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Youth living with HIV (YLH) have poorer health outcomes than adults and may benefit from additional psychosocial support (1). Poor medication adherence, loss to follow-up, and mortality are common challenges among YLH receiving HIV care in high-burden countries in sub-Saharan Africa (SSA). Youth HIV disclosure to others has benefits and could facilitate support for adherence, emotional health, and overall HIV care (2–4). However, disclosure is often challenging; frequently, there is fear that self-disclosure may result in negative outcomes such as shame and stigma (5–7). As a result, disclosure is often limited to a few trusted people, even within the family setting (8). YLH self-disclosure is based on trust and may vary across settings. In Kenya, a study found that youth older than 18 years were more likely to self-disclose to family members than to non-family members (1). Prior studies also suggest that YLH self-disclosure to peers and sexual partners including those who are married is low (1, 2). A systematic review of studies conducted in SSA found that disclosure challenges were an important issue for YLH and support within the school setting was inconsistent (3, 4).

As HIV treatment has improved over time, morbidity and mortality have decreased for children and adolescents and the majority of YLH are enrolled in schools. Disclosure to school staff or peers has the potential to increase support to YLH for adherence to medication and clinic visits. However, few YLH disclose their HIV status to anyone in their school community, often resulting in a lack of support for medication storage, adherence, and clinic attendance (9, 10). Often, YLH are conditioned to maintain the secrecy of their HIV status to avoid negative responses such as rejection (4, 5).

For YLH in boarding schools—which is common in sub-Saharan Africa, especially for secondary education—disclosure is particularly critical to obtain support for medication storage, reminders, and psychosocial support. For those in day school, storage for medications and medication reminders can happen at home. Obtaining permission to miss classes in order to attend a clinic during school hours is challenging without disclosure in both boarding and day schools. In addition, YLH could greatly benefit from psychosocial support and gain a sense of acceptance within the school setting. It is also during this phase of development that youth are developing meaningful relationships with peers and there could be fear that disclosure of their HIV status may jeopardize this. Careful and structured disclosure to staff and peers at school is therefore critical to obtaining support for medication adherence, clinic visits, and psychosocial support (9, 11).

The data on how YLH and caregivers navigate HIV disclosure in the school setting are scarce. A better understanding of caregiver and YLH disclosure experiences within the school environment would provide relevant information that could support the development of interventions aimed at improving HIV disclosure at school. This study sought to understand caregiver and YLH experiences and perceptions of HIV disclosure in the school environment using in-depth interviews.

This qualitative study was conducted between March and October 2021 at 12 HIV clinics across three counties (Nairobi, Kajiado, and Homabay) in Kenya with an adult HIV prevalence ranging between 4% and 21% (12). Eligible participants were recruited by study staff during their regular clinic appointments. YLH were eligible if they were aged 14–19 years, aware of their HIV status (confirmed by the caregiver and healthcare worker), had ever been on antiretroviral therapy (ART) while in school, and provided informed consent/assent. Caregivers were eligible if they were the primary caregiver for YLH, aged ≥18 years, and provided informed consent. YLH in both boarding and day schools were included. Caregivers and youth aged 18 years provided informed consent.

We interviewed 24 caregivers and 28 YLH. Among the caregivers interviewed, 3(12%) were men and the median age (IQR) was 44 (38, 49). The majority, 21(88%), were a parent to YLH and (9) 38% had YLH who had been to boarding school (Table 1). Of the YLH who participated in this study, 13 (46%) were boys and their median age (IQR) was 17 (13, 14). There were 10(36%) YLH enrolled in primary school and those in boarding school were 11 (39%). More than half (64%) of their caregivers were living with HIV and those paired with their caregivers for this interview were 13 (46%). Only a few (18%) YLH had been on ART for <5 years (Table 2).

We purposively sampled YLH across 4 different categories: YLH in boarding school (8 IDIs), those in day school (8 IDIs), those transitioning to a new school in the next academic year (8 IDIs), and those who had changed schools in the past year (4 IDIs). These categories provided a balanced representation of youth in different school settings as well as views on considerations made during the transition to different school settings. We used semi-structured interview guides that were pilot-tested and refined. Interviews focused on YLH's experiences with medication use and storage, obtaining permissions for clinic attendance, experiences/perspectives on disclosure in school, stigma in the school environment, factors influencing school choice, and strategies to improve YLH experience in school. There were five main questions in the youth interview guide and seven questions in the caregiver interview guide. Each guide had several predetermined probes (Table 3). Interviews were conducted by an experienced qualitative researcher (HM) either by phone (at home) or in person (in the clinic) in English or Kiswahili depending on YLH/caregiver preference. Interviews lasted 20–45 min and were audio-recorded, translated as needed, and transcribed verbatim. Saturation was determined when no new themes emerged based on the researchers' (HM and INN) review of the interviews and debrief summaries.

