HIV-related stigma and access to health care among people living with HIV in Swaziland

Abstract

This paper examines the effect that HIV-related stigma has on access to health care among people living with HIV in Swaziland. Drawing on an analysis of in-depth interviews and focus group discussions, it describes the difficulties they encounter in accessing antiretroviral medication and the requisite care and support, and explores the experiences and perspectives of these people and their caregivers. It documents the way stigmatisation makes it difficult for people living with HIV to access essential health care services. The findings suggest that if antiretroviral therapy programmes are to succeed, they must not only address the issue of resource scarcity but also tackle the challenge of stigmatisation and establish adequate care and support systems for these people in their families and communities.

Keywords:

• HIV and AIDS
• antiretroviral
• people living with HIV
• social support
• HIV-related stigma

1. Introduction

Access to health care services is a critical component of human development. Facilitating access is concerned with helping people to command appropriate health care resources and services in order to preserve or improve their health, but this access may be limited by financial, organisational and social or cultural barriers (Gulliford et al., 2002). A significant social barrier to accessing AIDS-related health care services is the stigmatisation of and discrimination against people living with HIV. Herek & Capitanio (1998) define AIDS-related stigma as prejudice, discounting, discrediting, and discrimination directed at people perceived to have AIDS or HIV, their loved ones and associates, and the groups and communities with which they are affiliated. HIV-related stigma hinders the effective provision of prevention, treatment and care services to people living with HIV (Plummer et al., 2006; Wolfe et al., 2006; Rutledge et al., 2009). In their study of social preparedness for antiretroviral (ARV) therapy in a generalised AIDS epidemic, Mitchell et al. (2009) identify the social forces and institutions in South Africa that affect individuals' decisions to adopt ARV therapy as treatment. These social forces and institutions include AIDS stigma, social support for individuals with AIDS, and the health care system itself.

Access to health care services is affected by the actions of persons who are HIV positive and also by health care workers' attitudes towards people living with HIV (Chesney & Smith, 1999). Studies suggest that stigmatising attitudes towards people infected with HIV prevail even among health care workers and behaviour change agents in communities (see for instance Green & Platt, 1997; Adebajo et al., 2003; Yang et al., 2005). Lau et al. (2005) argue that fear of discrimination is one of the factors that prevents people living with HIV from seeking treatment, care, social support and information.

In Wolfe et al.'s study of the effects of HIV-related stigma on a sample of patients receiving antiretroviral therapy in Botswana (2006), 94% of patients reported keeping their HIV status secret from their community, while 69% withheld this information even from their family. Importantly, after initiating treatment, 15% of patients directly identified stigma as a factor that made it difficult for them to take ARVs regularly. Mshana et al. (2006) argue that stigma could interfere with sustained participation at all stages of the treatment continuum and threaten adherence, and they say that stigma was the most formidable barrier to accessing ARV therapy in Tanzania. This paper examines these problems in the context of Swaziland.

The paper examines the social and economic context of treatment, focusing on how stigma and discrimination affect access to health care among people living with HIV.1 To understand the interaction between the social context, resource constraints and behavioural characteristics of these people, the following questions are asked: How do people living with HIV experience HIV-related stigma and discrimination? What are their experiences and perspectives with regard to stigmatisation as a barrier to accessing care and social support? How do people's understanding and interpretation of HIV and AIDS influence their attitude and behaviour towards people living with HIV? How do these understandings reinforce stigmatising attitudes and thus impede access to ARV therapy for people living with HIV? The paper explores how an interplay between HIV-related stigma and social and economic factors makes it difficult for these people to access the necessary care, and how these barriers are exacerbated by interpersonal and community level dynamics that reinforce stigmatising attitudes. The following section describes Swaziland's health care system and its economic context, highlighting the major resource constraints in the country's health care system. Section 3 describes the study's methodology and the data gathering and analysis techniques. Section 4 presents and discusses the findings, and Section 5 concludes and suggests implications for future policy.

2. Socioeconomic conditions and the health care system in Swaziland

The Kingdom of Swaziland is the smallest country in southern Africa, with an estimated land area of 17 364 square kilometres and a population of around one million (UNCT, 2009). Although it is classified as a lower middle income country by the World Bank, Swaziland is facing increasing levels of poverty, persistent drought and food insecurity, with about 69% of the population living below the poverty line (GoKS, 2006b). Most growth performance and human development indicators for the country have been falling to the levels and pace of poorer economies (UNCT, 2009).

