Following the framework used to guide data collection (Fig. 1, Additional File 1), we describe our findings on influences on vulnerability and resilience in relation to young people’s experiences in the community and home, in school, in attending HIV/AIDS Comprehensive Care Clinics (CCCs) and in participating in AHOS. Across these four sections, we identify influences related to policies and organisational systems, and to interpersonal relations within these environments.
3.1 Community and home: Influences on ALH vulnerability and resilience
Many county-level HIV policy makers and community-based providers saw community-wide stigma and discrimination towards people living with HIV as becoming less marked over time. At the same time, negative attitudes were reportedly common across the community, including widespread inaccurate understandings of perinatal HIV that underpinned discriminatory behaviour, such as accusations of irresponsible sexual behaviour, as has been widely reported in different settings (26, 27). Key informants had experience of families feeling forced to move home when they suspected disclosure and stigma, sometimes having to move repeatedly, generating issues for continuity of care at CCCs and worsening outcomes. While poverty is common across rural areas of Kilifi county, ALH caregivers are particularly impacted, generating difficulties in accessing education, maintaining adequate nutrition and growth (core to fears and experiences of stigma), paying fares to attend CCC and being able to afford a radio, watch or phone to support timing of ART doses (27, 28). Schooling could be impacted where girls were unable to afford sanitary towels and where hunger affected concentration in class. ALHs’ responses to these challenges risked deepening their vulnerability, for example, in refusing to take ARTs because they did not have food, turning to commercial sex work or leaving school to look for paid work. Other reported responses reflected less constrained (but still non-ideal) forms of agency, for example, getting up very early to walk to school in the absence of fares (29). In this way, socioeconomic challenges in the home environment undermined ALHs’ wellbeing and ability to cope with the multiple, often severe, challenges faced in everyday life, which we describe across the following sections.
Considerable diversity emerged around accounts of the types and levels of practical and emotional support available to ALH at home, including medicine taking, as has been shown elsewhere, including in Kenya (30–33). While some caregivers assumed that ALH could ‘look after themselves’ or ‘harassed’ those who forgot to take their ARTs, other families took their ARTS together. In one family, a young person reminded their parent about medication. We later discuss the privacy challenges faced by ALH in seeking time out of school to attend HIV/AIDS Comprehensive Care Clinics; caregivers could provide important support in this respect:
My child doesn’t even ask for a leave out [from school] if it’s her time to come for the drugs, I usually call the teacher and inform him that my child had gone to the hospital and will come to school late. (Caregivers FGD04)
Encouraging ART adherence was particularly challenging if ALH were not aware of their status, reportedly common in low-resource settings. Some caregivers had insisted that CCC staff take responsibility for disclosing their child’s status, contrary to national policy (34–36). Discriminatory attitudes were particularly described when affected young people were in the care of well-wishers or relatives outside their immediate family. It is notable that just over half of ALH participating in AHOS were orphans. Instances of prejudice and discrimination described included ALH being forced to keep their utensils separate from those of the wider household or sleep separate from other children in the home; caregivers selling food given for an ALH by local NGOs; and a ‘sponsor’ refusing to let an ALH placed in her care attend CCC. Elderly caregivers often struggled to provide an adequate diet for their charges given economic constraints, and faced difficulties in understanding and remembering ART regimes.
Across the county, government departments and NGOs provide important support to communities and families living with HIV, including through CCCs. While operating on fixed funding cycles, community-based NGO staff had particularly valued roles in acting as mentor mothers to families living with HIV/AIDS. This group also distributed designated support to families in NGO programs, ran motivational ‘boot camps’ for ALH, during which they would be encouraged to take their ARTs openly together, and set up support groups to help parents disclose their children’s HIV status – a process seen as critical to ALH acceptance and wellbeing. Many such staff formed close and supporting relationships with the families and young people in their care, including supporting families in greatest need from their own pockets.
