“They should show them love even if their status of being HIV positive is known”: Youth and caregiver stigma experience and strategies to end HIV stigma in schools

Abstract

Background

HIV stigma and discrimination is widespread in sub-Saharan Africa and is associated with poor clinical outcomes including among youth living with HIV (YLH). Schools play a critical role in the life of youth and have been identified as a potentially stigmatizing environment but remain understudied. We sought to explore school HIV stigma drivers, facilitators, manifestations, and outcomes among YLH as well as potential stigma reduction interventions.

Setting

12 HIV clinics in Kenya.

Methods

Semi-structured in-depth qualitative interviews with 28 school going YLH aged 14–19 and 24 caregivers of YLH were analyzed using directed content analysis. Results were summarized using the Health and Stigma Framework.

Results

Drivers and facilitators of HIV stigma in the school environment included misconceptions about HIV transmission, HIV treatment outcomes, and long-term overall health of people living with HIV. HIV stigma manifested largely as gossip, isolation, and loss of friendships. Fear of HIV stigma or experienced stigma resulted in poor adherence to antiretroviral treatment –particularly among YLH in boarding schools – and poor mental health. Stigma also impacted school choice (boarding versus day school) and prevented HIV disclosure to schools which was necessary for optimal support for care. Proposed interventions to address HIV stigma in schools included HIV education, psychosocial support for YLH, support for HIV disclosure to schools while ensuring confidentiality and building YLH resilience.

Conclusion

There is urgent need to develop interventions to address HIV stigma in schools to ensure optimized health and social outcomes for YLH. Future studies to understand the most effective and efficient interventions are needed.

Introduction

Youth living with HIV (YLH) are a priority population in the race to reach the UNAIDS 95-95-95 goals(1). All indicators targeted in the goals, 95% of those with HIV know their status, 95% of them are on antiretroviral therapy (ART) and 95% of those on ART are virally suppressed, remain low among YLH(2). Although treatment options have significantly improved, keeping YLH in HIV care and maintaining viral suppression remains challenging(3,4). Navigating the adolescent period can be especially difficult for YLH; in addition to the typical physical, social and emotional changes of adolescence, they learn of their HIV status and are expected to transition to adult oriented or independent care(5–7).

HIV stigma and discrimination is widespread in sub-Saharan Africa, and is a common stressor for YLH (8,9). HIV stigma has negative effects on the physical, social, and financial well-being of people living with HIV(10). Stigma has direct implications for HIV outcomes among YLH, resulting in poor medication adherence and missed clinic visits (11,12). It also increases the risk of psychological problems and is associated with depression symptoms that may result in poor health outcomes(13,14). Further, stigma is a barrier to HIV disclosure, resulting in poor support for HIV care.

YLH HIV clinical care is largely offered in clinic settings with households playing a role in psychosocial and adherence support as well as facilitating clinic visits. However, schools are central to the life of children and youth and the majority of YLH in Kenya are enrolled in schools (15). Compared to the home or clinic environment, YLH spend a larger proportion of their daytime in schools. Boarding schools are common in sub-Saharan Africa (SSA) countries and youth may spend up to 9 calendar months in the school environment. Unfortunately, stigma and discrimination perpetuated by school staff and peers is frequent in the school community (11,16). Perceived or manifested stigma may result in school drop-out, minimizing academic potential and further perpetuating social disparities among YLH (11,12,14). A guide to support YLH in Kenyan schools was published in 2019 but has not been widely implemented(17,18). To optimize both health and social outcomes for YLH, there is a critical need to address stigma in the school environment.

There is clear evidence that successful stigma interventions must target multiple levels of stigma (individual, interpersonal, community, organizational/institutional and governmental/structural level) (19). However, few interventions have focused on stigma reduction for YLH and even fewer target multiple levels (20). A systematic review on interventions to reduce HIV stigma in schools identified only 2 studies, both of which showed a significant reduction in HIV stigma in school through teacher training (21). The health and stigma framework(22) provides a systematic approach to understand and identify interventions to address stigma across multiple stigmatized illnesses. It focuses on the stigmatization process across the socio-ecological model, starting with drivers and facilitators of stigma, then stigma manifestations, and outcomes among affected populations and institutions.