Although several factors account for Swaziland's socioeconomic situation, the AIDS epidemic is a major factor negating its prospects of achieving its Millennium Development Goals targets (UNDP, 2008). The prevalence of HIV infection among pregnant women attending antenatal services increased from 3.9% in 1992 to 42.6% in 2004 (MOHSW, 2004), stabilising at 42% in 2008 (MOHSW, 2008). According to the Swaziland Demographic and Health Survey (2006/07), the country has the world's highest adult HIV prevalence, estimated at 26% of people aged 15 to 49 (CSO & Macro International Inc., 2008). The epidemic has increased the need for health care, severely straining the health services delivery system.

In Swaziland the health care system is organised around the concept of primary health care comprising both formal and informal sectors (MOHSW, 2009). The formal sector has both public and private health service providers, including non-governmental organisations (NGOs), mission, industry and private practitioners. The informal sector consists mainly of traditional and other complementary and alternative health care providers. The health care system has three levels: the clinic, which is the first level of contact and a primary health care unit; the health centres and public health units, which constitute the second level of contact; and finally the hospital (MOHSW, 2008). The infrastructure of the formal health sector consists of seven government hospitals, two mission hospitals and one industry supported hospital (MOHSW, 2007). Facilities owned by missions receive most of their subsidies from the government (Kober & Van Damme, 2006). There are also eight public health units, 12 health centres, 76 clinics and 187 outreach sites (MOHSW, 2007). Coordination of the health care programmes in the country is done by the Ministry of Health and Social Welfare at the central level and by the Regional Health Management Teams at the regional level (MOHSW, 2008).

The National Health Policy's strategic objective is to improve the provision of, and increase access to, essential, affordable and good quality public health services so as to reduce the burden of disease and improve the health status and quality of life of the Swazi population (MOHSW, 2009). Treatment at all government-run medical centres is heavily subsidised (Thompson, 2011). Provision of health care at the community level is supported by trained volunteer community-based caregivers, referred to as rural health motivators (RHMs), whose duties include giving health talks, making referrals and advising communities on health issues (MOHSW, 2008). The doctor-to-population and nurse-to-population ratios are 1 : 10 000 and 5.6 : 10 000, respectively (UNCT, 2009). In terms of access to services, about 85% of the population currently live within eight kilometres of a health facility, although the quality of care provided remains a challenge due to the heavy disease burden, a chronic shortage of human resources in the public sector, deteriorating infrastructure, inadequate budget allocations and weak supportive supervision systems (MOHSW, 2009).

The rising morbidity levels as a result of HIV and AIDS have increased the demand and need for HIV-related services. Swaziland's response to the AIDS epidemic is guided by the National Multi-Sectoral HIV and AIDS Policy, which was introduced in 2006 and coordinated and facilitated by the National Response Council on HIV and AIDS (NERCHA) (UNCT, 2009). The goal of the policy is to create an enabling environment for the national response to the AIDS epidemic. One of the key policy objectives is to improve the provision and delivery of treatment, care and support to all those infected and affected by HIV and AIDS (GoKS, 2006a). The policy's guiding principles include universal access to HIV and AIDS-related health services, and protecting people living with HIV against discrimination and stigmatisation.

Even though the HIV and AIDS policy underscores the principles of non-discrimination and non-stigmatisation, stigmatisation of people living with HIV is prevalent. The Swaziland Demographic and Health Survey (2006/07) assessed the level of stigma by asking survey respondents a series of questions, including questions about their willingness to care for a sick relative with AIDS, their willingness to buy fresh vegetables from an HIV-positive market vendor and whether they would keep a family member's HIV status secret. The survey found that, for all the stigma indicators considered together, the percentage of women and men aged 15 to 49 expressing accepting attitudes was fairly low, with 43% for women and 47% for men (CSO & Macro International Inc., 2008). The Swaziland Human Development Report notes that, although a lot of work has been done by NGOs on reducing stigmatisation, people living with AIDS still complain about its prevalence (UNDP, 2008).

