Why Are They Leaving? Factors Associated With Attrition After Testing Among Young South Africans Recently Diagnosed With HIV: An Observational Study.

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Factors Associated With Attrition After Testing Among Young South Africans Recently Diagnosed With HIV: An Observational Study Ingrid T Katz Ingrid T Katz , M.D., M.H.Sc. a Department of Medicine, Brigham and Women’s Hospital, Harvard Medical School, Boston, Massachusetts Find articles by Ingrid T Katz a, * , Tiffany Lemon Tiffany Lemon , Ph.D. b College of Health Solutions, Arizona State University, Phoenix, Arizona Find articles by Tiffany Lemon b , Elzette Rousseau Elzette Rousseau , M.A., Ph.D. c The Desmond Tutu Health Foundation, University of Cape Town, Cape Town, Republic of South Africa Find articles by Elzette Rousseau c , Siyaxolisa Sindelo Siyaxolisa Sindelo c The Desmond Tutu Health Foundation, University of Cape Town, Cape Town, Republic of South Africa Find articles by Siyaxolisa Sindelo c , Robin Julies Robin Julies , M.A. c The Desmond Tutu Health Foundation, University of Cape Town, Cape Town, Republic of South Africa Find articles by Robin Julies c , Nomakaziwe Siko Nomakaziwe Siko c The Desmond Tutu Health Foundation, University of Cape Town, Cape Town, Republic of South Africa Find articles by Nomakaziwe Siko c , Andrew Boulle Andrew Boulle , Ph.D. d Centre for Infectious Disease Epidemiology and Research, School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa Find articles by Andrew Boulle d , Yeonsoo S Lee Yeonsoo S Lee , M.D. a Department of Medicine, Brigham and Women’s Hospital, Harvard Medical School, Boston, Massachusetts Find articles by Yeonsoo S Lee a , Amanda Fata Amanda Fata , M.S. a Department of Medicine, Brigham and Women’s Hospital, Harvard Medical School, Boston, Massachusetts Find articles by Amanda Fata a , Maria Nardell Maria Nardell , M.D., M.P.H. a Department of Medicine, Brigham and Women’s Hospital, Harvard Medical School, Boston, Massachusetts e Department of Medicine, Beth Israel Deaconess Medical Center, Boston, Massachusetts Find articles by Maria Nardell a, e , Lisa M Butler Lisa M Butler , Ph.D., M.P.H., Ph.D. f Department of Public Health Sciences, Queen’s University, Toronto, Canada Find articles by Lisa M Butler f , Valerie A Earnshaw Valerie A Earnshaw , Ph.D. g Department of Human Development and Family Sciences, University of Delaware, Newark, Delaware Find articles by Valerie A Earnshaw g , Ingrid V Bassett Ingrid V Bassett , M.D., M.P.H. h Department of Medicine, Massachusetts General Hospital, Harvard Medical School Boston, Boston, Massachusetts i Center for Biostatistics in AIDS Research, Harvard T.H. Chan School of Public Health, Boston, Massachusetts Find articles by Ingrid V Bassett h, i , Claude A Mellins Claude A Mellins , Ph.D. j HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University, New York, New York Find articles by Claude A Mellins j , Laura Smeaton Laura Smeaton , M.S. i Center for Biostatistics in AIDS Research, Harvard T.H. Chan School of Public Health, Boston, Massachusetts k Harvard University Center for AIDS Research, Boston, Massachusetts Find articles by Laura Smeaton i, k , Linda-Gail Bekker Linda-Gail Bekker , M.B.Ch.B., D.T.M.H., D.C.H., F.C.P. c The Desmond Tutu Health Foundation, University of Cape Town, Cape Town, Republic of South Africa Find articles by Linda-Gail Bekker c Author information Article notes Copyright and License information a Department of Medicine, Brigham and Women’s Hospital, Harvard Medical School, Boston, Massachusetts b College of Health Solutions, Arizona State University, Phoenix, Arizona c The Desmond Tutu Health Foundation, University of Cape Town, Cape Town, Republic of South Africa d Centre for Infectious Disease Epidemiology and Research, School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa e Department of Medicine, Beth Israel Deaconess Medical Center, Boston, Massachusetts f Department of Public Health Sciences, Queen’s University, Toronto, Canada g Department of Human Development and Family Sciences, University of Delaware, Newark, Delaware h Department of Medicine, Massachusetts General Hospital, Harvard Medical School Boston, Boston, Massachusetts i Center for Biostatistics in AIDS Research, Harvard T.H. Chan School of Public Health, Boston, Massachusetts j HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University, New York, New York k Harvard University Center for AIDS Research, Boston, Massachusetts * Address correspondence to: Ingrid T. Katz, M.D., M.H.Sc., Brigham and Women’s Health, Division of Women’s Health, 1620 Tremont St. Boston MA 02120. ikatz2@bwh.harvard.edu (I.T. Katz). Issue date 2025 Sep. PMC Copyright notice PMCID: PMC13078669  NIHMSID: NIHMS2121134  PMID: 40704956 The publisher's