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Perceptions of HIV/AIDS leaders about faith-based organisations’ influence on HIV/AIDS stigma in South Africa a

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Mpoe Johannah Keikelame , Colleen K Murphy , Karin E Ringheim & Sara Woldehanna

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Directorate of Primary Health Care, Faculty of Health Sciences , University of Cape Town , Observatory 7925, Cape Town, South Africa b

AIDS Research Alliance , 1400 S. Grand Ave, Suite 701, Los Angeles, California, 90015, United States c

Population Reference Bureau , 1875 Connecticut Avenue, Washington, D.C., 20009, United States d

2501 McComas Avenue, Kensington, Maryland, 20895, United States Published online: 19 May 2010.

To cite this article: Mpoe Johannah Keikelame , Colleen K Murphy , Karin E Ringheim & Sara Woldehanna (2010) Perceptions of HIV/AIDS leaders about faith-based organisations’ influence on HIV/AIDS stigma in South Africa, African Journal of AIDS Research, 9:1, 63-70, DOI: 10.2989/16085906.2010.484571 To link to this article: http://dx.doi.org/10.2989/16085906.2010.484571

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Perceptions of HIV/AIDS leaders about faith-based organisations’ influence on HIV/AIDS stigma in South Africa Mpoe Johannah Keikelame1*, Colleen K Murphy2, Karin E Ringheim3 and Sara Woldehanna4 Directorate of Primary Health Care, Faculty of Health Sciences, University of Cape Town, Observatory 7925, Cape Town, South Africa 2AIDS Research Alliance, 1400 S. Grand Ave, Suite 701, Los Angeles, California 90015, United States 3Population Reference Bureau, 1875 Connecticut Avenue, Washington, D.C., 20009, United States 42501 McComas Avenue, Kensington, Maryland 20895, United States *Corresponding author, e-mail: [email protected]

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The extent of the HIV pandemic — particularly in the hardest-hit countries, including South Africa — has prompted a call for greater engagement of all groups, including faith-based organisations (FBOs). Although FBOs are known to play a substantial role in providing care and support to those affected by HIV and AIDS, empirical evidence in regard to their actions in the broader context of stigma is limited. A qualitative, key-informant survey was conducted in South Africa as part of a six-country international study to examine perceptions of how FBOs have contributed to reduction in HIV risk, vulnerability and related impacts. The special emphasis of this paper is the influence of FBOs on stigma and discrimination. In-depth interviews were held with 34 senior-level key informants who act as key decision-makers in the response to HIV and AIDS in South Africa. Secular and faith-based respondents shared their perceptions of the faith-based response, including FBOs’ actions in relation to HIV/AIDS stigma and discrimination. Our study revealed that while FBOs were perceived as taking some action to address stigma in South Africa, FBOs were also thought to contribute to HIV/AIDS- discrimination through conflating issues of sexuality and morality, and through associating HIV and AIDS with sin. The interviewees indicated a number of internal and external challenges faced by FBOs to deal effectively with stigma, including lack of information and skills, the difficulty of maintaining confidentiality in health services, and self-stigmatisation which prevents HIV-infected persons from revealing their status. Findings from this study may help both faith-based and secular groups capitalise on the perceived strengths of FBOs as well as to elucidate their perceived weaknesses so that these areas of concern can be further explored and addressed. Keywords: advocacy, attitudes, developing countries, discrimination, interviews, morality, people living with HIV/AIDS, social conditions