Despite the efforts and achievements in the fight against AIDS, the spread of HIV infections is growing, as is the number of people who require treatment, care and support services. When ARV therapy was launched in Swaziland in 2003, there were 56 nurses trained in antiretroviral therapy and two full-time antiretroviral therapy medical officers, and it was estimated that by 2006 there would be a need for 410 staff nurses and 247 nursing assistants to support ARV therapy services (GoKS, 2006b). By 2005, six public hospitals, five public health centres and six facilities in the private sector were providing these services (Kober & Van Damme, 2006). By the end of the first quarter of 2008, 51 ARV therapy sites had been established (MOHSW, 2008). Data from the International Treatment Preparedness Coalition (ITPC, 2010) indicate that there are 70 health facilities that provide these services, with 30 sites dealing exclusively with initiating ARV therapy, and the other 40 being outreach sites dealing only with ARV refills. About 59 000 people with HIV need this therapy but only 25 000 (42%) are receiving it and, although the treatment has been free since 2003, the lack of infrastructure and human resources has greatly impeded effective treatment delivery (AHF, 2009).

3. Methodology

The analysis presented in this paper was part of a broader qualitative research project on HIV-related stigma and social support for people living with HIV in Swaziland. The study used in-depth interviews and focus group discussions to explore their experiences with regard to HIV-related stigma and access to health care and the associated social support services. The analysis draws on data from 37 interviews with people living with HIV and five group discussions focusing specifically on stigmatisation, social support and the provision of ARV therapy in Swaziland. The interviews and discussions were conducted between September 2006 and February 2007 by the principal researcher, co-researcher and a research assistant who was also an RHM.

The in-depth interviews were conducted with adult HIV-positive individuals on antiretroviral therapy, 25 women and 12 men. Two programme officers (a woman and a man) from the Swaziland National Network of People Living with HIV and AIDS (Swannepha) and the Swaziland AIDS Support Organisation (Saso) and three female caregivers were included in the sample. The caregivers were trained RHMs. It should be noted that some of the HIV-positive individuals who participated in the study were also involved in AIDS-related caregiving activities. The interviewees were chosen through purposive sampling by the research assistant, since she was closely associated with people living with HIV, and the interviews were conducted on the premises of Swannepha in Mbabane, and in the homes of the interviewees or the research assistant's home.

All the participants in the focus group discussions were affiliated to support groups for people living with HIV and were recruited with the assistance of World Vision Swaziland and Swannepha. World Vision Swaziland and Swannepha were chosen for purposes of recruiting participants because the researchers could conveniently get potential study participants drawn from the PLHIV support groups in locations where the organisation has Area Development Programmes. Swannepha was chosen by virtue of its position as an umbrella body of AIDS support groups in Swaziland. The discussions organised through the assistance of Swannepha were conducted at the organisation's offices in Mbabane, and those arranged by World Vision Swaziland were carried out at community centres.

The interviews and discussions were conducted in English and siSwati and, with the permission of the participants, audio-taped and transcribed verbatim in the course of data collection. Interviews conducted in siSwati were translated into English after transcription. Interview guides covering the key topics to be explored with the respondents and a discussion guide were developed. The interviews were open-ended, inviting the people living with HIV and the caregivers to speak of their own experiences. Key issues covered included the HIV-related stigma and discrimination, available care and support structures, and experiences and coping strategies used by people living with HIV. The programme officers were interviewed on the types of services provided by their organisations and their personal experiences as people living with HIV. The interview sessions and discussions lasted between 40 minutes and one hour.

The interview and discussion transcripts were analysed to identify themes, categories and patterns. The analysis presented in this paper focuses solely on access to ARV therapy, exploring how this is shaped and conditioned by the social context of care, especially the effect of HIV-related stigma on access to health care.

In keeping with ethical guidelines for informed consent and confidentiality, the researchers did not approach potential respondents directly, but rather through the organisations World Vision Swaziland and Swannepha and the research assistant who was an RHM. The staff of the organisations and the RHM explained the purpose of the study to potential interviewees and discussion participants. Only after they had agreed and were comfortable enough to participate in the study were the researchers introduced to them. Before interviews and discussions were conducted, the interviewees and discussion participants were given background information on the study and their consent to participate was solicited. The aims of the study and their right not to participate were also explained to them. Confidentiality and privacy were ensured by not requesting information that could reveal their identities. Ethical approval for the study was obtained from the Research Board of the University of Swaziland.

This methodology had some limitations. Given that the sample of interviewees was selected purposively, and the discussion participants were drawn from social support groups affiliated to key NGOs involved in care and support activities, and people who agreed to take part in the study are likely to be different from those who did not agree or were not afforded the opportunity to participate, the findings cannot be generalised to all people living with HIV in the country.