version of this article is available at J Adolesc Health Abstract Purpose: Young people in South Africa face unique challenges in initiating HIV treatment. There has been limited research on sociobehavioral factors influencing attrition from care among recently diagnosed adolescents and young adults (AYA). Methods: We enrolled 100 AYA who recently tested positive for HIV between April 2018 and October 2019 at two community testing sites in Cape Town. We administered a sociobehavioral survey within 2 weeks of diagnosis and 6 months of follow-up and used electronic health records to confirm linkage to care, antiretroviral therapy (ART) initiation, and viral load suppression within 1 year of diagnosis. We used descriptive statistics to explore the general relationships between clinical and sociobehavioral factors. Results: Seven participants were excluded from the analysis because they had evidence of ART initiation. Among 93 eligible participants, the majority were not linked to care (n = 82) and over 80% reported food insecurity and HIV diagnosis disclosure concerns. Of those who linked to care (n = 11), 10 initiated ART and 6 achieved viral suppression within 1 year. AYA who initiated ART were more likely to live with a parent/relative (10 of 10 vs. 57 of 83) and were more likely to have disclosed their status to household members (7 of 10 vs. 25 of 83) than noninitiators. Mean baseline scale scores for anticipated and enacted stigma were higher among ART noninitiators compared to ART initiators, with mean differences of 0.4 and 0.5, respectively. Discussion: In a sample of recently diagnosed AYA in South Africa, the majority showed no evidence of entering care within a year. All of the participants who initiated ART reported living with a relative and were more likely to disclose their HIV status than noninitiators. Further research is needed to develop effective intervention strategies to address barriers to care for AYA with HIV in South Africa. Keywords: HIV, South Africa, Adolescents, Antiretroviral therapy In accordance with the World Health Organization guidelines, South Africa began a new phase in its fight against the world’s largest HIV/AIDS epidemic on September 1, 2016, by shifting to a universal test and treat (UTT) approach [ 1 ]. According to South Africa’s UTT policy, “ART should be started as soon as the patient is ready and within 2 weeks of CD4 count being done” [ 2 ]. While these guidelines have linked more people living with HIV (PLHIV) to care [ 3 ], young people continue to face barriers to accessing treatment [ 4 ]. Adolescents who acquire HIV may find it difficult to initiate treatment due to decreased parental involvement in decision-making, competing responsibilities, lack of adolescent-friendly health services, and challenges accessing the healthcare system in general [ 5 , 6 ]. A systematic review by Zanoni et al. found significant attrition between testing and treatment initiation among young people as compared to older adults. The review estimated that only 14% of adolescents with HIV who underwent testing in South Africa initiated treatment, with 83% of those who initiated retained in care and 81% of those retained virally suppressed. More recently, a 2023 study of UTT policy and its impact among South African youth in nine rural health facilities found that 69% of participants initiated, antiretroviral therapy (ART) but only 31% were virally suppressed at 1 year following diagnosis [ 7 ]. Adolescents and young adults (AYA) living with HIV face a unique set of barriers to accessing treatment. These include the formation of identity and desire for social belonging, as well as adolescent cognitive development, which are often characterized by a focus on immediate reward, emotional reactivity, impulsivity, and challenges considering long-term consequences of decisions [ 8 ]. This is largely because the prefrontal cortex, the part of the brain responsible for executive functioning, does not finish developing and maturing until the mid-to-late 20s, thus adolescence is often marked by intense emotions and failure to consider the long-term impact of decisions [ 9 ]. There are few rigorous evaluations of the impact of AYA-targeted HIV services in addressing factors related to adolescent development, particularly in low- and middle-income countries [ 10 – 12 ]. The World Health Organization recommends that innovative service packages that include HIV treatment are “crucial for reaching new cohorts of adolescents,” [ 13 ] yet it acknowledges that there are insufficient data on the impact of adolescent-friendly services on treatment initiation [ 11 ]. While there is evidence that psychosocial interventions, including community-based adherence support, can improve engagement in care for young PLHIV [ 5 ], further research is needed