Fear of stigma, beliefs, and knowledge about HIV are barriers to early access to HIV testing and disclosure for perinatally infected children and adolescents in rural communities in South Africa

Figures & data

Table 1: Demographic characteristics of primary caregivers of HIV infected children

Factor	Frequency	Percentage
Relationship to the child
Biological mother	158	38.9
Biological father	11	2.7
Grandparents	122	30.1
Other relatives^*	115	28.3
Gender of caregiver
Female	372	91.6
Male	34	8.4
Age of caregiver
Less than 40 years	198	49.0
Over 40 years	206	51.0
Marital status of caregiver
Never married	216	53.2
Ever married	190	46.8
Employment status
Unemployed	280	69.0
Employed	73	18.0
Pensioner	53	13.1
Formal educational
None	60	14.8
Primary	98	24.1
Secondary	163	40.2
Completed 12th grade	69	17
Tertiary	16	3.9
Source of income
Child support grant	282	70.7
Old-age pension grant	78	19.6
Other sources	39	9.8
Caregiver ever tested
No	38	9.4
Yes	368	90.6
Caregiver HIV status
Negative	174	42.9
Positive	194	47.8
Unknown	38	9.4

Note: ^* Other relatives includes older sibling, uncles, and aunts.

Table 2: Demographic and clinical characteristics of HIV infected children by disclosure status

Factor	Disclosure status
	Not disclosed (n = 294)	Disclosed (n = 111)	p-value
Current age			0.000
5–9 years	168 (57.1)	30 (27.0)
10–17 years	126 (42.9)	81 (73.0)
Sex of child			0.569
Girl	139 (47.3)	56 (50.5)
Boy	155 (52.7)	55 (49.6)
Age at HIV diagnosis			0.000
0–5 years	170 (59.7)	40 (37.4)
6–10 years	97 (34.0)	43 (40.2)
11–16 years	18 (6.3)	24 (22.4)
Age at ART initiation			0.000
0–5 years	147 (52.1)	37 (34.3)
6–10 years	117 (41.5)	44 (40.7)
11–16 years	18 (6.4)	27 (25.0)
ART duration			0.146
0–5 years	215 (75.4)	72 (66.1)
6–10 years	63 (22.1)	32 (29.4)
11–16 years	7 (2.5)	5 (4.6)
Reasons for HIV testing			0.759
Child was ill	229 (77.9)	90 (81.8)
Illness of parents	29 (9.9)	10 (9.1)
Death of mother	18 (6.1)	4 (3.6)
Other	18 (6.1)	6 (5.5)
Hospitalisation			0.927
No	145 (49.5)	55 (50.0)
Yes	148 (50.5)	55 (50.0)
Orphan status			0.171
Orphan	126 (42.9)	56 (50.5)
Non-orphan	168 (57.1)	55 (49.6)

Table 3: Disclosure status of children and caregiver reasons for disclosure

Variables	Frequency	Percentage
Disclosure status (n = 405)
Disclosed	111	27.4
Not disclosed	294	72.6
Age at HIV disclosure (n = 100)
5–9 years	39	39.0
10–16 years	61	61.0
Person who disclosed HIV status to child (n = 100)
Parents	31	31
Healthcare workers	27	27
Other relatives	42	42
Caregivers’ reasons for disclosure (n = 74)
To improve adherence to treatment	26	35.1
To prevent infecting others	3	4.0
The child was asking questions about taking medication	9	12.2
The child was old enough to understand HIV	4	5.4
It’s the child’s right to know his/her status	32	43.2

Table 4: Caregiver-reported barriers to disclosure and intentions to disclose

Factor	Number	Percentage
Barriers preventing disclosure to children (n = 294)
Child would harm him/herself	10	3.4
Fear of negative reactions to disclosure	24	8.2
Child would tell others	21	7.1
Fear of discrimination	10	3.4
Child does not understand HIV	66	22.4
Child is too young	153	52.0
Lack skills to disclose	10	3.4
Communicating with children without disclosure (n = 262)
Child does not ask about his/her illness or medication	115	43.9
Caregiver says nothing about the illness	35	13.4
Substitute HIV with other diseases	86	32.8
Change the discussion	26	9.9
Preferred age at disclosure (n = 292)
< 10 years	15	5.1
10–14 years	154	52.7
15–20 years	121	41.4
> 20 years	2	0.7
Preferred person to disclose HIV to child (n = 314)
Caregiver	245	78.0
Caregiver and health provider	7	2.2
Health provider	62	19.8

Table 5: Multivariate logistic regression of HIV disclosure to child

Factor	Odds ratio	Std. error	z	p > z	[95% CI]
Child age	2.82	0.775	3.77	0.000	1.64–4.83
Age at HIV diagnosis	1.57	0.413	1.71	0.087	0.94–2.63
ART start age	1.18	0.320	0.61	0.541	0.69–2.01
Caregiver educational level	1.16	0.139	1.24	0.216	0.92–1.47