All studies that reported on challenges experienced by children and adolescents living with HIV, caregivers and prescribers in HIV management from the age of prematurity to 15 years in public healthcare settings globally were included. In South Africa, the vast majority of children and adolescents living with HIV receive their antiretroviral therapy (ART) through the public healthcare sector. This sector operates the world’s largest public ART programme, providing essential treatment to most of the young people affected by HIV. Although a small minority may access private healthcare, the public system remains the primary source of ART for this population, and it is free. Therefore, the variation of responses from children and their caregivers in the public sector is believed to be representative of the challenges that may be experienced in the private sector. In addition, since the research was going to be conducted in the public sector, it was decided to look at public sector original articles so comparisons can be valid. Only original research studies that were published from January 2015 to December 2024 were included.

Reports from private healthcare settings were excluded. Surveys and opinion pieces which were not based on primary research were also excluded, as were studies published in languages other than English. Surveys were excluded because of the lack of clear data collection methods that do not allow for the generalisation of the results.

A data charting list was created and utilised to collect relevant information. Details such as publication year, study design, country of origin, team composition and outcomes were gathered. Data were recorded at each stage, and the three authors conferred to review the findings. Any issues that arose were addressed by consensus, ensuring the reliability, validity and reproducibility of the results.

Figure 1 illustrates the process undertaken to select the relevant literature for the study.

The risk of bias was assessed by checking how the data were collected. This included non-response bias, recall bias, proxy response bias, language bias, fatigue bias and timing bias, making the study more transparent and reproducible. For recall bias, the articles were checked for the response rates from participants, and reasons for non-participation were also checked and observed if recorded. For recall bias, all retrospective studies were checked for self-reported information and how the studies attempted to minimise the bias. For proxy response bias, where the caregivers responded on behalf of children, the studies were checked if this was acknowledged as a limitation. For language bias, the studies were checked if the data collection instruments or interviews were conducted in the participants’ preferred language. Information on the language(s) used, translation processes and possible inclusion or exclusion of non-native speakers. Observation was done to check if the studies captured this as a limitation if no translation was done, and if non-native speakers were excluded. For fatigue bias, the studies were assessed on the length and possible complexity of interviews and/or surveys and whether the study mentions breaks or measures to mitigate fatigue. For timing bias, details about the timing of data collection and whether the authors discuss its potential impact were checked from the studies included.

The validity and reliability of the data are essential since this review has used the studies to develop the conclusions. Assessing the strengths and weaknesses of included studies is essential. Therefore, reporting how each potential bias was assessed and its potential impact on findings increases transparency. This, in turn, allows other researchers to reproduce the assessment and understand the trustworthiness of the evidence.

Ethics approval was not required for this study as the data are freely available in the public domain. This article followed all ethical standards for research without direct contact with human or animal participants, and all studies included had acquired ethical clearance.

In the last 4 years (2020 to 2024), studies on adherence monitoring in children have been conducted in North America, South America, Asia and Africa.

Various methods available to measure and monitor adherence to HIV treatment included viral load testing, pharmacy pill counts and monitoring the frequency of missed appointments to collect medication. Guidelines indicated the type of methods that could be used as well as the frequency at which they can be monitored. However, viral load testing and monitoring were shown not to be effectively done at the required intervals in low- to middle-income countries (LMICs).^16,17,18

Studies carried out in the last 8 years in Africa and South America showed the significant role played by caregivers in ensuring that young children adhere to treatment, thereby improving immunity and viral suppression to HIV, thus improving overall treatment outcomes. Treatment of young children (usually younger than 12 years) depends on a caregiver (parents or other family members or anyone else). Treatment success, therefore, relies on the caregiver, who needs to be highly involved, motivated and concerned with adherence issues.

In a 2017 study by Dahourou & Leroy in West Africa, it was evident that a number of caregiver factors influence the level of adherence to treatment.³⁶

Being the caregiver of a child on ART comes with different types of neurological effects, such as anxiety.