Introduction Despite recent advances in its public policies to address HIV and AIDS, South Africa continues to have the largest HIV epidemic of any country in the world: an estimated 5.7 million people there now live with HIV (Department of Health, 2003, 2007 and 2008). The epidemic is primarily heterosexually transmitted, and new infections are increasing most rapidly among women. In 2008, the percentage of pregnant women receiving antenatal care who tested HIV-positive (29.3%) was more than 10% higher than for adult prevalence overall (17.5%) (Department of Health, 2008). The epidemic is aggravated by contextual factors, including poor public health facilities, high unemployment, poverty, gender-based violence, and lack of basic services such as housing, electricity and water for many citizens. The denial and inaccurate messages surrounding the origin and treatment of HIV and AIDS which earlier characterised the South African government’s response (Treatment Action Campaign, 2009) has contributed to HIV and AIDS

remaining stigmatised and poorly understood in many communities (Ferreira, Keikelame & Mosaval, 2001; Skinner & Mfecane, 2004; Maughan-Brown, 2009). Stigma and the consequent acts of discrimination are well-recognised as factors that help drive the HIV pandemic (Aggleton, 2000; UNAIDS, 2008). Stigma is a social phenomenon that requires a contextual understanding of its nature and practice (Skinner & Mfecane, 2004). It presents in many forms that may result in negative experiences, such as exclusion, rejection, blame or devaluation, and social judgment about a person or groups identified with specific health problems (DeBruyn, 1998). This powerful labelling given out by society can affect the ways that individuals view themselves or are viewed by others (Weiss & Ramakrishna, 2006; Simbayi, Kalichman, Strebel, Cloete, Henda & Mqeketo, 2007). Stigma often interferes with and undermines efforts directed at HIV and AIDS prevention, care and treatment, by isolating and creating fear and self-stigmatising behaviour, often among those who are most in need of these services (Campbell, Foulis, Maimane

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& Sibiya, 2005; Maughan-Brown, 2009). The extent of the pandemic, particularly in the hardest-hit countries like South Africa, has prompted a call for greater engagement on the part of all sectors, including faith-based organisations (FBOs) (UNAIDS, 2001). While the critical role that FBOs have played throughout sub-Saharan Africa in providing care and support to those affected has been internationally recognised (Byamugisha, Steinitz, Williams & Zondi, 2002), less is known about the contribution of FBOs to the broader comprehensive response, including stigma mitigation (Johnson, Tompkins & Webb, 2002; Green, 2003). FBOs have been reported to mobilise and engage with communities at the grassroots level, rendering direct and indirect HIV/AIDS-related services, including prevention, care, support and counselling to a large number of communities — yet little has been documented of these efforts. The scant research that has been conducted to assess the work of FBOs in the area of HIV and AIDS includes surveys, evaluations, and literature reviews of varying quality, scope and geographical focus, and with very peripheral mention of the role of FBOs in mitigating HIV/AIDS stigma within the African context (UNICEF, 2004; Parker & Birdsall, 2005; Krakauer & Newbery, 2007). The Royal Tropical Institute (The Netherlands) asserted in a literature review examining the activities of Christian and Islamic FBOs in responding to HIV and AIDS in sub-Saharan Africa that “more research is needed to document the influence of religion on behavior change and to assess the effects and processes of FBO work” (Tiendrebeogo & Buykx, 2004, p. 53). Given the intractable nature of the epidemic, there is a critical need to understand the response by FBOs and to investigate appropriate mechanisms that FBOs can use to lessen HIV/AIDS stigma and discrimination. With a dearth of rigorous quantitative data on the topic, and a wealth of viewpoints, we sought to evaluate stakeholder perceptions on how FBOs respond to HIV and AIDS in one of the most deeply affected nations. Through conversations with both secular and faith-based decision-makers intimately familiar with HIV and AIDS, our study examined how FBOs in South Africa are perceived in this regard, with an aim to inform policy dialogue and to lay the foundation for future action and research.