to inform our understanding of barriers to treatment initiation in the context of a new HIV diagnosis for young people. At the provincial level, 8% of people of all ages in Western Cape were living with HIV in 2022 [ 14 ]. Modeled data from 2019 suggest that the HIV prevalence rate among people aged 15–49 years was as high as 12.4% (95% confidence interval (CI): 11.8%–13.2%) [ 15 ]. Despite a relatively low prevalence of HIV compared to other provinces in South Africa, the Western Cape had one of the lowest viral load suppression rates in the country at 52.8% and the lowest rate of people who perceive themselves to be at risk for HIV at 10.5% [ 3 ]. Modeled data suggest that ART coverage in 2021 was as low as 54% [ 15 ]. Our overarching goal for this study was to assess rates and correlates of ART initiation and viral suppression for South African AYA (aged 18–24 years) in the modern era of UTT. Prior research has shown that policy changes have had limited impact on ART uptake among AYA, and that barriers we have consistently identified to initiating treatment, including maladaptive coping, internalized stigma, and lack of social support [ 16 , 17 ], remain critical in associated behavioral outcomes. We recruited a prospective cohort of young people who were recently diagnosed with HIV in community testing programs in Cape Town, South Africa, and followed our participants for a year to determine the rates of ART uptake and HIV-1 RNA suppression, with the goal of informing a future intervention designed to link and retain this population in care. We used Social Action Theory [ 18 ] to inform selection of measures to explore the relationship between ART uptake in this population and individual, interpersonal, and structural factors that are critical in healthy behavior change. Methods Study setting This study was conducted in urban communities around Cape Town, South Africa. Participants were presented for voluntary counseling and testing at one of the two Desmond Tutu Health Foundation (DTHF)–run mobile testing vans (the Tutu Teen Truck or the Tutu Tester) or through a community-based cash and care program, called Women of Worth (WOW). The DTHF testing vans are nurse-led and offer sexual and reproductive health services including HIV testing, sexually transmitted infection screening, and provision of injectable, oral, and implantable contraceptives, as well as tuberculosis screening. The Tutu Teen Truck provides services to young clients aged 12–25 years old, while the Tutu Tester provides care to all populations, with a particular focus on HIV testing for men. In accordance with South Africa’s UTT policy during the study period, anyone testing positive for HIV received an immediate referral letter by the nurse for care at the nearest health facility of the patient’s choice. The mobile testing vans covered the townships of Langa, Mfuleni, Philippi, Dunoon, and Joe Slovo in Western Cape, South Africa. The WOW program is a cash and care program delivered as a randomized control trial with 10,000 young women aged 19–24 years. Participants attended community-based group empowerment sessions which covered gender and power dynamics, sexual and reproductive health, identity and self-esteem, and professional development, among other topics. Women were randomized 1:1 to receive cash transfers for attendance to assess the impact of the empowerment workshop with and without the cash transfer on self-reported outcomes such as HIV and pregnancy. The program was conducted in the Klipfontein and Mitchells Plain subdistricts. Study participants, eligibility, and enrollment We recruited and enrolled 100 AYA aged 18–24 years old between April 2018 and October 2019 who presented to either of the mobile testing vans or were enrolled in the WOW trial and tested positive for HIV, were ART-naïve, and resided in the study area. The high-risk communities included in our study are historically disadvantaged and have high rates of unemployment, gang activity, crime, and substance use disorders as well as severe food insecurity [ 19 ]. Following enrollment, participants underwent a baseline interview (April 16, 2018–October 3, 2019) and were contacted for a follow-up interview at 6 months (March 26, 2019–August 27, 2020) which occurred in person at a DTHF site. Participants were reimbursed for transport costs associated with the 6-month interview. At enrollment, all participants were eligible for immediate HIV treatment under South African guidelines. Participants were enrolled within 1–2 weeks of testing. A nurse provided the contact information for eligible individuals to a research assistant, who then called participants via phone to enroll them until the desired sample size of 100 participants was attained. We excluded pregnant women and children and people who tested positive