Caregivers’ fear of disclosing the status of the children to them, because of uncertainty of how the disclosure will be handled by the child, is because of their fear of poor adherence to treatment and negative psychological effects on the children.³⁷ In a study conducted in Ghana, the fear of caregivers was also associated with whether the children had the required maturity to understand and accept their HIV status and also have the ability to be discreet about their HIV status outside their households, such as in public and social spaces, at school and with friends. This fear is associated with the possible stigmatisation and discrimination that could be attached to it.³⁷ The same results were observed from a study in Ghana in recent years.³⁷

The non-disclosure of HIV status to the child by the caregiver negatively affects adherence to treatment.²⁷ Caregivers may, therefore, also be confronted with the child’s refusal to take the treatment, as a result of not understanding the importance of taking treatment, owing to non-disclosure, resulting in a number of frequently missed doses, significantly affecting adherence.³⁷ A study conducted recently in 2023 in Colombia on children under 13 years of age, revealed that the majority of the children were unaware of their diagnosis (86%), which contributed to non-compliance, because of their not understanding the importance of taking medication daily.³⁸

In a study conducted in Africa in 2021 by Klutsey et al., adherence was seen to be poor because of non-disclosure. This results from the fear of the child’s reaction anticipated by the caregiver, causing the caregiver to not disclose the status to the child.³⁷

The caregiver’s own busy schedule, including issues with their own positive HIV status and general health, may result in disengagement, treatment oversight and forgetfulness to give the medication to the child.^36,37 The caregiver’s concern over their own HIV status and acceptance thereof may result in anxiety and depression. This often leads to alcohol and substance abuse by the caregiver, affecting their ability to take care of the child.³⁷

In a study conducted in Zimbabwe, inadequate caregiver psychological preparedness to support children’s adherence has also been shown to negatively affect adherence.²⁵ This resulted in the caregiver not fully understanding the importance of administering the medication to the children and forgetting to administer medication to younger children who do not yet have the mental ability to remind themselves to take medication.²⁵

A study done in Burkina Faso (in West Africa) revealed that children with several caregivers did not adhere to treatment, as well as those with a single caregiver.³⁶ Children whose mothers were the primary caregivers showed better treatment responses compared to those cared for by others.³⁶ This effect was even more pronounced when the mother was also receiving ART. These findings may reflect the strong emotional bond between mother and child, or possibly the mother’s feeling of guilt about her child’s infection.³⁶ This feeling would thus protect the child from poor adherence.³⁶

The fear of being stigmatised by members of the family or the community is believed to be associated with poor adherence²⁹ leading to non-disclosure of HIV status to other family members.²⁹ The non-disclosure often leads to the parent and/or caregiver feeling and receiving inadequate support from other family and/or household members as a result of their HIV status not being known to them.³⁹ Fear of stigmatisation is still frequently observed in Africa, and some mothers take care of their child’s treatment without the father knowing, or they do not want their child to be treated out of fear of letting the father know about the child’s HIV status, and thus the father’s infection status.²⁹

The caregiver’s non-disclosure of HIV status to children who are age-eligible for disclosure, and little engagement of caregivers in the children’s care, was also observed to negatively affect adherence. Some caregivers had little or no interest in being engaged in their children’s health care and therefore, neither brought the child to their appointment nor ensured if the child took their medication.²⁹

The continuity of child care may also be compromised because of frequent switching of caregivers for children in orphanages and care centres, with the new caregiver being unaware of the child’s HIV status.²⁹ The caregiver may also not be able to find time to collect treatment for the child timeously because of his/her work issues.³⁶

A significant relationship exists between the psychological and social factors and patient adherence to ART. To date, the fear of stigmatisation of people living with HIV negatively affects adherence to treatment.²⁵ In SSA, the perpetuation of stigma because of cultural beliefs and misinformation about HIV infection itself remains a great challenge.²⁵

The transition from childhood to adolescence is a critical stage in HIV management, marked by significant physical, mental and emotional changes. Children should be informed of their HIV status before this stage so that they can take responsibility for their own health.³⁶ Human immunodeficiency virus status awareness leads to better adherence³⁸ However, if the information is not transmitted adequately to the adolescent, it might lead to poor adherence because of the resulting anxiety and depression.⁴⁰ This phenomenon is more prevalent in adolescents than in younger children.³⁹ It is then difficult to determine whether the observed poor adherence is because of their being adolescents or to challenges with ART.