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lessen stigma, address harmful social norms, and increase political commitment to address the gender and economic disparities that fuel HIV incidence. We based many of our questions on the areas addressed in the document in order to ascertain the extent to which FBOs in South Africa are perceived to be supporting the strategy’s recommended approaches to breaking the aforementioned cycle (Table 1). The questions we developed referred to the key informants’ perceptions of the extent of FBOs’ leadership, collaboration, and contribution in responding to the stigma and discrimination experienced by persons living with or affected by HIV or AIDS. Key informants Our South African interviewees were purposively sampled using a ‘snowball technique,’ beginning with a list of over 100 potential informants compiled from a background information search and references provided by other key actors in the field of HIV and AIDS. Through these discussions with HIV/AIDS experts, we identified 34 senior-level individuals actively engaged in the response to HIV and AIDS, in Cape Town, Durban, Pretoria and Johannesburg, to serve as the study’s key informants in line with pre-identified sector quotas. Those surveyed included government officials, researchers, health-service providers, national AIDS control programme officers, representatives from non-governmental organisations (NGOs), pharmaceutical representatives, and leaders from the major FBOs in the country. The great majority of South Africans who profess a religious affiliation identify with a Christian denomination, particularly Protestant (41%), traditional African Independent Church (AIC) (27%) and Catholic (11%); followers of Islam represent between 1.6% and 3% of the population (Pew Research Center Publications, 2009; Religious Intelligence, 2009).

Risk reduction

Methods The key-informant study in South Africa was part of a broader qualitative study conducted to explore the role of FBOs in addressing the HIV pandemic in six countries chosen to represent different regions, stages of an HIV epidemic, and religious traditions. The larger exploratory study was based on interviews with expert key informants in Haiti, India, Kenya, South Africa, Thailand and Uganda, as well as those working in the international arena (Woldehanna, Ringheim, Murphy, Gibson, Odyniec, Clérismé et al., 2005; OtolokTanga, Atuyambe, Murphy, Ringheim & Woldehanna, 2007). A semi-structured interview guide was grounded in The Global Strategy Framework on HIV/AIDS (UNAIDS, 2001), a consensus document developed by United Nations member states to break the cycle of HIV/AIDS risk, vulnerability, and impact through an expanded response. The strategy aims to

Impact reduction

Vulnerability reduction

Figure 1: Breaking the cycle of HIV/AIDS risk, vulnerability and impact (source: UNAIDS, 2001, p. 8) The interrelationship of the basic dynamics of the HIV epidemic: • Decreasing the risk of HIV infection slows the epidemic; • Decreasing vulnerability decreases the risk of HIV infection and the impact of the epidemic; and, • Decreasing the impact of the epidemic decreases vulnerability to HIV and AIDS.

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Given the religious profile of the country and the preponderance of religious-affiliated health services that are Christian, the majority of representatives we interviewed in the FBO sector were Christians (see Table 1), and included Anglican, Catholic, Moravian, Methodist, and Presbyterian key informants. However, we also interviewed representatives from traditional indigenous and Islamic faiths. The distribution of key informants selected from both faith-based and secular sectors is given in Table 1. Interview framework and procedures Ethical clearance to conduct the study was obtained from the Faculty of Health Sciences Research Ethics Committee at the University of Cape Town. The semi-structured questionnaire, piloted in Cape Town, focused on key issues addressed in The Global Strategy Framework on HIV/AIDS (UNAIDS, 2001) and sought to elicit the view of South African respondents on FBOs’ contributions (or any lack thereof), the conditions that define FBOs’ participation (including as facilitators or barriers) and the consequences (both positive and negative) of their involvement in the response to HIV/AIDS. The term faith-based organisation was broadly defined to include a range of entities — from places of worship to development organisations with a mission of faith. A consent agreement was read to interviewees in regard to their right to confidentiality, as well as to end participation in the interview at any time and to be informed on how the information would be used and disseminated. After verbal informed consent was obtained, face-toface semi-structured interviews, lasting an average of 60 minutes, were conducted and audio-taped. The tapes were transcribed verbatim. With the exception of one interview conducted in isiZulu, all interviews were in English. Data analysis Qualitative analysis software (Atlas.ti) was used to code and analyse all of the electronic transcripts. To reduce the potential for bias, the transcripts were identified by number and not name. Two coders were trained to analyse the transcripts according to pre-established categories identi-