for tuberculosis because they were qualified for intensive adherence support under the South African HIV treatment guidelines. Individuals with serious cognitive or psychiatric impairments were ineligible due to potential impairment of their ability to provide informed consent and participate in the study (appropriate referrals were made). Participants were required to speak either isiXhosa or English. Eligible individuals were informed about the study by a nurse at these three sites and if potential participants expressed interest in the study, the nurse referred them to a research assistant to undergo informed consent. According to standard care protocols, all participants received HIV and CD4+ cell count point-of-care testing, whereupon the nurse provided them with a referral letter to their clinic of choice for linkage-into-care. Following enrollment, participants completed baseline assessments including a face-to-face interview and survey. We ascertained ART initiation by the documentation of ART prescription extracted from participants’ medical and/or pharmacy records. Our clinical outcomes were (1) ART initiation within 1 year and (2) viral suppression at 1 year after baseline based on data recorded in the National Health Laboratory Service (NHLS). Study protocol and data collection instruments were approved by the University of Cape Town Ethics Committee and the Mass General Brigham Institutional Review Board. All participants provided written informed consent. Study data were collected and managed using a secure, web-based, Research Electronic Data Capture tool hosted at Mass General Brigham. Study design According to the Social Action Theory [ 18 ], which posits that social factors can influence self-change processes and in turn, health behaviors, we identified constructs to address individual, social, and structural factors impacting ART initiation, viral load suppression, and engagement in care. We used descriptive statistics to explore general relationships between health-related decisions and contextual factors (food security, employment), social interaction processes (internalized stigma, social support), capabilities (coping skills), attitudes and beliefs (future orientation), and motivational appraisal (self-efficacy). According to our prior qualitative work [ 20 ], we administered a comprehensive survey using previously validated measures [ 17 , 21 - 34 ] to assess these factors at baseline and 6 months, as well as behavioral and clinical outcomes including ART initiation, and viral load suppression within a year of diagnosis. Data elements Clinical and demographic. Clinical factors included number of times tested for HIV, most recent HIV test date, and reason for testing. Clinical data were obtained between April 15, 2018, and April 4, 2020, from the Western Cape Provincial Health Data Centre (PHDC), a government-housed, single consolidated environment for person-level health data. These records include over 8 million unique health system users, including over 430,000 PLHIV. Data are processed from different sources, linked through unique identifiers, and triangulated for enumerating certain health conditions in addition to HIV such as hypertension and diabetes. This database has been further described elsewhere [ 35 ]. The PHDC is the Department of Health’s trusted source of health data, and because all health facilities automatically migrate their data to the PHDC, it is highly unlikely that an individual would be linked to the HIV services outside of this system. We also collected sociodemographic characteristics at baseline that could potentially relate to psychosocial factors, including race, level of education, employment, and a brief survey on religious beliefs [ 34 ]. Psychosocial factors. As informed by the Social Action Theory [ 18 ], we used a cognitive behavioral approach to assess individual, interpersonal, and structural factors, all of which were critical in healthy behavior change. The study survey utilized previously validated instruments ( Supplementary Table 1 ). Measures included the Household Food Insecurity Access Scale (12 items) [ 33 ]; one domain from the Substance Abuse and Mental Illness Symptoms Screener related to alcohol use [ 30 ]; the Generalized Anxiety Disorder (seven items) scale [ 32 ]; the Patient Health Questionnaire (nine items) [ 31 ]; one domain from the Duke University Religion Index [ 34 ]; the Brief Coping Orientation To Problems Experienced (15 items) [ 24 ]; the Future Orientation Scale (12 items) [ 36 ]; the Rosenberg Self-Esteem Scale (10 items) [ 37 ]; the Internalized AIDS-Related Stigma Scale (six items) [ 29 ]; the Anticipated Stigma Scale (nine items) from the HIV Stigma Framework [ 38 ]; the Enacted Stigma Scale (nine items) from the HIV Stigma Framework [ 38 ]; and internally