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Abstract

Globally, the number of adolescents and young adults (AYAs) living with human immunodeficiency virus (HIV) has steadily increased; however, retaining them in antiretroviral treatment (ART) remains a challenge. This scoping review identifies and synthesizes research findings on ART adherence of AYAs living with HIV in South Africa. We conducted electronic searches across various databases and identified 20 peer-reviewed articles. Five key themes that characterize the research on ART adherence among AYAs living with HIV emerged. The themes include balancing healthcare and daily activities, desire for HIV status secrecy, psychosocial implications and knowledge of ART. Availability of support was found to enhance ART adherence. ART adherence barriers included treatment and healthcare-specific challenges requiring adjustments from facilities and AYAs. Enhancing ART adherence requires individuals’ knowledge of ART and acceptance of their HIV status. The Healthcare system may need to be flexible to accommodate this group as they navigate between daily activities and ART adherence.

Plain Language Summary Title

HIV Treatment Adherence Challenges From a Collection of Research Studies

Plain Language Summary

The review intends to map and synthesize findings from different research focusing on challenged and motivators to treatment adherence to improve the health and well-being of young people living with HIV.

Keywords

adolescents young adults HIV antiretroviral treatment adherence

Introduction

Human immunodeficiency virus (HIV) prevalence among adolescents and young adults (AYAs) remains high, owing to the availability and efficacy of highly active antiretroviral treatment (ART). Globally, ∼1.7 million adolescents aged 10–24 were living with HIV in 2021, representing a critical demographic in the fight against the epidemic.¹ A recent survey in South Africa reported 19 000 new infections among adolescent boys and 19 200 among girls aged 15–24.² Indicating the need for early initiation and retention in ART to achieve better health outcomes, including viral load suppression.

As the population of AYAs living with HIV and on treatment continues to grow, reaching optimal treatment adherence becomes a challenge. The 2022 survey also found low viral load suppression rates among AYAs aged 15–24, with rates of 68% for females and 70% for males.² While various factors contribute to nonadherence, the majority can be attributed to the significant influence of behavioral, psychosocial and physiological complexities, all of which require management at different levels of care.^3–5 This is evident as several studies indicate lower ART adherence rates among individuals aged 15–24 compared to those in older age groups.^2,4,5 Interruptions in ART not only hinder efforts to reduce HIV related deaths but also compromise the potential for prolonged life among adolescents.

The transition to adulthood for AYAs introduces many structural and social challenges that can significantly hinder treatment adherence. Due to these complex challenges, it is crucial to conduct a comprehensive analysis to identify the common contributing factors that negatively impact treatment adherence. One significant issue is the side effects and physical challenges associated with treatment, which can complicate identity during this critical developmental stage.⁶ Additionally, the challenges and unreadiness for taking the lifelong daily pills can lead to poor self-management decisions, such as pill breaks and interrupting treatment.^7,8 These choices can ultimately result in low viremia and, if not addressed, may lead to high viral load.^7,8 Understanding these dynamics is essential for developing effective strategies to support AYAs in maintaining their treatment regimens.

As AYAs mature, the complexities of HIV stigma and the need to disclose to families, peers, school teachers, and sexual partners become apparent.^6,9 Such disclosure can expose them to stigma, discrimination and rejection, as well as potential violence and abandonment, all of which can significantly affect treatment adherence.^9–11 Additionally, socio-economic factors play a crucial role in treatment behaviors, as issues such as transport costs, availability of food and support systems can greatly influence adherence among AYAs living with HIV.^7,8

Healthcare services and clinical factors can significantly influence treatment nonadherence among patients.¹² Commonly cited issues include prolonged waiting times, long queues, drug shortages, inflexible appointment schedules, and staff attitudes, all of which contribute to treatment interruption among AYAs.^3,6,13 Among these factors, the attitudes of healthcare staff can significantly impact clients’ willingness to ask questions about their treatment and negotiate alternative appointment dates.¹³ This scoping review aims to synthesize existing literature on treatment adherence and interruption among AYAs living with HIV in South Africa, while also identifying research and implementation gaps that could inform future interventions to curb frustration and treatment interruptions. By mapping out and analyzing the available evidence, this review aims to provide valuable insights into how healthcare systems can enhance treatment retention strategies for AYAs living with HIV, ultimately improving their health.

Methodology

We conducted a systematic search across multiple databases, including PubMed, Scopus, Web of Science, and Google Scholar, from May 2025 to July 2025. To ensure a comprehensive review, two independent reviewers conducted the literature search across the specified databases for the duration of time. We developed and applied a person, context and content (PCC) framework to guide the search and determine the eligibility criteria for the study to be mapped and included, as summarized in Table 1.¹⁴

Table 1.

PCC Framework.

Framework category	Variables
Population	Adolescents and young people, Age: 10–30, all genders
Concept	HIV treatment adherence
Context	South Africa, adolescents and young adults living with HIV, adolescents and young adults living with HIV

Abbreviations: PCC, person, context and content; HIV, human immunodeficiency virus.

Search and Identification of Literature

To streamline our search and ensure relevance, we employed a set of targeted keywords such as “adolescents living with HIV,” “young adults living with HIV,” “HIV treatment,” “Treatment adherence,” “Treatment compliance,” “HIV treatment default,” “HIV treatment support,” and “family support.” We included studies published between 2000 and June 2025 that specifically addressed treatment adherence challenges among AYAs living with HIV.

We conducted a systematic search for articles published in peer-reviewed journals that presented original research on studies conducted in South Africa. The selection criteria included articles published in English and classified as original research and specifically addressing ART adherence of adolescents and young adults aged 10–30 living with HIV.

The Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR) guidelines were applied to conduct and report this scoping review.^15,16 Following the scoping review methodology and PRISMA-ScR guidelines, no critical appraisal of included studies was performed. Initially, we identified 213 articles, of which 147 met the preselection criteria. The excluded articles primarily consisted of reviews, unpublished preprints, and studies with a different age range and conducted outside of South Africa. The selected articles were imported into the reference manager, EndNote 20.¹⁷

The 147 articles were imported to a shared electronic platform for reviews, Rayyan, a software application designed for systematic and scoping reviews.¹⁸ This platform facilitated a preliminary cleaning process to identify duplicates, resulting in the identification of 24 duplicate entries. Following deduplication, 12 duplicates were removed, resulting in a total of 135 articles for screening based on the determined inclusion criteria. This screening process resulted in the selection of 45 articles for full-text screening. On completion of full text review, 22 articles were deemed eligible by both reviewers, while four were selected by only one reviewer. Discrepancies regarding these four articles were resolved through discussion among reviewers, with articles included only upon mutual agreement; a consensus was ultimately reached on two of the articles. In total, 20 articles were identified for data extraction and analysis.

Data Extraction and Analysis

Inductive and deductive data extraction approach were applied following the PCC framework and the agreed terms of reference, utilizing a standardized extraction tool for data capturing.¹⁴ The reviewers collaboratively created a codebook, which was subsequently used to conduct qualitative content analysis to identify common codes and themes across studies. This initial analysis was followed by a team discussion to reach a consensus on the final themes, enhancing the reliability and validity of the thematic analysis. A six-step coding reliability thematic approach guided further analysis, beginning with open coding and grouping codes which were based on the review objectives. Subsequently, the codes were categorized to facilitate effective clustering of the extracted text segments, highlighting emergent themes by selecting illustrative quotes with consideration of both explicit and implicit meanings.

Results

The studies that were identified and deemed eligible during the selection process are listed in detail in Table 2. Our search included research conducted in South Africa from 2000 to June 2025. Among the 20 identified studies, 12 applied qualitative approaches, and nine applied quantitative approaches. Based on this search, eligible manuscripts were of studies conducted in six of the nine provinces. Even of the studies were conducted in the Western Cape, followed by Gauteng with five studies, KwaZulu-Natal had two studies, with Limpopo and Northwest having one study each and one study recruited participants in both KwaZulu-Natal and Gauteng provinces.

Table 2.

Summary of Aims, Methods, Participants, and Key Findings of Studies Included in the Review.