In this qualitative analysis, we used the health and stigma framework to study stigma drivers and facilitators, stigma manifestations, and outcomes among YLH enrolled in schools. Further, we sought to explore YLH and caregiver perspectives on potential interventions in the school environment that could address stigma.

Methods

This work was part of a larger study to understand the role of schools in supporting HIV treatment outcomes for YLH. The primary study running 2020–2025 includes surveys with schools, qualitative interviews with YLH and their caregivers, policy makers, school heads and school health staff and an intervention development workshop to identify potential school based interventions for Kenyan YLH. We collected qualitative data from YLH and caregivers of YLH in Kenya. Participants were selected from 12 HIV clinics across 3 counties with varied HIV prevalence, including Homa Bay (adult prevalence of 21%), Nairobi (adult prevalence of 6%) and Kajiado (adult prevalence of 4%) (23). Homa Bay has ~20,000 youth age 15–19 living with HIV, Nairobi ~25,000 and Kajiado ~3000(23). Clinics were purposively selected as they had participated in previous studies assessing the effectiveness of an adolescent transition package to effectively transition youth to adult HIV care(24).

Study design:

Descriptive phenomenological design.

Ethical approvals:

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

Data collection:

YLH were eligible to participate if they were age14–19 years, had ever been on ART while attending school, were aware of their HIV status and were willing to give consent to participate. YLH age <18 were required to have parental consent and YLH assent to participate. Study staff confirmed with caregivers (person primarily responsible for the care of the YLH), health care workers and with YLH that YLH were aware of their HIV status before conducting interviews. Caregivers were eligible to participate if they were a primary caregiver to a YLH, were age >18 years and were willing to give informed consent to participate. During routine clinic visits, clinic staff read a recruitment script to potential YLH participants and referred those interested in the study to a study staff for more information and informed consent procedures.

To ensure the IDIs captured diverse YLH experiences, YLH were purposively sampled across 4 different categories: those 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). Interviews focused on pre-prepared questions and prompts on YLH experiences with medication use and storage, obtaining permissions for clinic attendance, stigma in the school environment, factors influencing school choice and strategies to improve YLH experience in school. The interview guide was pilot tested with two YLH and two parents of youth prior to the interviews. The interviews guides were reviewed by INN and HM and refined following the piloting.

Interviews were led by an experienced female Kenyan interviewer (HM, Bsc. Nursing, qualitative interviewer and research coordinator) with six years conducting qualitative research and were conducted either by phone (at home) or in-person (in clinic) with no-one else other than the researchers in English or Kiswahili depending on YLH/caregiver preference. HM contacted participants to schedule interviews prior to the IDI where she explained IDI procedures and responded to participant concerns. The interviewer (HM) is early-stage researcher with interest in HIV care for children and youth living with HIV. Interviews lasted 20–45 minutes and were audio-recorded, translated as needed and transcribed verbatim. Debrief reports were prepared at the end of the interview. No repeat interviews were conducted, and no transcripts were returned to participants. Data saturation was determined when no new themes seemed to emerge from the interviews from debrief notes and HM experience,

Data analysis:

Interview transcripts were analyzed using directed content analysis. The codebook was developed using both deductive and inductive approaches. Inductive codes were added through multiple reviews of the transcripts. Deductive codes were created from the Health and Stigma Framework(22). The codebook was developed by 2 investigators (INN and HM) and reviewed by GO, then refined iteratively using YLH and caregiver transcripts to ensure all themes were addressed. Transcripts were coded by 2 investigators independently (INN and HM) using ATLAS.ti9 version 9.0.0.214 (15.12.2021 19:43:22)(25). Each investigator conducted primary coding for half of the transcripts, then switched transcripts for secondary coding. Discrepancies were resolved through discussion to reach a consensus. Results are summarized using constructs of the health and stigma framework: drivers and facilitators of stigma, stigma manifestations, outcomes among YLH and institutions. Participants did not provide feedback on findings.

