To describe the impact of maternal non-adherence to antiretroviral therapy on mother-to-child transmission of HIV in the Capricorn District within Limpopo Province, with particular attention to how suboptimal adherence during pregnancy and breastfeeding contributes to increased risk of HIV transmission to infants and undermines PMTCT outcomes.

This study employed a qualitative research approach grounded in an interpretative phenomenological design to explore maternal non-adherence to ART and its impact on MTCT of HIV. The design allowed for an in-depth exploration of the lived experiences of HIV-positive pregnant and breastfeeding mothers who were not adhering to ART, alongside the perspectives of nursing professionals responsible for PMTCT service delivery. Interpretative phenomenological analysis was considered appropriate as it facilitates an understanding of how individuals interpret their experiences within specific social, cultural, and healthcare contexts ( Creswell & Creswell, 2018).

The study was conducted in selected primary healthcare clinics within the Capricorn District of Limpopo Province, South Africa. These clinics offer ART and PMTCT services and serve predominantly rural and semi-rural populations. The selection of this setting was informed by Department of Health records indicating a high prevalence of maternal ART non-adherence, making it a relevant context for examining both individual- and health system-level influences on adherence.

The study population consisted of HIV-positive pregnant and breastfeeding mothers who were non-adherent to ART, and nursing professionals involved in ART and PMTCT service provision at selected primary healthcare clinics in the Capricorn District. The target population included non-adherent mothers who were pregnant or breastfeeding children under one year of age, and nursing professionals working in clinics with high rates of maternal non-adherence, while the accessible population comprised those receiving or providing ART services within the Capricorn District ( Hossan et al., 2023; Willie, 2024).

Purposive sampling, a non-probability method, was used to select clinics and participants based on their relevance to the study objectives ( Casteel & Bridier, 2021). Clinics were identified using Department of Health records, and participants were recruited based on direct experience with maternal ART non-adherence and MTCT-related care.

Inclusion and exclusion criteria were established to guide participants selection and to ensure that only individuals with relevant experience of maternal ART non-adherence and PMTCT service provision were included in the study.

Mothers included in the study were HIV-positive, pregnant or within one year post-partum, inconsistently non-adherent to ART, aged 18 years or older, on ART for at least six months, and accessing ART services in the Capricorn District. Nursing professionals included were those employed by the Department of Health in the Capricorn District, actively involved in ART and PMTCT services at clinics with high rates of maternal non-adherence, and with at least 2 years’ work experience. All participants were required to provide informed consent.

Mothers who were fully adherent to ART, not pregnant or breastfeeding, recently initiated on ART, or unable to provide informed consent were excluded. Nursing professionals who were on leave or temporarily placed in clinics and not officially assigned to the Capricorn District were also excluded.

Data were collected through unstructured, in-depth individual interviews to allow HIV-positive mothers and nursing professionals to freely narrate their experiences of maternal ART non-adherence and its perceived impact on MTCT. This method was appropriate for exploring sensitive topics such as HIV, adherence, and maternal health, while remaining consistent with the interpretative phenomenological approach that prioritises participants’ meaning-making ( Creswell & Poth, 2018; Pope & Mays, 2020). Separate interview guides were developed for mothers and nursing professionals, with the mothers’ guide translated into Sepedi to accommodate participants’ language preferences. Demographic information, including years on ART for mothers and years of professional experience for nurses, was collected to contextualise the findings. Interviews were conducted face-to-face in private clinic settings during routine visits, audio-recorded with consent, lasted approximately 45–60 minutes, and were transcribed verbatim for analysis.

Data analysis was guided by interpretative phenomenological analysis (IPA). Audio-recorded interviews were transcribed verbatim and analysed through a systematic, iterative process involving repeated reading of transcripts, initial noting, coding, and the development of emergent themes ( Pope & Mays, 2020). Patterns across cases were examined to identify convergences and divergences between maternal and nursing perspectives. This approach enabled a comprehensive understanding of how maternal non-adherence to ART contributes to MTCT and shapes clinical and public health outcomes within the Capricorn District. Figure 1 illustrates the step-by-step IPA process applied in this study.

Ethical approval was obtained from the University of Venda Ethics Committee (ethics number: FHS/25/PH/13/3107), and permission to conduct the study was granted by both the Limpopo Provincial and District Departments of Health. Participation was voluntary, and written informed consent was obtained after participants were provided with detailed information about the study’s purpose, procedures, risks, benefits, confidentiality measures, and their right to withdraw at any time ( Badampudi et al., 2022). Interviews were conducted in private settings, and participants’ identities were protected using pseudonyms and secure data storage, with voice-altering effects applied to recordings. Precautionary measures were in place to minimise physical, economic, and psychological harm, including interview breaks, conducting interviews during routine clinic visits, and a with a registered counsellor on standby to provide counselling when needed.