Authors	Year of publication	Province	Aim/purpose	Methodology	Study population	Key findings
Maskew M, Fox MP, Evans D, Govindasamy D, Jamieson L, Malete G, Mongwenyana C and Technau K	2016	Gauteng	This study aimed to identify barriers and facilitators to remaining in and adhering to the continuum of ART care among HIV-infected adolescents.	Prospective cohort study: Structured interviews and clinical records review.	One hundred twenty-six HIV infected adolescents who were aware of their status and accessing ART treatment, age range 12–20	The study found that as adolescents grow older, they are more likely to miss their clinic appointments while having a mother as a primary caregiver. Those who were in agreement that unfriendly healthcare workers, treatment challenges and fatigue are barriers to treatment were likely to miss their clinic appointments.
Hornschuh S, Dietrich Tshabalala C and Laher F	2017	Gauteng	To explore knowledge and experiences of adherence among AYAs attending treatment at the Perinatal HIV Research Unit in Soweto.	Four focus group discussions, eight in-depth interviews and clinical records.	Twenty-six adolescents and young adults living with HIV by self-report and receiving ART, age range 15–25	AYAs were found to have the correct knowledge on adherence, including the benefits and consequences. Life barriers resulting in suboptimal adherence were identified and reported despite the knowledge and understanding of adherence. Strategies to optimize adherence were identified.
Woollett N, Black V, Cluver L and Brahmbhatt H	2017	Gauteng	To examine the perceptions of perinatally infected adolescents on their infection disclosure, mental health state and HIV treatment and prevention.	In-depth semi-structured interviews.	Twenty-five adolescents living with perinatal HIV, age range 13–19	Participants reported consequent grief and a lack of understanding of HIV due to a lack of or incomplete disclosure. This lack of understanding was found to negatively influence treatment adherence. Secrecy around status and death affected HIV status understanding and resulted in difficulties in dealing with it, while grieving was found to have a negative impact on mental health and resilience.
Van Wyk B and Davids LC	2019	Western Cape	To describe challenges to living with HIV and adherence to ART among school-going adolescents who receive ART at a primary healthcare clinic.	Four focus group discussions and eight individual in-depth interviews.	Fifteen adolescents living with HIV, age range 10–19	The study reported barriers to adherence as schoolwork commitments, limited financial support, healthcare facility long waiting times and treatment fatigue. Additionally, disclosure dynamics played a significant role in treatment adherence. Social support was found to be a motivation for adherence.
Zanoni BC, Sibaya T, Cairns C and Haberer JE	2019	KwaZulu Natal	To assess facilitators and barriers to retention in care for adolescents living with HIV	In-depth semi-structured interviews	Twenty-eight adolescents living with HIV, age range 13–24. In addition, 14 caregivers	Conflict between academic needs and health needs was found to be the driver of poor treatment adherence. Fearing response and avoiding conflict with clinical staff due to missing appointments resulted in treatment interruption. Peer support for those attending adolescent-friendly facilities was improved by frequent interactions during visits. Adolescent-friendly hours enhance stronger relationships with healthcare providers.
Pantelic M, Casale M, Cluver L, Toska E and Moshabela Mosa	2020	Eastern Cape	To examine whether and how different types of discrimination compromise retention in care among adolescents living with HIV.	Cohort study: Structured interviews with baseline and follow-up overtime and clinical records.	Adolescents living with HIV, 1059 at baseline, 979 at 18 months, 514 linked to clinical data, age range 10–19	Discrimination was associated with poor retention to care. Period on treatment, HIV status awareness and retention in care were associated with lower chances of virological failure.
Van Wyk B and Teti M	2020	Western Cape	To explore adolescents’ facilitators and barriers to ART adherence using the photovoice approach.	A pilot: three photovoice groups.	Ten adolescents living with HIV, age range 15–19	The use of daily reminders was found to be a motivator for treatment adherence. Health education and awareness were identified during discussions. Positive attitude in terms of challenging socioeconomic and environmental conditions, family conflict, and questions about self and stigma.
Hickson W and Mayers PM	2020	Western Cape	To explore ways in which young people get motivated to take their antiretroviral treatment, and how adherence messaging is done.	Grounded theory: Participant observations, four focus group discussions and semi-structured interviews.	Eighty adolescents living with HIV participated in focus group discussions, and 10 were invited for individual interviews, age range 16–24	The diagnosis of HIV resulted in trauma, which was exacerbated by fear of illness and early death, partner and family rejection and loss of hope. Acceptance and love were found to be desired by those who received their diagnosis. The experience of acceptance and support from friends and family motivated young people to learn about their treatment.
Richwood TD, Aissatou BA, Ingram L, Atujuna M, Marcus R, Ntlapo N, Oduro A and Bekker L	2020	Western Cape	To identify the aspects of the healthcare facility environment that either improve or inhibit adolescents living with HIV's ability to engage in HIV care.	Semi-structured in-depth interviews.	Twenty adolescents living with HIV, 19 caregivers, and 20 stakeholders. Adolescents’ ages were 13–19.	Adolescents identified facilitators to treatment retention as the availability of adolescent-focused practices and services. Long waiting times and appointments that clash with school attendance were cited as barriers to treatment retention.
Cluver L, Shenderovich Y, Toska E, Rudgard WE, Zhou S, Orkin M, Haghighat R, Chetty AN, Kuo C, Amstrong A and Sherr L	2020	Eastern Cape	To examine healthcare provision and family care factors for nonadherence and identify adherence support strategies	Structured interviews and clinical records’ data extraction.	Nine hundred sixty-nine adolescents living with HIV, age range 10–19.	Adherence was associated with improved confidentiality in the clinic setting. Adolescents who travelled for less than an hour to facilities were likely to adhere to treatment. Lastly, the reduction in violence exposure was associated with a greater likelihood of adherence.
Adams L and Crowley T	2021	Eastern Cape	To explore the self-management needs of adolescents living with HIV.	Semi-structured in-depth interviews.	Thirteen adolescents living with HIV, age range 14–19	Limited knowledge and understanding of HIV were identified. Stigma and disclosure remained a challenge as some participants struggled with self-regulation skills related to making disclosure decisions, managing their emotions, treatment adherence and communication.
Orth Z and van Wyk B	2021	Western Cape	To explore the experiences and challenges of being on ART.	Photovoice and individual semi-structured in-depth interviews.	Eighteen adolescents living with HIV and five healthcare workers. Adolescent age range 10–19	Family support and positive mentality was found to enhance treatment adherence. HIV status disclosure remained a challenge due to community stigma. Treatment-related challenges, such as side effects, contributed to poor adherence.
Renken CA, Harrison AD, Mtukushe B, Bergam S, Pather A, Sher R Davidson BJ, Carrihill M, Matiwane M, Kuo C, Galarraga O and Hoare J	2021	Western Cape	To examine adolescent and caregiver perspectives on peer support groups.	Semi-structured in-depth interviews.	Thirty-five adolescents living with HIV, receiving treatment from a dedicated adolescent clinic for HIV treatment and care, age range 12–19, caregivers and clinicians.	Peer support groups were found to encourage treatment adherence and psychosocial support. Difficulty with HIV serostatus disclosure was reported by adolescents. Adolescents felt supported by their peers.
Nyamuruze P, Governder K and Cowden RG	2021	KwaZulu Natal	To examine associations between self-esteem, internalized HIV/AIDS-related stigma, body appreciation, and ART adherence in young people living with HIV.	Exploratory path-analytic mediation modeling.	Seventy-six young people living with HIV, age range 15–24	Self-esteem and ART adherence were indirectly associated through a two-step path of internalized HIV/AIDS-related stigma and then body appreciation, as well as a one-step path through internalized HIV/AIDS-related stigma.
Mabizela S and van Wyk B	2022	Gauteng	To determine the prevalence of viral suppression and the associated factors among adolescents on ART.	Cross-sectional survey: Patient management data extracted from TIER.net	One hundred ninety-two adolescents living with HIV on antiretroviral treatment, aged 10–19.	The majority of adolescents reported having disclosed their status to someone. At least half of the adolescents were adhering to their treatment regimen. Treatment adherence had a positive association with viral suppression.
Malo VF, Ritchwood TD, Hart LJ and Atujana M	2023	Western Cape	To characterize the type of family support on treatment retention and adherence among adolescents living with HIV.	Semi-structured in-depth interviews	Twenty adolescents living with HIV, 19 caregivers, and 20 stakeholders. Adolescents’ ages were 13–19.	Families were identified as crucial support, assisting youth with reminders to take treatment and emotional support. Family members assisted with medication collections during school days to reduce school absence.
Mabasa RA, Madiba S and Mothiba TM	2023	Limpopo	To investigate and contextualize the role of structural, familial and psychosocial factors in sustaining treatment adherence.	In-depth interviews	Twenty-one adolescents with perinatally acquired HIV	Challenges with clashing clinic appointments with school attendance and lack of transport were found to be the main drivers of treatment interruptions. Family secrets delayed disclosure to
Nice J, Saltzman L, Thurman TR and Zani B	2024	Gauteng and KwaZulu- Natal	To identify subgroups based on self-reported reasons for treatment doses through latent analysis	Cross-sectional: Latent class analysis of survey data	Eight hundred fifty-seven adolescents living with HIV and aware of their status, age range 14–24	Skipping of Antiretroviral treatment doses due to not feeling well, forgetting and the presence of others emerged in the findings. The majority of respondents reported missing three or fewer doses in the past month, and were predicted as potential candidates for class membership to enhance adherence.
Khangale HMM, Raliphaswa NS and Tshililo AR	2024	North West	To explore the experiences of adolescents on antiretroviral therapy in two primary healthcare clinics	Semi-structured in-depth interviews	Thirteen adolescents living with HIV, age range 15–19	Treatment side effects, such as drowsiness, changes in body image, and headaches, were reported as the main drivers of treatment interruptions. Internal stigma resulted in secrecy and difficulty in disclosing status to peers and sexual partners, which led to poor treatment adherence.
Inman EM, Zhang X, Madi P, Ramsammy CW, Hammock AC, Violari A and Kidman R	2025	Gauteng	To test the impact of violence experiences on antiretroviral treatment adherence and viral load of adolescent boys living with perinatally acquired HIV	Ecological momentary assessment surveys	Two hundred thirty-nine adolescent boys living with HIV, aged 15–19	Adolescents exposed to intimate partner violence were less likely to take their treatment on days when this happened. Violence was found to be affecting treatment adherence and viral load suppression among adolescent boys.