Results

Population characteristics

In-depth interviews (IDIs) were conducted between March and October 2021. Overall, 42 YLH and 28 caregivers were recruited to participate in interviews with 14 YLH and 4 caregivers not interviewed as they were unavailable or could not be reached for the interviews. A total of 28 YLH and 24 caregivers were interviewed. Of these, median age was 17 years, 54% were female and the majority (64%) were enrolled in secondary school. Overall, more than half (57%) had ever been to boarding school and 39% were enrolled in boarding schools at the time of the interview. All YLH were on ART, and almost all (82%) had been on ART for more than 5 years. A majority (75%) had a parent as the primary caregiver, and 64% of YLH had caregivers who were also on ART (Table 1).

Table 1:

Characteristics of YLH who participated in IDIs

Characteristic	N=28 n (%), median (IQR)
Age in years	17 (16, 18)
Female	15 (54%)
Grade level
Primary school	10 (36%)
Secondary school	18 (64%)
Ever been to boarding school	16 (57%)
Currently in boarding school	11 (39%)
On ART	28 (100%)
Duration of ART
Less than 5 years	5 (18%)
Over 5 years	23 (82%)
Primary caregiver parent	21 (75%)
Caregiver living with HIV	18 (64%)

Of the 24 caregivers interviewed, median age was 44, 88% were female, slightly over half had received post-primary education and all living with HIV (79%) were on ART. Overall, 38% of caregivers had YLH who had been to boarding school (Table 2). Overall, 13 of the caregivers interviewed were caregivers of YLH who participated in the YLH interviews.

Table 2:

Characteristics of caregivers who participated in IDIs

Characteristic	N=24 n (%), median (IQR)
Age in years	44 (38, 49)
Female	21 (88%)
Post primary education	13 (54%)
Parent of YLH	21 (88%)
HIV status positive	19 (79%)
On ART	19 (100%)
YLH has ever been to boarding school	9 (38%)

We present results of drivers of stigma in the school environment, stigma manifestation in schools, and individual and school outcomes of HIV stigma supported with verbatim, minimally edited quotes (Supplementary material Figure 1 and Table 3).

Table 3:

Additional quotes showing stigma domains, manifestations and potential interventions to address stigma in schools (Adapted from the Stigma and Discrimination Framework by Stangl et al)

