Screening and supporting through schools: Educational experiences and needs of adolescents living with HIV in a South African cohort

Background: Many adolescents living with HIV remain disconnected from care, especially in high-prevalence settings. Slow progressors-adolescents infected perinatally who survive without access to lifesaving treatment-remain unidentified and disconnected from heath systems, especially in high-prevalence settings. This study examines differences in educational outcomes for ALHIV, in order to i) identify educational markers for targeting HIV testing, counselling and linkages to care, and ii) to identify essential foci of educational support for ALHIV. Methods: Quantitative interviews with N = 1063 adolescents living with HIV and N = 456 HIV-free community control adolescents (10-19 year olds) included educational experiences (enrolment, fee-free school, school feeding schemes, absenteeism, achievement), physical health, cognitive difficulties, mental health challenges (depression, stigma, and trauma), missing school to attend clinic appointments, and socio-demographic characteristics. Voluntary informed consent was obtained from adolescents and caregivers (when adolescent < 18 years old). Analyses included multivariate logistic regressions, controlling for socio-demographic covariates, and structural equation modelling using STATA15. Results: ALHIV reported accessing educational services (enrolment, free schools, school feeding schemes) at the same rates as other adolescents (94, 30, and 92% respectively), suggesting that school is a valuable site for identification. Living with HIV was associated with poorer attendance (aOR = 1.7 95%CI1.1-2.6) and educational delay (aOR1.7 95%CI1.3-2.2). Adolescents who reported educational delay were more likely to be older, male, chronically sick and report more cognitive difficulties. A path model with excellent model fit (RMSEA = 0.027, CFI 0.984, TLI 0.952) indicated that living with HIV was associated with a series of poor physical, mental and cognitive health issues which led to worse educational experiences. Conclusion: Schools may provide an important opportunity to identify unreached adolescents living with HIV and link them into care, focusing on adolescents with poor attendance, frequent sickness, low mood and slow learning. Key school-based markers for identifying unreached adolescents living with HIV may be low attendance, frequent sickness, low mood and slow learning. Improved linkages to care for adolescents living with HIV, in particular educational support services, are necessary to support scholastic achievement and long-term well-being, by helping them to cope with physical, emotional and cognitive difficulties. This study interviewed 1519 adolescents comprising N = 1063 adolescents living with HIV and N = 456 un-infected community control adolescents (aged 10–19) in South Africa from 2014 to 2015. The study was designed in collaboration with the South African national Departments of Health, Social Development and Basic Education, UNICEF, and UNAIDS. Ethical approvals were obtained from Universities of Oxford (SSD/CUREC2/12–21), Cape Town (CSSR 2013/14), provincial department of Basic Education (04/04/2014) and Health (29/08/2013), and participating facilities. The study population included all adolescents ever initiated onto ART in all government-run health facilities (n = 53) in a municipal district of South Africa’s Eastern Cape Province. From 1176 patient files found, 90.3% (N = 1063) – were interviewed (4.1% refusals, 3.7% unreachable, 0.9% excluded due to severe cognitive delays). Included adolescents did not differ by age, gender and rural residence from those not reached [26]. Adolescents were interviewed in the communities where they lived (over 180 villages, wards, and neighbourhoods). Participating adolescents attended one of 415 schools in the district. To prevent potential stigmatisation of adolescents living with HIV, cohabiting or neighbouring adolescents who met age criteria were also interviewed (n = 456, 94.5% interviewed, 0.2% refusals, 5.3% were not traceable due to missing or incorrect contact details). HIV-status was categorised through a sequential confirmation process. First, HIV-positive status was verified through hand-searching of patient files and Tier. Net records in all health facilities where adolescents reported receiving care (n = 70 facilities), including two provincial hospitals, two regional hospitals, and five community health centres, responsible for initiating most patients on ART in the area [27]. If an adolescent ART file or record of having tested HIV-positive was located, participants were recoded as living with HIV. Second, adolescents without medical records of HIV status were screened using an evidence-based health symptoms and health history tool, developed to pick up suspected cases of HIV even among adolescents