Abbreviations: AYAs, adolescents and young adults; HIV, human immunodeficiency virus; ART, antiretroviral treatment.

The analysis of this review identified five themes that characterized both barriers and facilitators of treatment adherence for AYAs living with HIV. Under barriers to treatment adherence, four themes were identified as balancing healthcare and daily activities demands, desire for HIV status secrecy, mental health impact and knowledge and understanding of ART and adherence. Availability of support was found as an aching theme for facilitators of ART adherence.

Balancing Healthcare Access and Daily Activities

Denial about the need for lifelong treatment, forgetfulness (memory lapses) and treatment fatigue were identified as significant factors contributing to missed doses and treatment interruptions.^19–22 Additionally, structural and socioeconomic factors such as household dynamics, lack of food and financial resources to cover the transport costs were identified as barriers to treatment adherence, as those living in poverty often face challenges in consistently taking their treatment and keeping healthcare facility appointments.^20,23–26

Long distances to healthcare facilities, along with high costs and travel times, significantly impact treatment adherence as AYAs prefer healthcare facilities that are closer and more accessible.^20,25,27 AYAs constantly have to choose between attending school and keeping healthcare facility appointments, often prioritizing school attendance to avoid an impact on their academic performance.^19,28,29 On days when they prioritize healthcare appointments, the lack of adolescent-focused services and prolonged waiting times results in missing the entire day of schooling.^{19,20,26,28–30} Furthermore, experiences of poor treatment within healthcare facilities and perceptions of healthcare providers as unfriendly and unapproachable, especially those transitioning from pediatric services, are usually more pronounced among AYAs.^20,30,31

Desire for HIV Status Secrecy

Receiving assistance for treatment collections and getting additional lessons from teachers is often impractical, as they continue to struggle with stigma and the need for disclosure to peers, caregivers and even teachers, resulting in superficial relationships.^24,26,28 The desire for HIV status secrecy and concerns about being seen by other students and peers while collecting treatment contribute to feelings of embarrassment, which in turn negatively impacts treatment adherence as AYAs grappled with the burden of the diagnoses and treatment without adequate support.^{20,22,26–28,31–34} Additionally, the presence of others at home and shared living space led to skipping of doses and eventually altered adherence based on circumstances. Some AYAs managed to make means of privately excusing themselves to go and take their treatment, while others struggled to manage their circumstances.^21,22,30

Mental Health Impact

The findings from the reviewed studies indicate that emotional wellness significantly influences ART adherence. Orphaned adolescents struggle with complex grief and loss, adversely affecting their mental health and ART adherence.³⁵ For some adolescents, the trauma associated with learning their HIV status, upon receiving results or having their caregivers disclose to them, resulted in difficulty coping and eventually struggling with ART adherence.^33,35,36 Moreover, mental health disorders and lack of peer support and counselling services were associated with a higher risk of ART nonadherence.²⁰ The exposure to stigma, discrimination and experiences of diagnoses and disclosure may lead to internalized stigma, resulting in feelings of shame and guilt that compromise their ability to engage and remain in care.^{24,29,31,37,38} Additionally, repeated exposure to violence and acute traumatic incidents may contribute to long-term mental health issues such as depression, which in turn affects their treatment adherence, while removal of exposure was associated with a greater likelihood adherence.^25,38

Knowledge and Understanding of ART Adherence

Five studies examined the understanding and knowledge of treatment adherence among adolescents and young adults. The shared findings indicate a strong awareness of the importance of treatment adherence and the consequences associated with nonadherence.^22,33 Among adolescents with perinatal HIV, a lack of understanding regarding the biological rationale of their infection, diagnosis and treatment was identified.²⁴ Positive interactions and various sources of information about ART, including insights from healthcare providers and family members, were identified as factors that enhanced understanding and motivated adherence among AYAs.^22,26,34

Facilitators of Treatment Adherence: Availability of Support

Across studies, adolescents expressed a strong desire to live healthy lives and achieve personal goals, which served as a motivation for adhering to treatment regimens.^22,27 Family support emerged as a crucial factor, not only providing shelter, but also emotional encouragement and reminders for medication and healthcare visits for AYAs living with HIV. Those who receive family support demonstrated higher levels of treatment adherence, as this support often included setting alarms, assisting with treatment collection and accompaniment to appointments.^{22,26,29,30,33,35,39}

Emotional and appraisal support from families was also noted, as they encouraged AYAs to view their treatment as a pathway to a healthy future, thereby normalizing their HIV status.^26,27,29 Peer support groups were identified as another essential layer of support, providing a sense of community, encouragement and shared experiences with homogenous others, which further motivated treatment adherence.^28,34,36 Additionally, adolescent-friendly services were recognized as important facilitators of treatment adherence for AYAs living with HIV, with interactions with the healthcare professionals being critical, as they were reported to offer encouragement and education about HIV.^28,29,34

Discussion

The review synthesized existing literature elucidating the treatment adherence of AYAs living with HIV in South Africa. Despite the presence of numerous studies conducted on AYAs living with HIV in sub-Saharan Africa, this review aimed to focus on mapping the available evidence on treatment adherence in South Africa. Through this analysis, the available literature focused on both barriers to ART and facilitators of the same. Through the coding exercise, the subthemes emerged under the two main themes. The findings from the review underscore critical gaps to be closed and existing opportunities available to enhance treatment, management and empowerment of AYAs living with HIV.

