI, confidence interval; s.d., standard deviation; HRQoL, health-related quality of life; IQR, interquartile range.
, Significant (
,
Caregiver characteristics associated with disclosure were sex, education and HRQoL. The minority of caregivers were males (7.9%). Young children (under 10 years) of male caregivers were more likely to have received disclosure compared to young children of female caregivers (OR 5.58; 1.24–25.19). Most caregivers had not completed high school education (87.3%). Caregivers who completed their high school education were more likely to disclose the child’s HIV status to the child (multivariate OR 4.04; 1.26–12.91) than those who had not completed their high school education. Caregivers rated their own quality of life index at 90.5% (mean). Caregivers who rated their quality of life higher were less likely to disclose the child’s HIV status to the child (OR 0.31; 0.10–0.95). This association attenuated in multivariate analyses (OR 0.64; 0.16–2.54). We did not find significant associations between disclosure and caregiver’s age, relationship with the child, cultural background, caregiver’s marital status or worry as indicators of caregiver functioning (extent of concern about chil d’s treatment, side effects, reaction of others, child’s condition or effects of illness on family and future) (
Associations between disclosure and caregiver characteristics – Univariate analyses.
Caregiver characteristics | Total |
Disclosure |
||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|
Mean | % | Non-disclosed (mean) | Non-disclosed ( |
Non-disclosed (%) | Full/partial (mean) | Full/partial ( |
Full/partial (%) | Odds Ratio | 95% CI | |||
Mean (s.d.) | 39.2 (11.2) | - | - | 38.6 (11.2) | - | - | 40.8 (11.0) | - | - | - | - | - |
Median (IQR) | 37.3 (31.7-44.1) | - | - | 36.1 (31.1-44.0) | - | - | 39.0 (34.5-47.2) | - | - | - | - | - |
16.0-31.6 | - | 47 | 24.7 | - | 39 | 26.9 | - | 8 | 17.8 | - | - | - |
31.7-37.2 | - | 47 | 24.7 | - | 39 | 26.9 | - | 8 | 17.8 | 1.00 | 0.34-2.93 | 1.000 |
37.3-44.5 | - | 49 | 25.8 | - | 32 | 22.1 | - | 17 | 37.8 | 2.59 | 0.99-6.78 | 0.052 |
44.6-74.5 | - | 47 | 25.8 | - | 35 | 24.1 | - | 12 | 26.7 | 1.67 | 0.61-4.56 | 0.316 |
Female | - | 175 | 92.1 | - | 134 |
93.7 |
- | 41 |
72.7 |
- | - | - |
Male | - | 15 | 7.9 | - | 11 |
6.3 |
- | 4 |
27.3 |
5.58 |
1.24-25.19 |
0.025 |
Parent | - | 132 | 69.5 | - | 103 | 71.0 | - | 29 | 64.4 | - | - | - |
Other | - | 58 | 30.5 | - | 42 | 29.0 | - | 16 | 35.6 | 1.35 | 0.67-2.75 | 0.403 |
Afrikaans | - | 56 | 29.5 | - | 43 | 29.7 | - | 13 | 28.9 | - | - | - |
Xhosa | - | 127 | 66.8 | - | 98 | 67.6 | - | 29 | 64.4 | 0.98 | 0.46-2.06 | 0.955 |
Other | - | 7 | 3.7 | - | 4 | 2.8 | - | 3 | 6.7 | 2.48 | 0.49-12.54 | 0.272 |
Not Married | - | 135 | 71.1 | - | 108 | 74.5 | - | 27 | 60.0 | - | - | - |
Married | - | 55 | 28.9 | - | 37 | 25.5 | - | 18 | 40.0 | 1.95 | 0.96-3.93 | 0.064 |
Primary school | - | 165 | 87.3 | - | 131 | 91.0 | - | 34 | 75.6 | - | - | - |
High school | - | 24 | 12.7 | - | 13 | 9.0 | - | 11 | 24.4 | 3.26 | 1.34-7.92 |
0.009 |
Mean (s.d.) | 90.5 (12.2) | - | - | 90.5 (12.3) | - | - | 90.6 (12.3) | - | - | - | - | - |
36.3-84.3 | - | 47 | 26.0 | - | 33 | 23.9 | - | 14 | 32.6 | - | - | - |
87.4-94.6 | - | 43 | 23.8 | - | 38 | 27.5 | - | 5 | 11.6 | 0.31 | 0.10-0.95 |
0.041 |
94.7-99.9 | - | 47 | 26.0 | - | 35 | 25.4 | - | 12 | 27.9 | 0.81 | 0.33-2.00 | 0.645 |
100 | - | 44 | 24.3 | - | 32 | 23.2 | - | 12 | 27.9 | 0.88 | 0.36-2.12 | 0.791 |
