Exploring Barriers and Enablers to Antiretroviral Therapy Adherence Among Children and Adolescents in Rural South Africa: A Qualitative Study in the KSD Sub-District

2.1 Study design

A qualitative phenomenological design was employed to explore the lived experiences of children and adolescents regarding barriers and enablers of antiretroviral therapy (ART) adherence in the KSD Sub-District. Grounded in a constructivist philosophy, this approach inductively captured multiple, socially and historically constructed meanings of participants’ experiences, enabling rich, context-specific insights into adherence of behaviors and perceptions.

This methodological orientation allowed the study to foreground the relational, structural, and psychosocial dimensions of adherence, while preserving the authenticity of participants’ voices through verbatim transcription and translation. Situating adherence within its ecological context, the phenomenological design enhanced depth and rigor, ensuring that the findings contribute meaningfully to understanding pediatric HIV care in resource-constrained settings.

2.2 Data Source

Data was collected through in-depth, semi-structured, one-on-one interviews lasting approximately 45–60 minutes with 25 purposively selected participants. Interviews were conducted in participants’ preferred language (isiXhosa or English) (to ensure accessibility, cultural congruence, and contextual sensitivity within the rural KS) Sub-District. All interviews were audio-recorded with informed consent, supplemented by detailed field notes, and subsequently transcribed verbatim by a bilingual transcriber. A rigorous forward and backward translation process was employed to preserve linguistic accuracy and cultural meaning. Transcripts were systematically managed and coded in NVivo version 15 (Lumivero, Denver, Colorado, USA), enhancing auditability and minimizing data loss.

The bilingual interview guide, pre-tested for clarity and relevance, systematically probed socio-demographic characteristics, perceived barriers to ART adherence (structural, psychosocial, treatment-related), enablers of adherence (caregiver support, reminder systems, health service engagement), and participant-recommended interventions. This approach promoted comprehensive thematic saturation while adhering to COREQ reporting guidelines, thereby strengthening qualitative rigor and ensuring that findings authentically reflected the lived experiences of children, adolescents, and caregivers navigating ART adherence in resource-constrained settings.

2.3 Study Setting

The study was conducted in the KSD Sub-District, situated within the OR Tambo District Municipality of the Eastern Cape Province, South Africa. With a population of approximately 488,349, KSD is predominantly rural, marked by high levels of poverty, unemployment, and limited access to health services. Mthatha serves as the administrative and economic hub, yet many surrounding communities remain structurally disadvantaged in terms of healthcare accessibility. Traditional Xhosa cultural norms and socioeconomic vulnerabilities intersect with structural barriers such as distance to clinics and transport constraints, shaping adherence behaviors among children and adolescents. Of the clinics within the sub-district, one clinic and two CHCs were purposively selected as study sites. These facilities were chosen for their high patient volumes, established ART programs, and accessibility for data collection. Both centers provide ART services to children and adolescents, making them ideal for exploring adherence barriers and enablers in this vulnerable age group. Interviews were conducted in private, participant-preferred venues within the CHCs to ensure confidentiality, cultural safety, and contextual authenticity.

2.4 Study Population

The target population comprised HIV-positive children and adolescents below 18 years who were receiving ART at the selected CHCs, along with their caregivers. Both male and female participants were included. Caregivers who participated in the study reported that they were responsible for administering ART to younger children, while adolescents described their own adherence experiences. This population was purposively selected as it represents a vulnerable demographic facing unique adherence challenges due to developmental dependence, caregiver burden, and structural constraints characteristic of rural Eastern Cape settings.

2.5 Sampling

The researcher, Lethu Nontlanga (LN), employed a purposive sampling strategy to screen and select participants who met the inclusion criteria. The planned sample size was 15–25 participants, appropriate for a qualitative inquiry aiming to achieve data saturation, the point at which no new themes emerge. This range allowed for diverse perspectives while ensuring in-depth analysis. Sampling focused on children and adolescents with documented adherence challenges, along with their caregivers, to capture both individual and household perspectives.