The review findings highlight the daily challenges faced by AYAs on ART. Three studies emphasized the complexities associated with the expectation of managing chronic, lifelong treatment at a young age, emphasizing the need for accurate knowledge and skills to effectively self-manage and develop treatment adherence competencies.^40,41 Barriers to treatment adherence included forgetfulness, pill breaks, fatigue and side effects, which made taking ART uncomfortable and led to voluntary pill breaks and interruptions.^42,43 These behavioral patterns often resulted from balancing multiple social and family activities.^44–48 To mitigate forgetfulness, reminders such as alarms and personal diaries can be beneficial.⁴¹ Healthcare providers should leverage their observation and counselling skills to identify individual behaviors and provide tailored support. Enhanced adherence counselling should be considered for all adolescents, offering opportunities to educate them on pill timing and integrating treatment into daily routines.⁴⁹

AYAs living with HIV are expected to lead productive lives, which presents various socioeconomic challenges and demands. Caregivers are often faced with the reality of living on short-term and task-based employment to make ends meet.⁵⁰ The costs associated with travelling to healthcare facilities introduce an additional burden for AYAs and their guardians, who must also manage expenses related to food, school, work, and other daily necessities. These factors highlight the complex social issues faced by AYAs, with some of them being orphaned.⁵¹ Similar to their peers, AYAs living with HIV prioritize school attendance over healthcare visits, viewing education as a pathway to overcoming socioeconomic difficulties. The findings emphasize the need for multisectoral collaboration to develop interventions and policy guidance clearly outlining the management and support for AYAs with diverse needs.

Receiving positive HIV test results and subsequent disclosure by caregivers or self-discovery present psychological and emotional challenges for AYAs. In most cases, judging the timing of disclosure becomes challenging for healthcare providers and caregivers.⁵² Following disclosure, the intense feelings of hopelessness may lead to self-questioning and self-stigmatization, compromising the willingness to continue with treatment.⁵¹ While grappling with these different feelings, some AYAs do not receive adequate support. The desire for secrecy surrounding their status can disrupt relationships with families, peers, and teachers, limiting their ability to seek support.⁵³ While disclosure enhances treatment adherence,^46,54 the stress of maintaining secrecy negatively impacts daily lives and treatment routines. At times, leading to AYAs changing their appointment dates to avoid encountering people they know.⁴⁹ Effective bi-referral systems for psychosocial support must be established, including the disclosure and stigma mitigation guidance.

Concerns about being seen taking their treatment can be exacerbated by living in shared spaces, such as boarding school, hosting visitors at home, which interferes with treatment times and raises fear of stigma.^43,49,51 In contrast, a study in Limpopo found no direct association between stigma and nonadherence, however, it noted that some individuals resorted to alcohol as a means of coping with stigma, leading to treatment interruptions.^4,7 Additionally, exposure to violence can lead to long-term mental health issues that further interfere with treatment adherence, with studies linking neglect, abuse, and bullying to nonadherence.^42,47,55 This highlights the need for contextualized and individualized interventions when addressing ART adherence, with high consideration of backgrounds and social circumstances.

Across studies, the desire to live a healthy, long life remained the motivator for treatment adherence. The hope for their future life and desire to even have children motivated adherence.^54,56 Support from families, peers, and teachers is essential for AYAs to manage treatment demands and daily activities effectively. Good relationships and communication with caregivers and healthcare providers were found to reduce depressive symptoms and motivated adherence.^54,57 Pairing support with appropriate health education for AYAs and caregivers could be a valuable tool to enhance ART adherence. This education, along with tools like text appointment reminders and operating on weekends, can further support adherence.^45,58,59 While adolescent-friendly facilities offer safe spaces for AYAs, further evaluation is needed to ensure they meet the specific needs of those living with HIV.

Review Limitations

The scoping review has several limitations that were identified during the process. Firstly, the review was limited to studies conducted within a single country context, which limits the ability to draw comparisons with findings from other countries. Despite the efforts to conduct a comprehensive search, relevant studies published in nonindexed journals, unpublished works and articles in languages outside the inclusion criteria may have been missed, potentially introducing selection bias. Additionally, the data charting was primarily narrative, which may have introduced an element of subjectivity. Although the reviewers aimed to ensure the quality of the scoping review analysis by applying a six-step coding reliability thematic approach during analysis and adhering to PRISMA-ScR guideline for reporting, is important to note that, consistent with the scoping review methodology, a critical appraisal of the included studies was not conducted, Consequently, the quality and risk of bias of the included studies could not be assessed.

Conclusion

This review highlights several barriers to ART adherence among AYAs living with HIV. Key challenges include long distances to healthcare facilities, transport costs and long waiting times for scheduled appointments. Additionally, financial difficulties were identified as an additional concern, particularly for AYAs who are still in school, orphaned, or living with unemployed caregivers. The review also highlights the impact of HIV stigma on treatment adherence, emphasizing the need for ongoing support and counselling to help AYAs in navigating the complexities of living with HIV. The findings demonstrate the advantages of multifaceted support systems that enable young individuals to manage both daily life and treatment demands. Such support systems may include family assistance, school and teacher support and flexible healthcare services with supportive providers. Therefore, the strategies to enhance ART adherence should be flexible and more contextualized to meet the diverse needs of AYAs living with HIV for improved treatment outcomes.

