A Qualitative Inquiry into the Realities of Caregivers Caring for Children Living with HIV in South Africa

Abstract

With the introduction of antiretroviral treatment, HIV has become more of a chronic disease, resulting in people living with HIV living longer. This progress has also been realised among children and adolescents living with HIV, whose primary caregivers have always been instrumental in supporting and caring for them. Despite the general progress in the fight against HIV and the crucial role of caregivers in supporting children living with HIV, the reality is that the struggle is not yet over. The existing literature demonstrates that there are some untold sufferings not only of those children who are living with HIV but also their families and primary caregivers. Drawing from the biopsychosocial theoretical framework, this exploratory qualitative study sought to explore the experiences, challenges and coping strategies of caregivers of children living with HIV/AIDS in South Africa. A total of eight participants were recruited from Pretoria and Cape Town through purposive sampling. Semi-structured interviews were conducted and analysed through Braun and Clarke’s thematic model of qualitative data analysis. The findings revealed various experiences, including reluctance to disclose the child’s HIV-positive status, financial challenges, experiences involving support systems and the coping strategies for managing challenges. The study demonstrated the complexity of HIV as a condition involving the interaction of biological, psychological and social dynamics.

1. Introduction

Children living with HIV remain the most vulnerable group in society due to several factors, such as poverty, disintegrated families, abuse, pandemics, and their related impact. Their vulnerability is compounded by their dependence on adults as well as their need for specialised care and protection. Their potential exposure to other ailments and pandemics also requires extra care and protection. Global figure predictions indicate that a total of 75,000 children have died from AIDS-related causes, with 84% of these deaths reported to have occurred in sub-Saharan Africa (UNAIDS 2025a). By the year 2030, 1.7 million children and adolescents will be living with HIV, with 270,000 new infections predicted among this cohort. Beyond these figures are the realities of living with HIV, which include facing stigmatisation and discrimination, being in and out of healthcare facilities due to ill-health, taking treatment with limited or no nutritious food, taking treatment for a condition which they do not understand and many other challenges. The vulnerability of these children contributes to both the physical and mental challenges faced by their primary caregivers, who are usually women (Atanuriba et al. 2021; Gunda et al. 2025; Joyce et al. 2022; Zibengwa et al. 2025). Physically, these caregivers have to care for children with various symptoms, sometimes under difficult financial conditions, food insecurity, and limited knowledge on how to do it (Gunda et al. 2026). They sometimes have to frequently rush these children to healthcare facilities for urgent medical attention, with limited or no resources, such as money for public transport. On a mental front, they can be confronted by fear of disclosure, depression and suicidal thoughts as a result of stigma and discrimination (Atanuriba et al. 2021; Joyce et al. 2022).

Like in many other countries, in South Africa, it is women and children who continue to be on the receiving end of HIV-related challenges. During the period 2024, for instance, an estimated 7.8 million South Africans were living with HIV, of whom approximately 150,000 were children (UNAIDS 2025b). Like in many African countries, it is women who mostly assume the role of a caregiver when any of the family members are sick (Gunda and Sibanda 2025). Therefore, the challenges that are confronting children who live with HIV also affect their caregivers. The socioeconomic conditions in which these children find themselves are dire and contribute to the impact of HIV both on them and their caregivers (Gunda et al. 2025).

Caregivers of children living with HIV and AIDS in South Africa face a plethora of challenges that undermine their ability to fully care for and protect children in their care (Osafo et al. 2017). At times, these challenges create a significant burden on the entire family structure and system and therefore exert an impact on the management of the household and the care and support of the child in question. These challenges evolve around a lack of or inadequate finances, a lack of HIV-related knowledge, stigma and discrimination, poor access to healthcare, and a need to sustain the family while receiving little or no support from others, friends, family or community members (Maubane 2022). Being professionals who are mandated to protect the interests of the poor and marginalised population groups in society, social workers can play a crucial role in curbing some of these challenges. To do so, social workers develop intervention programmes that are either aimed at supporting the children and their caregivers or targeting members of the community in an effort to prevent things like stigmatisation of people living with HIV or to demystify any misconceptions that are out there and hampering their support initiatives (Gunda et al. 2025; Zibengwa et al. 2025).

For social workers to develop programmes that are effective, they must do so based on a full understanding of the issue at hand. In other words, for them to develop effective programmes that can assist children living with HIV and their caregivers, they must do so based on a full understanding of the issues they face. Therefore, this study sought to enhance our knowledge and understanding of the experiences and challenges of caregivers caring for children living with HIV in South Africa, based on empirically generated evidence. The researchers hope that through these findings, this study will make a necessary contribution by enabling social work and other related practitioners working with children living with HIV and their caregivers to draw lessons to guide their interventions for the purpose of supporting these client systems.

1.1. Understanding Caregiving

The term caregiver is defined by UNAIDS (2024) as people who render unpaid care for a member of their family, a friend or partner who is ill (including a child who is living with HIV), frail or living with a disability. Historically, caregiving is traced from early civilisations, such as ancient Egypt, where family members, who were mostly women, were dedicated to the protection of and maintenance of their families (Cejalvo et al. 2021). During the 1970s, sociologists agitated for more focus to be directed to the value of caring for the most vulnerable people, a move that put a spotlight on caregiving. Caregiving is a complex social relationship embedded in personal histories and located within specific conditions (Hu et al. 2023; Lekganyane and Alpaslan 2019). What complicates caregiving is the level of diversity and its dynamic evolution (Gunda et al. 2025). Although it is women who mostly provide caregiving, it generally involves partners and friends, mothers and fathers, daughters and sons, and relatives and strangers, as well as the old and the young. In most instances, caregiving is unpaid, involves little or no formal training, and is based on an existing relationship (i.e., a mother providing care to her son who is living with HIV) (Hu et al. 2023). In countries that are characterised as the most unequal societies, such as South Africa, caregiving seems to have a racial, educational and geographical layer. It is mostly African women from underprivileged backgrounds, often relying on state social security for survival, who are likely to take the job of a caregiver (Tladi and Sibanda 2026).

