Characteristics of Study Participants
Of the 240 caregiver-child dyads who received the Sankofa intervention at KATH during the parent study, 65% (N = 157) of them were successfully enrolled in the current study. Of the remaining 83 caregiver-child dyads, 51 dyads were nonresponses—they did not attend clinic during the study period and/or did not respond to phone calls to invite participation. The remaining dyads (N = 32) were excluded for the following reasons: child passed (N = 18); caregiver passed (N = 11); both child and caregiver passed (N = 3). Table 1 summarizes the children’s demographics; 50.3% were female, and the median age at enrollment was 10 years (IQR 8-12). The majority attended school (93%), and mother to child transmission was the most common mode of HIV transmission (79.6%). The disclosed group was significantly older (p < 0.001), had been on ART for a longer period of time (p = 0.014), and had a longer mean time between enrollment and the current study (p < 0.001). No significant differences were noted between children who were or were not enrolled in this study.
The demographics of the caregivers are presented in Table 2. Caregivers’ mean age was 42.22 ± 9.69 years, and 82.8% were female. Fifty-six percent of caregivers were married, and most were living with HIV (61.2%). Caregivers in the disclosed group were significantly older (p = 0.04) and differed in their employment statuses (p = 0.020). Compared to caregivers who were enrolled in the current study, those who were not had significant differences in marital status (p = 0.016), monthly household income (p = 0.036), and baseline HIV-KQ-18 score (p = 0.018). Compared to the caregivers not enrolled in the current study, the caregivers enrolled lived significantly closer to KATH (p = 0.046).
Depression scores at ‘Sankofa’ baseline and the current study in children living with HIV and their caregivers
In the current study, participants’ depression scores were collected a median of 5.19 years (IQR 4.16 – 6.07 years) after participants’ respective dates of enrollment in the parent study. The CDI scores of the children were 5.19 ± 3.77 (mean ± SD) and 3.35 ± 3.50 (mean ± SD) at ‘Sankofa’ baseline and the current study, respectively. There was a significant mean reduction of 1.82 (95% CI: 1.01-2.63) between baseline and the current study’s measurements (p < 0.0001). Interestingly, children who were disclosed to had a greater reduction in CDI scores compared to those who were not disclosed to, although, this did not reach statistical significance. After adjusting for time since enrollment, we still found no significant difference in CDI reduction between disclosed and non-disclosed children (p = 0.19). CDI scores of the children in the current study were significantly correlated with BDI scores of the caregivers in the current study (r=0.19, p = 0.019).
BDI scores at ‘Sankofa’ baseline and the current study for caregivers were 6.55 ± 6.02 and 3.94 ± 4.49, respectively. We observed a statistically significant reduction in BDI scores between baseline and the current study, (2.65 (95% CI: 1.76-3.55), p < 0.0001). However, we did not observe any significant difference in mean reduction between caregivers of disclosed children compared to caregivers of non-disclosed children. When adjusting for time since enrollment for caregivers, we still did not find a significant difference in BDI reduction between caregivers of disclosed and non-disclosed children (p = 0.41). BDI scores from baseline and the current study were found to be highly correlated (r=0.45, p < 0.0001). When BDI scores were analyzed as a categorical variable, we observed improvement of scores between baseline and the current study: 6 (86%) caregivers with mild depression changed to minimal depression; 5 (100%) caregivers with moderate depression changed to mild or minimal depression, and 2 (100%) caregivers with severe depression changed to moderate or minimal depression over time. Only 2 (1.5%) caregivers changed to mild or moderate depression from minimal depression. These changes did not reach statistical significance (Table 3). However, when the categories were combined into minimal versus mild, moderate, and severe depression, the changes reached statistical significance (p = 0.02). We repeated this analysis by disclosure status and found borderline significant improvement in the caregivers of disclosed children (p = 0.06) but not in the caregivers of undisclosed children (p = 0.16).
Longitudinal trends in depression scores in children living with HIV and their caregivers
Overall, we did not find a statistically significant association between disclosure status and CDI score of children (p=0.48). The adjusted mean CDI score of children who were disclosed to was lower than that of children who were not disclosed to across all major assessment time points except week 144. Only at week 48 was the mean difference statistically significant (Figure 1, Table 4).
A separate mixed model was created for BDI scores of caregivers with baseline HIV Stigma Scale score and Brief IPQ score added as covariates. We did not find a statistically significant association between disclosure status of children and BDI score (p = 0.11). Compared to caregivers of non-disclosed children, the adjusted mean BDI score of caregivers of disclosed children was lower at all time points during the parent study and the current study; however, this was not statistically significant except at week 48 (Figure 2, Table 4).