Trustworthiness was ensured using the criteria of credibility, dependability, confirmability, and transferability ( Creswell & Poth, 2018). Credibility was enhanced through in-depth interviews with both HIV-positive mothers and nursing professionals, allowing for triangulation across participant groups, as well as member checking to confirm the accuracy of participants’ accounts. Dependability and confirmability were supported through a systematic and transparent research process, including the use of an audit trail and reflexive practices to ensure findings were grounded in participants’ narratives ( Polit & Beck, 2021). Transferability was addressed through rich contextual description, enabling readers to assess the applicability of the findings to similar settings.

The analysis of participants’ accounts in this study revealed three superordinate themes, each with multiple subthemes. These themes reflect the reported impacts of maternal non-adherence on mothers, children, families, healthcare providers, and the health system within the Capricorn District context. Table 2 presents the superordinate themes and corresponding subthemes that emerged directly from the participants’ responses, as captured through Interpretative Phenomenological Analysis.

The participants perceived that non-adherence to ART had detrimental, far-reaching effects on their physical health, specifically through elevated viral loads, as well as on the safety of their children and the overall stability of their homes. They expressed a deep understanding that the consequences of inconsistent treatment extend beyond the individual, creating a cycle of illness and emotional distress within the family unit. This theme reflects the reported consequences of maternal non-adherence on maternal health, child well-being, and family functioning, as described by both HIV-positive mothers and healthcare providers. •

Compromised maternal health and psychosocial well-being

Maternal non-adherence was reported to negatively affect mothers’ health. Participants indicated that inconsistent ART use led to declining viral suppression, weakened immune function, and increased susceptibility to illness. Mothers described treatment fatigue, fear of stigma, and reduced motivation, which contributed to inconsistent medication use. Healthcare providers, including nurses and mentor mothers, similarly observed that these patterns resulted in frequent clinic visits, repeated ART re-initiation, and increased maternal morbidity, illustrating the direct health consequences of non-adherence. Participants described how allowing the “virus to stay high” led to severe illness. One mother recounted a significant physical decline that resulted in hospitalisation:

Another mother explained the functional impact of poor adherence: “When I don’t adhere properly, my viral load can increase, which puts my health at risk. I can become sick, weak, and unable to work or care for my children.” (Participant K, 32 years, mother).

The perceived severity of non-adherence was further emphasised by Participant B (30 years, mother), who stated: “For the mother, the virus can stay high, and you can get sick, or even die.”

Healthcare providers reinforced these observations from a clinical perspective. Participant S (33 years, Nurse) noted: “Non-adherence can cause resistance, virological failure, compromised immunity, and opportunistic infections in mothers.”

Similarly, Participant U (35 years, Mentor mother) added: “Mothers who do not adhere often become sick, and some end up being admitted to the hospital.” •

Deterioration of child health, development, and increased risk of MTCT

Maternal non-adherence was linked to adverse child outcomes. Participants described how inconsistent ART use increased children’s vulnerability to poor health and developmental challenges. Mothers reported concerns about delayed growth, feeding difficulties, and the possibility of transmitting HIV to their infants. Healthcare providers similarly observed higher rates of MTCT, delayed infant testing, missed immunisations, and early developmental delays, illustrating the direct consequences of non-adherence on child health and development. Mothers expressed awareness of these risks. Participant O (29 years, mother) stated: “I realised that missing treatment does not only affect me, but also my baby.”

The potential severity of outcomes was further emphasised by Participant C (34 years, mother), who noted: “For the child, it can lead to infection, or even death. It is very painful because children did not choose this, yet they can suffer the consequences.”

Healthcare providers reinforced these concerns from a clinical perspective. Participant Q (51 years, nurse) explained: “For children, the consequences are even more painful. It can lead to PCR-positive results, failure to thrive, premature birth, or even death. These are outcomes that could have been prevented with good adherence.”

Similarly, Participant V (41 years, mentor mother) observed: “Babies can test HIV-positive, fail to thrive, or become sick very early in life. Some children do not survive.” •

Disrupted family functioning and relationships

Beyond physical health consequences, participants described how maternal non-adherence disrupted family functioning and relationships. Mothers explained that the stress of managing a high viral load, combined with the physical effects of illness, reduced their ability to fulfil household and caregiving roles. Hospitalisation or severe illness was perceived as particularly destabilising for the home environment. Participant H (35 years, mother) reflected on the personal impact of these challenges: “I feel like my struggles with treatment and stress affected my child.”

Healthcare providers corroborated these observations, noting that non-adherence and non-disclosure often strained families. Participant R (48 years, nurse) explained how concealment added emotional and relational pressure: “When a mother does not disclose, she carries everything alone. She has to hide her medication, hide clinic visits, and sometimes even lie about where she is going.”