2.6 Study Regour

The study used Lincoln and Guba’s (1988) framework to ensure trustworthiness, which includes four criteria: credibility, transferability, dependability, and confirmability.²⁰ Credibility was ensured through audio-recorded interviews; member checking, in which participants reviewed the transcribed data to confirm it reflected what they shared; comprehensive field notes; and two researchers conducting the data analysis. Documentation of the research procedures and decisions was carried out to ensure dependability. Confirmability was ensured through peer debriefing, in which an independent researcher, ZP, continuously reviewed the study processes, including during and after the interviews and during and after data analysis. The peer debriefing ensured that the researchers’ bias was minimised. Transferability was ensured by detailing the study setting.

2.7 Data Analysis

Data were analyzed using inductive thematic content analysis within an iterative framework to ensure rigor and depth. Transcribed interviews were imported into NVivo version 15 (Lumivero, Denver, Colorado, USA) for systematic organization and coding. The process began with careful editing of transcripts to check for accuracy and completeness, followed by coding responses into broad thematic categories that captured both explicit and underlying meanings. Emerging themes and sub-themes were then synthesized and presented with illustrative quotations to foreground participants’ voices. To establish trustworthiness, the study employed multiple strategies: credibility was enhanced through prolonged engagement and participant validation; transferability was supported by detailed contextual descriptions; dependability was ensured through an audit trail documenting analytic decisions; and confirmability was strengthened through reflexivity and triangulation. This rigorous analytic process grounded the findings in participant experiences, producing a reliable and transparent account of the barriers and enablers influencing pediatric ART adherence in the KSD Sub-District.

2.8 Ethical Considerations and Informed Consent

Ethical approval to conduct this study was obtained from the Walter Sisulu University Health Sciences Research Ethics Committee (WSUHREC199/2025) prior to data collection. Written informed consent was obtained from all adult participants prior to their participation in the study. As the study involved minors (children and adolescents below 18 years of age), written parental or guardian consent was obtained on behalf of all minor participants before any data were collected. In addition, age-appropriate written assent was obtained from adolescent participants who were able to understand the nature and purpose of the study. For younger children who were not yet able to provide meaningful assent, consent was obtained solely from their parents or legal guardians. Participants and their guardians were informed of their right to withdraw from the study at any time without consequence. All procedures were conducted in accordance with the ethical standards of the institutional review board and the Declaration of Helsinki.

3.1 Participant Characteristics

The study included 15 participants, most of whom were female (n = 11). The largest age group was 15–17 years (n = 7). Participants were recruited mainly from Ngangelizwe CHC (n = 8), and caregivers comprised the majority (n = 9). Most had been on ART for 5–9 years (n = 6), were diagnosed between 2018 and 2022 (n = 10), and were slightly more likely to be on TLD treatment (n = 8).

3.2 Overview of the Themes

From the data analyzed, three overarching themes emerged, reflecting barriers and enablers of ART adherence: household and psychosocial barriers (forgetfulness, stigma, and cultural beliefs), structural and treatment-related challenges (socio-economic constraints and side effects), and supportive enablers (caregiver commitment, reminder systems, positive health service support, and personal motivation). These are summarised in Table 2.

3.2.1 Theme 1: Household and Psychosocial Barriers

Household dynamics and psychosocial stressors emerged as critical determinants of adherence. The findings highlight that lapses in medication-taking were often linked to fragmented caregiving routines, caregiver burden, and emotional distress rather than deliberate refusal. Adolescents’ reliance on adult supervision underscores the vulnerability of pediatric adherence in contexts where household routines are unstable. Stigma and fear of disclosure further compounded these challenges, limiting external support and increasing secrecy-related stress. Emotional strain was also evident in caregiver healthcare worker interactions, where negative communication weakened trust. Although religious and cultural beliefs can sometimes undermine adherence, participants in this study largely expressed confidence in biomedical treatment, suggesting that health messaging in the district has been effective.