1.2. A Legal and Policy Perspective on Caring for Children Living with HIV

Rendering care to children living with HIV is a legislatively regulated and policy-directed activity, both from an international and local context. The Universal Declaration of Human Rights, for instance, provides in Article 25(1), for everyone (including children), the right to an adequate standard of living for their health and well-being and that of their families. These standards of living include food, clothing, housing, mental care and the relevant social services, as well as the right to security during events such as sickness, disability, or other lack of livelihood circumstances beyond their control (Masuka et al. 2026; Sibanda 2025a). In paragraph (2), Article 25 provides for the entitlement of motherhood and childhood to special care and assistance and for all children, whether born out of or in wedlock, to the enjoyment of the same social protection.

The Convention on the Rights of the Child provides for children’s rights, including the right to seek, receive and impart information on HIV, as well as the right to special protection and assistance if deprived of their family environment, such as in cases where they are orphaned by HIV (Sibanda 2025b). The Convention imposes a duty on states to ensure that no child is deprived of his or her right of access to such health care services (United Nations 1990). In Article 12, the International Covenant on Economic, Social and Cultural Rights provides for the right of everyone (including children) to enjoy the highest standard of physical and mental health. This provision obliges states to take steps to prevent, treat and control epidemic diseases (United Nations 1996). The provision of care to children living with HIV is also an essential consideration by the Sustainable Goals, with Goal 3 striving to ensure healthy lives and promotion of well-being for all ages (UNAIDS n.d.). Therefore, the primary caregiver’s involvement in caring for children living with HIV seeks to fulfil the provisions of Article 25, both in paragraphs 1 and 2.

At the local level, South Africa has what is often considered to be the best constitution in the world, which, through its Bill of Rights, provides in Section 27(1) for the rights of everyone (including children) to healthcare services, including reproductive health and for the state to take reasonable legislative and other measures to realise these rights (Republic of South Africa 1996). Section 28(1) provides for various rights dedicated to children, including the right to family or parental care and to appropriate alternative care when removed from the family environment, basic nutrition, shelter, basic health care and social services (Sibanda 2026). Paragraph (2) of this section emphasises the paramount importance of the best interests of children in all matters concerning them.

In giving effect to the constitution, the Children’s Act 38 of 2005 provides various protective measures related to children’s health, including consenting to medical treatment and surgical operation, HIV testing, HIV testing for foster care or adoption purposes, counselling before and after HIV testing, and confidentiality of information on the HIV/AIDS status of children (Republic of South Africa 2005). One of the objectives of the National Health Act, as provided in Section 2(c)(iii) and (iv), is to regulate national health and provide uniformity in respect of health services across the nation by establishing a national system that protects, respects, promotes and fulfils the rights of children to basic nutrition and basic health care services contemplated in Section 28(1)(c) of the Constitution and vulnerable groups, including children (National Health Act 2003). The National Health legislation provides in Section 4(3) that all children, including children of asylum seekers or illegal foreigners, are entitled to basic health care services, as provided in Section 28(1)(c) of the Constitution (National Health Insurance Act 2023).

1.3. Care Giving in the Context of HIV and AIDS

Several authors suggest that caregivers of children living with HIV and AIDS experience gigantic challenges that are mostly psychosocial and socioeconomic in nature (Lekganyane and Alpaslan 2019; Gamarel et al. 2017; Osafo et al. 2017). In their South African study on how social workers could best support caregivers of people living with HIV, for instance, Lekganyane and Alpaslan (2019) found that caregivers needed interventions such as counselling, debriefing and financial support to address their psychosocial and socioeconomic challenges. Another South African study by Gamarel et al. (2017) found an association between stigma and mental health among both caregivers and children, with children being teased and subjected to unfair treatment. In Uganda, Osafo et al. (2017) proposed an urgent need to protect home-based care for children living with HIV based on challenges such as caregivers’ abandonment of income-generating activities due to their commitment to caregiving and challenges such as sleep deprivation, anxiety, depression, stress, feelings of inferiority, hopelessness, restricted access to healthcare, loss of income, stigma, and discrimination. HIV- and AIDS-related stigmas contribute to these children’s mental health issues, which then increase the burden of care on caregivers, who must deal with the tension of secrecy and isolation due to fear of stigma associated with HIV (Gamarel et al. 2017).

On a socioeconomic front, caregivers also tend to experience a lack of or inadequate financial means. The poor financial position in which they find themselves results in a lack of affordability for some of the crucial necessities, including proper nutrition for these children, as well as the ability to address some of their children’s needs (Atanuriba et al. 2022). Due to the distinct challenges associated with their condition, children living with HIV need special care, depending on their physical, emotional, and mental development stages (Mafune et al. 2017). The weight of all these challenges confronting children living with HIV is often carried by their primary caregivers, whose responsibility is to ensure that these children grow up in an environment that enhances their well-being, sometimes without the necessary financial resources (Atanuriba et al. 2022). As argued by Cejalvo et al. (2021), caregivers, particularly those who provide informal caregiving, work in conditions that are ignored by social security systems and society in general due to a lack of services that are effective in strengthening their skills and highlighting their work for recognition. For those caring for children with HIV, the situation is even more dire, given the additional distinct needs of such children. Researchers point to the importance of supporting caregivers of people living with HIV, including children, in effectively managing their challenges to promote good health and well-being (Gunda and Sibanda 2025; Lekganyane and Alpaslan 2019). Developing the necessary support systems for these caregivers should be based on a full comprehension of their experiences and challenges, which is currently lacking in the literature and research. Despite being crucial to informing desperately needed interventions, the realities involved in caring for dependent people, such as children living with HIV for their caregivers, have not been sufficiently investigated by social scientists (Cejalvo et al. 2021; Gunda et al. 2025). Following qualitative research and grounded in the biopsychosocial theory, the overall aim of this study was, therefore, to develop knowledge and understanding of the experiences and challenges of caregivers caring for children living with HIV in South Africa.