Mean (s.d.) | 89.2 (11.4) | - | - | 89.6 (10.9) | - | - | 88.0 (13.0) | - | - | - | - | - |
50.0-84.9 | - | 45 | 23.9 | - | 33 | 22.9 | - | 12 | 27.3 | - | - | - |
85.0-94.9 | - | 58 | 30.9 | - | 47 | 32.6 | - | 11 | 25.0 | 0.64 | 0.25-1.63 | 0.354 |
95.0-99.9 | - | 23 | 12.2 | - | 17 | 11.8 | - | 6 | 13.6 | 0.98 | 0.31-3.04 | 0.959 |
100 | - | 62 | 33.0 | - | 47 | 32.6 | - | 15 | 34.1 | 0.88 | 0.36-2.12 | 0.771 |
CI, confidence interval; s.d., standard deviation; HRQoL, health-related quality of life; FI, Family impact; IQR, interquartile range.
, Significant (
, presented for children under 10 years.
Clinical characteristics associated with disclosure included suppressed viral load, formulation (tablet/syrup), non-nucleoside reverse transcriptase inhibitors (NNRTI) in regimen, protease inhibitor (PI) in regimen with stavudine and didanosine, regimens with efavirenz, longer duration on treatment, start of treatment in the first year of life, experiencing difficulties administering treatment and poor adherence to treatment. One-third (32.8%) of children had a detectable viral load and had less likely received disclosure compared to those with a suppressed viral load (multivariate OR 0.21; 0.05–0.84). Most children were on a regimen with a combination of three medicines (86.3%), consisting of tablets only (62.2%). Children whose regimen included syrups (syrups only or combined with tablets) had less likely received disclosure compared to children who were on tablets only (multivariate OR 0.28; 0.08–0.92).
Children on a regimen including an NNRTI (35.3%) more likely received disclosure compared to children on a regimen with no NNRTIs (OR 2.71; 1.37–5.38). This association attenuated in multivariate analyses (OR 1.84; 0.78–4.31). Children on a PI-based regimen with stavudine and didanosine (16.8%) less likely received disclosure compared to children who were on a non-PI-based regimen (multivariate OR 0.19; 0.03–1.00). Children on a regimen including efavirenz more likely received disclosure than those with no efavirenz (OR 2.90; 1.46–5.77). This association attenuated in multivariate analyses (OR 1.91; 0.81–4.48). Children on a regimen of lopinavir/ritonavir syrup (79.5%) less likely received disclosure (OR 0.14; 0.03–0.59). This association attenuated in multivariate analyses (OR 0.54; 0.11–2.62). Children were on treatment for 1 month to 9.8 years (mean 5.2 years). Children with a longer treatment duration more likely received disclosure compared to those more recently initiating treatment (OR3.02; 1.19–7.63). This association attenuated in multivariate analyses (OR 1.21; 0.38–3.91). Children who started their treatment in the first year of their life (30.5%) less likely received disclosure than those commencing treatment later in life (OR 0.12; 0.04–0.40). This association attenuated in multivariate analyses (OR 0.49; 0.12–1.94). Caregivers who experienced difficulties administering medication (30.5%) less likely disclosed the child’s HIV status to the child compared to caregivers not experiencing difficulties administering medication (OR 0.41; 0.18–0.95). This association attenuated in multivariate analyses (OR 0.63; 0.23–1.73). Non-adherence was 10.1% for self-report and 63.1% for pill count. Children who were non-adherent to their treatment had less likely received disclosure than those who were adherent (self-report Fisher’s exact
Associations between disclosure and clinical characteristics – Univariate analyses.