3.2 School environments: Influences on ALH vulnerability and resilience
Since AHOS participants were generally school going, those invited to join our study were primary or secondary school students in day, boarding or mixed facilities. The boarding school environment could be particularly challenging for ALH since, as shown earlier, family support was an important influence on young people’s ability to thrive outside the home. The primary challenge for ALH in schools centered on efforts to maintain privacy in relation to their HIV status given actual and perceived risks of stigmatisation by students and staff, as reported from other parts of Kenya and sub Saharan Africa more widely (37–41). At the same time, staff could be a potential source of support to ALH, particularly members of the Kenya Network for Positive Teachers (KENEPOTE), a network set up within the Teachers Service Commission of Kenya in 2004 to support and empower this group (42). Across the following paragraphs, we first describe challenges related to organisational policies in schools, followed by influences on vulnerability and resilience from interpersonal relations.
Systems in place for managing routine medications and regulating student movements out of school, particularly in boarding schools, presented the main privacy risks for ALH and challenges to ART adherence. As noted elsewhere, particular challenges related to storage and access to ARTs in schools and securing permission to leave school to attend regular HIV/AIDS Comprehensive Care Clinic appointments (43). Notably, policies that required advance permission to be absent from school for health or other reasons, or to show a medical note to explain an absence, while reasonable at face value, generated important privacy risks for ALH. Young people described taking a series of strategies to counter privacy risks, such as missing ART doses, taking leave-outs without permission and accepting unfair punishments:
I just went to [started] that school just the other day. Better my former school where there was a teacher who also took drugs [ARTs], whenever he came here [CCC], we would see each other, he is the only person who knew. But at this other school, I’m still new and from the way I find them, it’s like they are rumour mongers, so I won’t say, I’ll just go then come back, get caned and the story ends (ALH FGD07)
…at school I haven’t trusted any teacher…that’s why I always give an excuse of a headache or stomach ache for me to go to hospital when I go (to) maintain (refill) my drugs. (ALH FGD07)
Table 2 summarises our findings on organisational policies seen as challenging and students’ reported responses to these. Of note in relation to these findings, while the Kenyan government banned corporal punishment in Kenyan schools in 2001, and enacted the Children's Act (44) which entitles children to protection from all forms of abuse and violence, corporal punishment is still used in Kenyan schools, when teachers believe it is for the child's good (45). For ALH, maintaining silence over HIV status in this way reflects a constrained form of agency in the face of discrimination and injustice, also described in high income settings (46).
Challenging organisational policies in schools and students’ coping strategies
Challenging organisational policies
Coping strategies adopted by students
• Public checking of students’ bags at the start of a new term, when medicines might be tipped on the ground.
• Requirements that all medicines are handed over to the matron for safe storage and dispensing.
• Where medicines could be stored in dormitories, locking of these during the day, and the risk of discovery during random dormitory checks.
• A requirement for formal permission to be out of school for health or other reasons, including attendance at Comprehensive Care Clinics, with a range of punishments if breached.
• A lack of teaching support and punishment for failing to ‘catch up’, on missed classes.
• Storing ARVs in school toilet blocks or outdoor hiding places, requiring special effort to access privately.
• Putting ARVs in unmarked containers rather than labelled prescription bottles, risking confusion about identity.
• Accepting physical punishment for being late to class (typically, ‘caning’) to allow a student to take ARVs in private between breakfast and class, rather than explain the reason for lateness.
• Choosing to miss school to collect ARV refills without giving an explanation, choosing a risk of physical punishment rather than disclosure of their status; or explaining school absences as due to less stigmatizing conditions.
• Using own time and borrowing other students’ notes to try to catch up on missed classes.
The difficulties experienced by ALH in countering these challenges, for example in being seen by peers as needing regular medication was well illustrated by one caregiver:
They get a problem in taking the drugs at school because [other students] will see them and [they] may be asked ‘What are these drugs for?’...you see our girls they always walk together everywhere, if they want to drink water or they go to the toilet (caregivers FGD)
School staff and policy makers also recognised the existence of stigma within schools and its consequences:
…this somehow really jeopardises suppression because at times when this information leaks out to these other students, they tend to either make fun or discriminate… one way or the other we don’t get good outcomes. (Health policy maker 01)
The interpersonal challenges encountered by young people living with HIV/AIDS in schools have been widely described in the literature, including in sub Saharan Africa and from elsewhere in Kenya (37–41, 43, 46). Our data largely support existing accounts of stigma and discrimination likely to be experienced, and here we particularly focus on the reported attitudes and actions of peers and school staff that were core to the capacity of ALH to thrive in schools. As summarised in Table 3, alongside experiences of stigma and discrimination, some staff offered remarkable levels of support, potentially offering students a lifeline. While teachers who were themselves living with HIV/AIDS might try to support affected students, they also worried about and sometimes experienced stigma and discrimination themselves. One such individual was described as being actively discriminatory towards ALH to limit risks of their own status being uncovered.