4. Findings

This section describes the social context of ARV therapy and highlights difficulties that people living with HIV experience in accessing ARVs, adhering to treatment regimens and getting the necessary social support. Barriers to accessing health care services are explored, focusing on four key themes emerging from the data: 1) HIV-related stigma and discrimination, 2) inadequate social support, 3) stigmatisation and continuity of care, and 4) stigma and the socioeconomic well-being of people living with HIV.

4.1 HIV-related stigma and discrimination

The views and experiences of the participants in this study highlighted the complexity of HIV-related stigma. Firstly, there is stigmatisation that is rooted in people's misconceptions of how HIV is contracted and how the virus is spread. Because they lack accurate knowledge, some people believe that one can get infected through casual contact with people living with HIV. An interviewee in Mpolonjeni said that after she had disclosed her HIV status ‘most people stopped shaking my hand’. Another, a male interviewee from Mbabane, observed that people were afraid that ‘when an HIV positive person coughs, they will get the virus, and it's these fears that drive people towards discrimination’. Secondly, there is stigma associated with sexual transmission of HIV and moral decay. Some people believe that people become infected as a result of their promiscuity; a female interviewee from Mbabane said: ‘Some pastors … think being HIV-positive means you are a person of loose morals’. People are thus apprehensive about being associated with people living with HIV.

The fear of being stigmatised makes it difficult for some people living with HIV to access the services provided in health care centres and clinics, as a Programme Officer in Mbabane explained:

Some people are afraid to come to our offices because of the stigma. Some people are afraid of being seen entering our premises because they might be suspected of being HIV-positive. I think this has prevented a lot of people from accessing assistance from us.

Interviewees and discussion participants also gave accounts of how the behaviour of some of the health care workers towards people living with HIV makes it difficult for some of them to visit health care institutions. In some instances, health care providers are insensitive with regard to patient confidentiality and act in ways that could expose the patient's HIV status and thus reinforce their stigmatisation. A female discussion participant from Sitsatsaweni explained the behaviour of some health personnel as follows:

When you go to the hospital you find that there are nurses who are neither discreet nor sensitive about other people's feelings. For instance, while we are in the queue a nurse will come out and shout, ‘Those with HIV this side and those who have come to check CD4 this side’. These nurses are to blame because some people are refusing to get tested or collect their CD4 results. Some even turn back because they do not want to be the laughing stock among their peers.

This problem extends to the practice of segregating patients with HIV by placing them in separate hospital wards from other patients. HIV-positive patients construe this as discrimination rooted in stigmatisation. This, in their view, discourages some from visiting the hospitals and clinics for health services. A male interviewee from Mbabane explained:

HIV positive people are having it tough because even when they get sick they are put in separate wards from other people suffering from other ailments. In a way this promotes stigma. For instance, even if other people didn't know you were HIV positive, when they find you in Ward 12 they know that you have it too.

People living with HIV, therefore, find segregation in health care institutions problematic because they see it as marking them out as being different from the other patients.

4.2 Inadequate social support

The stigma associated with being HIV-positive affects interpersonal relationships. Some HIV-positive individuals keep their test results secret for fear of stigmatisation which, they believe, would affect their relationships. HIV status disclosure thus becomes difficult, and this lessens the effectiveness of social support measures since HIV-positive people cannot access care, or request assistance from family, friends, or the community at large. Comments by a female interviewee from Mpolonjeni illustrated the effect of stigma on people's willingness to disclose their HIV status:

The help, care and support come very late, in the sense that people hide until they are bedridden to go and look for help. The minute people know you are HIV-positive they will definitely discriminate against you. So people wait until they can no longer hide [when they become very sick].

Stigma, therefore, negatively affects interpersonal relationships and denies people living with HIV the benefits that they could derive from close-knit networks of support. A female interviewee from Piggs Peak summed it up as follows: ‘Everything changes once you are HIV-positive. You lose friends and gain sympathisers’. The interviews and focus group discussions revealed that the general public may not have concrete understanding of the dynamics of the disease, nor do they understand the situation of people living with the virus. A female discussion participant from Mbabane said:

In most cases, fear has driven many people to discriminate against their HIV-positive relatives. I do not think they really want to do that, but lack of information on how HIV is passed from one individual to another may not be available to them. As a result, we all want to protect ourselves and we will do anything in our power to feel safe.