Stigma domain	Example quotes	Potential interventions	Example quotes
Stigma drivers and facilitators	“This still [goes] back to society and as you know kids are products of what their parents say or do at home, HIV victims are still not accepted in the society to a point that there are those who refer to us as dead corpse walking and this mentality has trickled down in schools that even your fellow students start viewing you differently, for schools it’s a NO, nothing much they can do [to support youth living with HIV].” 18-year-old male in day school “The negative discussion people make about HIV can discourage you… especially in boarding schools where you spend like all the time with them [other students] day and night listening, it’s not easy…. better day school you will go back home in the evening…. [for example, they will say] Those with HIV cannot live for long and they give birth to children with deformities”. 16-year-old female in day school	Educate communities, teachers and other students on HIV transmission, treatment, and outcomes	“Offering guiding and counseling sessions to everyone in school including teachers [can help me or other students feel more comfortable talking about HIV] because there are teachers who make some offensive remarks which end up hurting the affected students.” 15-year-old female in day school “People should get to have more knowledge about HIV, that’s the only way they will be able to get rid of stigma.” 16-year-old male transitioning today/boarding school “I was thinking if there could be some sensitization for the teachers and the students too so that all of them can be taught what is HIV and how to survive…. live it, they be taught on stigma and discrimination this will enable them not to find it a big deal if they see somebody taking HIV meds [medicine].” Mother of 17-year-old male in boarding school “Through guidance and creating awareness to other students that HIV is a disease just like any other [can help me and other students be comfortable talking about HIV].” 19-year-old female in boarding school “Educating all students about HIV and encourage those who are already on drugs to continue taking them diligently [can help me and other students be comfortable talking about HIV].” 19-year-old female in day school
Stigma manifestations	“It’s [taking medication in school] stressful because there are some of the students who claim to know a lot but knows nothing…. whenever they see you with the container with medicine, they will always find something to talk about, so most of the time you hide yourself not to be seen….” 19-year-old female in boarding school “… school being a reflection of what our society is there are those whose main work will be to spy on you and expose you, those who will prefer to keep it confidential even after finding out and there are those who will gossip about it.” 16-year-old female transitioning to day/boarding school
Stigma outcomes: Adherence	“It [taking medication in school] was a bit difficult because I was not taking them every day… I had fear of being seen by others.” 18-year-old female who switched from day to boarding school ”At the beginning I used to be afraid [of taking medicine] and would even miss taking them, due to imagination of what my friends will say if they find out [why I am taking medicine]….” 16-year-old female in day school	Support youth/caregivers to disclose HIV status to schools while maintaining confidentiality	“In that case [youth in boarding school] I think the school can be involved through school nurse because he/she will be the only person who knows specific people and their timing for taking medicine and this should be confidential between them and the principal.” 16-year-old male in day school “Creating close relationship with some of the teachers and let them understand your status such that they won’t be pestering you with lots of questions when you go to ask for permission to hospital.” 17-year-old male switched from day to boarding school
		Structured medication storage and use policies	“For those in boarding schools the school can provide them with better storage mechanism for their medicine or allow matron or teachers to be keeping for them and make follow up to ensure they take them.” 19-year-old female in day school “That [being allowed to keep medicine on your own] is even better because you will be having good time to program yourself on how to take them rather than being inconvenienced with maybe the absence of the matron sometimes or teacher.” 17-year-old male switched from day to boarding school
Stigma outcomes: Mental Health	“I thought if the others get to know about his status [living with HIV] … you know if people start speaking about him, he can even run away and drop [out of] school. He can say he doesn’t want school for such reasons. Caregiver of YLH “The negative discussion that students have about HIV in boarding school can make one to wish to have attended day school, it’s demoralizing”. 17-year-old male in boarding school	Offer psychosocial support to YLH	“I think there should be a department in boarding school that identifies these children [living with HIV] and keep concerned about them, follow them up and talk to them maybe privately. They should provide some motherly love and some support that would encourage them to keep taking the drugs.” Cousin of 16-year-old transitioning from day/boarding school “Having a trustworthy teacher to talk to specific students by encouraging them, help to keep the medicine and also reminding them when to take [would make taking medicine in school a better experience]”. 19-year-old male in boarding school “Introducing health clubs so that people can talk and share their experience with HIV and how to overcome it [can make students more comfortable talking about HIV in schools]. 18-year-old male in day school
		Build resilience among YLH	“…those in boarding schools need to have someone to guide them and talk to them as well on how to conduct themselves and how to react to the offensive remarks that come from some students and teachers and stick to taking their medicines as per the prescription and everything will work for their good.” 16-year-old female transitioning to day/boarding school “Self-acceptance [can help avoid stigma in schools]… you have to accept your status the way you are such that when others talk about you, you won’t feel any impact.” 18-year-old female in boarding school
Stigma outcomes: schools	“There will always be lots of questions going around in school that even if you were to lie you might lack something to lie about when asked why you normally attend ‘those’ meetings [health clubs].” 19-year-old male in boarding school “It [decision to attend boarding or day school] depends with the school reputation about stigmatization, if you go to school with a bad reputation then most likely they will be aggressive when they get to know about your status.” 17-year-old male in boarding school	Make schools a stigma free environment	“…showing love to those taking drugs so as not to give up on it and also supporting them by being on their side and giving them strength and hope [can help me and other students feel more comfortable talking about HIV in school].” 15-year-old female in day school “I think most schools talk negatively about HIV which is a perception that should be changed starting with teachers down to students.” 18-year-old male in day school

Fear of HIV transmission, misconceptions on the health impacts of HIV, and inaccurate HIV knowledge drive stigmatizing behavior in schools

YLH felt that classmates may isolate them or discriminate against them out of fear of acquiring HIV through casual contact, for example through sharing common items like clothing. This was particularly an issue in boarding school where students spend more time together.

