Social support, disclosure and stigma and the association with non-adherence in the six months after antiretroviral therapy initiation among a cohort of HIV-positive adults in rural KwaZulu-Natal, South Africa^*

* NM was PI of the original prospective cohort study that provided data for this secondary data analysis. NM and SG conceived the data analysis plan and conducted the analyses. SG wrote the first draft and both authors contributed to finalising the manuscript.

Figures & data

Table 1. Data collection measures for social support, disclosure, ART side effects and health seeking behaviour variables.

Questions used to measure social support^a&b	Possible answers	Grouping for analysis
How often do you spend time with family?	Every day, several days a week, at least once a fortnight, once a month, less than once a month.	No change in the groupings for analysis
How often do you spend time with friends?	Every day, several days a week, at least once a fortnight, once a month, less than once a month.	For analysis answers were grouped as: Every day/several days a week At least once a fortnight Once a month/Less than once a month
How much can you rely on family/friends if you have a serious problem?	A lot, a little, not at all.	No change in the groupings for analysis
How much can you open up to family/friends to talk about worries?	A lot, a little, not at all.	No change in the groupings for analysis
Do you have someone in your life to tell your private feelings and your concerns	Yes, No.	No change in the groupings for analysis
Disclosure Questions	Possible Answers	Grouping for analysis
Who have you disclosed your HIV status to? Have you disclosed to anyone that you have started ART, and if yes, to whom.	For both questions if yes, individuals disclosed to were chosen from a pre-written list: partner. Children, mother, father, sister, brother, other female relative, other male relative, female friend, male friend, doctor/nurse, traditional healer, priest/church elder, HIV support group, other	For analysis answers were grouped as: Not disclosed Disclosed to family Disclosed to friends Disclosed to both family and friends
Symptom self-report	Possible Answers	Grouping for analysis
Have you experienced symptoms over the last six months which you think may be due to your ART?	If yes, symptoms experienced were recorded from a pre-written list: diarrhoea, nausea, rash/itching, pain in hands/feet, feeling tired, insomnia headaches, body shape changes, and a category ‘other’ allowed for other symptoms to be specified.	We counted the total number of symptoms each individual reported and then grouped this as: Zero symptoms One symptom Two symptoms Three or more symptoms Symptoms were also considered individually as binary variables in models that did not consider the number of symptoms
Health-seeking Behavior	Possible Answers	Grouping for analysis
Have you visited any of the following to treat diseases or conditions other than HIV/AIDS?	Responses were chosen from: this clinic, another government clinic, hlabisa: hospital, another government hospital, private clinic or hospital, inyanga, sangoma, umthandazi, pharmacy or other.	Responses were grouped into public healthcare facilities (Government clinics, government hospitals and Public Health Care Hospital), separate from traditional healer and considered as two separate variables in the analysis.

^aQuestions related to social support and HIV disclosure were asked at enrolment – these were used to ensure that we had temporally the correct value of the variable before any “non-adherence” took place. All other questions were asked at the six month visit.

^bQuestions regarding social support were derived from Myer et al (Myer, Stein, Grimsrud, Seedat, & Williams, 2008).

Figure 1. Radar chart for ART Side effects by six months.

Note: Of the seventy-seven participants who described experiencing “other” side effects: 82% reported dizziness. The others were: shortness of breath (2) and bad dreams (2), acid, back pain, bleeding ears, hair loss, no period, tremor, feeling cold, sight problems, loss of appetite, mouth sores, sores on their head.

Table 2. Demographics and HIV characteristics at enrolment by eligibility for analysis.

Characteristics	Eligible for analysis (N = 321) n (% of N)	Not eligible for analysis (N = 64) n (% of N)	Chi squared p value
Sex
Female	212 (66)	32 (50)	0.02
Male	109 (34)	32 (50)
Current Marital Status
Never Married	247 (77)	57 (89)	0.23^a
Currently Married	45 (14)	4 (6)
Separated/Widowed	29 (9)	3 (5)
Age: Median (IQR)	36 (30–44)	33 (28–41)	0.13^b
< 48	273 (85)	54 (84)	0.89
≥ 48	48 (15)	10 (16)
Education (Missing, N = 26)
<1yr	19 (6)	5 (10)	<0.66^a,c
Primary School	76 (25)	10 (20)
Secondary not matric	128 (41)	21 (41)
Matric & higher	85 (27)	15 (29)
Socioeconomic status
Current Employment:
Yes	84 (26)	13 (20)	0.32
No	237 (74)	51 (80)
Perceived Stigma:
Lower perceived stigma	229 (71)	48 (75)	0.55
Higher perceived stigma	92 (29)	16 (25)
Disclosed HIV + at enrolment:
Not Disclosed	35 (11)	12 (19)	0.14^a
Disclosed to FAM	241 (75)	40 (63)
Disclosed to FRI	3 (1)	0 (0)
Disclosed to both	42 (13)	12 (19)
Has someone to confide in
Yes	301 (95)	59 (92)	0.38
No	16 (5)	5 (8)
Can rely on family and friends
A lot	244 (76)	52 (81)	0.58
A little	66 (21)	11 (17)
Not at all	11 (3)	1 (2)
Can be open with family and friends
A lot	122 (38)	24 (38)
A little	119 (37)	24 (38)	0.99
Not at all	80 (25)	16 (25)
ARV Knowledge at enrolment
100% correct answers	157 (49)	30 (46)	0.77
< 100% correct answers	164 (51)	34 (53)
CD4 Categories^d
0–99 cells/ µl	103 (32)	24 (39)	0.46^a
100 – 199 cells/ µl	183 (57)	33 (54)
≥200 cells/ µl	35 (11)	4 (7)
1st line ART Drug Regime (missing, N = 3)
AZT + 3TC +EFV	2 (1)
TDF + 3TC + EFV	11 (3)
D4T +3TC + EFV	253 (80)
D4T +3TC + NVP	52 (16)
Tested Positive <1 year before the study
Yes	212 (66)	44 (69)	0.68
No	109 (34)	20 (31)
Reported side effects from ART
None	100 (31)
1	100 (31)
2	67 (21)
>2	54 (17)