Subtheme 1.1 Forgetfulness and Inconsistent Caregiving Routines

Forgetfulness and fragmented responsibility for caregiving emerged as dominant barriers to adherence. Younger adolescents were particularly dependent on adult supervision for consistent medication-taking. One caregiver explained:

This statement illustrates the absence of autonomous medication management and highlights reliance on caregiver presence. The issue was compounded by a lack of shared responsibility:

The findings suggest that adherence failures were not primarily due to deliberate refusal but were linked to instability in household routines. In sub-Saharan Africa, caregiver supervision remains the best indicator of pediatric viral suppression.¹⁸ For long-term adherence, children and younger adolescents need organized caregiver assistance.¹⁹ Missed clinic appointments further reflected this instability:

Appointment non-attendance in rural South Africa is often associated with caregiver workload and competing livelihood demands rather than intentional disengagement.²⁰ In this study, forgetfulness appears to reflect caregiver burden, time pressure, and limited shared support structures.

Subtheme 1.2 Stigma, Fear of Disclosure and Emotional Burden

Stigma emerged as both an internal and external barrier. Some caregivers restricted disclosure within extended families:

Limited disclosure reduced potential support for adherence and increased secrecy-related stress. Adolescents described peer judgment:

These findings are consistent with Moyo and Hlophe, who reported persistent stigma among adolescents in the Eastern Cape, leading to hidden medication-taking behaviors. The World Health Organization similarly found that stigma remains a major adherence barrier across sub-Saharan Africa.^15,21,22

Healthcare worker communication also influenced emotional well-being:

Murray et al. (2015) demonstrate that negative provider communication reduces patient trust and may weaken retention.²³ In this study, while clinic attendance continued, emotional distress was evident.

Subtheme 1.3 Religious and Cultural Beliefs

Most participants prioritized biomedical treatment over traditional alternatives:

Although literature shows that belief systems can interfere with ART adherence in some contexts, this sample demonstrated strong trust in ART. This suggests effective community health messaging and increasing biomedical confidence in the district.

3.2.2 Theme 2: Structural and Treatment-Related Challenges

Adherence was also constrained by structural and treatment-related barriers. Socio-economic pressures, including long travel distances to clinics and competing employment demands, disrupted routine medication-taking and appointment attendance. These findings reflect the intersection of poverty, geography, and healthcare access in rural South Africa. Treatment-related challenges, particularly poor palatability, large pill size, and vomiting, further complicated adherence. Concealment behaviors such as pill hiding or spitting illustrate covert resistance, were outward compliance masks internal struggles with treatment acceptance. These barriers highlight that adherence is not only a matter of willingness but also of structural vulnerability and medication tolerability. Without addressing these systemic and clinical challenges, adherence interventions risk being undermined by persistent environmental and treatment-related constraints.

Subtheme 2.1: Socio-economic and environmental barriers significantly influenced adherence of behavior

One participant described the burden of distance:

Geographic barriers such as long walking distances and poor infrastructure have been consistently linked to reduced retention in rural ART programs. The participant’s experience reflects structural vulnerability, where environmental hardship intersects with healthcare access.^24,25

Employment demands also disrupted routine:

Time poverty, especially among caregivers balancing employment and childcare responsibilities, has been recognized as an indirect contributor to missed doses reported similar findings in the Eastern Cape, where socio-economic pressures led to inconsistent dosing among adolescents.^26,27

The findings indicate that adherence challenges cannot be separated from broader economic realities. Structural constraints produce micro-disruptions that accumulate over time and threaten treatment stability.

Subtheme 2.2: Treatment-Related Challenges and Side Effects

Medication-related barriers emerged strongly, particularly regarding palatability, pill size, vomiting, and concealment behaviors.