Footnotes

Author Note

The authors, Dr Bandile Ernest Ndlazi and Prof David Ditaba Mphuthi, declare that the views expressed in this article are the researchers’ and not an official position of any institution mentioned in this document.

Acknowledgements

The author sincerely appreciates all those who contributed to the completion of this scoping review. I am especially thankful to Prof David Mphuthi for his invaluable guidance and support throughout my academic growth. A heartfelt appreciation goes to the late academic mother and mentor, Prof Thembekile Masango. Lastly, the University of South Africa's Department of Health Studies for making this work possible.

ORCID iDs

Bandile Ernest Ndlazi

David Ditaba Mphuthi

Ethical Considerations

This scoping review examined existing literature on antiretroviral treatment adherence among adolescents and young adults in South Africa. The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR) guidelines and ethical standards for studies using publicly available data. Considering that the review did not involve human participants, personal data or interventions, Institutional Review Board's ethical approval was not required. All the sources and materials included in this review were publicly available. The authors ensured the ethical integrity of the review by adhering to principles of transparency, integrity and responsible scholarship.

Author Contributions

Authors BN and DM conceived the initial idea for the review. BN created the review profile on Rayyan for article selection, while both authors collaborated on the literature search. All authors participated in discussions to agree on the selected articles and conducted the analysis. BN drafted the initial manuscript, and sections were subsequently distributed among authors for contributions, culminating in the final version of the manuscript.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The University of South Africa M&D bursaries supported this work.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

The review was conducted using the published literature.

References

UNAIDS. Dangerous inequalities: World AIDS Day Report; 2022. Accessed June 21, 2025. https://www.unaids.org/en/resources/documents/2022/dangerous-inequalities.

Zuma

Zungu

Moyo

, et al. The Sixth South African HIV Prevalence, Incidence and Behaviour Survey, 2022. 2024. Accessed June 15, 2025. https://hsrc.ac.za/wp-content/uploads/2024/07/SABSSM_VI_EXEC_REPORT_2PP.pdf.

Naidoo

Munsami

Archary

. Adolescent antiretroviral management: Understanding the complexity of non-adherence. SA Med J. 2015;105(11):953–953. doi:10.7196/samj.2015.v105i11.10150

Mabunda

Ngamasana

Babalola

, et al. Determinants of poor adherence to antiretroviral treatment using a combined effect of age and education among human immunodeficiency virus infected young adults attending care at Letaba Hospital HIV Clinic, Limpopo Province, South Africa. Pan Afr Med J. 2019;32(2019):37. doi:10.11604/pamj.2019.32.37.17722

Petinger

van Wyk

Crowley

. “I-We-I”: Visualizing adolescents’ perceptions and apprehension to transition to adult HIV care at a supportive transition facility in the Cape Town Metropole, South Africa. Tr Med Infect Dis. 2025;10(5):126. doi:10.3390/tropicalmed10050126

Hlophe

Tamuzi

Shumba

, et al. Barriers and facilitators to anti-retroviral therapy adherence among adolescents aged 10 to 19 years living with HIV in sub-Saharan Africa: A mixed-methods systematic review and meta-analysis. PLoS One. 2023;18(5):e0276411. doi:10.1371/journal.pone.0276411

Ashipala

Shuukwanyama

Nghikevali

. Factors associated with non-adherence to antiretroviral therapy among adolescents in Oshikoto Region, Namibia. S Afr Fam Pract. 2025;67(1):a6020. doi:10.4102/safp.v67i1.6020

Kamote

Tesha

Sunguya

. Factors associated with adherence to antiretroviral therapy among HIV-positive adolescents and young adult patients attending HIV care and treatment clinic at Bombo Hospital in Tanga region-Tanzania. PLoS One. 2025;20(1):e0316188. doi: 10.1371/journal.pone.0316188

UNAIDS. Aids, crisis and the power to transform. 2025. Accessed May 29, 2025. https://www.unaids.org/en/UNAIDS-global-AIDS-update-2025.

10.

WHO. HIV and adolescents: guidance for HIV testing and counselling and care for adolescents living with HIV: Recommendations for a Public Health Approach and Considerations for Policy-Makers and Managers; 2013. Accessed May 25, 2025. https://www.who.int/publications/i/item/9789241506168.

11.

Onyango

Chergui

Sabin

, et al. School-level barriers of antiretroviral therapy adherence and interventions to overcome them among adolescents living with HIV in Western Kenya: A qualitative study. Open AIDS J. 2021;15:93–107. 10.2174/1874613602115010093

12.

Bonolo

PDF

César

Acúrcio

, et al. Non-adherence among patients initiating antiretroviral therapy: A challenge for health professionals in Brazil. AIDS. 2005;19(4):S5–S13. doi:10.1097/01.aids.0000191484.84661.2b

13.

Seunanden

Ngwenya

Seeley

. Experiences and perceptions on antiretroviral therapy adherence and non-adherence: A scoping review of young people living with HIV in sub-Saharan Africa. BMC Pub Health. 2025;25(1):1450. doi:10.1186/s12889-025-22579-6

14.

Pollock

Peters

MDJ

Khalil

, et al. Recommendations for the extraction, analysis, and presentation of results in scoping reviews. JBI Evidence Synth. 2023;21(3):520–532. doi:10.11124/JBIES-22-00123

15.

Tricco

Lillie

Zarin

, et al. PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Ann Intern Med. 2018;169(7):467–473. doi:10.7326/M18-0850

16.

Sarkis-Onofre

Catalá-López

Aromataris

, et al. How to properly use the PRISMA statement. Syst Rev. 2021;10:117. DOI: 10.1186/s13643-021-01671-z

17.

Gotschall

. Endnote 20 desktop version. J Med Libr Assoc. 2021;109(3):520–522. doi:10.5195/jmla.2021.1260

18.

