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Ecological Momentary Assessment (EMA) is an important methodology to understand risky behaviour and holds promise for HIV research. EMA is still novel in sub-Saharan Africa. We describe challenges and lessons learned on a novel study implementing mobile phone EMAs with adolescent boys in South Africa. The Tsamaisano study was a longitudinal study from 2020-2023 to recruit adolescent boys aged 15-19 years; including those without HIV and those perinatally infected and living with HIV. Participants were prompted to complete 52 weekly mobile phone survey on emotional state, exposure to and perpetration of violence, and sexual risk behaviour. Surveys were delivered using a random algorithm to choose the day. We incorporated mechanisms to assess challenges and optimize survey completion: weekly team meetings with youth representation and real-time data monitoring. Additionally, 20 frequent vs infrequent survey submitters participated in qualitative interviews about barriers and recommendations. Real-time monitoring indicated low (defined as <50%) survey completion in the first months of study implementation. To ensure that both the adolescent participant and their caregiver understood the commitment required for successful EMA, we created and implemented a guided discussion around mobile phone access during the enrolment visit. We identified a need for increased and ongoing technical support; addressed by creating technical guides, implementing a standard two-week check-in call after enrolment, adding an automated request button for call-back assistance, creating a WhatsApp messaging stream, and reaching out to all participants failing to submit two sequential surveys. Entry-level smartphones, including those initially distributed by the study, did not have capacity for certain updates and had to be replaced with more expensive models. Participants struggled with randomly allocated survey days; completion improved with set completion days and targeted reminder messages. Together, these steps improved survey completion from 40% in December 2020 to 65% in April 2022. We describe key lessons learned to inform future study designs with mobile phone EMAs, drawing on our experience implementing such among adolescent boys, including persons living with HIV, in a low-and-middle income setting. The key lessons learned through the Tsamaisano study are important to inform future study designs with EMA utilizing mobile phone, electronic data collection among adolescent boys in low-and-middle-income settings.

RESUMEN

Awareness of Human Immunodeficiency Virus (HIV) status improves health outcomes in children living with HIV, yet caregivers often delay disclosure. This qualitative investigation explored, through observation, how 30 caregivers responded to a HIV Disclosure study conducted between 2017 and 2020 at Chris Hani Baragwanath Academic Hospital, Soweto, South Africa. Caregivers were assisted in disclosing to their children, aged 7-13 years; followed by a sub-sample of caregivers providing in-depth interviews to elaborate on findings.1) Barriers to disclosure included: caregivers being ill equipped, the fear of negative consequences and children considered lacking emotional or cognitive readiness. 2) Deflecting diagnosis from their children and the need for medication, motivated caregivers to disclosure. 3) Apprehension was evident during disclosure; however, overall disclosure was a positive experience with the support of the healthcare providers. These results highlight the significant role healthcare providers' play in supporting caregivers through the disclosure process.

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RESUMEN

The benefits of HIV status disclosure to children is widely cited. However, few studies have reported how children respond to the process in a longitudinal fashion. This paper describes children's responses, as documented by healthcare providers (HCPs), during a longitudinal disclosure study conducted at Chris Hani Baragwanath Academic Hospital in Soweto, South Africa. Two HCPs facilitating disclosure recorded observations of 30 participating children (60% female), aged 7-13 years. Participants attended an average of six disclosure counseling sessions over 78 weeks. Observations documented by HCPs included the child's behavior and expressed emotions during the disclosure counseling sessions. The data was analyzed using content analysis. Mixed responses were observed in children who received full disclosure (27/30), with more children responding with strong negative emotions (16/27). However, 10 of those responded well to reassurance, and emotionally improved over subsequent sessions. Improvements were also observed in the communication and relationship between caregivers and children (17/30). Although most children understood the disclosure content (17/30), many were avoidant of the topic of HIV (16/30). With the understanding of the complex range of emotions elicited by HIV disclosure, we can better prepare HCPs on what to anticipate and train caregivers to further manage negative responses post-disclosure. This in turn may lead to more positive experiences of disclosure and the child's healthy acceptance of their HIV status.

RESUMEN

OBJECTIVE: The aim of this study was to describe the disclosure process in children with perinatally acquired HIV infection (PHIV+) and its impact on their emotional well-being and adherence to antiretroviral therapy (ART) in South Africa. METHODS: This prospective cohort study followed PHIV+ children aged 7 to 13 years attending counseling over 18 months. Standardized disclosure tools were used by a counselor with both child and caregiver present. Assessments included the Child Behavior Checklist (CBCL), Vineland Adaptive Behavior Scale (VABS), Child Depression Inventory (CDI), and Revised Children's Manifest Anxiety Scale (RCMAS). Adherence to ART was recorded through pharmacy pill returns. Changes over time and their differences from baseline were assessed by linear mixed models. RESULTS: Thirty children with median age 10 years (interquartile range [IQR]: 9.0-11.0) were enrolled. The median time to disclosure was 48 weeks (IQR: 48.0-54.6). There was a significant decrease from baseline (p < 0.0001) and over time (p = 0.0037) in the total CDI score. A positive trend in the changes from baseline and over time was observed for internalizing (p values < 0.0001) and externalizing (p values < 0.0001) CBCL scales and Total Anxiety score of the RCMAS (p < 0.0001 and p < 0.0002, respectively). Only the Defensiveness median T-score increased during the follow-up (p = 0.004) and in the change from baseline (p = 0.0005). The adaptive (p = 0.0092) and maladaptive (p < 0.0001) scores of the VABS showed a decrease from baseline. ART adherence remained high throughout this study. CONCLUSION: Disclosure does not worsen the child's emotional well-being and adherence to ART over time. This study adds to research from low- and middle-income countries to alleviate fears that disclosure may have an adverse outcome on children with PHIV+.

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