Mobile technologies represent potentially novel and scalable intervention delivery platforms for adolescents living with HIV (ALWH) in low- and middle-income countries. We conducted a prospective, mixed methods pilot study to evaluate the acceptability and feasibility of the WhatsApp® platform to deliver individual counseling services and facilitate peer support for ALWH in western Kenya. Thirty ALWH (17 female, mean age 15.4) on ART, engaged in HIV care and aware of their status, were enrolled. After 6 months, participants described their experiences with the intervention. Treatment adherence, stigma, and mental and behavioral health were assessed prospectively. Participants reported overall positive experiences and indicated that the platform encouraged peer network development. They endorsed potential benefits for treatment adherence, stigma reduction, and mental and behavioral health. All participants supported intervention expansion. In western Kenya, WhatsApp® was an acceptable and feasible platform for mobile counseling and peer support for ALWH.
Adolescents living with HIV (ALHIV, ages 10-19) are retained in care at low rates, resulting in poor clinical outcomes. We sought to define barriers and facilitators to retention experienced by perinatally-infected ALHIV in western Kenya. This qualitative study purposefully sampled hospitalized ALHIV (both engaged and not currently engaged in care), ALHIV engaged in outpatient care, and caregivers of ALHIV. In total, 116 ALHIV and caregivers participated in interviews or focus group discussions. Complex challenges related to the effects of both stigma and poverty at multiple socio-ecological levels pose the greatest barriers to adolescent retention in HIV care. Adolescents with positive relationships with family, clinic, and/or peers with the resources to support their care are facilitated to overcome these barriers. Conversely, adolescents with few of these supports due to orphanhood, caregiver illness, severe poverty, family conflicts, negative relationships with healthcare workers, or isolation, have the greatest challenges staying in care, and may be at risk of disengagement. Emerging from narratives of disengagement are experiences of trauma, which contribute to isolation, mental health challenges, and difficulties engaging in care. Retention of the most vulnerable adolescents will require interventions to mitigate the impacts of stigma, poverty, mental health issues, and limited social support on their engagement in HIV care.
Introduction
There are approximately 1.7 million adolescents living with HIV (ALHIV, ages 10 to 19) globally, including 110,000 in Kenya. While ALHIV experience poor retention in care, limited data exist on factors underlying disengagement. We investigated the burden of trauma among disengaged ALHIV in western Kenya, and its potential role in HIV care disengagement.
Methods
We performed in‐depth qualitative interviews with ALHIV who had disengaged from care at two sites, their caregivers and healthcare workers (HCW) at 10 sites, from 2018 to 2020. Disengagement was defined as not attending clinic ≥60 days past a missed scheduled visit. ALHIV and their caregivers were traced through phone calls and home visits. Interviews ascertained barriers and facilitators to adolescent retention in HIV care. Dedicated questions elicited narratives surrounding traumatic experiences, and the ways in which these did or did not impact retention in care. Through thematic analysis, a conceptual model emerged for a cascade from adolescent experience of trauma to disengagement from HIV care.
Results
Interviews were conducted with 42 disengaged ALHIV, 34 caregivers and 28 HCW. ALHIV experienced a high burden of trauma from a range of stressors, including experiences at HIV disclosure or diagnosis, the loss of parents, enacted stigma and physical or sexual violence. A confluence of factors – trauma, stigma and isolation, and lack of social support – led to hopelessness and depression. These factors compounded each other, and resulted in complex mental health burdens, poor antiretroviral adherence and care disengagement. HCW approaches aligned with the factors in this model, suggesting that these areas represent targets for intervention and provision of trauma‐informed care.
Conclusions
Trauma is a major factor underlying disengagement from HIV care among Kenyan adolescents. We describe a cascade of factors representing areas for intervention to support mental health and retention in HIV care. These include not only the provision of mental healthcare, but also preventing or addressing violence, trauma and stigma, and reinforcing social and familial support surrounding vulnerable adolescents. In this conceptualization, supporting retention in HIV care requires a trauma‐informed approach, both in the individualized care of ALHIV and in the development of strategies and policies to support adolescent health outcomes.
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