living with HIV who may be ‘slow progressors’ [28, 29]. Adolescents who did not meet the suspected HIV symptoms nor health history and had never tested HIV-positive based on medical records or self-reports, were interviewed and assigned HIV-negative status. The final sample included in this study included N = 1063 adolescents living with HIV and N = 456 HIV-uninfected peers. Interviews were conducted by a local team trained in sensitive and ethical research with HIV-affected children and adolescents. Questionnaires were administered on tablets to minimise missing data and improve data quality [30, 31]. Informed voluntary written consent was obtained from both adolescents and caregivers (when adolescents were < 18 years old). Adolescents could withdraw from the research at any time. Linkages to healthcare and psychosocial services were provided for adolescents reporting any severe risk of harm, including defaulting from ART, symptomatic untreated TB, mental health issues such as suicidality or severe depression, and need to access special schools due to cognitive issues (N = 94, 6.2% of the full sample, N = 68, 6.4% among adolescents living with HIV and n = 26 (5.7%) of the comparison group. Referrals were discussed with a research team led by a social worker. All adolescents received a participation certificate and small pack of snacks and toiletries, regardless of whether they consented or completed their interviews. Validated scales and measures were used where available, with adaptations made in consultation with adolescents, local health providers and other stakeholders. All measures were translated and back-translated, with consultation with rural and urban youth (n = 12) to ensure conceptual and contextual relevance between the English and the local vernacular (both urban and rural Xhosa). Final data collection tools were pre-piloted with N = 25 adolescents living with HIV from rural and urban study areas. School enrolment, measured as self-reported attendance in school. Access to a fee-free school was measured as no fee schools or adolescents reporting a school-fee waiver [32–34]. Access to a school feeding scheme was measured through adolescent reporting receiving at least one free meal at school (breakfast, lunch or snack), using an item developed through consultations with Department of Basic Education. Absenteeism was dichotomised as missing school for > 2 weeks in the previous term [35]. Educational delay was dichotomised using self-reported educational delay by ≥1 year behind school grade [35]. Chronic illness used adolescent report of symptomatic pulmonary TB, frequent ear infections, difficulties breathing, diarrhoea or nausea: all health issues shown to negatively affect school attendance and performance [36–38]. Missing school frequently to go to the clinic in the past year was documented through an item adapted from the PREPARE trial [39]. Cognitive difficulties were dichotomised as adolescent self-reported difficulties remembering to take their medicine – adapted from the WHO International Classification of Disability [40], caregiver-reported difficulty to concentrate at school and home, or attending a special school for children with cognitive disabilities (reported by either participant or caregiver). Answering ‘yes’ to either of these three types of difficulty was coded as reporting cognitive difficulties. Mental health challenges were measured as adolescent reporting at least one of three mental health states – depression, Post-Traumatic Stress Disorder (PTSD), or internalised stigma. Depression was measured as reporting above-median scores in the 10-item Child Development Inventory (past two weeks, Macdonald’s ω = 0.61), used extensively with children and adolescents in South Africa [41]. Past-month PTSD was measured with an abbreviated version of the Child PTSD Checklist [42], validated for use among adolescents in South Africa [43]. Internalised stigma used a scale adapted and validated with the study sample (α = 0.75) [26]. In addition, school-related externalising problems were measured by combining 2 school-related items from the Child Behaviour Checklist (CBCL) [44, 45], used in South Africa [46, 47] with 2 school-specific behaviour items from the Strengths and Difficulties Questionnaire (SDQ), validated in Xhosa speaking populations [48]. Socio-demographic variables included age, gender, rural/urban residence, informal/formal housing, and orphanhood (maternal and paternal), measured through items used in similar surveys with adolescents in South Africa [46, 49]. Poverty was measured as lacking at least one of eight top socially-perceived necessities for children and adolescents, confirmed by over 80% of the South African population in a nationally-representative survey [50]. Analyses took place in three stages using SPSS23 and STATA15: Hypothesised pathways between HIV status and educational experiences