"I have never talked to anyone to free my mind" - challenges surrounding status disclosure to adolescents contribute to their disengagement from HIV care: a qualitative study in western Kenya.

INTRODUCTION: Adolescents living with HIV (ALHIV, ages 10-19) experience complex barriers to care engagement. Challenges surrounding HIV status disclosure or non-disclosure to adolescents may contribute to adolescent disengagement from HIV care or non-adherence to ART. We performed a qualitative study to investigate the contribution of disclosure challenges to adolescent disengagement from HIV care. METHODS: This was a qualitative study performed with disengaged ALHIV and their caregivers, and with healthcare workers (HCW) in the Academic Model Providing Access to Healthcare (AMPATH) program in western Kenya. Inclusion criteria for ALHIV were ≥1 visit within the 18 months prior to data collection at one of two clinical sites and nonattendance ≥60 days following their last scheduled appointment. HCW were recruited from 10 clinics. Analysis was conducted by multiple independent coders, and narratives of disclosure and care disengagement were closely interrogated. Overarching themes were elucidated and summarized. RESULTS: Interviews were conducted with 42 disengaged ALHIV, 32 caregivers, and 28 HCW. ALHIV were average age 17.0 (range 12.9-20.9), and 95% indicated awareness of their HIV diagnosis. Issues surrounding disclosure to ALHIV presented important barriers to HIV care engagement. Themes centered on delays in HIV status disclosure; hesitancy and reluctance among caregivers to disclose; struggles for adolescents to cope with feelings of having been deceived prior to full disclosure; pervasive HIV stigma internalized in school and community settings prior to disclosure; and inadequate and unstructured support after disclosure, including for adolescent mental health burdens and for adolescent-caregiver relationships and communication. Both HCW and caregivers described feeling inadequately prepared to optimally handle disclosure and to manage challenges that may arise after disclosure. CONCLUSIONS: Complex challenges surrounding HIV status disclosure to adolescents contribute to care disengagement. There is need to enhance training and resources for HCW, and to empower caregivers to support children and adolescents before, during, and after HIV status disclosure. This should include counseling caregivers on how to provide children with developmentally-appropriate and accurate information about their health from an early age, and to support adolescent-caregiver communication and relationships. Optimally integrating peer support can further promote ALHIV wellbeing and retention in care.

'We are not going anywhere': a qualitative study of Kenyan healthcare worker perspectives on adolescent HIV care engagement during the COVID-19 pandemic.

INTRODUCTION: Adolescents living with HIV (ALHIV) may be vulnerable to widescale impacts of the COVID-19 pandemic and to health system responses which impact HIV care. We assessed healthcare worker (HCW) perspectives on impacts of the COVID-19 pandemic on adolescent HIV care delivery and engagement in western Kenya. METHODS: We performed in-depth qualitative interviews with HCW at 10 clinical sites in the Academic Model Providing Access to Healthcare in Kenya, from January to March, 2021. Semistructured interviews ascertained pandemic-related impacts on adolescent HIV care delivery and retention. RESULTS: Interviews were conducted with 22 HCWs from 10 clinics. HCWs observed adolescent financial hardships, unmet basic needs and school dropouts during the pandemic, with some adolescents relocating to rural homes, to partners or to the street. Marked increases in adolescent pregnancies and pregnancy complications were described, as well as barriers to family planning and antenatal care. Transportation challenges and restrictions limited access to care and prompted provision of multi-month refills, refills at local dispensaries or transfer to local facilities. Adolescent-friendly services were compromised, resulting in care challenges and disengagement from care. Clinic capacities to respond to adolescent needs were limited by funding cuts to multidisciplinary staff and resources. HCW and youth peer mentors (YPMs) demonstrated resilience, by adapting services, taking on expanded roles and leveraging available resources to support adolescent retention and access to care. CONCLUSIONS: ALHIV are uniquely vulnerable, and adolescent-friendly services are essential to their treatment. The combined effects of the pandemic, health system changes and funding cuts compromised adolescent-friendly care and limited capacity to respond to adolescent needs. There is a need to reinforce adolescent-friendly services within programmes and funding structures. Support for expanded YPM roles may facilitate dedicated, scalable and effective adolescent-friendly services, which are resilient and sustainable in times of crisis.