constructed measures on health literacy (four items), disclosure history and concerns (nine items), and trust in the health-care system (two items). More details on the functional forms of constructs can be found in Supplementary Table 1 . Statistical analysis Participants who initiated ART before their baseline interview were excluded from all analyses. Data obtained through surveys were summarized using descriptive statistics, such as percentages, means, and standard deviations. We compared baseline scale scores between comparison groups defined by clinical outcomes via mean differences. For each scale score, we estimated the 95% CI for the mean difference between groups by bootstrapping with 10,000 samples. For dichotomous variables, we compared outcomes using a two-sided Fisher’s exact test. All analyses were performed using SAS version 9.4. Results Baseline characteristics Among 100 participants at baseline, seven were excluded because they had initiated ART prior to the baseline interview, leaving 93 eligible participants. The mean age of the 93 recently diagnosed and ART naïve AYA was 21.2 years ( Table 1 ). Most participants identified as female (91%) and spoke isiXhosa at home (97%), and all participants identified as Black African. Half of the participants attained a secondary education and 72% lived with either a parent or relative. Only 20% of participants were employed. We observed only minor changes in participant characteristics over 6 months of follow-up ( Supplementary Table 2 ). Table 1. Baseline sociodemographic characteristics of 93 adolescents and young adults after HIV diagnosis, 2018–2019 Participant characteristics (N = 93) N (%) Age (two categories) 18–20 31 (33) 21–24 62 (66) Female 85 (91) Black 93 (100) Educational attainment 40 Less than secondary education (43) Secondary education 46 (50) Postsecondary qualification 7 (8) Main language spoken at home 90 isiXhosa (97) Shangaan/Tsonga 2 (2) Zulu 1 (1) Live with a parent or relative 67 (72) Employed 19 (20) Open in a new tab Clinical factors and outcomes Table 2 summarizes the history of HIV testing reported and other clinical outcomes through first year following HIV diagnosis. Among the 93 participants, 82 did not link to care. Most participants (91%) reported testing for HIV at least twice in their lifetime and 24% reported testing subsequent to a diagnosis, and they were eligible for ART. Of the 11 participants who linked to care within 1 year of testing, 5 initiated treatment within 6 months, while an additional 5 initiated within 1 year. Six participants were virally suppressed during the study; two were virally suppressed within 6 months of testing, and an additional four were virally suppressed within 1 year. Table 2. Clinical outcomes of 93 enrolled adolescents and young adults after testing HIV positive, 2018–2020 (n = 93) Clinical outcomes N (%) Number of HIV tests (lifetime) a 1 7 (8) 2–3 58 (62) 4+ 27 (29) Missing 1 (1) Repeat positive testers 22 (24) Linked to care Within 1 year b 11 (12) ART uptake Within 1 year c 10 (11) Viral suppression Within 1 year d 6 (7) Open in a new tab ART = antiretroviral therapy. a HIV tests at baseline. b 6 linked within 6 months. c 5 initiated ART within 6 months. d 2 were virally suppressed within 6 months. Baseline characteristics by antiretroviral therapy initiation. All 10 participants who initiated ART within 1 year of testing reported living with a parent or other relative compared to 69% of the remaining 83 participants who did not initiate ART reported ( Table 3 ). The percentage of employed AYA was numerically lower among those who initiated ART [1 of 10 (10%) vs. 18 of 83 (22%)]. While we observed only minor differences in most psychosocial factors by ART initiation, health literacy, future orientation on friendship, and disclosure differed. A higher proportion of AYA who initiated ART agreed that fresh fruit and vegetables cure AIDS [2 of 10 (20%) vs. 2 of 83 (2%)]. For future orientation, a lower percentage of AYA who initiated ART reported a low or very low likelihood of having friends to count on compared to AYA who did not initiate ART [2 of 10 (20%) vs. 54 of 83 (65%)]. While reported disclosure concerns appeared similar between groups, a greater proportion of those who initiated ART reported sharing their status with people in their household [7 of 10 (70%) vs. 25 of 83 (30%)]. We observed only minor differences in health services influences, including physician trust and trust in health plan. Overall, we observed few differences in scale scores; however, anticipated (AS) and enacted stigma (ES) scores were higher among those who did not initiate ART [mean difference AS : 0.4 (95% CI: 0.0–0.8); mean difference ES : 0.5 (95% CI: 0.1–0.8)] ( Table 4 ). Notably, scores were highly variable, particularly among those