Participants reported:

These findings show that child-unfriendly formulations compromise pediatric adherence globally. Bitter taste and large tablets have been repeatedly associated with non-adherence in African pediatric cohorts.²⁸

More concerning were behaviors indicating covert resistance:

Such concealment behaviors suggest that outward compliance may mask internal resistance. The World Health Organization notes that pill hiding and spitting are common among younger adolescents struggling with treatment acceptance.²⁹

Vomiting further complicates adherence:

Vomiting episodes can reduce effective dosing and contribute to virological failure if not clinically managed. The findings suggest that medication tolerability is not merely a clinical issue but a behavioral determinant of adherence.²⁹

3.2.3 Theme 3: Supportive Enablers of Adherence

Despite significant barriers, several enablers emerged that stabilized adherence trajectories. Caregiver commitment and family support transformed adherence from an individualized burden into a shared household responsibility, reducing secrecy and emotional stress. Structured reminder systems, such as anchoring medication-taking to daily routines or direct supervision, provided practical strategies to counter forgetfulness and concealment behaviors. Positive health service engagement, including reliable medication supply, respectful care, and differentiated service delivery, reinforced trust in the health system, and reduced structural friction. Finally, acceptance of HIV status and self-motivation among adolescents marked a turning point, shifting adherence from externally enforced to internally regulated. These enablers demonstrate that adherence resilience is fostered through a combination of supportive households, structured routines, reliable health services, and psychological adjustment.

Subtheme 3.1: Caregiver Commitment and Family Support

Caregiver commitment and family support emerged as one of the most stabilizing adherence enablers in this study. Unlike households characterized by fragmented supervision, several participants described shared responsibility and collective awareness of the child’s HIV status.

while another similarly reported,

These narratives suggest that disclosure within trusted family networks transforms adherence from an individualized burden into a distributed household function.

These findings align with the existing literature, which shows that pediatric ART adherence improves when responsibility is shared within the family system. Caregiver supervision is strongly associated with viral suppression among children and younger adolescents in sub-Saharan Africa. Adolescents embedded in supportive family networks exhibited higher self-efficacy for adherence and improved retention outcomes. The presence of informed household members creates redundancy in monitoring, reducing the risk of missed doses when the primary caregiver is unavailable.

Importantly, disclosure within supportive households also reduces stress related to secrets. Secrecy has been shown to increase emotional burden and medication concealment. In contrast, when adolescents are supported rather than judged, adherence becomes less performative and more authentic. One adolescent participant’s reflection captures this transformation:

The shift suggests that emotional safety within the household strengthens adherence agency.

Caregiver encouragement also appeared to be motivational. Participants described reassurance about future possibilities, framing ART not as a symbol of illness but as a tool for life continuity. Such future-oriented narratives reinforce what WHO (2021) identifies as adherence resilience, the capacity to sustain treatment despite chronic disease identity. This indicates that family support functions not only as practical supervision but also as psychological scaffolding.

Subtheme 3.2: Reminder Systems and Structured Adherence Practices

Structured reminder systems were described as critical behavioral tools supporting medication consistency. Participants embedded ART dosing into predictable daily routines. One caregiver stated,

while another explained,

These strategies reflect adaptation within resource-constrained environments, where digital interventions may not be consistently available.

Routine anchoring reduces reliance on memory and cognitive effort. In contexts characterized by caregiver stress and competing responsibilities, reducing cognitive load becomes essential. Reminder-based adherence interventions, including environmental cues and structured timing, significantly improved adolescent ART consistency across sub-Saharan Africa. The World Health Organization recommends integrating medication into established daily activities to enhance habit formation.

The use of direct supervision also emerged as a corrective response to concealment behaviours identified earlier in the study. One caregiver reported,

This practice suggests recognition that outward compliance may mask non-ingestion. While direct observation increases dosing reliability, it must be balanced with trust-building to avoid reinforcing resistance. The effectiveness of supervision, therefore, depends on the quality of the caregiver-child relationship.