“It’s very difficult in boarding school because of the negative mentality that other students have about HIV such that they would never want to share anything personal like school shirts and buckets with the affected students unlike day school where you get everything from home, [so there is] no need to borrow.” 18-year-old female in boarding school

During discussions about HIV in school, YLH reported that some teachers perpetuated stigma by linking HIV to irresponsible sexual behavior and emphasizing negative outcomes such as poor health, poor future reproductive outcomes, and premature death. Such discussions in group settings continued to perpetuate stigma and negatively impacted YLH well-being.

“Maybe in their guidance and counseling sessions they [teachers] say ‘you should abstain from sexual activities or else you contract HIV and die.’ That statement alone if you are the affected party, it drains all your hopes of surviving and [you] start thinking about death. 19-year-old male in boarding school.

Stigma in school manifests as suspicion and gossip

Gossip, or the fear of gossip, if one’s positive HIV status was suspected was perceived as a major manifestation of stigma. YLH feared that information about their HIV status would be spread to the whole school, and everyone would be talking about them. Even if their HIV status remained unknown, YLH were cautious of any activity that would trigger suspicion and generate gossip. When asked about whether disclosure to someone at school would be supportive to them, many students thought it was too risky.

“It’s not safe because even for the students, if you share with one the next day the information will have spread across the school and to survive in an environment where everyone knows you are HIV positive will be difficult.” 18-year-old male in day school

“That [asking someone to help you address HIV related challenges] will only work for one day, the second day people will become suspicious and there will be a lot of gossips which will be the main challenge. 16-year-old female transitioning to boarding school

Challenging experiences taking medicine in school result in poor adherence and poor mental health

YLH described taking medicine in school as “weird”, “challenging”, and “difficult”. They felt they needed to always remain vigilant to avoid being seen by others taking medicine. This was especially hard for those who had not disclosed their HIV status and for those in boarding schools. Day school participants also had challenges if they needed to carry medicine to school because of early or late school schedules. Frequent adjustment of medication schedules to avoid being seen taking medicine or to reduce suspicion emanating from an observed consistent pattern of medication access behavior resulted in poor adherence.

“It’s [taking medication at school] is a bit challenging because you need to hide while taking and also when there are many people in the dormitory, you’ll fail to take [the medicine] due to the fear of being seen.” 19-year-old male in boarding school

“I used to go (to school) at around 0600hrs and at some point, was forced to carry medicine to school then take them secretly at a hidden place where no one would see me.” 16-year-old female in day school

Stigma or fear of stigma impacted self-esteem, friendships, and school performance. Self-storage of medicine was thought to be difficult as it would result in disclosure of HIV status and stigma, impacting mental health.

Question: “What if they [students] were allowed to be keeping medicine on their own, can that make it easy for them [YLH] to take?” Response: “That will be difficult because it will be known by everyone, and you will start experiencing stigmatization which make you to be stressed hence depression.” 16-year-old female in day school

School choice for some families is influenced by fear of stigma

The decision to attend day or boarding school can be difficult for YLH. While boarding school had recognized benefits, some families choose day school due to the perceived higher risk of stigma in boarding schools. For example, specific medication storage practices like storing medicine with a school staff or medication use in the presence of other students would be difficult to conceal in boarding school. When asked whether living with HIV influenced their choice of day or boarding school, several students responded that it had.