who initiated ART, for Generalized Anxiety Disorder (seven items) and Patient Health Questionnaire (nine items) scales. Table 3. Baseline characteristics of 93 adolescents and young adults by ART uptake and viral suppression within 1 year of testing HIV positive, 2018–2020 Selected participant characteristics Total ART uptake Viral suppression No Yes No Yes N (%) N (%) N (%) N (%) N (%) Sociodemographics Living with a parent or relative 67 (72) 57 (69) 10 (100) 61 (70) 6 (100) Employed 19 (20) 18 (22) 1 (10) 19 (22) 0 (0) Psychosocial influences Food insecurity Often have anxiety and uncertainty about food supply Yes 4 (4) 3 (4) 1 (10) 4 (5) 0 (0) Often have insufficient food quality Yes 8 (9) 6 (7) 2 (20) 7 (8) 1 (17) Often have insufficient food intake and its effects Yes 9 (10) 7 (8) 2 (20) 8 (9) 1 (17) Health literacy Witchcraft plays a role in HIV transmission Strongly agree or agree 0 (0) 0 (0) 0 (0) 0 (0) 0 (0) Vitamins and fresh fruit and vegetables cure AIDS Strongly agree or agree 4 (4) 2 (2) 2 (20) 3 (3) 1 (17) HIV was created by some groups to kill Africans Strongly agree or agree 4 (4) 4 (5) 0 (0) 4 (5) 0 (0) There is a cure for AIDS, but it is being withheld from Africa Strongly agree or agree 5 (5) 4 (5) 1 (10) 5 (6) 0 (0) Positive screen for generalized anxiety disorder Yes 3 (3) 1 (1) 2 (20) 2 (2) 1 (17) Missing 1 (1) 1 (1) 0 (0) 1 (1) 0 (0) Positive screen for depression Yes 4 (4) 2 (2) 2 (20) 3 (3) 1 (17) Missing 1 (1) 1 (1) 0 (0) 1 (1) 0 (0) Alcohol use Two or more times per week 8 (9) 7 (8) 1 (10) 7 (8) 1 (17) Missing 4 (4) 4 (5) 0 (0) 4 (5) 0 (0) Ever smoked Yes 17 (18) 16 (19) 1 (10) 16 (18) 1 (17) Missing 1 (1) 1 (1) 0 (0) 1 (1) 0 (0) Future orientation Chances that you will have friends to count on Very low or low likelihood 56 (60) 54 (65) 2 (20) 54 (62) 2 (33) Missing 1 (1) 0 (0) 1 (10) 1 (1) 0 (0) Chances that you will have a happy family life Very low or low likelihood 11 (12) 11 (13) 0 (0) 11 (13) 0 (0) Missing 1 (1) 0 (0) 1 (10) 1 (1) 0 (0) Chances that you will stay in good health Very low or low likelihood 6 (7) 6 (7) 0 (0) 6 (7) 0 (0) Missing 0 (0) 0 (0) 1 (10) 1 (10) 0 (0) Disclosure Told any person in household 32 (34) 25 (30) 7 (70) 28 (32) 4 (67) Told any person outside household 15 (16) 12 (14) 3 (30) 13 (15) 2 (33) Disclosure concerns I feel the need to hide my HIV status 81 (87) 74 (89) 7 (70) 77 (89) 4 (67) People will tell others 81 (87) 73 (88) 8 (80) 76 (87) 5 (83) Worry people may judge me 86 (93) 76 (92) 10 (100) 80 (92) 6 (100) Telling someone I have HIV is risky 81 (87) 73 (88) 8 (80) 76 (87) 5 (83) Health service influences Physician trust A little or not at all 3 (3) 2 (2) 1 (10) 3 (3) 0 (0) Health plan trust A little or not at all 0 (0) 0 (0) 0 (0) 0 (0) 0 (0) Missing 1 (1) 0 (0) 1 (10) 1 (1) 0 (0) Open in a new tab ART = antiretroviral therapy. Table 4. Baseline scale scores of 93 adolescents and young adults by ART uptake and viral suppression within 1 year of testing HIV positive, 2018–2019 Scale ART initiation Viral suppression No (n = 83) Yes (n = 10) Mean difference (95% CI) No (n = 87) Yes (n = 6) Mean difference (95% CI) Mean SD Mean SD Mean SD Mean SD Food insecurity 16.3 3.8 15.3 6.6 1.0 (−3.7, 5.7) 16.2 3.8 15.2 7.6 1.1 (−6.9, 9.1) Intrinsic religiosity 12.1 4.3 11.7 5.2 0.4 (−3.4 to 4.2) 12.1 4.2 11.0 6.2 1.1 (−5.4 to 7.6) GAD-7 score 3.5 2.3 4.6 5.4 −1.1 (−5.0 to 2.8) 3.5 2.4 4.5 6.4 −1.0 (−7.7 to 5.7) PHQ-9 score 3.8 2.9 7.2 7.1 −3.4 (−8.5 to 1.7) 4.0 3.3 7.2 6.9 −3.2 (−10.3 to 4.0) Internalized stigma 3.1 0.8 2.9 1.0 0.3 (−0.4 to 1.0) 3.1 0.8 3.1 1.2 0.0 (−1.3 to 1.2) Anticipated stigma 2.3 0.6 1.9 0.5 0.4 (0.0e0.8) 2.3 0.6 1.9 0.4 0.4 (0.0e0.9) Enacted stigma 2.3 0.7 1.8 0.4 0.5 (0.1e0.8) 2.3 0.7 1.9 0.4 0.4 (0.0 to 0.8) Brief COPE 1.3 0.5 1.7 0.7 −0.3 (−0.8 to 0.2) 1.4 0.5 1.7 0.7 −0.4 (−1.1 to 0.4) Self-esteem/self-efficacy 19.6 2.2 20.8 1.6 −1.2 (−2.5 to 0.1) 19.6 2.2 20.6 1.9 −1.0 (−3.4 to 1.4) Open in a new tab 95% bootstrap confidence interval for difference between means: 10,000 samples. Some missingness in variables, no greater than n = 2 for each scale. Brief-COPE = Coping Orientation To Problems Experienced; CI = confidence interval; GAD-7 = Generalized Anxiety Disorder seven-item survey; PHQ-9 = Patient Health Questionnaire nine-item; SD = standard deviation. Baseline characteristics by viral suppression. Participants with no record of ART initiation were considered not virally suppressed. Of 10 participants who initiated ART, six had documentation confirming viral suppression within 1 year ( Table 3 ). We observed only minor differences in psychosocial influences between groups defined by virological suppression (with those not starting ART counted as not virally suppressed), as well as employment [n = 0 of 6 (0%) vs. n = 19 of 87 (22%)], having low likelihood of friends