Pediatric HIV Disclosure Intervention Improves Immunologic Outcome at 48 Weeks: The Sankofa Trial Experience.

BACKGROUND: The World Health Organization recommends disclosure of HIV status to children and adolescents living with HIV (CALWH). HIV disclosure improves adherence to antiretroviral therapy and immunologic and virologic outcomes. However, the prevalence of HIV disclosure is low in sub-Saharan Africa. We assessed the longitudinal effect of the Sankofa Pediatric HIV disclosure intervention on immunologic and virologic outcomes among CALWH in Ghana. METHODS: We conducted a secondary analysis of a two-arm site-randomized clinical trial among CALWH aged 7-18 years. Data were collected at baseline, 24, and 48 weeks. Generalized linear mixed models were used to compare immunologic (CD4) and virologic (viral load) outcomes as both continuous and categorical variables by disclosure status and by intervention group. RESULTS: Among participants who had their HIV status disclosed during this study, the proportion with CD4 percent >25% increased from 56.5% at baseline to 75.4% at week 48 ( P = 0.03), with a slight increase in the undisclosed group (69.5% vs. 74.3%, P = 0.56). In the intervention arm, there was a steady increase in proportion with CD4 percent >25% from 47.1% at baseline to 67.8% at week 48 ( P = 0.01) while it remained unchanged in the control arm (80.5% vs. 81.3% [ P = 0.89]). Concurrently, declines in detectable viral load were observed in both disclosed (63.3% vs. 51.5%, P = 0.16) and undisclosed (69.9% vs. 62.0%, P = 0.17) groups while the intervention group experienced a meaningful drop from 72.9% to 57.6% at 24 weeks ( P = 0.04), which was maintained at 48 weeks. CONCLUSIONS: A structured, culturally relevant disclosure intervention can improve clinical outcomes.

Sankofa pediatric HIV disclosure intervention did not worsen depression scores in children living with HIV and their caregivers in Ghana.

BACKGROUND: The 'Sankofa' pediatric HIV disclosure study (2013-2017) was an intervention that aimed to address the low prevalence of disclosure of HIV status in Ghana. METHODS: We conducted a cross-sectional study at the intervention site in Kumasi, Ghana, in 2019, (2 years after study closure) and administered the 21-item Beck Depression Inventory (BDI) and the 10-item Child Depression Inventory (CDI) to caregiver-child dyads who received the intervention. RESULTS: We enrolled 65% (N = 157) of the original dyads in the present study. Between Sankofa enrollment baseline and the present study, both children and caregivers had significant (p < 0.0001) mean reductions in CDI scores and BDI scores, respectively. CDI scores of the children were significantly correlated with BDI scores of the caregivers (r = 0.019, p = 0.019). No statistically significant associations between disclosure status and either CDI score or BDI score were found. CONCLUSIONS: Our findings did not support caregivers' fears that disclosure leads to depression. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01701635 (date of registration Oct 5, 2012).

Illness Narratives of Children Living with HIV Who Do Not Know Their HIV Status in Ghana: I'm Sick, But I Don't Know the Sickness-A Qualitative Study.

Despite available guidelines for disclosure of HIV status to children, most children living with HIV are unaware of their diagnosis. We sought to characterize the concepts of illness and treatment among children living with HIV who do not know their status. As part of the Sankofa trial we interviewed 435 children aged 6-18 enrolled in clinical care at pediatric HIV clinics at two teaching hospitals in Ghana. Theoretic thematic analysis generated themes among responses. The children believe they come to the clinic to collect medication, to address specific symptoms, to prevent and treat 'sickness', or as part of their routine. Most children learned of their 'illness' from a family member. A majority (73.5%) of children had never talked about their 'illness' with anyone else; many feared consequences. Children living with HIV who do not know their status exhibit signs of anticipated and internalized stigma regarding their unknown 'illness.' An understanding of the way children conceptualize their illness has implications for health promotion and the provision of appropriate information to children living with HIV.ClinicalTrials.gov Identifier NCT01701635.

RESUMEN: A pesar de las pautas disponibles para la divulgación del estado del VIH a los niños, la mayoría de los niños que viven con el VIH desconocen su diagnóstico. Intentamos describir los conceptos de enfermedad y tratamiento entre los niños que viven con el VIH que no conocen su estado de infeccion. Como parte del ensayo Sankofa, entrevistamos a 435 niños de 6 a 18 años inscritos en atención clínica cuidado en clínicas pediátricas de VIH en dos hospitales docentes en Ghana. El análisis temático teórico generó temas entre las respuestas obtenidas. Los niños creen que vienen a la clínica a recoger medicamentos, a tratar síntomas específicos, a prevenir y tratar "condiciones" o como parte de su cuidado rutinario. A traves de entrevistas, aprendimos que la mayoría de los niños aprendieron de su "enfermedad" de un miembro de la familia. Esta mayoría (73.5%) nunca habían hablado sobre su "enfermedad" con nadie más; debido a muchas consecuencias temidas. Los niños que viven con VIH que no conocen su estado, exhiben signos de estigma anticipado e internalizado con respecto a su "enfermedad" desconocida. El entender la forma en que los niños conceptualizan su enfermedad tiene implicaciones para la promoción de la salud y el suministro de información adecuada a los niños que viven con el VIH.

Clinic-Based Pediatric Disclosure Intervention Trial Improves Pediatric HIV Status Disclosure in Ghana.