Clinical characteristics | Total |
Disclosure |
||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|
Mean | % | Non-disclosed (mean) | Non-disclosed ( |
Non-disclosed (%) | Full/partial (mean) | Full/partial ( |
Full/partial (%) | Odds Ratio | 95% CI | |||
Stage 1 | - | 19 | 10.3 | - | 14 | 10.1 | - | 5 | 11.1 | - | - | - |
Stage 2 | - | 48 | 26.1 | - | 34 | 24.5 | - | 14 | 31.1 | 1.15 | 0.353.81 | 0.816 |
Stage 3 | - | 83 | 45.1 | - | 64 | 46.0 | - | 19 | 42.2 | 0.83 | 0.27-2.61 | 0.751 |
Stage 4 | - | 34 | 18.5 | - | 27 | 19.4 | - | 7 | 15.6 | 0.73 | 0.20-2.71 | 0.634 |
Suppressed VL | - | 84 | 67.2 | - | 59 | 62.1 | - | 25 | 83.3 | - | - | - |
Detectable VL | - | 41 | 32.8 | - | 36 | 37.9 | - | 5 | 16.7 | 0.33 | 0.12-0.93 |
0.037 |
CD4 count ≥ 500 cells/mm3 | - | 109 | 92.4 | - | 86 | 93.5 | - | 23 | 88.5 | - | - | - |
CD4 count < 500 cells/mm3 | - | 9 | 7.6 | - | 6 | 6.5 | - | 19 | 11.5 | 1.87 | 0.43-8.05 | 0.401 |
No | - | 151 | 83.0 | - | 115 | 82.7 | - | 36 | 83.7 | - | - | - |
Yes | - | 31 | 17.0 | - | 24 | 17.3 | - | 7 | 16.3 | 0.93 | 0.37-2.34 | 0.88 |
No | - | 130 | 69.5 | - | 93 | 65.5 | - | 37 | 82.2 | - | - | - |
Yes | - | 57 | 30.5 | - | 49 | 34.5 | - | 8 | 17.8 | 0.41 | 0.18-0.95 |
0.037 |
No | - | 160 | 88.4 | - | 122 | 88.4 | - | 38 | 88.4 | - | - | - |
Yes | - | 21 | 11.6 | - | 16 | 11.6 | - | 5 | 11.6 | 1.00 | 0.35-2.92 | 0.995 |
Mean (s.d.) | 5.2 (2.4) | - | - | 4.9 (2.3) | - | - | 6.1 (2.5) | - | - | - | - | - |
0.0-3.4 | - | 49 | 25.8 | - | 40 | 27.6 | - | 9.0 | 20.0 | - | - | - |
3.5-5.5 | - | 46 | 24.2 | - | 40 | 27.6 | - | 6.0 | 13.3 | 0.67 | 0.22-2.05 | 0.479 |
5.6-6.6 | - | 48 | 25.3 | - | 37 | 25.5 | - | 11 | 24.4 | 1.32 | 0.49-3.55 | 0.580 |
6.7-9.9 | - | 47 | 24.7 | - | 28 | 19.3 | - | 19 | 42.2 | 3.02 | 1.19-7.63 |
0.020 |
No | - | 132 | 69.5 | - | 90 | 62.1 | - | 42 | 93.3 | - | - | - |
Yes | - | 58 | 30.5 | - | 55 | 37.9 | - | 3 | 6.7 | 0.12 | 0.04-0.40 |
0.001 |
No | - | 173 | 92 | - | 130 | 90.9 | - | 43 | 95.6 | - | - | - |
Yes | - | 15 | 8 | - | 13 | 9.1 | - | 2 | 4.4 | 0.47 | 0.10-2.14 | 0.326 |
Standard 3 meds | - | 164 | 86.3 | - | 124 | 85.5 | - | 40 | 88.9 | - | - | - |
Less (1 or 2) | - | 24 | 12.6 | - | 19 | 13.1 | - | 5 | 11.1 | - | - | 0.803 |
More (4 meds) | - | 2 | 1.1 | - | 2 | 1.4 | - | 0 | 0 | - | - | 1.000 |
Tablets only | - | 117 | 62.2 | - | 76 | 53.1 | - | 41 | 91.1 | - | - | - |
Syrups | - | 71 | 37.8 | - | 67 | 46.9 | - | 4 | 8.9 | 0.11 | 0.04-0.33 |
0.000 |
No NNRTI | - | 123 | 64.7 | - | 102 | 70.3 | - | 21 | 46.7 | - | - | - |