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fied in a codebook developed using the themes and concepts of the detailed Global Strategy Framework on HIV/AIDS. Coding was cross-checked for reliability between the two coders and for consistency, using manual qualitative content analysis. The transcripts were divided into two sub-groups: ‘FBO informant’ and ‘secular informant.’ Using content analysis and grounded-theory techniques (Corbin & Strauss, 2008), key findings within categories were identified through both indexing/counting as well as the identification of emergent themes agreed upon in discussions among the researchers. The recurrent themes were systematically analysed, compared and contrasted across the sectors. While each interview covered the full spectrum of FBOs’ actions in relation to The Global Strategy Framework on HIV/AIDS (UNAIDS, 2001), this paper is based on an analysis of the responses to the specific question: ‘What actions have FBOs taken that promote or dissuade stigma and discrimination?’ The analysis presented is based on the perceptions of our key informants and does not aim to validate the objectivity of these perceptions. Responses to this question — as provided by senior leaders actively involved in a response to HIV and AIDS in South Africa — can inform the policy dialogue on how contributions from the faith-based sector can be optimised, and meanwhile show us where further documentation and research are needed. In light of the sensitivity of some of the subject matter explored, and to protect the confidentiality of the key informants, the quotes here are not attributed except to denote whether the respondent represented a faithbased or secular entity. The quotations reported here are intended to draw attention to the key themes identified through our analysis. They do not represent the entirety of the quotations garnered for each theme. Findings The respondents approached the concept of HIV/AIDS stigma from several perspectives: 1) an ideal or desired role for institutions of faith to challenge stigma; 2) a perception that FBOs have a comparative advantage over other

Table 1: Numbers of South African key informants by secular and faith-based sectors Number of informants Non-faith-based sectors (n = 22 informants) Businesses/pharmaceutical companies Donors Government ministries Healthcare facilities HIV/AIDS researchers International governmental organisations National AIDS control programmes Non-governmental organisations Organisations representing people living with HIV or AIDS Organisations representing other vulnerable groups Faith-based sectors (n = 12 informants) Christian Traditional/indigenous Muslim Total

1 1 2 2 1 1 2 6 4 2 9 2 1 34

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institutions to combat stigma; 3) actions or ‘mis-actions’ through which FBOs are perceived to have contributed to HIV/AIDS stigma or discrimination; and 4) efforts that FBOs are perceived to have made to fight stigma and discrimination. These themes, highlighted in the next sections, reflect common ground among both the secular and FBO respondents concerning the role that FBOs both should play and were perceived to play. An ideal role: FBOs’ moral/ethical obligation A key theme expressed by the respondents regardless of the sector they represented was the perceived moral and ethical responsibility of FBOs to fight stigma. Both faithbased and secular key informants discussed the inherent duty of faith-related groups to take up the fight against HIV/ AIDS stigma: ‘The church as a faith-based organisation is simply the people — the people of God. Therefore, these are our people. Therefore, the church ‘has AIDS’; it’s not that those people out there have AIDS. And we, as a church, have got to go do something for them. These are our people’ (FBO informant). ‘My first and foremost belief is that the faithbased organisations have a special responsibility in promoting a philosophy of — Don’t do harm to yourself and don’t do harm to others’ (secular informant). FBOs’ comparative advantage to influence norms In terms of their revered position in society and their reach into communities, FBOs were also perceived to be well-positioned to tackle stigma and discrimination as few other institutions can: ‘Since the beginning of the epidemic, I would say the role of the church has been cut out for the fight against HIV/AIDS’ (secular informant). FBOs were thought to possess a comparative advantage in their ability to address stigma through their existing channels of social mobilisation. As trusted entities within the community, FBOs were lauded for their significant potential — both untapped and realised — to positively influence the social norms of their congregations: ‘There’s no one else in society who can deal with stigma and discrimination [like the church]. If you look at legislation, they can pass bills and make laws, but you cannot change the heart of a person…the church and the faith-based community has historically been involved with the changing of minds of people and the hearts of people…so that is why we are the best placed sector in society to deal with stigma and discrimination’ (FBO informant). ‘We’re meant to trust our religious leaders. As a rule we don’t trust our politicians…because people trust religious leaders more than government officials; if they come out wearing HIV-positive T-shirts, it would lead to openness, reducing stigma’ (secular informant). FBOs’ actions and ‘mis-actions’ contribute to stigma and discrimination Some respondents shared their concern that many FBOs