Ouzzani

Hammady

Fedorowicz

, et al. Rayyan – A web and mobile app for systematic reviews. Syst Rev. 2016;5(1):210. doi:10.1186/s13643-016-0384-4

19.

van Wyk

Davids

. Challenges to HIV treatment adherence among adolescents in a low socio-economic setting in Cape Town. South Afr J HIV Med. 2019;20(1):1002. doi:10.4102/sajhivmed.v20i1.1002

20.

Maskew

Fox

Evans

, et al. Insights into adherence among a cohort of adolescents aged 12–20 years in South Africa: Reported barriers to antiretroviral treatment. AIDS Res Treat. 2016;2016:4161738. doi: 10.1155/2016/4161738

21.

Nice

Saltzman

Thurman

Zani

. Latent class analysis of ART barriers among adolescents and young adults living with HIV in South Africa. AIDS Care. 2024;36(1):45–53. doi:10.1080/09540121.2024.2307389

22.

Hornschuh

Dietrich

Tshabalala

, et al. Antiretroviral treatment adherence: Knowledge and experiences among adolescents and young adults in Soweto, South Africa. AIDS Res Treat. 2017;2017:1–8. DOI: 10.1155/2017/5192516

23.

Mabasa

Muthelo

Skaal

, et al. Qualitative study on the voices of adolescents living with perinatally acquired HIV in selected clinics in the Limpopo Province of South Africa. Children. 2023;11(1):28. doi:10.3390/children11010028

24.

Khangale

HMM

Raliphaswa

Tshililo

. Experiences of adolescents on antiretroviral therapy at Rustenburg Sub-District, Northwest Province, South Africa. Children. 2024;11(2):143. doi:10.3390/children11020143

25.

Cluver

Shenderovich

Toska

, et al. Clinic and care: Associations with adolescent antiretroviral therapy adherence in a prospective cohort in South Africa. AIDS. 2021;35(8):1263–1271. doi:10.1097/qad.0000000000002882

26.

Malo

Ritchwood

Hart

, et al. A qualitative analysis of family support for adolescent HIV care in South Africa. AIDS Care. 2023;35(3):425–430. doi:10.1080/09540121.2022.2121956

27.

van Wyk

Teti

. Portraits of HIV: A pilot photovoice study of adolescent experiences with HIV treatment in South Africa. J Glob Health Rep. 2020;4(1911):e2020025. doi:10.29392/001c.12588

28.

Zanoni

Sibaya

Cairns

, et al. Barriers to retention in care are overcome by adolescent-friendly services for adolescents living with HIV in South Africa: A qualitative analysis. AIDS Beh. 2019;23(3):957–965. doi:10.1007/s10461-018-2352-6

29.

Ritchwood

Ingram

, et al. Community perspectives of South African adolescents’ experiences seeking treatment at local HIV clinics and how such clinics may influence engagement in the HIV treatment cascade: A qualitative study. AIDS Care - Psych Socio-Med Asp AIDS/HIV. 2020;32(1):83–88. doi:10.1080/09540121.2019.1653442

30.

Adams

Crowley

. Adolescent human immunodeficiency virus self-management: Needs of adolescents in the Eastern Cape. Afr J Prim Heal Care Fam Med. 2021;13(1):e1–e9. doi:10.4102/phcfm.v13i1.2756

31.

Pantelic

Casale

Cluver

, et al. Multiple forms of discrimination and internalized stigma compromise retention in HIV care among adolescents: Findings from a South African cohort. J Int AIDS Soc. 2020;23(5):e25488. doi:10.1002/jia2.25488

32.

Mabasa

Madiba

Mothiba

. Structural, familial, and psychosocial factors affecting long-term antiretroviral treatment adherence among adolescents living with perinatally acquired HIV in Limpopo, South Africa. Int J Env Res Pub Health. 2023;20(22):7074. doi:10.3390/ijerph20227074

33.

Orth

van Wyk

. A facility-based family support intervention to improve treatment outcomes for adolescents on antiretroviral therapy in the Cape Metropole, South Africa. J Int Assoc Prov AIDS Care. 2021;20:1–11. doi:10.1177/23259582211059289

34.

Rencken

Harrison

Mtukushe

, et al. “Those People Motivate and Inspire Me to Take My Treatment.” Peer support for adolescents living with HIV in Cape Town, South Africa. J Int Assoc Prov AIDS Care. 2021;20:23259582211000525. DOI: 10.1177/23259582211000525

35.

Woollett

Vivian

Lucie

, et al. Reticence in disclosure of HIV infection and reasons for bereavement: Impact on perinatally infected adolescents’ mental health and understanding of HIV treatment and prevention in Johannesburg, South Africa. Afr J AIDS Res. 2017;16(2):175–184. doi:10.2989/16085906.2017.1337646

36.

Hickson

Mayers

. Understanding how young people become motivated to take their human immunodeficiency virus medication (antiretroviral therapy) and how the need for adherence is communicated. Health SA. 2020;25. doi:10.4102/hsag.v25i0.1458

37.

Nyamaruze

Govender

Cowden

. Self-esteem and antiretroviral therapy adherence among young people living with HIV: An exploratory serial mediation analysis. SA J Sc. 2021;117:11–12. doi:10.17159/sajs.2021/8354

38.

Inman

Zhang

Madi

, et al. Violence as an obstacle to HIV medication adherence and viral suppression: A daily diary investigation among adolescent boys. Soc Sci Med. 2025;364(1):117549. doi:10.1016/j.socscimed.2024.117549

39.

Mabizela

van Wyk

. Viral suppression among adolescents on HIV treatment in the Sedibeng District, Gauteng Province. Curationis. 2022;45(1):a2312. doi:10.4102/curationis.v45i1.2312

40.

Lanyon

Seeley

Namukwaya

, et al. “Because we all have to grow up”: Supporting adolescents in Uganda to develop core competencies to transition towards managing their HIV more independently. J Int AIDS. 2020;23(5):e25552. doi:10.1002/jia2.25552

41.