Illustrative examples of interpersonal support and challenges for ALH in schools
Discrimination/negative attitudes experienced
Positive support from staff
• Teachers not allowing ALH to participate in certain activities such as games lessons and telling other students not to play with a student known to be HIV positive.
• Teachers discussing students HIV status amongst themselves (reported by ALH and KENEPOTE members)
• Peers refusal to sit next to or share personal items with others thought or known to be HIV positive; broadcasting information on students’ or teachers’ HIV status, including by writing on blackboards; and ridicule.
• A participant who disclosed his HIV status to a close friend in confidence later entered the classroom to find his classmates discussing his status.
• School staff helping ALH navigate challenges around the inspection of personal property and ARV storage, for example by undertaking ALH inspections or personally keeping; or ensuring day pupils had access to evening meals in school where food at home was known to be in short supply.
• Staff helping ALH to navigate challenges in schools including paying transport costs and accompanying to CCC to ensure they received refills.
• One boarding school matron supported four students living with HIV from school entry for four years, by ensuring their privacy in taking ARVs, access to a good diet, including making meals in her own house, and that the girls did not undertake heavy physical work at school. Since these girls were from the matron’s home area, their ‘special treatment’ was widely accepted as a form of favouritism and did not generate stigma.
The risk attached to actions taken by students to protect their privacy in social spaces was well illustrated by one young woman who described her ARVs as ‘headache tablets’ to peers, and later felt obliged to share these with a friend who developed a headache. In the next section on experiences around visiting CCCs, we note a particular problem for ALH in accounting for the exact numbers of ARV tablets dispensed at a time, underlining additional challenges this young woman was likely to face in future.
3.3 HIV Comprehensive Care Clinics: Influences on ALH vulnerability and resilience
While the importance of well-functioning Youth Friendly Services at CCCs is clearly recognised, young people and other stakeholders in our study described a range of challenges typically encountered (47). In contrast to the school environment, privacy concerns were less prominent since attendance implied a positive HIV status for all clients, particularly where Youth Friendly Services (YFS) were in place. Instead, the main forms of vulnerability described related to negative staff attitudes, often influenced by underlying resource constraints. A core challenge for young people was the time spent in clinics, due to high client-to-staff ratios. Access to specialist support, such as professional or adherence counselling, was particularly difficult since these services were available intermittently or required distant referral. During our observations, a clinician attended almost 100 clients in a day, with waiting times of up to six hours.
P3: At times the doctor may only be one/ P1: Yet there are many patients, so you won’t be attended fast. You want to go back to school but there is only one doctor (ALH Group interview 01)
Across our study, CCC services were generally offered in one room where four to eight staff worked with clients across all age groups; accordingly, we noted many providers trying to communicate in ‘whispers’. A lack of YFS heightened privacy concerns:
P3: When you just enter the door (of the CCC), all the eyes are on the entrance aah… you feel shy to walk up to there ….P1: Others are even surprised…“Mh! A very small child using medicines [ARVs]? ...some women started talking, “Ah K’s child is also using drugs” …you know what, I don’t like it. (ALH Group interview 01)
Given these constraints, individual CCC staff attitudes strongly influenced ALH experiences of attending these clinics and their capacity to manage lifesaving treatment. Supportive attitudes were commonly described, summarised in Table 4, including actions empowering ALH as a group as well as support for privacy, flexibility in approach towards individual young people and (often personal) contributions towards supporting ALH in difficulties:
…adolescents are very delicate…if an adolescent says ‘I don’t want X to see me’ and then I say ‘its ok who do you want to see you?’... you know most of them think that being HIV positive is the end of their life, no so I think we just need to understand them and walk with them as they come. (Health care provider IDI20)
Individual CCC staff actions supporting ALH wellbeing
CCC staff actions supporting ALH
• Giving ALH a lead in planning outreach activities e.g. World AIDS Day.