1.4. A Biopsychosocial Approach to Caring for a Child Living with HIV

The biopsychosocial model of health was created by George L Engel in 1977, based on Urie Bronfenbrenner, who believed that social factors influence the development of an illness (Bolton 2023; Taukeni 2020). Like Bronfenbrenner, Engel was of the view that illness develops through the interaction of factors, namely, the biological (physical health, genetic vulnerabilities and treatment effects), psychological (coping and social skills, family relationships, self-esteem and mental health) and social factors (peers, family circumstances and relationships) (Taukeni 2020). As argued by Lehman et al. (2017), these three interactive factors associated with the development of illness are actually dynamics (i.e., the biological, psychological and social dynamics), with each capturing a set of forces interacting to exert an influence on health.

Biological dynamics refer to the physical elements, such as the immune and vascular systems of the body, that determine and affect health. For instance, the interaction of the immune system with the circulatory system will determine the child’s health state (Lehman et al. 2017). This, in our context, would involve things like the effectiveness of treatment in the child’s health, as well as the impact thereof on the physical state of the caregiver. The psychological dynamics include systems such as the cognitive and emotional, which in our context may involve the child’s comprehension of their diagnosis, their emotional reactions to it, and how it is understood and reacted to by the caregiver. Motivational, attitudinal and behavioural systems can influence health.

The interpersonal or social dynamics involve what is considered to be the impact of perceived or actual social contacts on health (Lehman et al. 2017). In this context, this involves the nature and quality of the relationship between the caregiver and the child, as well as how the two relate and interact with other family members in view of the HIV-positive diagnosis. These dynamics are critical components in developing a comprehensive insight into the challenges and experiences of primary caregivers of children living with HIV. It is of particular significance to consider the biological, physical and social contexts in which the child’s HIV diagnosis and experiences manifest and the impact thereof on their caregivers. This should include the impact of HIV and interventions such as treatment of the child and how the caregiver experiences such impacts (i.e., their reaction, mental health and coping). Since these caregivers and children living with HIV are members of a family, the caregivers’ experiences and challenges associated with caring for these children should also involve understanding the role and impact of their families and family relationships.

From a biopsychosocial perspective, the three interactive factors or dynamics, namely the biological factors, psychological factors and social factors, interact with each other to influence the health state of a child who is living with HIV. As demonstrated earlier, the impact of these interactive factors, in turn, affects the caregiver’s health.

2. Materials and Methods

The overall aim of this study was to develop knowledge and understanding of the experiences and challenges of caregivers caring for children living with HIV in South Africa. To achieve this goal, we adopted an interpretivist paradigmatic orientation, which is based on the notion of co-creation of subjective knowledge and guided by a qualitative approach, which is characterised by an empathic understanding of the participants using a phenomenological design as a strategy (Isik 2025). Qualitative research was suitable for this study since it focuses on the meanings and experiences that people attach to their social world (Babbie 2016; Isik 2025). In health studies, qualitative research enables a deeper understanding of the experiences, perceptions and meanings that individuals and communities attribute to health and disease (Gárcia-Fernández et al. 2025). Through qualitative research, we were able to get a sense of how caregivers are coping and thriving when caring for children living with HIV. The study was grounded in phenomenological research design because its focus was on the meanings and experiences of the caregivers regarding caring for children living with HIV and AIDS (Creswell and Poth 2018). It therefore sought to understand the caregivers’ firsthand knowledge of the phenomena (Babbie 2016).

The subjective nature of qualitative research and the sensitivity of caring for children living with HIV required semi-structured interviews as a data collection method. Semi-structured interviews allow researchers an opportunity to probe further based on the participants’ responses and, therefore, enable the collection of rich data on their subjective experiences (DeJonckheere and Vaughn 2019; Isik 2025). With permission from participants, the interviews were audio-recorded, transcribed, and later analysed thematically through the five phases proposed by Clarke and Braun (2017).

This study was subjected to the principles of trustworthiness proposed by Guba and Lincoln (1989), namely credibility, confirmability, transferability and dependability. Whereas credibility was satisfied through prolonged engagement, confirmability was enhanced by reflexivity and peer debriefing (Alexander 2019; Babbie 2016). For transferability, we adopted thick description, which involved detailing the study processes and supporting the findings with storylines from the participants, as well as triangulation through diverse sources in the literature and three researchers with different expertise. Dependability involved an audit trail wherein a description of methodology and the procedures followed was provided (Alexander 2019).

The population of this study comprised caregivers of children living with HIV from two of the main cities in South Africa, namely Pretoria and Cape Town. Using purposive sampling as a recruitment strategy, a total of eight caregivers were recruited from these two cities using two non-governmental organisations, namely the Family Centre for Research with Ubuntu and Future Families. Purposive sampling is a form of non-probability sampling commonly used in qualitative and mixed-methods research to facilitate a detailed contextual understanding by intentionally selecting participants based on their relevance to research questions or objectives (Creswell and Poth 2018; Tajik et al. 2024). Fulfilling the purpose of this study required the involvement of caregivers of children who are living with HIV; hence, purposive sampling was found to be a suitable recruitment strategy. The criteria set for inclusion of participants required that they had to be eighteen years or older, caring for a child living with HIV and residing in either Pretoria or Cape Town. Based on these criteria, the recruitment of participants continued until data saturation was reached, with a total of eight participants. The saturation point is a point in qualitative research at which all possible uses of the collected data have been exhausted. It is a critical stage characterised by a cessation of new emerging patterns, codes, and themes, which suggests that the utility of data in addressing the research questions has been maximised (Naeem et al. 2024). For our study’s purposes, this stage was reached with a total of eight participants, which then suggested that it was time to halt data collection and analysis.

Since our study involved human participants and the sensitive personal experiences around caring for children living with HIV, it was essential to appraise ethical principles during its process (Isik 2025). This study was subjected to an institutional ethics review committee. The principles of informed consent, anonymity and confidentiality, avoiding harm, and data security were adhered to. In compliance with informed consent, no participant was allowed to take part in this study without demonstrating a full understanding of the study, as well as voluntarily giving written consent to do so. To maintain anonymity and confidentiality, the researchers refrained from sharing the personal information of the participants and protected their identities by using pseudonyms instead of their real identities. The lines of questioning were characterised by skills such as empathy and listening to ensure that participants were respected and not subjected to any harm. For data preservation, all collected data was stored in password-protected personal computers. Hardcopy data were also transformed into soft copies and stored in the same password-protected computers.