The transcripts were then uploaded to Atlas.ti 9 for coding and thematic analysis (15). Two coders (INN and HM) then developed a codebook through an iterative process. Initially, each coder read four transcripts and developed initial codes and their definitions. The codebook was further refined and tested on additional transcripts. Once the final codebook was agreed upon, each coder did coding for half of the transcripts (primary coding) followed by a review of each other's coded transcripts (secondary coding). Disagreements were resolved through discussion and consensus.

The study received ethical approval from the Kenyatta National Hospital Ethical Review Committee (Ref: P320/06/2020). Approval was also obtained from county administrators and clinic leadership.

The findings from this study were categorized into four themes: (1) caregivers and YLH recognize that disclosure at school is beneficial; (2) disclosure is often difficult and stressful mainly as a result of fear of stigma; (3) mistrust of school staff was often a barrier to disclosure; and (4) disclosure often resulted in positive post-disclosure experiences.

Caregivers and YLH who participated in this study highlighted the significant advantages of disclosure at school while underscoring that the process is challenging. Disclosure to school staff was reported as an important step to ensure adherence to medication, psychosocial support, and permission to attend a clinic during school time. However, disclosure was also mired in fear of stigmatization. Caregivers and youth did not trust that school staff or peers would keep their HIV status confidential nor necessarily respond to the disclosure in a supportive manner. However, those who did disclose their HIV status to school staff largely had a positive outcome and received the support they needed for successful care.

Adolescence is a period of rapid physical, cognitive, and psychosocial growth and is associated with many challenges (16). Evidence points to the need for strategies focused on improving youth health during this period as they transition to adulthood and through school transitions (17). Structural factors such as access to education, and environmental factors such as safe and supportive families and schools are important during this period (13). Young people love to have a sense of belonging within a family, among peers, and in a supportive community environment to enable them to stay healthy (18). This is especially critical for YLH who have additional challenges with stigma, parental loss, and managing a chronic illness.

As mentioned in our study, other studies have reported that HIV disclosure is difficult due to fear that others' knowledge of one's status will result in stigma and discrimination (3, 14, 19). However, our study focuses on disclosure barriers specific to school-going YLH. In both boarding and day schools, there are expectations of conformity to standard schedules, which may negatively impact YLH's ability to adhere to medication or clinic visits. Although school staff could potentially facilitate the navigation of these institutional barriers, YLH and caregiver mistrust of school staff was common in our study, and other coping mechanisms such as substituting illness were used to either get permission to attend the clinic or explain daily medication use to peers, similar to what was found in Uganda (7, 18). Selective disclosure within the family and to peers may be easier as it is based on trust built over time whereas disclosure to teachers/school staff may be more challenging as they are seen as a source of authority and are often unfamiliar at the outset (3, 14, 19–21).

Although theoretically, schools may be an ideal venue to offer support to YLH, they often lack structured support systems for disclosure of HIV status and medication adherence (10, 16, 22, 23). For example, providing detailed and correct information about HIV has been shown to reduce stigma in community settings and could be adapted for school settings (24, 25). In a recent boarding school-based intervention (Red Carpet Program) implemented in some boarding schools in Kenya, school-wide HIV education followed by disclosure education for focal persons on the school health committee or who serve as Adolescent Health advocates resulted in better linkage to care (26). Subsequently, YLH who were supported to disclose to school staff were offered treatment literacy education, counseling, medication storage, and easy access as well as support for clinic visits (26). The development of close partnerships between schools and stakeholders who are already providing support to YLH such as health facility staff at HIV care clinics is useful (22).

In summary, disclosure of HIV status at school is key to receiving medication adherence support but is often hampered by stigma, which negatively impacts YLH clinical outcomes. Schools can support the disclosure process through policies that address caregiver and YLH fears and support decision-making. They can also provide guidance at school entry on whom to disclose to and about available post-disclosure support. Positive experiences with disclosure can be leveraged to encourage more YLH and caregivers to disclose.

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

The studies involving human participants were reviewed and approved by Kenyatta National Hospital/University of Nairobi Ethics and Research Committee. Written informed consent to participate in this study was provided by the participants' legal guardian/next of kin.

IN obtained study funding and served as the principal investigator. HM conducted interviews. IN, HM, and GO'M developed the codebook and conducted the analysis. IN and HM wrote the first draft of the manuscript. CM, AM, FN, CA, AW, GJ-S, and II reviewed the manuscript. All authors contributed to the article and approved the submitted version.