to count on in the future [n = 2 of 6 (33%) vs. 54 of 87 (62%)], and disclosure within the household [4 of 6 (67%) vs. 28 of 87 (32%)]. Health service influences related to physician and health plan trust were also similar between groups defined by viral suppression within 1 year. Scale scores were similar to those observed in comparisons by ART initiation. We observed higher AS [mean difference AS : 0.4 (95% CI: 0.0–0.9)] and ES [mean difference ES : 0.4 (95% CI: 0.0–0.8)] among AYA who were not virally suppressed within 1 year of testing. Discussion Our study provides further evidence that AYA living with HIV in South Africa continue to face challenges when initiating treatment and achieving viral load suppression, despite progress in testing rates and the widespread availability of ART. Out of 93 participants included in this analysis, only 10 had evidence of initiating ART within a year of diagnosis. All reported living with a parent or relative and were more likely than the group who did not initiate ART to disclose their HIV status to household members. A greater proportion of AYA who did not initiate ART reported low or very low likelihood of having “friends to count on,” and the mean score for AS and ES was higher compared to AYA who initiated ART. Notably, we observed only minor differences in internalized stigma by ART initiation. There did not appear to be a relationship between health services influences and ART initiation or viral suppression among participants who linked to care, though this group is small. Our findings highlight the role of key family members and friends in ensuring that AYA living with HIV feel safe and cared for by their community. Interpersonal relationships can facilitate HIV testing and treatment uptake among AYA, particularly through reducing AS [ 39 ], which was associated with ART non-initiation in our study, and may ultimately lead to improved HIV-related outcomes [ 40 ]. Disclosure of HIV status within the context of supportive social relationships may also influence treatment outcomes; in one study, disclosure was associated with better adherence to follow-up at clinics compared to nondisclosure [ 41 ]. In our study, disclosure to household members was associated with adherence to ART at 1 year following diagnosis. This is similar to a study examining disclosure patterns and predictors among pregnant women in South Africa, which found that 71% of participants who initiated ART upon diagnosis had disclosed to their family or community members [ 42 ]. There is clear need for family-focused interventions to support AYA living with HIV and their family members, even as they age, to reduce HIV stigma and improve HIV care outcomes [ 43 ]. Health-care providers also play an important role in ensuring that young people can avail themselves of the most effective therapeutic options for HIV treatment. In South Africa, national policies support AYA in starting same-day treatment, despite their young age [ 44 ]. The South African Children’s Act allows children to independently consent to ART if they are above 12 years old, of sufficient maturity, and can understand the benefits, risks, and implications of treatment. However, real-world practice is not always reflective of these progressive policies. Negative health-care provider attitudes and beliefs may present a barrier to AYA uptake of HIV treatment [ 45 – 47 ]. In particular, clinician attitudes on sexual activity among young people and related community norms [ 48 – 50 ] may inhibit AYA from receiving consistent and reliable access to treatment. Some HIV clinicians have developed HIV services specifically tailored to adolescent needs and the realities of health-care delivery in South Africa. These adolescent-friendly HIV services have shown promising results in Cape Town [ 51 ] and elsewhere [ 11 ]. However, greater system-level changes are needed in the health-care system to support health-care providers creating and enabling community for AYA living with HIV and ensure that appropriate HIV services are available nationwide [ 52 ]. There are some important limitations to this study. First, the very small size of some of the key comparison groups, such as defined by ART initiation and viral suppression, mean that the results observed are not highly robust due to the high influence among these small numbers when compared for dichotomous characteristics (e.g., employment, disclosure to family, etc.) and between groups differences with ostensibly large percentage differences (e.g., 67% vs. 33%) are not statistically significant. However, we intend for this study to provide an exploratory description of this population and do not mean to imply statistically significant differences between groups. Second, to confirm linkage to care, we searched NHLS data to find