3. Results

The findings of this study are presented in two parts, namely the findings on the demographic data and the findings on the main research questions. The demographic data of the research participants were collected to enhance the context of the study by outlining the characteristics of the participants. The demographical findings were based on eight closed-ended questions that preceded the three main research questions. All eight participants were females; four were from Pretoria, and the other four were from Cape Town. Educationally, one participant had a tertiary qualification, and all seven had no matric (school leaving certificate). Zooming closer into the educational feature, two participants had education up to grade eleven, three had grade seven, one had a diploma, and two never went to school. Of all participants, only one was employed; the rest were unemployed. Maritally, one participant was a widow, two were married, and five were single or never married. Regarding disclosure, five caregivers reported that they have managed to disclose the HIV serostatus to the children who were in their care, while three had not made such disclosures.

Table 1. A summary of the demographic profiles of the participants.

P	Gender	Place	Race	Education	Occupation	Marital	Disclosure	Relationship
1.	Female	Pretoria	Black	Grade 7	Unemployed	Married	No	Mother
2.	Female	Pretoria	Black	Grade 11	Unemployed	Married	Yes	Mother
3.	Female	Pretoria	Black	Grade 7	Unemployed	Single	Yes	Grandmother
4.	Female	Pretoria	Black	Grade 11	Unemployed	Widow	Yes	Mother
5.	Female	Cape Town	Coloured	Grade 7	Unemployed	Single	Yes	Mother
6.	Female	Cape Town	Coloured	None	Unemployed	Married	Yes	Paternal aunt
7.	Female	Cape Town	Coloured	None	Unemployed	Single	Yes	Aunt
8.	Female	Cape Town	Black	Diploma	Employed	Single	Yes	Mother

, below, summarises the participants’ demographic profiles.

The findings involving the main research questions were those that emerged from the interview questions flowing from the study’s purpose. Participants’ answers were analysed in this regard and gave rise to four themes and eight subthemes, as presented below.

3.1. Reluctance to Disclose an HIV-Positive Diagnosis to the Child

One of the themes that emerged from the findings was participants’ reluctance to disclose a positive diagnosis to the child. On further analysis, several reasons were associated with this reluctance, and they were categorised into two subthemes involving the young age of the child, as well as the fear of stigma and discrimination.

3.1.1. Child Being Very Young

As emerged through this subtheme, a sense of reluctance to disclose an HIV-positive diagnosis to the child was due to the young age at which the child was. Participants reported that they could not disclose to the children because they were still too young to understand. Participant Three was among those who echoed these sentiments, suggesting that the child would not even understand what it means to live with HIV. This is how she explained herself:

He is too small to understand what it means to live with HIV.

(Participant Three)

Just like Participant Three above, Participant Five was of the view that the child is still too young to understand the issues of HIV. This is how she briefly shared her perspective:

He is still young, so he knows nothing about HIV.

(Participant Five)

Another participant whose remarks contributed to this subtheme was Participant Seven, who was of the view that it would not be safe to disclose to her child because he would tell everyone. Participant Seven’s statements were extracted from the interview transcripts as follows:

This one will just tell everyone else; you know how kids are. He is still young, so he knows nothing and does not know that you can’t go around telling people that you have HIV, which is why I have not yet told him about his HIV status.

(Participant Seven)

What the participants of our study indicated regarding their reluctance to disclose to their children living with HIV was not a surprise, given what already exists in the literature. Researchers are of the view that disclosing an HIV-positive status to a child requires caution (Arrey et al. 2015; Lorenz et al. 2016). Arrey et al. (2015), for instance, found in their Belgium study among migrant women living with HIV that they preferred to disclose a more socially acceptable condition, such as cancer, to their children to protect them from harassment or stigma and discrimination. In Lorenz et al. (2016), it was found that some caregivers preferred to partially disclose to the child due to fear of their potential reaction. Conversely, Dlamini and Matlakala (2020) support the idea of disclosing this status to the child, but they also acknowledge its complexities. The caregivers who participated in our study reported that they disclosed the children’s HIV-positive statuses during different developmental periods, including the ages of 6 and 10, as well as when the children had grown to begin questioning the treatment that they were receiving. Kennedy et al. (2010), for instance, observed that there are some delays in terms of disclosure of an HIV-positive diagnosis to a child due to fear of further careless disclosure by the child, which might lead to stigma and discrimination.

While researchers have noticed that disclosure is often delayed because parents do not know how to tell their young children about their HIV status (Mphego et al. 2023), some (Sariah et al. 2016) are of the view that the age at which an HIV-positive diagnosis disclosure can be made is between the ages of four and six. In a South African study on barriers and facilitators of disclosure of an HIV-positive status to minors (Mphego et al. (2023)), parents reported that one of the difficulties was the child’s age. They felt that these children needed to grow first to know the details of their diagnosis. Similar findings were reported in other studies (Das et al. 2016; Joyce et al. 2022; Wu et al. 2023). For some caregivers who took part in Lorenz’s study, the reluctance to disclose the status to the child was mainly to protect these children from negative feelings, such as believing that their diagnosis was a death sentence (Lorenz et al. 2016). In Das et al. (2016), for instance, some caregivers preferred their children to learn about their HIV status by themselves when they have reached maturity or marriageable age. From Joyce’s study, caregivers believed that the child was not ready to understand HIV/AIDS, though they did not mention any specific age at which they think the child would be ready (Joyce et al. 2022). The above studies highlight the complexities of disclosure of an HIV-positive diagnosis to children, which, as researchers such as Wariri et al. (2020) suggest, should be accompanied by their emotional and psychological support.

3.1.2. Fear of Stigma and Discrimination

Another reason for caregivers’ reluctance to disclose to the children, as reported by the participants, was that they were afraid of stigma and discrimination. Among the participants who shared sentiments in support of this subtheme were Participants Two, Five, and Six.

Participant Two told researchers how disclosing to a child may be risky in that she/he may tell people who may, in turn, decide to isolate her. This is how her narrative was captured:

Ah, you know these kids never keep quiet. If you tell her, she will tell the whole community, and parents will keep their children away from her.