NNRTI | - | 67 | 35.3 | - | 43 | 29.7 | - | 24 | 53.3 | 2.71 | 1.37-5.38 |
0.004 |
No PI base | - | 80 | 42.1 | - | 55 | 37.9 | - | 25 | 55.6 | - | - | - |
PI + D4T/DDI | - | 32 | 16.8 | - | 30 | 20.7 | - | 2 | 4.4 | 0.15 | 0.03-0.66 |
0.013 |
PI + ABC/AZT | - | 63 | 33.2 | - | 51 | 35.2 | - | 12 | 26.7 | 0.52 | 0.24-1.14 | 0.101 |
PI + other | - | 15 | 7.9 | - | 9 | 6.2 | - | 6 | 13.3 | 1.47 | 0.47-4.57 | 0.509 |
No EFV | - | 125 | 65.8 | - | 104 | 71.7 | - | 21 | 46.7 | - | - | - |
EF | - | 65 | 34.2 | - | 41 | 28.3 | - | 24 | 53.3 | 2.90 | 1.46-5.77 |
0.002 |
No lop/rit syrup | - | 151 | 79.5 | - | 108 | 74.5 | - | 43 | 95.6 | - | - | - |
Lop/rit syrup | - | 39 | 20.5 | - | 37 | 25.5 | - | 2 | 4.4 | 0.14 | 0.03-0.59 |
0.008 |
Adherent | - | 169 | 89.9 | - | 124 | 86.7 | - | 45 | 100 | - | - | - |
Non-adherent | - | 19 | 10.1 | - | 19 | 13.3 | - | 0 | 0 | - | - | 0.008 |
Adherent | - | 69 | 36.9 | - | 48 | 33.6 | - | 21 | 47.7 | - | - | - |
Non-adherent | - | 118 | 63.1 | - | 95 | 66.4 | - | 23 | 52.3 | 0.55 | 0.28-1.10 | 0.091 |
CI, confidence interval; s.d., standard deviation; NRTI, nucleoside reverse transcriptase inhibitors; NNRTI, non-nucleoside reverse transcriptase inhibitors; PI, protease inhibitor; D4T,
stavudine; DDI, didanosine; ABC, abacavir; AZT, zidovudine; EFV, efavirenz; lop/rit, lopinavir/ritonavir.
, Significant (
,
Socio-economic characteristics associated with disclosure included family functioning, affected daily activities and waterborne sanitation. Overall family impact index was 90.4% (mean). Children with a high overall family impact scale (good family functioning) had more likely received disclosure than those from a household with low family impact index (OR 4.18; 1.54–11.32). This association attenuated in multivariate analyses (OR 0.80; 0.22–3.00). The mean score for daily activity index (component of family functioning) was 91.5% and included the extent of activities taking more time and effort, difficulty finding time and energy to finish household tasks or affected daily activities. Children from families with a higher family activity index had less likely received disclosure compared to children from families with a low family activity index (activities affected) (OR 0.21; 0.04–1.000). This association attenuated in multivariate analyses (OR 0.81; 0.30–2.17). The overall mean SES index was 52.0%. The study population had significantly more often waterborne sanitation (73.7%,
Associations between disclosure and socio-economic characteristics – Univariate analyses.