Mukuku

Govender

Wembonyama

. Barriers and facilitators to HIV viral load suppression among adolescents living with HIV in Lubumbashi, Democratic Republic of the Congo: A qualitative study. PLoS One. 2025;20(3):e0320417. doi:10.1371/journal.pone.0320417

42.

Arroyo-Jiménez

Benjet

Robles

, et al. Social and mental health characteristics of adolescents living with HIV in Mexico: Implications for adherence to antiretroviral treatment. J Health Psych. 2024;29(4):289–302. doi:10.1177/13591053231207474

43.

Oluwole

Ibidapo

Akintan

, et al. Medication adherence, barriers to adherence and treatment satisfaction with antiretroviral therapy among adolescents living with HIV in Lagos, Nigeria. Ann Health Res. 2023;9(3):222–237. doi:10.30442/ahr.0903-06-208

44.

Biney

IJK

Adesi

Jessey

, et al. Antiretroviral therapy adherence and viral suppression among HIV-infected adolescents and young adults at a tertiary hospital in Ghana. Afr J AIDS Res. 2021;20(4):270–276. doi:10.2989/16085906.2021.1998783

45.

Audi

Jahanpour

Antelman

, et al. Facilitators and barriers to antiretroviral therapy adherence among HIV-positive adolescents living in Tanzania. BMC Pub Health. 2021;21:2274. DOI: 10.1186/s12889-021-12323-1

46.

Hlophe

Shumba

. “She tells me the HIV is eating my brains”: Barriers and facilitators to antiretroviral therapy adherence among Eswatini adolescents living with HIV. AIDS Care. 2025;37(2):310–323. doi:10.1080/09540121.2024.2443677

47.

Kim

S-H

Gerver

Fidler

, et al. Adherence to antiretroviral therapy in adolescents living with HIV: Systematic review and meta-analysis. AIDS. 2014;28(13):1945–1956. doi:10.1097/qad.0000000000000316

48.

Weaver

Miller

Harrison

. Perceived adherence-related barriers for youth living with HIV in the Southern United States. Clin Pract Ped Psych. 2025;13(2):171–179. doi:10.1177/21694826251322194

49.

Gill

Ndimbii

Otieno-Masaba

, et al. Adherence challenges and opportunities for optimizing care through enhanced adherence counseling for adolescents with suspected HIV treatment failure in Kenya. BMC Health Serv Res. 2022;22(1):962. doi:10.1186/s12913-022-08373-9

50.

Palmer

Ndubani

Sauer

, et al. Food and water insecurity in households of children and adolescents living with HIV and receiving care in a rural Zambian hospital: A mixed-methods study. PLoS One. 2024;19(6):e0300033. doi:10.1371/journal.pone.0300033

51.

Tunje

Jerene

Hallström

. Antiretroviral therapy and retention in care experiences and needs of adolescents living with HIV in Southern Ethiopia. HIV AIDS-Res Pall Car. 2021;13:999–1007. DOI: 10.2147/hiv.S339413

52.

Jerene

Tiberg

Hallström

. How can clinical outcomes among adolescents living with HIV in Ethiopia be improved? Healthcare professionals’ perspectives. Comp Chil Adol Nurs. 2022;45(2):191–200. doi:10.1080/24694193.2021.1914774

53.

Wogrin

Willis

Mutsinze

, et al. It helps to talk: A guiding framework (TRUST) for peer support in delivering mental health care for adolescents living with HIV. PLoS One. 2021;16(3):e0248018. doi:10.1371/journal.pone.0248018

54.

Jopling

Mutsvuke

Fertig

, et al. “What if I got rejected by the girl? I would rather stop the pills”: Barriers and facilitators of adherence to antiretroviral therapy for emerging adults aged 18–29 living with HIV in Zimbabwe. AIDS Care. 2024;36(1):168–178. doi:10.1080/09540121.2024.2332462

55.

Molebatsi

Ntlantsana

Brooks

, et al. Association between childhood trauma, mental health symptoms and adherence among youth living with HIV in Botswana. J Child Adol Trau. 2024;17(4):1079–1089. doi:10.1007/s40653-024-00658-x

56.

Wanda

Hayati

Rachmawati

, et al. “I can live a normal life”: Exploring adherence to antiretroviral therapy in Indonesian adolescents living with HIV. Bel Nurs J. 2022;8(2):108–114. doi:10.33546/bnj.2024

57.

Shenderovich

Boyes

Esposti

, et al. Relationships with caregivers and mental health outcomes among adolescents living with HIV: A prospective cohort study in South Africa. BMC Pub Health. 2021;21(1):172. doi:10.1186/s12889-020-10147-z

58.

Antelman

Jahanpour

Machalo

, et al. Adolescent support club attendance and self-efficacy associated with HIV treatment outcomes in Tanzania. PLOS Glob Pub Health. 2022;2(10):e0000065. doi:10.1371/journal.pgph.0000065

59.

Nhlongolwane

Shonisani

. Predictors and barriers associated with non-adherence to ART by people living with HIV and AIDS in a selected local municipality of Limpopo Province, South Africa. Open AIDS J. 2023;17. doi:10.2174/18746136-v17-230726-2023-2

The Complexities of Antiretroviral Treatment Adherence Among Adolescents and Young Adults in South Africa: Insights From a Scoping Review

Abstract

Plain Language Summary Title

Plain Language Summary

Keywords

Introduction

Methodology

Search and Identification of Literature

Data Extraction and Analysis

Results

Balancing Healthcare Access and Daily Activities

Desire for HIV Status Secrecy

Mental Health Impact

Knowledge and Understanding of ART Adherence

Facilitators of Treatment Adherence: Availability of Support

Discussion

Review Limitations

Conclusion

Footnotes

Author Note

Acknowledgements

ORCID iDs

Ethical Considerations

Author Contributions

Funding

Declaration of Conflicting Interests

Data Availability Statement

References