(Participant Two)

Participant Three aptly captured her experiences regarding stigma in the following statement.

There is still stigma…So we don’t tell them anything. I spend most of the time alone; I do not spend much time with the community. I am normally indoors, so I don’t interact with others a lot. I am afraid that they might judge and blame me, you know how people are.

(Participant Three)

Another participant who reported sentiments in support of this subtheme was Participant Five, who pointed to the lack of knowledge and misconceptions that associate HIV with death. Her sentiments were recorded as follows:

The community does not yet understand what it means to live with HIV. I think most of them view it as a death sentence because back then, people actually died; it was actually bad. The mortality rate was high. Although times have changed, people out there still think that if you have HIV, you will die, so they stop wanting to interact and associate with you, and they will isolate you.

(Participant Five)

Participant Six felt that it would not be a good idea to disclose an HIV-positive diagnosis to a child because there are still people who perpetuate stigma and discrimination. Her remarks were captured, as reflected in the following extract:

There are quite a lot of people outside who, if they hear that you are HIV positive and you get into an argument with them, will throw your status in your face, belittle you, judge you, blame you and victimise you.

(Participant Six)

The participants’ reports, as quoted above, seem to confirm the connection between disclosure of an HIV-positive diagnosis and stigma and discrimination. Stigma and discrimination have a long history in South Africa, dating from as far back as the 1998 brutal murder of Gugu Dlamini, who was simply murdered for disclosing her HIV-positive status (Baleta 1999). In Mphego et al. (2023), fear of stigma was among the psychosocial issues hampering HIV status disclosure, which results in some caregivers thinking that people may not want to associate with them, and the child will suffer the consequences and not be free in her life. The reluctance to disclose an HIV-positive diagnosis due to the risk of exposing a child to stigmatisation also emerged from another South African study by Joyce et al. (2022). In Atanuriba et al. (2022), it was also found that caregivers were unable to disclose the status of children in their care because of the fear of stigma, which in turn resulted in inadequate support from their friends, families and community members. Contrary to what the participants of our study indicated in terms of the fear of stigma and discrimination, caregivers from Dlamini and Matlakala’s study indicated that they have freely disclosed their own HIV-positive diagnoses and those of their children to family, community members and teachers (Dlamini and Matlakala 2020). However, one aspect not reported in this study, which may warrant further exploration, is the reactions of these family and community members, as well as the educators, to the treatment these children receive after such disclosure.

3.2. Financial Experiences

Among the experiences shared by the participants were those related to financial experiences. As indicated by the participants, caring for an HIV-positive child is financially burdensome to them, particularly as compounded by their level of unemployment, as well as their sole reliance on social grants. Participants who made contributions to this theme were Participant One, Eight and Four.

Participant One was among those who made remarks that were classified under this theme. She had this to say:

We do not have money for transport; it would do us good if we had transportation to go to the clinic. We struggle a bit with that.

(Participant One)

Participant Eight was clear in her remarks regarding the lack of money, which in turn affects transportation to healthcare centres. She reported this experience as follows:

It affects me a lot because I sometimes must rush to the pharmacy to spend money I do not have when—[name withheld] is not well because I sometimes fear that delaying treatment might trigger something else, so I want to treat it as quickly as possible.

(Participant Eight)

An interview conducted with Participant Four also pointed to sentiments related to her financial experiences. Her narratives were captured as follows:

I run a small spaza shop [small business], and I cannot go bigger. I cannot stock up sometimes because I must stay at home with my child when she is sick. This then affects me financially because I cannot make money when I need to be making every extra cent to cater for her medical expenses.

(Participant 4)

Issues about financial challenges encountered by caregivers of children living with HIV are not a new phenomenon, emerging from our study. The financial position of caregivers also seems to deter them from funding transport and medication costs and sometimes makes them miss some critical hospital visits and appointments. In Lorenz et al. (2016), caregivers alluded to financial difficulties, which in turn affect their transport and therefore negatively affect their hospital appointments, as well as their affordability of nutritious food. According to Mafune et al. (2017), caregivers struggle to decide whether to go for follow-ups due to the high cost of transportation. In a South African study of the challenges associated with caring for children living with HIV by Bejane et al. (2013), financial challenges encountered by caregivers of children living with HIV emerged as one of the themes, with caregivers reportedly being unable to meet the needs of their families, as well as those of children living with HIV who required special attention to maintain their health status. Caregivers, as revealed by Bejane et al. (2013), went as far as to spend their social grants (old age and foster care grants), which at the time of their study were R1080 and R710, respectively, per month.

3.3. Experiences Regarding Support Systems

From a question regarding their support systems, several responses shared by participants pointed to mixed experiences, including a lack of support from friends and members of the family, as well as the availability of support from the community. Among participants who contributed to this theme were Participant Two, Participant Five, Participant Three, Participant Eight and Participant Seven.

Participant Two indicated how she disclosed to her mother but was met with a negative reaction. This is how her experiences were recorded:

I disclosed to my mother, but she did not take it well, and that ended right there; she never supported me in looking after her grandchild or even asking how he was doing. I wish I had not told her.

(Participant Two)

In the case of Participant Five, it was the lack of support from the father of her children that bothered her. She narrated her experiences as follows:

Although he knows that the children are HIV positive and that I need a lot of support, the father of my kids comes when he feels like it; he is constantly absent from our lives and does not support us regularly. I had to take the role of both the mother and father. Umm, it is very, very difficult, I am all alone with nobody to support me.

(Participant Five)

Contrary to the above participants, who alluded to a lack of support as one of their issues, some participants reported experiencing support, particularly from the community. Participant Eight was one of those who received support, and she had this to say:

I am part of the CAB, a community advisory board, and they are very knowledgeable and supportive… I get information and stuff, when some people need to wait like six months to have information. From the community advisory board, I get the new information six months prior to it being in the public domain. This has been extremely helpful for me.

(Participant Eight)

Our interview with Participant Six also pointed to the availability of community support. She told the following story:

You see, when they first introduced the new ARV medication on the market, I knew about it before the clinic knew about it because I am a member of CAB, and that community has been very supportive of me. I do not know what I would have done without them.