• Planning ALH-only CCC sessions, including during out-of-school hours/at same time as support groups to save time, transport costs and reduce privacy risks.
• Waiting times at CCCs addressed by ‘fast tracking’ ALH wearing school uniforms.
• Guardians/parents allowed to collect ARVs on ALH behalf for up to 2 months; ALH allowed to collect ARVs outside prior appointment times where a valid reason given; offering flexibility in clinic appointments when ALH attend on ‘wrong’ day (e.g. set appointments clash with important school events).
• Individual CCC staff supporting ALH, including through: ‘informal’ task shifting strategies to reduce queues and allowing ALH to choose which provider to talk to at CCC.
• Taking the initiative to develop and implement ART training for elderly caregivers.
• Giving ALH in boarding schools enough ARTs to last to midterm or setting up a local CCC contact near to the school.
• Supporting ALH privacy: visiting homes (on clinical indications) in the guise of a friend or selling items; suggesting ALH pad ARV bottles with cotton wool to prevent ‘rattling’ bringing attention to this medication.
• Individual ‘emergency support’ in bringing urgent ARV supplies to homes at weekends and staff giving cash from their own pockets.
At the same time, ALH and caregivers described a series of important challenges linked to negative CCC staff attitudes. A frequently reported challenge arose from a CCC policy for staff to count remaining ART pills (‘pill count’) for each attending ALH to assess ‘adherence’ to a prescribed regime. Some staff reportedly dealt harshly with young people where mismatches occurred between expected and actual counts.
The one at the pharmacy, if you go there with a lot of drugs, they will quarrel [with] you so much, I don’t know what! They will scold you… it’s like they are a teacher now, you’ll be scolded (P3) Yes, even if there are only two remaining (P1) Even if it’s only one remaining (P2) (ALH Group interview 01)
Alternative explanations, such as errors in dispensing practices, seemed not to be explored. A similarly negative attitude could be associated with a finding of high viral loads, interpreted as reflecting ‘non-adherence’. Suggesting risks of staff showing negative attitude, health providers in one CCC reportedly chose to use a back door to enter the facility to avoid public recognition, which was tellingly referred to as the ‘stigma door’. As suggested earlier, resource constraints underpinned many structural challenges for CCCs, particularly staff levels and skills and physical space. In this way, when some trained adherence counsellors were described as ‘reprimanding and blaming’ rather than supportive, these behaviours could also be seen as signs of ‘burnout’ linked to high workloads:
… if a youth comes today and it’s not his/her clinic day and the way I am already tired, your head is not working well, you can respond that youth badly. When you respond rudely to the client, you risk losing him/her. (Health care provider IDI 03)
3.4 AHOS participation: Influences on ALH vulnerability and resilience
Towards building a discussion of the ways in which research participation might potentially counter and exacerbate the everyday vulnerabilities described for ALH so far, in this section we describe findings around ALHs’ experiences of being in AHOS, focusing on two core emerging themes around decision-making on joining the study and experiences of study procedures.
3.4.1 Deciding to join AHOS
The approach to informed consent and assent for AHOS (AdditionalFile 1) aimed to take account of the complex social, cultural and legal influences on ALHs’ actual and assumed capacities for independent decision-making, reflecting agency. Influences included their emerging autonomy and age, given cultural and legal variations in assessments of maturity and around human rights (10, 48). Additional recognised challenges for AHOS included risks of inadvertent disclosure in approaching a young person who might be unaware of their HIV status and the need to seek consent from both caregiver and their teenagers as independent participants.