Subtheme 3.3: Positive Health Service Support and Clinic Engagement

Health service engagement was frequently described as enabling adherence through education, medication continuity, and structured follow-up. One caregiver stated,

Another participant emphasised respectful care, stating,

These accounts highlight the stabilizing role of predictable delivery service and effective counseling.

Trust in the healthcare system is bolstered by a consistent supply of medication. Uninterrupted medication availability is emphasized as the cornerstone of viral control. Unreliable supply undermines trust and increases disengagement. Participants in this survey did not report stock-outs, indicating that the district’s structural reliability of pharmaceuticals may be quite steady.

Community-linked delivery mechanisms were also described:

This reflects elements of differentiated service delivery (DSD), which has been shown to reduce travel burden and improve retention in rural South Africa.²⁴ By decentralizing medication access, DSD reduces structural friction points such as transport costs and time loss.

However, relational quality within clinic encounters emerged as a complex factor. One caregiver stated,

Care continuity was maintained, but there was clear emotional distress. Discovered that even in situations where services are technically available, poor communication can reduce patient engagement. Emotional disengagement results from perceived disrespect in clinical settings.

Subtheme 3.4 Knowledge, Acceptance of HIV Status, and Personal Motivation

Acceptance of HIV status emerged as a profound turning point in adherence trajectories, particularly among adolescents. One participant described a period of denial:

This statement reveals internalized stigma manifesting as performative adherence. The adolescent engaged in visible compliance without actual ingestion, illustrating that outward behaviour may conceal psychological resistance.

Following acceptance, the participant stated,

This change emphasizes how important psychological adaptation is to manage chronic illness. Adolescents in the Eastern Cape who made the shift from denial to acceptance demonstrated better viral suppression, according to similar findings.

Self-motivation also emerged strongly:

This indicates increased internal regulation and self-efficacy. Self-efficacy is one of the most important indicators of teenage ART adherence. As teenagers mature, adherence becomes less externally imposed and more internally regulated.

4.1 Strengths

A key strength of this study lies in its phenomenological design, which enabled the exploration of lived experiences of both caregivers and adolescents, thereby capturing multi-layered perspectives on ART adherence. The inclusion of diverse participants across developmental stages enriched the analysis, highlighting differences between younger adolescents reliant on caregiver supervision and older adolescents negotiating autonomy and disclosure dilemmas. Rigorous methodological procedures, including purposive sampling, bilingual transcription and translation, systematic Nvivo coding, and audit trails, enhanced credibility, dependability, and confirmability. Situating adherence within an ecological framework, the study provides a nuanced understanding of how household, psychosocial, structural, and health system factors interact to shape adherence behaviors, strengthening the transferability of findings to similar resource-constrained contexts.

4.2 Limitations

Despite these strengths, several limitations must be acknowledged. The study was conducted in two health facilities within a single rural sub-district, which may limit the generalisability of the findings to other regions or urban settings. Reliance on self-reported data introduces the possibility of recall bias and social desirability bias, particularly in sensitive areas such as stigma and concealment behaviors. Achieving a sample size was appropriate for achieving thematic saturation, but it may not fully capture the diversity of experiences across the broader Eastern Cape province. Furthermore, the findings are context-specific, reflecting the realities of rural South Africa, and may not be directly applicable to different cultural or structural environments.

4.3 Recommendations

To strengthen pediatric ART programs, interventions should focus on supporting caregivers to reduce forgetfulness and fragmented supervision, while also investing in child-friendly ART formulations to address palatability and side-effect concerns. Expanding community-based service delivery models can ease travel burdens, and anti-stigma initiatives in schools and communities are needed to reduce secrecy and emotional distress. Finally, promoting adolescent self-efficacy and acceptance of HIV status through peer support and counseling, alongside training health workers in respectful communication, will help sustain adherence and improve treatment outcomes.