(Participant Six)

For Participant Seven, having parents who share her experiences was an essential support system for her. She reported the experience as follows:

You know what, we formed CAB…it has parents that are in the same situation as me. I usually offload all my worries and troubles to them because I know that they are parents of children who have the same condition as my child, so they will understand and know exactly what I am talking about and what I am going through. Talking to them always brings me a sigh of relief.

(Participant Seven)

The importance of support from family members is highlighted by Gunda et al. (2025), who state that disclosure begins at home with accepting family members who are living with HIV and AIDS because that is where support begins. With a level of support from the family members, both caregivers and children living with HIV will experience the freedom to accept their conditions and to disclose their diagnosis and therefore allow their family members to provide the required support at a point in time. Contrary to the ideal situation where support is provided, prevention and treatment efforts can be undermined by stigma and discrimination, which instil fear of seeking and adhering to HIV services and discourage them from disclosing their diagnoses to family members and sexual partners (UNAIDS 2016). Considering what participants reported under this subtheme in the context of the existing literature, it seems that there are mixed findings (Sharer et al. 2016; Molato et al. 2024; Van Deventer and Wright 2017). Van Deventer and Wright (2017), for instance, in their Zimbabwean study of the psychosocial impact of caregiving on family caregivers of PLHIV, found family issues with some participants reporting a lack of financial support from members of their families, while others stated that whenever they had issues, they sought support from their family members. In South Africa, Sharer et al. (2016) found in their study of the types of social support among children affected by HIV and AIDS that siblings and caregivers are the most significant sources of support for children living with HIV. Similar findings were documented in Sibanda and Berejena Mhongera (2025); their study reinforced the significance of strengthening the relationships of both the caregiver and siblings. In Molato et al. (2024), it was found that caregivers received support from significant others, including family members, neighbours and life partners. Similar findings were reported by Bejane et al. (2013), whose study indicated that neighbours would assist with essentials such as mealie meal when they run out.

Part of the findings regarding the availability of support from the community is common in several South African communities. Joyce et al. (2022), for instance, highlighted the role played by the Perinatal Human Immunodeficiency Virus Research Unit (PHRU) wellness clinic in supporting caregivers towards disclosure. Khoza and Gutura (2024) also cited a few organisations that supported children living with HIV and their families with nutritional support to take their treatment, while some offered financial and educational support. In Atanuriba et al. (2022), it was found that caregivers of children living with HIV have various sources of support, including hospitals and NGOs.

3.4. Strategies for Coping with Challenges Associated with Caregiving

Among the responses shared by the participants, there was an indication regarding the strategies that they use to manage some of their challenges, which then gave rise to the theme, “Strategies for coping with challenges associated with caregiving”. Their responses were, in this regard, further categorised into three subthemes, namely: 1. Counselling as a coping strategy. 2. Gaining knowledge and information on HIV and its related issues. 3. Other coping strategies. These subthemes are discussed below.

3.4.1. Counselling as a Coping Strategy

Counselling was identified by the caregivers as an essential strategy for dealing with stressful situations arising from caring for a child living with HIV and AIDS. Caregivers indicated that they received pre- and post-test counselling and ongoing counselling, not just for the child living with HIV but also for themselves as caregivers. Among those who contributed to this subtheme was Participant One, who had this to say regarding counselling:

Going through counselling has helped me a lot; it has prepared us to know how to disclose the status to the child when the time comes. Counselling helps in a very big way; without counselling, I do not know where I would have been and what I would have done. I am very grateful to my social worker who provides me with counselling services. She does not judge me, and she listens from the heart.

(Participant One)

Another participant who shared sentiments regarding counselling as a coping strategy was Participant Four. For her, the counsellor plays an instrumental role in explaining and clarifying things that she might not know. This is how her story was captured:

But otherwise, I’m fine, but the counselling helps a lot because there’s someone who can explain better if there’s something I need to know. It is good to know that there is someone who understands your situation and who does not judge you.

(Participant Four)

Counselling has proven to be an effective support system for coping with the psychosocial challenges associated with caring for people living with HIV. The extent of counselling as an effective coping strategy for caregivers of people living with HIV (inclusive of children) was demonstrated by Kangethe (2009), whose participants voiced a need for health workers to visit their households to supervise them and provide counselling. In Atanuriba et al. (2022), one of the themes that emerged from the findings was support from formal institutions, with continuous counselling characterised by comforting attitudes from staff being preferred by the caregivers. A South African study conducted in the rural Eastern Cape by Lentoor (2017) also pointed to the significance of counselling as a coping strategy among the caregivers in paediatric HIV. Counselling also emerged as one of the themes from Lekganyane and Alpaslan’s (2019) South African study seeking to understand how caregivers of people living with HIV were managing their challenges, wherein caregivers reported that it is essential for social workers to provide them with counselling to manage their caregiving-related challenges.

3.4.2. Gaining Knowledge and Information on HIV and Its Related Issues

Another strategy adopted by the caregivers to manage their challenges involved acquiring some knowledge and developing the necessary information on HIV and its related issues. Among those who made contributions to this subtheme were Participants Three and Six. This is what Participant Three said regarding capacitating herself with information and knowledge:

I don’t want my children to get the wrong information about HIV. So, if there’s anything that they need to know, they will hear it from me. I needed to empower myself with information so that I could explain to my family and children exactly what was happening.

(Participant Three)

Another interview, which pointed to capacitating oneself with knowledge and information, is the one conducted with Participant Six, who believed that the main weapon to fight the challenges was to educate herself. She had this to say:

But going in and educating yourself is the greatest weapon. I educated myself and kept going to counselling. As you can see, I like reading. The more I read, the more I can be well informed and understand that having HIV is not a death sentence.

(Participant Six)

Regarding capacitating herself, Participant Eight reported that due to her curiosity, she would sometimes visit the clinic where she would ask nurses and doctors some questions so that she would be informed. This is what was recorded from her interview:

I have a very inquisitive mind; I would go to the clinic…. So, everything I wanted to know, I got from them. I would always ask the nurses and doctors to explain things to me in a manner that I would understand.