In practice, ALH were approached following discussions with their parents during regular CCC visits, to ensure that only ALH with perinatal infection and who were aware of their HIV status were invited. With initial parental agreement, in most cases an AHOS team member approached young people eligible to join the study with their parent or caregiver, at CCC or home. To build trust in the study, including around privacy, this team member had been recruited as a person known to CCC-users through an earlier ‘mentor mother’ role within a local NGO-led HIV/AIDS support programme. Throughout our study, we noted the positive relationship between AHOS participants and this - and other - AHOS team members, including young people’s willingness to listen to their advice.
The formal AHOS consent process, including assent of the young person and consent of their caregiver or guardian, took place immediately prior to the first research clinic-based assessment, when the young person and their caregiver travelled to the research clinic. While there was reasonable clarity amongst ALH about the broad aims of and study procedures in AHOS, some young peoples’ and caregivers’ existing fears, such as worries about their ‘thinking abilities’ linked to memory and concentration, positively influenced some to join, as a way of accessing more information or advice. In some cases, a combination of parental authority traditional in this community and an assumption that participation might be beneficial seemed to generate prompt decision-making to join (48):
[How did you learn about the study?] I was told by my father over the phone … he told me to come the following day, I was needed at KEMRI Kilifi, and I went because I know my status. (ALH FGD02)
3.4.2 Experiences of AHOS procedures
Participating families attended three annual research visits, each lasting half a day, over a two year period. As shown in Additional File 1, research procedures involved anthropometrics, clinical examination, blood sampling and responding to a series of questionnaires, using audio-computer assisted self-interviewing (ACASI) and a face-to-face interview. In general, ALH saw physical examinations as helpful, being more in-depth than those encountered at CCC, and the clinical staff undertaking examinations as respectful and engaging, rather than patronising or harsh. While some ALH found aspects of interviews, tasks and questionnaires ‘childish’, irrelevant or embarrassing, these procedures were generally seen in a positive light, as being individually informative and generally enjoyable. Since many ALH did not have regular access to computers at home or school, the ACASI-based tasks were often seen as an exciting “computer game”. Young people also saw research activities, particularly cognitive assessment tasks, as a form of learning, with a potential to compensate for missed classes:
I really thought about it, I miss school to come here?... When I got here I found the questions are the same as those in school so I felt good. Now I wonder if I had not gone, would I really get them [understand questions in school] or I would miss them? (ALH Group interview 01)
Perhaps the most common and strongest accounts around experiences of AHOS participation concerned the value young people placed on the open and friendly attitudes encountered at the research clinic, including reassurances around privacy:
They [staff] keep secrets…at the beginning you will be told there is no one who will know whatever you have said and it’s true no one knows. It’s only you and the computer…and the doctor…you feel very good (, ALH FGD02)
Whenever I go there I feel happy because they treat me nicely…when you go there everyone is free with you…there is a way you can ask someone something and their reply is cold that…I will feel afraid and even think of not coming back…but since they [KEMRI] treat me nicely, even as I say “hello” to their phone calls, I immediately dress up and go (ALH FGD02).
One ALH described the importance of feeling ‘noticed and remembered’ through setting up a study like this, focused on the needs of ALH. Also of great value to young people was the opportunity offered to meet peers, some of whom might be dealing with similar life challenges, with opportunities to share coping mechanisms.
At the same time, challenges emerged for ALH related to the time taken for AHOS appointments and difficulties experienced in explaining their participation to others. In relation to time, although research visits were much less frequent than routine CCC appointments, getting time out of school to attend AHOS appointments generated similar risks and challenges, including high levels of anxiety, risks of punishment linked to actions taken to avoid inadvertent disclosure and additional workloads in catching up missed schoolwork. Importantly, following an AHOS appointment, young people experienced challenges in explaining the study (and their school absence) to others without risking disclosure of their HIV status. The study information sheet used in schools avoided reference to HIV to counter such privacy risks, instead talking about research on ‘cognitive functioning’. In practice, class teachers often asked for more information about AHOS that ALH were ill placed to give without risking disclosure. The term ‘cognitive functioning’ also generated teasing as meaning ‘mental health problems’, which already vulnerable ALH found difficult to manage. As a result, in some instances ALH left school without permission to attend AHOS appointments, risking punishment for being absent without a good reason. As for CCC visits, they would also need to catch up on missed lessons in their own time.