Similarly, Participant Q (51 years, nurse) emphasised the link between household dynamics and clinical outcomes: “Many of the problems we see in the clinic are rooted in what happens outside the clinic.”

This theme captures the reported impacts of maternal non-adherence on healthcare providers, including emotional, ethical, and professional challenges encountered while managing non-adherent mothers and preventing MTCT. •

Moral distress and ethical dilemmas

Participants consistently reported experiencing ethical dilemmas when maternal non-adherence to ART placed children at risk. They described a tension between their professional duty to protect the child and the obligation to respect the mother’s autonomy and confidentiality. For instance, Participant R (48 years, nurse) explained: “Ethically, it is difficult because you want to protect the child, but you must also respect the mother’s right to confidentiality and choice.”

This sentiment was echoed by Participant Q (51 years, nurse), who reflected on the emotional strain of being unable to compel disclosure: “I felt stuck because I could not force her to disclose, but I knew the baby’s health was at risk.”

Participant T (35 years, nurse ) further elaborated on the moral distress that arises in these situations: “Ethically, it is very difficult … you feel stuck. You want to protect the child, but you cannot force disclosure or disclose on the mother’s behalf unless there is a legal directive. That creates moral distress for us as nurses.”

Even mentor mothers, who provide peer support to mothers living with HIV, expressed similar challenges. Participant V (41 years, mentor mother) described the emotional burden of being unable to act directly: “It is stressful and frustrating. You feel responsible, yet you cannot force the mother to act.” •

Professional frustration

Participants further described how repeated cases of maternal defaulting generated frustration, emotional strain, and a sense of professional powerlessness. Participants indicated that their emotional responses extended beyond routine clinical concern, as they felt accountable for both maternal and child outcomes. Participant R (48 years, nurse) explained: “When a mother is not adhering, it affects you emotionally because you are not just thinking about her as a patient, but also about her child and family.”

This emotional burden was intensified by patterns of recurring non-adherence, which participants perceived as undermining their efforts. Participant T (35 years, nurse) expressed this frustration: “It is frustrating and emotionally draining. We invest a lot of effort, but the behavior repeats. Some mothers only come for child immunization and claim they are taking ART, but viral load results show otherwise.” •

Compassion fatigue and burnout

Participants highlighted that sustained exposure to maternal non-adherence, coupled with high workloads and limited systemic support, contributed to emotional exhaustion and burnout. They reported that these challenges negatively affected their engagement and availability when supporting mothers and children in care. Participant Q (51 years, nurse) reflected:

Similarly, Participant T (35 years, nurse) described the personal impact of repeated non-adherence: “We form relationships with these mothers, and when they keep defaulting or disappearing, it affects you personally. You carry that emotional burden, especially when children are involved.”

Participant U (35 years, mentor mother) echoed this sense of helplessness, emphasizing the emotional toll of witnessing children suffer: “Sometimes I feel helpless when mothers continue to default despite all the counselling and support. Seeing children suffer because of non-adherence is very painful.”

This theme focuses on systemic consequences rather than individual experiences. •

Increased health system burden and resource strain

Participants perceived maternal non-adherence as increasing clinic congestion, leading to repeated treatment re-initiation, preventable hospitalisations, and an inefficient use of limited resources, ultimately undermining PMTCT programme outcomes.

Participant R (48 years, nurse) reflected on the difficulties of tracing and following up patients, stating: “We are expected to trace patients, conduct home visits, and provide counselling, but sometimes we do not have transport, airtime, or enough staff. You may know exactly where a patient lives, but you cannot reach her in time, and that is very frustrating.”

In a similar vein, Participant S (33 years, nurse) emphasised how general nursing duties constrained the time available for adherence support: “I am doing general nursing … it is difficult to give these mothers the time they need.”

Participant T (35 years, nurse) further described the demands of managing multiple services concurrently, noting: “We manage ART, antenatal care, postnatal care, immunisation, and chronic conditions, often with limited staff. That makes it difficult to give enough time to mothers who need in-depth counselling.”

Participant Q (51 years, nurse) underscored the need for additional resources to address these challenges: “These strategies require manpower and resources. We need more staff and equipment so that we can follow up properly.”

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Based on the study findings, incorporating brief screening for stigma, emotional distress, disclosure challenges, and treatment fatigue into routine antenatal and postnatal care may support early identification of barriers to ART adherence.

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Community-based research is recommended to gain deeper insight into the barriers faced by women not engaged in ART and PMTCT services.

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The study was conducted in selected clinics within the Capricorn District, Limpopo Province, including rural, peri-urban, and urban settings. While this allowed for contextual variation within the district, the findings reflect experiences specific to this geographic and health system context and may not be directly transferable to other provinces or settings with different socio-economic and health service conditions.