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still hold and propagate the perception that HIV infection is a punishment for immoral behaviour. Religious organisations that embrace this ‘retribution’ paradigm were cited by the interviewees for their inability to offer unbiased and compassionate care and support: ‘Some of the experiences that I’ve had with other faith-based groups, and with which I disagree, is that…they’ve regarded AIDS as a punishment from God’ (secular informant). ‘I think one of the biggest obstacles that we still have to overcome is to separate sin and AIDS…and so if we start acknowledging that our members have AIDS…we’re actually saying that we’re entertaining sinners. Now that might be a very harsh way of looking at it, but I think that is at the heart of it, and ministers still battle to get past it’ (FBO informant). ‘There are a lot of loaded terms I think the sector uses. So it’s almost like there’s this underlying message of — This is a punishment from God. You’ve done something wrong. We love, we’ll take care of you, but you know this is something maybe which you caused’ (secular informant). While members of the faith-based community acknowledged that traditional moral teachings were a challenge to their response to the HIV pandemic, their actions were judged more harshly by some of the secular interviewees: ‘I think on an individual basis, some FBOs have [addressed stigma], but they haven’t addressed it effectively enough because there’s still so much stigma and discrimination in the communities, and it’s often FBOs or churches or religious institutions themselves that are guilty of stigma and discrimination’ (secular informant). ‘I think it depends on the community. In South Africa we still have a lot of work to do with FBOs, because a lot of them are still judgmental, still discriminate against people with HIV, kick them out of the congregation. There are very few churches or religious institutions that actually have a compassionate approach…’ (secular informant). ‘They don’t want to discriminate against people living with HIV, and they want to create a church that supports people living with HIV. But on the other hand there’s sometimes this underlying thing of if you get HIV, are you ‘guilty’ or an ‘innocent victim’ — how did you get it?’ (secular informant). Conflating sexuality, morality and HIV/AIDS Both the secular and faith-based respondents perceived difficulty among FBOs in dealing with and speaking openly about sex and sexuality. A number of these statements were self-referent, indicating that the respondents from FBOs were not necessarily blaming others but including their own organisations among those found to have shortcomings in this regard. Clergy were seen to lack the skills and knowledge to deal accurately with HIV/ AIDS issues, including the topic of sexual transmission of HIV. Thus, inadequate knowledge and social skills may contribute to the preaching of contradictory and confusing messages and ultimately to the inadvertent promotion of

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HIV/AIDS stigma and discrimination: ‘One of the biggest obstacles that we still have to overcome is to separate sin and AIDS’ (FBO informant). ‘It depends on which faith-group, but I think sex is still a very difficult issue for the faith-based sector to talk about. There’s a lot of talking around issues of sex, sexuality and STDs [sexually transmitted diseases]. And I’ve witnessed that a lot in the work that I’ve done. And so there’s still some silence, strong taboos, and some messages sometimes can be a little confusing. Sometimes there’s some double-messaging going on…’ (secular informant). ‘We did not do very well as faith-based organisations because we actually could not handle HIV and AIDS…it’s an issue that borders on sexuality, and FBOs could not even come to terms with the language that is used when dealing with HIV and AIDS issues…’ (FBO informant). Stigma and disclosure Many of the informants noted that congregations are well-placed to support persons living with HIV or AIDS (PLHIV), who, in their search for spiritual, social or medical support, may reveal their HIV serostatus. However, when members of the congregation or community fear moral blame for having HIV infection, this fear is thought to act as a strong deterrent to disclosure: ‘I would say that FBOs should cooperate more…we should speak more openly about sexuality than we have been doing. The church should really become a safe place for disclosure. That is what we should do more differently’ (FBO informant). ‘I know it’s difficult for people to speak because they have even been disappointed by the church… they are not sure they can trust the church, or trust the church worker with their [HIV] status. For the church, we should be the forerunners in keeping confidentiality, keeping the trust of the people…’ (FBO informant). Fear may be especially potent among clerics and other religious leaders who are themselves HIV-positive: ‘I think that there’s a lot of fear in faith-based sectors for people living with HIV to disclose their status, because there’s a lot of naming and blaming and stigmatisation, I think…’ (secular informant). ‘Even in faith-based organisations, it [disclosure] is still a very difficult thing…people are afraid to speak out because of the fear of being isolated’ (FBO informant). Faith-based informants also discussed the self-stigmatisation that prevents some PLHIV from accessing critical health services offered by FBOs, as well as the challenges that FBOs face in protecting confidentiality: ‘Then there’s the other concern that patients have — the issue of their fear. Fear in the sense that they don’t want people to know, so that prevents them from accessing primary healthcare’ (FBO informant). ‘Confidentiality is not at all easy because if you go