BACKGROUND: Disclosing HIV status to HIV-positive children is a major challenge facing families and health care providers. Despite recommendations for disclosure, rates remain low. We tested whether a pediatric HIV disclosure intervention delivered as an integral component of routine HIV health care in Ghana would improve disclosure to children. METHODS: Dyads of HIV-infected children aged 7-18 years and their caregivers were enrolled from 2 HIV clinics in Accra and Kumasi, Ghana. The sites were randomly assigned to one of the 2 intervention arms to avoid treatment contamination between intervention and control participants. Trained interventionist used theory-guided therapeutic communication and personalized interaction to promote disclosure. Disclosure outcomes were measured at 12-week intervals. All analyses were completed using a modified intention-to-treat approach. RESULTS: We enrolled 446 child-caregiver dyads (N = 240 intervention group; N = 206 control group); 52% of the children were boys, mean age 9.78 (±2.27) years. For disclosure at 1 year, a better overall treatment effect was observed (P < 0.001). Children in the treatment group had greater disclosure at each time point (P < 0.001) and a higher proportion of them had been disclosed to by 1 year (51.4% vs. 16.2%; P < 0.001; un-adjusted hazard ratio = 3.98: 95% confidence interval: 2.63 to 6.03) and 3 years (71.3% vs. 34.0%; unadjusted hazard ratio = 4.21: 95% confidence interval: 3.09 to 5.72). In the multivariate Cox model, factors associated with disclosure were treatment group (P < 0.001), children <11 years of age (P < 0.001), HIV-infected caregivers (P = 0.015), and caregiver's with greater education (P = 0.022). CONCLUSIONS: This practical clinic-based disclosure intervention shows excellent promise as a means of improving HIV pediatric disclosure outcomes.

Prototype Development, Usability, and Preference of a Culturally-relevant Pictorial Aid to Facilitate Comprehension of Likert-type Levels of Agreement in Caregivers of Children Living With HIV in Ghana.

Pictorial illustrations of Likert-type scales are culturally useful and may reduce error associated with usage of Westernized self-report measures in low- and middle-income countries. Pictorial illustrations can be encounter-specific decision aids in populations with low literacy or English proficiency. In an unanticipated finding from the SANKOFA study, caregivers of children living with human immunodeficiency virus experienced challenges comprehending Likert-type scales. A cross-sectional, qualitative study was conducted with a SANKOFA participant subset (n = 30) in Ghana. Using an informatics-based formative design approach, we developed a culturally-relevant pictorial aid to assess usability and preference when compared to a Likert-type self-report measure. Ninety percent (n = 27) of substudy participants preferred the pictorial of a traditional Bolga basket over a shallow basket. Forty-three percent (n = 13) preferred the pictorial aid over the Likert-type measure. Fifty percent reported the pictorial aid was easy to use. Fifty-seven percent preferred the Likert-type measure, potentially because English proficiency is regarded in Ghana as a means of upward social and financial mobility. Such cultural norms may have contributed to the lack of consensus and must be considered for pictorial aids to be meaningful. Pictorial aids have been designed for use in clinical and research settings. They reduce barriers associated with lower textual literacy while facilitating comprehension and decision-making.

Prevalence and correlates of depression among caregivers of children living with HIV in Ghana: findings from the Sankofa pediatric disclosure study.

Prior studies show an association between caregiver depression and child health outcomes. There has been little examination of depression among caregivers of HIV-infected children in sub-Saharan countries where pediatric HIV is concentrated. Using baseline data collected in the pediatric HIV disclosure intervention trial, Sankofa, we examined the prevalence and factors associated with depression among caregivers (N = 446) of children infected with HIV in Ghana. Data were analyzed with descriptive and regression analyses. The mean age of the caregivers was 42.2 ± 10.4 years. Eighty percent of the caregivers were female and 59% were HIV-infected. Twenty-eight percent (n = 126) of the caregivers were found to have mild to severe depression. In the adjusted model, factors significantly associated with caregiver depression included: HIV-positive caregiver status (P = 0.04), low income (P = 0.02), lower social support, (P = 0.01), lower HIV knowledge, (P = 0.01), worse HIV illness perceptions (P≤0.001), and greater perceived HIV stigma (P≤0.001). Although we found a high prevalence of depression among our study participants, several of the risks factors identified are modifiable and amenable to interventions that are locally available and affordable.

Organ damage in sickle cell disease study (ORDISS): protocol for a longitudinal cohort study based in Ghana.

INTRODUCTION: Sickle cell disease is highly prevalent in Africa with a significant public health burden. Nonetheless, morbidity and mortality in sickle cell disease that result from the progression of organ damage is not well understood. The Organ Damage in Sickle Cell Disease Study (ORDISS) is designed as a longitudinal cohort study to provide critical insight into cellular and molecular pathogenesis of chronic organ damage for the development of future innovative treatment. METHODS AND ANALYSIS: ORDISS aims to recruit children aged 0-15 years who attend the Kumasi Centre for Sickle Cell Disease based at the Komfo Anokye Teaching Hospital in Kumasi, Ghana. Consent is obtained to collect blood and urine samples from the children during specified clinic visits and hospitalisations for acute events, to identify candidate and genetic markers of specific organ dysfunction and end-organ damage, over a 3 year period. In addition, data concerning clinical history and complications associated with sickle cell disease are collected. Samples are stored in biorepositories and analysed at the Kumasi Centre for Collaborative Research in Tropical Medicine, Ghana and the Centre for Translational and International Haematology, University of Pittsburgh, USA. Appropriate statistical analyses will be performed on the data acquired. ETHICS AND DISSEMINATION: Research ethics approval was obtained at all participating sites. Results of the study will be submitted for publication in peer-reviewed journals, and the key findings presented at national and international conferences.