Instances of children not providing adequate support for their parents or parents not supporting their HIV-positive children were also reported, and explained in terms of lack of understanding of HIV and AIDS, as well as fear of stigmatisation. A male interviewee from Sitsatsaweni said:

My elder brother who works in the mines in South Africa got very sick and came back home. … I was shocked by the fact that my own mother and sisters couldn't take care of him. If I bought him Coca-Cola and he didn't finish it, my mother would tell me not to give it to the children and I would finish it up … They always told me that they didn't understand the disease, and that's the reason they kept their distance.

Discrimination by the family, therefore, makes it difficult for people living with HIV to receive home-based care. Besides, families hide the sick from their neighbours and friends, thus making it difficult for them to receive support from community members who would be willing to provide assistance.

4.3 Stigmatisation and continuity of care

Continuity of care means the quality of care over time, particularly the patient's experience of a continuous caring relationship with the caregivers (see Gulliford et al., 2006). Stigmatisation makes it difficult for a continuous relationship to be sustained between people living with HIV and their caregivers. It interferes with the HIV-positive person's ability to interact freely with others, including RHMs and other caregivers, and consequently interferes with adherence to ARV therapy. Continuity of care, therefore, becomes problematic since some people living with HIV take ARVs without the necessary social and psychological support. The data reveal that some take them secretly because of the stigma associated with AIDS, and this interferes with adherence. As a male discussion participant from Mhlumeni pointed out:

The community as a whole and inner council in particular need to be educated about the disease. People are sick out there but they are taking ARVs secretly. Only if we could know those who are on medication we would care for them to the end.

The difficulty of maintaining continuity of care is particularly evident with respect to people receiving home-based care in their families and communities. The main problem is that, because of the fear of stigmatisation, family members hide the sick and sometimes fail to allow health care workers such as RHMs to see them, thus denying them the necessary routine monitoring and advice about their treatment. As one female RHM, a caregiver in Mpolonjeni, said:

In another instance I was tipped about a sick person but when I got to this homestead they refused me entry. I then reported that to one of the members of the chiefs' council with whom we work closely. Unfortunately before the week ended we were informed of the demise of the patient … In some cases the patient wants to see the visitors but the opposition comes from the family.

Thus, because of stigmatisation, people living with HIV are denied essential care and support services and the continued support that is needed to ensure adherence to ARV medication is curtailed.

4.4 Stigma and socioeconomic well-being of people living with HIV

The problem of accessing services is not only limited to access to drugs, as highlighted in the foregoing discussion. Even access to food packages provided by state and non-state agencies is complicated by the presence of community members whose attitude and behaviour towards people living with HIV make them uncomfortable to go publicly to collect the food. By deterring them from visiting the food collection points, stigmatisation exacerbates the problem of inadequate nutrition for people living with HIV. One female discussion participant from Sitsatsaweni lamented:

Tomorrow we are going to be receiving the corn-soy powder supplement. When we get there, sisi, there will be spectators to see who will take it home. Some people from this community go there to make fun of us. Others say things like ‘Oh you are also one of them’ and that is not nice. People need to be told that even if one is HIV-positive there is still hope.

Some families lack adequate financial resources to support the sick, and the knowledge that those who contract the virus will ultimately die of AIDS makes them start anticipating funeral costs at the expense of providing the care and support that the sick badly need, as a male discussion participant from Sitsatsaweni explained:

Because our families are different, you find that when you tell them that you have HIV they quickly think of a funeral the next day. Our families are quickly troubled by the fact that if you are sick then they have to bear funeral costs – that is a thought that lingers in their minds for some time … I was very angry when my father was complaining about the pending funeral costs. I was very hurt and confronted them when I got better.

Concerns about funeral costs are an indication of the stigmatised and devalued status of people living with HIV. In addition, their attempts to better themselves through income-generating projects are frustrated by the fact that community members do not always support their initiatives. Referring to a garden project supported by the Baphalali Swaziland Red Cross Society, a male discussion participant from Sitsatsaweni said:

Another example of discrimination in this community was evident when the Red Cross gave us seedlings and fertilisers to start gardens. People started saying ‘wherever there is a garden there is an AIDS sufferer’. These people are refusing to support us but others ask for our produce secretly.

The lack of sufficient support from the community and the negative attitudes are likely to discourage people living with HIV from starting income-generating activities for fear that the community will be unwilling to buy their produce. Once their attempts to earn a living through such initiatives are frustrated, they are left without sufficient means to access health care services.