Socio-economic characteristics | Total |
Disclosure |
||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|
Mean | % | Non-disclosed (mean) | Non-disclosed ( |
Non-disclosed (%) | Full/partial (mean) | Full/partial ( |
Full/partial (%) | Odds Ratio | 95% CI | |||
Mean (s.d.) | 90.4 (11.5) | 89.7 (10.8) | 92.4 (13.2) | - | - | - | ||||||
41.9-87.4 | - | 47 | 24.9 | - | 40 | 27.8 | - | 7 | 15.6 | - | - | - |
97.5-93.3 | - | 47 | 24.9 | - | 38 | 26.4 | - | 9 | 20.0 | 1.35 | 0.46-4.00 | 0.584 |
93.4-99.1 | - | 50 | 26.5 | - | 40 | 27.8 | - | 10 | 22.2 | 1.43 | 0.50-4.13 | 0.510 |
99.2-100 | - | 45 | 23.8 | - | 26 | 18.1 | - | 19 | 42.2 | 4.18 | 1.54-11.32 |
0.005 |
Mean (s.d.) | 91.4 (15.2) | - | 91.3 (15.2) | - | 91.5 (15.4) | - | - | - | ||||
25.0-91.6 | - | 44 | 23.3 | - | 32 | 22.2 | - | 12 | 26.7 | - | - | |
91.7 | - | 28 | 14.8 | - | 26 | 18.1 | - | 2 | 4.4 | 0.21 | 0.04-1.000 |
0.050 |
100 | - | 117 | 61.9 | - | 86 | 597 | - | 31 | 68.9 | 0.96 | 0.44-2.10 | 0.921 |
Mean (s.d.) | 52.0 (17.0) | - | 50.7 (17.2) | - | 56.4 (15.8) | - | - | - | - | |||
9.5-42.7 | - | 40 | 21.9 | - | 34 | 24.3 | - | 6 | 14.0 | - | - | - |
42.8-57.0 | - | 47 | 25.7 | - | 36 | 25.7 | - | 11 | 25.6 | 1.73 | 0.58-5.20 | 0.328 |
57.1-66.6 | - | 44 | 24.0 | - | 34 | 24.3 | - | 10 | 23.3 | 1.67 | 0.55-5.10 | 0.371 |
66.7-100 | - | 52 | 28.4 | - | 36 | 25.7 | - | 16 | 37.2 | 2.52 | 0.88-7.19 | 0.084 |
No sewage | - | 50 | 27.0 | - | 44 | 31.2 | - | 6 | 13.6 | - | - | - |
Water-born | - | 135 | 73.0 | - | 97 | 68.8 | - | 38 | 86.4 | 2.87 | 1.13-7.29 |
0.026 |
CI, confidence interval; s.d., standard deviation; FI, Family impact; SES, socio-economic status.
, Significant (
Socio-economic status indicators and South African comparison.
Variable | Study (%) | South Africa |
Chi-squared | ||
---|---|---|---|---|---|
Number of people per household | 184 | 5.2 | 3.4 | 0.000 |
|
Type of dwelling (formal / informal) | 185 | 60.0 | 77.6 | 32.0 | 0.000 |
Drinking water (piped in house or yard/other) | 185 | 77.8 | 73.4 | 1.8 | 0.176 |
Toilet facilities (waterborne /no sewage) | 185 | 73.0 | 57.0 | 19.3 | 0.000 |
Share toilet facilities (no/yes) | 183 | 52.5 | - | - | |
Fuel cooking (electricity/other) | 185 | 77.3 | 73.9 | 1.1 | 0.109 |
Fuel heating (electricity/other) | 185 | 58.9 | 58.8 | 0.0 | 0.978 |
Fuel lighting (electricity/other) | 185 | 83.2 | 84.7 | 0.3 | 0.571 |
Material floor (finished/natural or rudimentary) | 185 | 95.7 | - | - | - |
Material walls (finished/unfinished) | 185 | 39.5 | - | - | - |
Share rooms in house (no/yes) | 183 | 82.0 | - | - | - |
Radio (no/yes) | 184 | 72.8 | 67.5 | 2.4 | 0.125 |
TV (no/yes) | 184 | 89.1 | 74.5 | 20.6 | 0.000 |
Fridge (no/yes) | 184 | 79.9 | 68.4 | 11.3 | 0.001 |
Computer (no/yes) | 184 | 11.4 | 21.4 | 10.9 | 0.001 |
Landline (no/yes) | 184 | 7.1 | 14.5 | 8.1 | 0.004 |
Cell phone (no/yes) | 184 | 95.7 | 88.9 | 8.6 | 0.003 |
Car (no/yes) | 184 | 15.8 | 29.5 | 16.6 | 0.000 |
Bicycle (no/yes) | 184 | 16.3 | - | - | - |
Motorcycle/Scooter (no/yes) | 184 | 1.1 | - | - | - |
Donkey/horse (no/yes) | 184 | 0 | - | - | - |
Sheep/cattle/goat (no/yes) | 184 | 0 | - | - | - |
, Significant (
, StatsSA 2012.