"Who am I going to stay with? Who will accept me?": family-level domains influencing HIV care engagement among disengaged adolescents in Kenya.

INTRODUCTION: Adolescents living with HIV (ALHIV, ages 10-19) have developmentally specific needs in care, and have lower retention compared to other age groups. Family-level contexts may be critical to adolescent HIV outcomes, but have often been overlooked. We investigated family-level factors underlying disengagement and supporting re-engagement among adolescents disengaged from HIV care. METHODS: Semi-structured interviews were performed with 42 disengaged ALHIV, 32 of their caregivers and 28 healthcare workers (HCW) in the Academic Model Providing Access to Healthcare (AMPATH) program in western Kenya, from 2018 to 2020. Disengaged ALHIV had ≥1 visit within the 18 months prior to data collection at one of two sites and nonattendance ≥60 days following their last scheduled appointment. HCW were recruited from 10 clinics. Transcripts were analysed through thematic analysis. A conceptual model for family-level domains influencing adolescent HIV care engagement was developed from these themes. RESULTS: Family-level factors emerged as central to disengagement. ALHIV-particularly those orphaned by the loss of one or both parents-experienced challenges when new caregivers or unstable living situations limited support for HIV care. These challenges were compounded by anticipated stigma; resultant non-disclosure of HIV status to household members; enacted stigma in the household, with overwhelming effects on adolescents; or experiences of multiple forms of trauma, which undermined HIV care engagement. Some caregivers lacked finances or social support to facilitate care. Others did not feel equipped to support adolescent engagement or adherence. Regarding facilitators to re-engagement, participants described roles for household disclosure; and solidarity from caregivers, especially those also living with HIV. Family-level domains influencing HIV care engagement were conceptualized as follows: (1) adolescent living situation and contexts; (2) household material resources or poverty; (3) caregiver capacities and skills to support adolescent HIV care; and (4) HIV stigma or solidarity at the household level. CONCLUSIONS: Family-level factors are integral to retention in care for ALHIV. The conceptual model developed in this study for family-level influences on care engagement may inform holistic approaches to promote healthy outcomes for ALHIV. Developmentally appropriate interventions targeting household relationships, disclosure, HIV stigma reduction, HIV care skills and resources, and economic empowerment may promote adolescent engagement in HIV care.

Barriers to ART adherence among school students living with HIV in Kenya.

HIV has transformed from a serious acute illness with high rates of morbidity and mortality to a fairly easily managed chronic disease. However, children and adolescents living with HIV are yet to achieve similar improvement in their HIV care outcomes compared to adults. There have been a number of studies assessing the reasons for slower improvement in these age categories, mainly focusing on health systems, drug- and family- related barriers to ART adherence in children. We sought to explore school-related barriers to adherence through in-depth interviews with students living with HIV (SLHIV) aged 13-17 years who had fully disclosed their HIV status in western Kenya. Data was analysed using NVivo 8™. The study found that stigmatisation in the form of negative discussions and alienation, fear of unintended disclosure (due to the drug packaging and lack of privacy while taking their pills) were barriers to ART adherence among these SLHIV. Other barriers included challenges with drug storage while in school and the complexity of coordinating school and clinic-related activities and a lack of structured support systems in schools. In addition to hindering their adherence to ART, these barriers resulted in negative emotions (anger, sadness, frustration) and affected school performance. This study found fairly serious barriers to ART adherence among SLHIV, which calls for structured communication and coordinated support between government ministries of health and education in Kenya.

"I just keep quiet about it and act as if everything is alright" - The cascade from trauma to disengagement among adolescents living with HIV in western Kenya.

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.