(Participant Eight)

As emerged from the above storylines, caregivers of children living with HIV manage their challenges by equipping themselves with the necessary information and knowledge on HIV related issues. This part of the findings seems not to be a new revelation by an empirical study. Mieh et al. (2013) also found in their South African study of home-based caregiving for people living with HIV that some level of education already attained by the caregivers, as well as some workshops provided during the course of their work, tend to empower them in managing some of their challenges. Similar findings were made by Gunda and Sibanda (2025) in their study of HIV and AIDS caregiving in low-resource communities of South Africa. Several studies also demonstrated that upon participating in disclosure programmes, caregivers experienced a sense of self-efficacy, adequate knowledge base, emotional support and were also able to answer questions from their children (Gunda et al. 2025; Okonji et al. 2022). Those who took part in Gunda et al. (2025), for instance, reported improvement in their communication skills and their ability to engage in meaningful discussions about sex, contraceptives, HIV infection, ART adherence and disclosure of an HIV-positive status. In Okonji et al. (2022), a psychosocial support programme was found to be effective in facilitating full HIV disclosure to adolescents living with HIV and encouraging treatment adherence. The revelations regarding caregiving as an opportunity to develop knowledge and information on HIV and related issues are understandable, particularly when interpreted in the context of Petros’ (2011) observation that the dreadful socioeconomic and psychosocial conditions of the caregivers are intensified by a lack of knowledge and resources for caregiving.

3.4.3. Other Coping Strategies

Some storylines that emerged from the interviews under the theme regarding coping with challenges associated with caregiving were classified under a subtheme, “other coping strategies”. These mainly involved a variety of strategies from reading books to listening to music and taking a walk to forget the issues that they are facing daily. Among those who alluded to sentiments in support of this subtheme were Participants Two, Three and Seven. For Participant Two, the three best strategies were to read a book, take a glass of wine or visit her neighbours for a chat. This is what she had to say:

When they work on my nerves at home, I take my book and my glass of wine and go next door to my sister and my mother until I am calm again.

(Participant Two)

For Participant Three, her strategy is to shift her focus from problems by taking a walk, listening to music or watching movies. She alluded to this as quoted below:

I usually take a walk, you know, listen to good music, and watch nice movies; all of that keeps me going, it keeps me sane. I need to be okay for me to be able to look after my child; she needs me, I need to be there for her financially, physically, mentally and emotionally. I am the only one that she has, so I need to look after myself.

(Participant Three)

An approach adopted by Participant Seven was also that of focusing on something else as opposed to being stressed and preoccupied with the issue. Her sentiments were extracted from the interview as follows:

I did not usually get stressed, although it has been tough since the death of my husband, I still know how to handle stress, I know how to protect my mental well-being, and I still go for a walk and take my kids to the park to relax and have fun.

(Participant Seven)

What is outlined above of the participants’ remarks regarding coping with the challenges of caring for a child with HIV through listening to music, taking a glass of wine, taking a walk, visiting neighbours to have a small chat or watching movies is not strange. Molato et al. (2024) conducted a study in South Africa’s North West province to explore the coping mechanisms of caregivers of HIV/AIDS orphans and found that among the strategies that were adopted were singing gospel songs and reading a hymn book. In Ghana, Atanuriba et al. (2022) found that neighbours were among the readily available support systems for caregivers of children living with HIV whenever they needed someone with whom they could talk. In Macinga (2019), a South African study of the challenges and coping mechanisms of caregivers of people living with HIV in the North West, caregivers reported that they cope by taking a rest to refresh and forget about their issues. There seems to be no evidence in the literature specifically on caregivers’ coping with wine. What the literature shows is that researchers such as Jardin et al. (2017) investigated the use of alcohol by caregivers on the mental health state of children orphaned by HIV and found the direct effects of caregiver alcohol use on the mental health problems of the children. As to whether such use was a coping strategy, it is not clear. This is an issue that needs further investigation.

4. Discussion

The purpose of this study was to explore the experiences of caregivers of children living with HIV and AIDS. From its findings, this study points to a very difficult position in which caregivers of children living with HIV find themselves. Despite the significance and benefits of disclosing an HIV-positive diagnosis to a child living with HIV, caregivers seem to find themselves trapped between a rock and a hard place. As much as it could be beneficial to disclose to children under their care, they seem to be concerned about the level of maturity of their children, particularly whether they would be able to keep their diagnoses confidential and not loosely share with everyone. Vreeman et al. (2013) are of the view that informing children about their HIV-positive diagnosis is a critical part of long-term disease management. However, there seems to be scant research on how and when this type of disclosure should occur, particularly in resource-limited and low-income environments such as South Africa (Gunda et al. 2025). Hlabyago and Ogunbanjo (2009) concluded from their South African study of the experiences of family caregivers of HIV/AIDS orphans that, in some cases, when some of the children demand an explanation for why they are taking medication, it becomes difficult for parents to explain.

The existence of stigma and discrimination is another impediment hampering the possibility of disclosing to a child, with caregivers raising concerns about the unintended consequences of disclosure, including exposing such children to stigma and discrimination. In view of the above issues, it becomes essential to consider the suggestion by Wu et al. (2023) that disclosure should be an ongoing process, with children being disclosed to as early as their young age. Disclosure should also consider the amount of information to be shared with a child. In Dlamini and Matlakala (2020), caregivers had mixed reactions regarding what to share during disclosure, with some believing that information on treatment may be provided when the child asks for it, while others thought it was important to share details on treatment even if the child does not ask for it because they enhance treatment.

Among the predicaments of the caregivers of children living with HIV is their financial state. Most of them are not in a good financial position to address issues such as the transport needs of these children to access healthcare facilities. For those who are formally employed, some find themselves having to stop working due to the demands associated with caregiving, including the special needs of these children. Previous studies also found financial challenges associated with caregiving for children living with HIV (Amankwah-Poku et al. 2021; Mafune et al. 2017). Several researchers, for instance, argue that for caregivers of children living with HIV who are at risk of a wide range of morbidities, the financial hardship may be an additional predictor of parental stress (Atanuriba et al. 2021; Mafune et al. 2017). In Atanuriba et al. (2021), one of the themes that emerged involved the daily care and challenges encountered by the caregivers, where caregiving activities were found to be physically, emotionally and financially burdensome, with some having their jobs disrupted by frequent illnesses of the child. Similar findings were reported by Mafune et al. (2017), where caregivers’ financial difficulties involved transport costs to access healthcare facilities for follow-up dates as well as insufficient money for food, clothing and pocket money for children when they go to school. These parts of the literature demonstrate that caring for a child living with HIV is a complex activity that is negatively affected by several factors.