The prediction model for disclosure included five variables: age of the child (OR 146.56; 20.27–1059.69,
Predictors of paediatric disclosure.
Only 17 children (8.9%) in this cohort of 3–14-year-olds received full disclosure. In multivariate analyses, we found that increased age of the child and higher education of the caregiver were strongly associated with disclosure of HIV status to the child. In addition, sex of the caregiver, detectable viral load, syrup formulation, PI regimens with stavudine and didanosine, and self-reported non-adherence were strongly associated with non-disclosure. The prediction model identified age of the child, caregiver’s marital status, viral load, regimen and non-adherence defined by pill count (95% – 105%) as predictors of disclosure.
Similar to other studies, we found older age of the child to be strongly associated with increased probability of disclosure of the HIV status to the child.
Male caregiver, level of education and HRQoL were associated with disclosure. While some studies have described not having a biological father as a predictor of disclosure,
We found a strong association between detectable viral load and non-disclosure. A detectable viral load is an indicator of failure of treatment.
Socio-economic characteristics associated with disclosure included family functioning, affected daily activities and waterborne sanitation. Although some studies have described an association with disclosure and the child’s family situation,
A limitation of our study was the reliance on medical records for viral load and CD4 count results. In addition, the questionnaire did not include topics like experience with or perspectives on disclosure. Literature focuses on healthcare providers’ perspective
This cross-sectional study shows a low proportion of children knowing about their HIV status. Older age of the child was strongly associated with disclosure. We found a less stringent need for caregivers to disclose the child’s HIV status to the child when ART was tolerated well and no condition-related difficulties were experienced (e.g. high HRQoL for both the child and the caregiver and family activities not affected by chronic disease). Well-functioning families, with caregivers who received higher level of education and children from households with better SES, provided an environment enabling and promoting disclosure of the HIV status to the child. Disclosure can only be beneficial when there is a supportive social structure. Non-disclosure can indicate a sub-optimal social structure, which could negatively affect adherence and viral suppression. In order to successfully address disclosure, the complex social context needs to be taken into account. When families are in a good space, there is no pressing need to start the disclosure process. However, these circumstances positively enable the disclosure process. Targeting these families for disclosure interventions and the support of families to reach such an enabling environment can therefore be especially successful.
The authors thank the study participants, the staff at the clinical site, TC Newman Hospital and Anova Health Institute and also Mrs H. Lesch for her assistance with the data collection.
The authors have no conflict of interests.
S.L.v.E. and A.M.v.F. conceived this cohort study. S.L.v.E., A.M.v.F., M.F.C. and R.P.H.P. contributed to the conception of design and methodology of the study and prepared the protocol. S.L.v.E. and P.K. contributed to acquisition of data, facilitated by C.G. S.L.v.E. prepared the data sets and conducted the statistical analyses, which were checked by A.M.v.F., R.P.H.P. and M.O.K. All authors contributed substantially to the interpretation of the data. S.L.v.E. drafted the manuscript and all authors revised the manuscript critically for important intellectual content. All authors reviewed and approved the final manuscript.
This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.
Data sharing is not applicable to this article as no new data were created or analysed in this study.
The views expressed in the article are those of the authors and not an official position of the institution or funder.