^aFishers Exact Test.

^bWilcoxon rank sum test

^cThe statistical test compared the non-missing data. Significant results in bold.

^dOnly 36% had a CD4 measurement taken between their enrolment and the six month visit, thus CD4 at enrolment was considered in the analysis as a proxy for health status at enrolment and represented by three categories: 0–99 cells/µl, 100–199 cells/µl and ≥ 200 cells/µl.

Table 3. Final multivariable logistic regression for non-adherence in the last six months.

Variable n  = 321	N (% non-adherent)	Unadjusted Odds Ratio (CI)^a^,b	Adjusted Odds Ratio (CI)	Likelihood Ratio Test P Value
Visited Public Healthcare service for condition other than HIV:
No	169 (20)	1	1	0.01
Yes	152 (30)	1.79 (1.07–3.00)	1.98 (1.14–3.43)
ARV Knowledge at enrolment:
100% correct answers	157 (18)	1	1	<0.001
< 100% correct answers	164 (30)	1.94 (1.15–3.26)	2.10 (1.21–3.66)
CD4 count at enrolment
0–99 cells/ µl	103 (17)	1	1	0.01
100–199 cells/ µl	183 (27)	1.78 (0.97–3.25)	2.50 (1.30–4.81)
≥200 cells/ µl	35 (31)	2.16 (0.90–5.20)	2.85 (1.10–7.40)
Symptoms of Rash/Itching:
No	239 (21)	1	1	<0.001
Yes	82 (36)	2.07 (1.19–3.62)	2.48 (1.37–4.52)
Tested Positive <1 year before the study
No	109 (18)	1	1	0.02
Yes	212 (28)	1.72 (0.97–3.00)	2.00 (1.10–3.70)
Age:
<48 years	273 (27)	1	1	<0.001
≥48 years	48 (10)	0.68 (0.50–0.94)	0.65 (0.46–0.90)
Stigma
Lesser perceived stigma	229 (21)	1		0.04
Greatest perceived stigma	92 (33)	1.78 (1.04–3.04)
Disclosed HIV status at enrolment:
Disclosed to family	241 (26)	1.00		0.66
Disclosed to none	35 (20)	0.71 (0.30–1.70)
Disclosed to friends	3 (33)	1.41 (0.13–15.85)
Disclosed to both	42 (19)	0.66 (0.30–1.51)
ART Disclosure
Not Disclosed	24 (29)	1		0.43
Disclosed to FAM	200 (22)	0.66 (0.26–1.70)
Disclosed to FRI	4 (25)	0.81 (0.07–9.18)
Disclosed to both	93 (30)	1.05 (0.39–0.99)
ART Disclosur
Rely on Family/Friends
A Lot	244 (25)	1		0.87
A Little	66 (24)	0.96 (0.51–1.81)
Not at All	11 (18)	0.53 (0.14–3.17)
Open with Family/Friends
A lot	122 (23)	1		0.85
A little	119 (25)	1.13 (0.62–2.04)
Not at All	80 (26)	1.29 (0.62–2.30)
Time with Family:
Every Day	180 (30)	1		0.13
Several days/week	13 (15)	0.44 (0.15–1.36)
At least once a fortnight	25 (16)	0.37 (0.11–1.30)
Once a month	81 (20)	0.57 (0.30–1.08)
Less than once a month	22(14)	0.42 (0.09–1.98)
Time with Friends
Less than once a month/once a month		1.00		0.02
At least once a fortnight		3.97 (1.46–10.77)
Several days a week/Every day		1.46 (0,85–2.49)

Note: N = 321.^a,b

^aOther variables that were significant only in univariable models (data not shown): having visited a traditional healer in the last six months, having more gender equitable norms, having ever drunk alcohol were associated with greater odds of non-adherence.

^bIn univariable analysis, we also considered HIV optimism, ART drug regime, ART disclosure to partner and gender but these were not significant.

Myer, L., Stein, D. J., Grimsrud, A., Seedat, S., & Williams, D. R. (2008). Social determinants of psychological distress in a nationally-representative sample of South African adults. Social Science & Medicine, 66(8), 1828–1840. doi: 10.1016/j.socscimed.2008.01.025

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