“Yes, it [living with HIV] influences [the decision to attend day or boarding school]. The negative discussion people have about HIV can discourage you and make you hate yourself. This is a boarding school challenge. In day school they talk but you go home. In boarding they keep talking [about negative outcomes of HIV] and you are there sleeping there.” 16-year-old female in day school

Another YLH described a scenario he witnessed on an opening day.

“[A] teacher who was searching students as they check in school happened to get drugs in one of the students’ bags and shouted in a quest to know what they really were before other students…. these instances might lead to stigmatization and that’s what discouraged me to attend boarding school.” 18-year-old male in day school

YLH who chose boarding schools highlighted advantages such as more time to focus on schoolwork, perceived better education, lower transport costs and the opportunity to make new friends. These potential benefits would be unavailable for YLH who elected to go to day schools for fear of stigma.

Some YLH choose boarding school despite acknowledging potential challenges.

Despite expected challenges in boarding schools, some YLH were able to respond to stigma, or developed a plan to respond to stigma, demonstrating incredible resilience. Caregivers of such youth were supportive and encouraged the YLH to pursue their life goals and attend boarding school.

“It’s difficult because for me, I do take my medicine immediately after supper and during that time you have to be watchful not to be seen by someone else. But another thing which motivates me the most is that this is my life which I have to protect it by all means…. My bed mate knows that am taking medicine and he sometimes reminds me whenever I forget to, so have got nothing to fear.” 17-year-old male in boarding school

Strategies to address stigma and support HIV care in schools

HIV education in the school community is a critical aspect of stigma reduction.

Youth and caregivers believed that HIV education for teachers, students and others in the school community was needed to correct inaccurate information on HIV, promote acceptance of other students living with HIV and be supportive of their care.

“I was thinking if there could be some sensitization for the teachers and the students too so that all of them can be taught what is HIV and how to survive live it. [If] they [were] taught on stigma and discrimination this will enable them not to find it a big deal if they see somebody taking HIV meds.” Parent of 17-year-old in boarding school

Implementing policies to support disclosure while maintaining confidentiality and structured medication use and storage policies could support HIV care

Structured policies to support disclosure were thought to be an important first step to support adherence. However, these policies required that confidentiality of HIV status be maintained, and a trusted school staff entrusted with this responsibility. Disclosure was thought to be critical for good adherence and to support adherence to clinic visits.

“[W]e only need to disclose to one person who will keep that information confidential in that even other student taking the same medication should not find out.” Parent of 14-year-old female in transitioning to boarding school

“Let’s say if my status was known by the school, then they could be supporting by helping to remind me to take medicine because sometimes I do forget.” 15-year-old female in day school

Regarding structured medication storage and use policies, there was a tension between two perspectives. While storage with a school staff was favored to ensure support, it was also associated with concerns that medication access patterns would lead to suspicion and stigma. Self-storage on the other hand was associated with risks of medicine being seen by others resulting in stigma.

“I keep them [my medication] at my luggage box… because people started to become suspicious with me going to the deputy office daily based on the fact that he is considered to be harsh, so that was not okay with me.” 19-year-old female in boarding school

“[Students keeping their own medication] will be difficult because it will be known by everyone, and you will start experiencing stigmatization which make you to be stressed hence depression.” 16-year-old female transitioning to boarding school

Offering in-school psychosocial support either individually or in a support group can support care and address YLH challenges in school

YLH and caregivers expressed the desire to have an adult they could talk to about their challenges with medication, someone who would help them obtain permission to attend clinic and who would encourage and remind them to take medicine.

“Having someone to share their challenges with… [like] a teacher [would be helpful].” 15-year-old female in day school

“There should be a teacher whom they can approach it they have a challenge taking the drugs and explain their issues. There should be a specific teacher for that purpose, the child can go explain what they want or any challenges they are having with the drugs or even when they are unwell. That can make things easier.” Parent of YLH

Some YLH thought that support groups composed of YLH could be helpful; however, others were skeptical of attending in-school support group meetings for YLH as these would raise suspicion.

