The importance of caregivers in the outcome of pediatric HIV management, Mombasa, Kenya

Abstract

We assessed programmatic gaps that prevent the optimal treatment of pediatric HIV infection despite free antiretroviral care in Kenya. Of 626 HIV-infected Kenyan children, the median age was five years, 54% were male and the mortality rate was 3.2 per 100 person-years. A total of 380 (61%) children initiated antiretroviral therapy (ART) during the study period. Among the 246 children who never started ART, 129 (52%) met the criteria for ART initiation. Immunologic failure occurred in 20% of children who received ART for >24 weeks. In multivariate analysis, immunological failure was associated with having nonimmediate relative or unrelated caregivers accompanying the child to clinic (AOR = 69.16, p = 0.008). Having ≥ 3 types of accompanying caregivers was also associated with virologic failure in multivariate analysis (AOR = 3.84, p = 0.03). The lost to follow-up rate was 8.7/100 persons-years for the entire cohort, and significantly higher (17.7/100 persons-years) among children not on ART (p < 0.001). Among children who do initiate ART, those with the best treatment outcomes were those who had a limited number of close relatives as caregivers and good adherence to ART. Focus on early ART initiation and education of the right caregiver will likely improve retention and quality of pediatric HIV care in Kenya.

“The sky is the limit”: adhering to antiretroviral therapy and HIV self‐management from the perspectives of adolescents living with HIV and their adult caregivers

“…Overall, these findings corroborate other research that emphasized the importance of families, psychosocial environments and caregiver characteristics on ART adherence and well-being of younger children living with HIV in SSA [6,17,38,39] and among perinatally infected youth in the United States [40–42]. While the need for caregiver involvement is undisputed when discussing medication adherence among children and young adolescents (<14), the role of families and caregivers has been explored less in relationship to older ALHIV.…”

Implementation and Operational Research

“…18,58 An HIV positive caretaker could also be afraid of disclosing their child’s or their status for fear of discrimination. 20 In our study, univariate analyses demonstrated that the caretaker’s identity, parent or other, is not associated with LTFU among children, but children whose caretaker had positive or unknown HIV status were more likely to be LTFU, although this findings was not significant in the multivariate analysis, possibly due to a lack of power. Adherence counseling tailored to the caretaker may be an underappreciated factor affecting treatment outcomes among HIV-infected children living in Tanzania and similar settings.…”

“…Adherence counseling tailored to the caretaker may be an underappreciated factor affecting treatment outcomes among HIV-infected children living in Tanzania and similar settings. 20 …”

“…10–18 SSA studies have also indicated that the child’s caregiver and the nearness of their clinic significantly impact the child’s adherence to treatment. 19,20 It is important to determine if these findings apply to Tanzanian children since research has emphasized the need to tailor retention strategies to those patients most at risk of LTFU. 2,7,21 This study strives to fill the research gap on pediatric LTFU in Tanzania.…”

Prediction of HIV Virologic Failure Among Adolescents Using the Pediatric Symptom Checklist

“…Having a parent or caregiver present at clinical visits appears to be protective of adherence and treatment outcomes among adolescents (18, 19). Adherence has been inconsistently associated with gender (17, 18, 20, 21) and orphan/caregiver status (21–23). Lack of caregiver involvement was incorporated into our definition of a positive PSC as we classified non-completion of the PSC as a positive score.…”