5. Conclusions and implications

This study has described the way HIV-related stigma and other contextual factors can hinder access to health care services for people living with HIV. Interview and focus group discussion data show how stigma mediates peoples' attitudes and behaviours towards people who are HIV-positive and their activities. Findings from this study show that lack of social support from the family and the community makes it difficult for them to access health care and sustain continuity of care, for fear of stigmatisation and other people's ignorance about the disease. The data indicate that people lack sufficient knowledge about AIDS and critical information on how to care for those infected with HIV. This finding corroborates the findings of previous studies which have found that stigma is a serious problem, especially in rural areas where knowledge about HIV is limited (see Ji et al., 2007).

Consistent with findings from previous investigations, HIV-related stigma was found to be a major drawback to accessing ARV therapy services for a number of reasons. Firstly, it constitutes a serious barrier as fear of stigmatisation keeps the sick away from health care facilities. Secondly, the fear of stigmatisation makes some families and community members wary of providing social support to people living with HIV because they are afraid of getting infected or being associated with people suffering from AIDS. Studies focusing on the roll-out of ARV therapy in resource-limited settings have reported similar findings highlighting stigma as a major stumbling block in the successful implementation of ARV programmes (see Mshana et al., 2006; Wolfe et al., 2006). Chesney and Smith (1999) have noted that stigmatisation can result in HIV-positive individuals foregoing valuable social support and medical treatment that could improve their longevity and quality of life.

The study found that the major hindrance to accessing health services is the prevailing stigma and discrimination. People living with HIV are not adequately integrated into the community because of the stigma associated with being HIV-positive. This stigmatisation extends to their family members, and affects the economic activities that they engage in. Accounts by these people described how the attitude of the community makes it difficult for them to collect medication or donated food packages. Furthermore, even when they attempt to uplift their economic well-being through small-scale income-generating ventures, the community does not always sufficiently support these projects.

This analysis brought to light the intertwined nature of the factors that perpetuate HIV-related stigma in Swaziland, and explored how inadequate understanding of the AIDS epidemic tends to reinforce stigmatising and discriminatory attitudes towards people living with HIV. In explaining how these factors determine access, the analysis was cast in terms of the particular concatenation of social and economic forces at the familial and community levels focusing on how the interplay between these factors shapes access to health care services. On the whole, the findings demonstrate that it is not sufficient to simply have service agencies and personnel closer to those who need care; it is also essential to take cognisance of social factors, specifically stigmatisation of people living with HIV, when designing service delivery systems.

The findings suggest that the success of ARV programmes is contingent upon not only addressing the issue of resource scarcity but also tackling the challenge of stigmatisation and establishing adequate family and community support systems for people living with HIV. Given the pivotal role played by support groups formed by people living with HIV, state and non-state agencies involved in caring for these people should support these groups and their income-generating initiatives. Studies have shown that coping may be facilitated by social support networks (McDowell & Serovich, 2007), and that social support is associated with lower levels of stigma (see Alonzo & Reynolds, 1995; Galvan et al., 2008). Furthermore, since stigmatisation has also been found to prevail in health care settings (see Green & Platt, 1997; Adebajo at al., 2003; Yang et al., 2005), health care professionals, as suggested by Chesney and Smith (1999), must make a strong commitment to counter their own prejudices towards people living with HIV. Rutledge et al. (2009) have suggested that stigma will decline as more professionals are trained to work with HIV-positive people.

There is a need for agencies involved in AIDS-related activities to make stigma reduction a key component of their programmes. To address the challenge of availability of appropriate information about AIDS and care and support for people living with HIV, which has been highlighted in this study and in previous investigations, anti-stigma strategies should, as suggested by Campbell et al. (2007), entail a process of dialogue within local communities to make available information compatible with the communities' frame of reference and social practices. Such strategies should be implemented by broadly involving communities and families in sensitisation activities with regard to care and support for HIV-positive persons, HIV-related stigma and discrimination, and treatment education for people living with HIV and their caregivers.

Acknowledgements

This study was supported by the Research Board of the University of Swaziland (Uniswa). Lungile Mabundza's role in collecting data and translating the siSwati interviews and focus group discussions is greatly appreciated.

Notes

¹‘People living with HIV’ is sometimes abbreviated to PLHIV.