“There will always be lots of questions going around in school that even if you were to lie you might lack something to lie about when asked why you normally attend ‘those’ meetings.” 19-year-old male in boarding

Ending stigma remains key to improving YLH experience in school.

Ending stigma was frequently identified as key to better medication use and would make YLH and other youth more comfortable during discussions about HIV. YLH talked about the need for others to “show love” to YLH.

“By showing love to those taking drugs so as not to give up on it and also supporting them by being on their side and giving them strength and hope.” 15-year-old female in day school

While ending stigma was the ultimate goal, reducing the impact of stigma on outcomes by building YLH resilience to face stigma was also identified as important.

“Self-acceptance, you have to accept your status the way you are such that when others talk about you, you won’t feel any impact.” 18-year-old-female in boarding school

Discussion

Stigma in the school environment was reported as an important driver of poor ART adherence and poor mental health among YLH. Stigma influenced important decisions such as school choice and disclosure of HIV status to other students and school staff who could support ART adherence. The root drivers of stigma were misconceptions about HIV transmission and HIV outcomes. Stigma manifested largely as suspicion, gossip, isolation, and loss of friendships. HIV education to the school community was thought to be an important component of addressing stigma. Accompanying measures to promote HIV care included development of chronic care policies that focused on HIV disclosure support, confidentiality of medical information, structured medication storage and use policies and psychosocial support to YLH.

Similar to other stigmatized chronic illnesses, drivers and facilitators of stigma were related to misconceptions about the illness. For epilepsy, another profoundly stigmatized condition, myths, misconceptions and misunderstandings of the condition often drive stigma(26). Other commonly stigmatized illnesses include tuberculosis and leprosy for which fear of infection is the main driver for stigma.(27,28) Across multiple stigmatized illnesses, stigma often result in poor clinical, social and economic outcomes and impacts overall well-being of stigmatized individuals. (29,30)

Schools shape YLH life trajectory and are an important gateway to future economic potential. Consistent with other studies, we found stigmatization in schools as a major contributor to poor YLH outcomes(8,9,11,16,31). Stigma prevented disclosure of HIV status to school staff and students and therefore support could not be provided. Importantly, our study identified that stigma also influenced school choice. While YLH and caregivers acknowledged the benefit of boarding school, some were hesitant to attend boarding school for fear of stigma. Boarding schools are common in SSA; in Kenya, over 60% of secondary schools have boarding facilities(18). As HIV transitions from a life-threatening condition to a chronic illness, it is critical to ensure optimization of educational opportunities for YLH, to enable them to reach their full potential.

HIV education, contact with people living with HIV and building resilience in stigmatized populations are components of stigma reduction interventions(19,32,33). Our research is consistent with other studies highlighting the need for accurate HIV information in the school (12). School staff may not recognize the growing contribution of vertical HIV transmission among youth (11,34). HIV education using videos portraying YLH experience are feasible to implement and acceptable to school communities but have not been tested(35). A 2022 systematic review identified only 2 studies that tested effectiveness of educational material to reduce stigma among teachers in SSA. Both studies resulted in a reduction of negative attitudes towards people living with HIV and improved HIV knowledge among participants(21). Adapting and testing these interventions in other contexts is warranted. YLH in our study demonstrated resilience, even in highly stigmatizing situations in boarding school, highlighting the need to include YLH resilience support in stigma reduction interventions(36). In the long run, long-acting ART regimens may be particularly beneficial for school going YLH to address challenges of medication use. Caregiver support and capacity building to enable optimal YLH support a home is also a critical component of YLH care(37).

Our study findings may not generalize to all YLH. YLH who participated in IDIs needed to be fully aware of their HIV status, ever enrolled in school, and needed caregiver consent to participate. Nonetheless, they highlight important challenges related to stigma in the school environment as well as potential interventions.

In summary our results highlight the critical need to address stigma in schools and identify potential stigma reduction interventions in schools. Future implementation studies to understand the most effective and efficient interventions and implementation strategies are needed.