A Namibian study conducted in 2024 showed that virological suppression in adolescents up to the age of 15 years was lagging behind compared to younger children and adults.¹⁸ This was attributed to adolescent-associated factors such as their sensitivity to peer pressure, causing adolescents to involve themselves in undesirable social activities (alcohol and substance abuse),⁴¹ thus negatively affecting adherence.

Depressed adolescents tend to miss doses more frequently because of forgetfulness and the frequent need to take medication in private spaces without being seen,⁴⁰ which is closely associated with the fear of discrimination and stigmatisation, leading to non-adherence.⁴⁰ The severity of the depression experienced by adolescents ultimately leads to alcohol and substance abuse.¹⁸

When adolescents take their own treatment, they may forget doses⁴⁰ because of changes in their daily routine. Lack of desire to take one’s own treatment, and long-term treatment-induced exhaustion are also determining factors of poor adherence at the adolescent age.³⁶

Two studies cited socio-economic factors as barriers to adherence. A poor socio-economic status (assessed by the absence of television (TV), electricity, food, a fridge at home and by the inability to pay transportation fees to come for medical visits) was described as a determinant of poor adherence,^25,38 while improvement in socio-economic status was reported to favour virological success.²⁵

The economic status of caregivers plays an important role in adherence. Many studies reported that factors, such as the long distance from home to the health facility, the availability and mode of transport to the health facility, including poor weather patterns, contribute to caregivers not collecting medication from the health facility.^17,40

A study conducted in South America also showed that the low socio-economic status of caregivers increased non-adherence to treatment. The majority of caregivers (90.5%) earning less than the minimum wage were seen to have poor adherence.³⁸

A South African study reported that the caregiver’s high level of education was associated with better adherence.³⁸ The level of understanding of the disease itself, however, impacts the transmission and treatment, leading to poor health-seeking behaviours and low adherence to treatment by the caregiver.³⁸

This study presents some limitations. Only papers published in English were considered for this narrative review. The restriction to only English language studies could have excluded some relevant studies. There may have been papers published in other official languages that reported on challenges with ARV drug management of children that could have been excluded. The study also excluded papers conducted in the private sector. There may have been challenges identified in the private sector that have not yet been experienced in the public sector, which could have limited our results.

This being a narrative review, the study lacked the rigour and structured methodology, offering a broad synthesis which could be more subjective and making the study prone to bias. However, the evaluation of the quality and/or risk-of-bias was done by checking how the data were collected. This included non-response bias, recall bias, proxy response bias, language bias, fatigue bias and timing bias. It is, however, unlikely that these limitations affected the interpretation or conclusions of this study.

Although the selection of published studies guards against the selection of studies that may not have undergone intensive review processes, where the reproducibility of the data can be guaranteed, it also limits data that could have been included, which may not yet be published.

The focus on public sector care may limit the perspectives of participants in the private sector, which may be different.

Human immunodeficiency virus affects many people in many countries. The pharmaceutical response to save lives has been successful concerning adults, but more needs to be done to address the HIV treatment of children by pharmaceutical manufacturers, governments, through financing adequate treatment for children and adolescents living with HIV, by improving the Health Systems and efficient access to ART, and addressing the social services and support required by caregivers.

Communities, including churches and other religious organisations and schools, should be active concerning the stigma associated with HIV infection. Non-profit organisations working in communities are needed to assist caregivers supporting children and adolescents living with HIV to achieve adherence through support groups.

It is imperative that all challenges identified be addressed and new interventions be developed and implemented. Interventions, including further research concerning these challenges, in different local settings, are required.