participants by matching names, surnames, dates of birth, and phone numbers. However, not all participants had a phone number, and South African identification numbers were not included in the search. This approach also could have excluded participants whose information could not be linked to their NHLS record, for example, if a participant provided a false name at the time of testing in order to protect their privacy, as AS and ES were found to be high in our sample. However, we considered the NHLS record the best available data source for the primary clinical outcome because of its comprehensive, automated, daily data consolidation methods which comprise a range of government data sources [ 53 ], but it is possible that some of the participants who we did not find in the NHLS database did still link to care. In addition, the survey included several instruments covering potentially sensitive topics for some participants, including depression and substance use, which may have led to social desirability bias, and therefore, under-reporting. Social desirability bias is a common phenomenon in HIV research in similar contexts [54e56], which may have been more prominent in our adolescent population. We attempted to address this by ensuring rigorous training in interviewing techniques provided by team members experienced working with AYA and ensuring that appropriate referrals were made when necessary. Lastly, while our sociobehavioral survey was comprehensive, we did not inquire about housing status (housed vs. unhoused). It is possible that on the housing survey we included, the options for “living with friends” and “other” could have been chosen by the participant as proxies to “unhoused.” Despite these limitations, this is one of the first observational studies of AYA recently diagnosed with HIV in South Africa to examine comprehensive behavioral data in the context of a new diagnosis. Conclusions AYA are a key population of focus in the context of the current HIV epidemic in South Africa. Our findings underscore the challenges young people face after a new HIV diagnosis, particularly stigma-related barriers, and highlight the importance of social support, including family members, in facilitating treatment initiation and ultimately viral load suppression for AYA living with HIV. Future psychosocial interventions could focus on the role of key family members and friends in providing safe spaces for disclosure, which can facilitate treatment initiation for AYA. Supplementary Material Supplementary Material NIHMS2121134-supplement-Supplementary_Material.docx (58.7KB, docx) Supplementary data related to this article can be found at 10.1016/j.jadohealth.2025.04.027 . IMPLICATIONS AND CONTRIBUTION. AYA are a key population in South Africa’s HIV epidemic. This study highlights that young people continue to experience challenges after a new HIV diagnosis. These findings suggest the importance of social support, particularly from family members, in facilitating treatment initiation and, ultimately, viral load suppression. Family-strengthening interventions and support with disclosure of HIV status could be strategies to improving HIV-related health outcomes for AYA living with HIV. Acknowledgments This study would not have been possible with the dedication of the study participants in South Africa. This work was accepted for presentation at the 17th International Conference on HIV Treatment and Prevention Adherence. Ingrid T. Katz designed and led the study with guidance and oversight from Linda-Gail Bekker, Ingrid V. Bassett, Claude A. Mellins, and Lisa M. Butler Elzette Rousseau, Siyaxolisa Sindelo, Robin Julies, and Andrew Boulle led the acquisition of the data. Tiffany Lemon analyzed the data with guidance and oversight from L.S., Ingrid T. Katz, Linda-Gail Bekker, Lisa M. Butler, Valerie A. Earnshaw, and Claude A. Mellins. All authors assisted with the writing and revising of the manuscript and provided final approval of the version to be published. All agreed to be accountable for all aspects of the work. Funding Sources This study was funded by the Harvard University Center for AIDS Research Developmental Award (P30 AI060354) and the Brigham Research Institute Awards. This publication was made possible with help from the Harvard University Center for AIDS Research, an NIH-funded program (P30 AI060354), which is supported by the following NIH Co-Funding and Participating Institutes and Centers: NIAID, NCI, NICHD, NIDCR, NHLBI, NIDA, NIMH, NIA, NIDDK, NINR, NIMHD, FIC, and OAR. Footnotes Conflicts of interest: The authors have no conflicts of interest to disclose. Disclaimer: The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Ethics Approval All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments. 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