The saying that goes when days are dark, friends are few seems to be a reality for these caregivers, who reported a lack of support from both their own family members and the friends and ordinary members of the community. It is essential to provide the necessary support to caregivers of children living with HIV, given the challenges associated with raising these children, which can be a very stressful experience for them (Small et al. 2023). In line with the lack of support experienced by the participants, Matthews (2019) found that most caregivers are divorced, widowed, or single mothers who have taken on the roles of breadwinners and family leaders, with little to no help from family members. This is particularly concerning because it is during these difficult times of dealing with a child who is living with HIV that they become overwhelmed to the extent of requiring support systems from friends and families. Isolation will undoubtedly aggravate their situation. According to Maddocks and Chetty (2020), a lack of support systems leads to emotional and behavioural distress, particularly when caregivers are unable to provide the desired care to these children. This could exacerbate their preexisting stress, further compromising their ability and capability to adequately look after a child living with HIV. However, not all was doom and gloom regarding the availability of support from the community. Some of these caregivers hinted at their affiliation with the so-called community advisor board (CAB), which plays a crucial role as a support system, providing them with information and a platform for mutual psychosocial support from their peers. In some instances, neighbours and some family members were supportive. Despite the above challenges, caregivers demonstrated the ability to manage through strategies such as counselling, seeking the necessary knowledge and information. Counselling is a crucial component of HIV and AIDS prevention, treatment, management, and care (Mohangi and Pretorius 2017). Other personal coping strategies, such as drinking wine, watching movies, going out for a walk, reading books, or listening to music, were among those that keep these caregivers going. The reality is that with the above experiences, the complexity of HIV, particularly where children are involved, has once again raised its ugly head, this time around with children and caregivers who are women in the majority, being on the receiving end.

Analysing the findings further from a biopsychosocial perspective, it becomes evident that HIV is a complex condition that should be understood beyond a narrow biological or physical perspective. Several factors converge to either facilitate a physical well-being or ill-being of a child living with HIV, and these include the biological factors, the psychological factors, and the social factors. As demonstrated by this study, the psychological dynamics of the biopsychosocial theory point to the fear of stigma as one of the factors hampering the disclosure of the child’s HIV-positive status, as well as the consideration of counselling as one of the strategies adopted by caregivers to manage some of the issues associated with caregiving. The fear of stigma might, in this context, involve shying away from visiting healthcare facilities to collect treatment, which may result in the deterioration of the child’s health condition and therefore negatively affect the biological dynamics component of the biopsychosocial theory. Undergoing counselling, on the other hand, may allay the fears of stigma and instil a sense of bravery in taking treatment, which may, in turn, enhance the biological well-being. During the interaction of the psychological and the biological dynamics, social dynamics also play an essential role. Lack of or ineffective support systems in the form of neighbours, community and family members will undoubtedly shape how caregivers respond to counselling and treatment. Where an unemployed caregiver does not receive any financial assistance, the level of support that she provides to the child is likely to be poor, which will in turn accelerate the child’s progression to illness. The opposite is likely to be the case where such support exists. To sum up, through the biopsychosocial theory, this study has demonstrated the complexities associated with caring for children living with HIV. It has been shown that addressing HIV-related issues requires a multifaceted approach considering biological, social and psychological interventions (Gunda et al. 2025; Zibengwa et al. 2025).

Limitations

Although this study has undoubtedly contributed to the body of knowledge regarding the dynamics of caregiving for the benefit of children living with HIV, there are a few limitations worth highlighting. This study was conducted in two main cities of South Africa, a country with a total of nine provinces and nine big cities. Its shortfall is that it did not involve the experiences of caregivers from all these cities, which therefore limited the potential diverse experiences of other caregivers from other tribes, racial groups and geographical areas. Despite being a qualitative study that does not emphasise generalisation, the sample upon which the study was based was small. Interpretation and application of the findings should therefore be done cautiously in consideration of the sample size. Furthermore, participants who took part in this study were only females. Despite caregiving being generally considered to be a female-dominated space, this all-female study leaves a gap in the experiences of male caregivers. Lastly, the study did not collect some socio-demographic details such as ethnic background of participants, age, and co-morbidity. The information on the children’s physical parameters, like BMI percentile, AIDS defining illnesses, viral load and CD4 count, was also not collected. However, the absence of this information does not diminish the value of the study since the focus was solely on the experiences of caregivers.

5. Conclusions

This study has emphasised the complexities encountered by caregivers of children living with HIV when navigating their caring trajectory. Society is still unwelcoming to people living with HIV, and this results in some level of reluctance to disclose the status of children as a way of protecting them against stigmatisation. Caregivers perform their duties in dire conditions characterised by financial difficulties with little support from their neighbours, community and family members. Within these difficult conditions in which they render care to children living with HIV, caregivers devise some strategies to survive, and these include counselling, getting more information and knowledge and other means. This study has reiterated the importance of adopting a multidimensional approach to understanding HIV care, particularly a broader consideration of the psychological, social and biological dynamics that somehow interact to exert an influence on HIV care and support. Such a multidimensional approach should also be promoted when intervening to address the challenges associated with HIV.

Recommendations

Based on the findings and conclusions, the following recommendations are proposed:

• Advocacy programmes for addressing stigmatisation and promoting unconditional care and support for people living with HIV should be developed across communities.
• Some programmes for financial relief should be introduced through either private funders or government social grants to the benefit of caregivers of children living with HIV. This will not only ease the financial burden incurred by the caregivers, but it will also enable them to afford a nutritious diet for these children and therefore promote their health and well-being.
• Continuous counselling should be provided to caregivers and these children as a form of support initiative to encourage them to remain consistent on treatment, as well as to enhance their relationships.
• Further studies are proposed on a wider scale, focusing on a larger, more diverse sample.