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through this door, everybody knows where you are going’ (FBO informant). FBOs’ actions against stigma Both secular and faith-based key informants also noted important actions taken by FBOs to dissuade HIV/AIDS stigma and discrimination in their communities and to promote inclusiveness and acceptance. The respondents also recognised that FBOs, while exceedingly influential, must fight against other sources of influence and misinformation in the community: ‘I think there are very sincere attempts [to address stigma]…yet they still deal with a community, a generation who stigmatises HIV’ (secular informant). ‘The Bishop has been very specific…he says that it is not a sin to be HIV-positive; it’s not a condemnation from God; and slowly, I think that message will come through…but it would help if the leaders of the country and sports people would say same things’ (FBO informant). ‘…And then on the other hand, there’s been faith organisations that have come up very strongly around that…who say AIDS is not a punishment from God and stigma[tising someone] is a sin. And I think that’s had an incredible powerful impact at the local level in terms of how people understand HIV’ (secular informant). The respondents also noted the importance of FBO leaders in the reduction of stigma associated with being tested for HIV, by means of their own public participation in voluntary counselling and testing (VCT) programmes: ‘The leaders within faith-based sectors need to play an active role in promoting voluntary testing. As an example, we had the leaders, all the bishops who went for VCT. It would be better…if we are going to promote something, we need to do [an HIV test ourselves]’ (FBO informant). While key informants noted that positive faith-based actions to fight stigma were becoming more common, others mused about the potential impact on the epidemic if FBOs had been engaged earlier: ‘…Through various community structures — one of which FBOs are increasingly seen in — [we have been] increasingly more and more successful in terms of stigma and discrimination. To move the mentality of all communities towards acceptance, to the idea that these people are our people…these are our sisters and brothers. This is a disease like any other disease, and we, the community, are responsible for everybody here’ (FBO informant). ‘Remember that the church has been quiet. And we cannot play holy, holy here. There are churches that say that HIV and AIDS is about judgment, and to move from that place needs a bold person to look back at her/his own faults and say — I’m prepared to start a new life. If the effort that we are doing, [now] had [been] done back in the early ’80s, we wouldn’t be in the mess of the pandemic that we have now’ (FBO informant).

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Discussion A considerable body of research has documented the extensiveness of HIV/AIDS stigma in the South African and southern African context (Campbell et al., 2005; Simbayi et al., 2007; Maman, Abler, Parker, Lane, Chirowodza, Ntogwisangu et al., 2009; Maughan-Brown, 2009). However, limited research within the African context has assessed the work done by FBOs to address HIV and AIDS, including their role in mitigating HIV/AIDS stigma (UNICEF, 2004; Krakauer & Newberry, 2007). Stigmatisation can have a more severe impact when exercised by people whose leadership and opinions are otherwise valued (Parker & Aggleton, 2003). While many religious leaders have been lauded for using their influential voices to fight stigma and discrimination directed towards those infected or affected by HIV or AIDS, some of these same leaders have also observed that ‘mis-actions,’ including harmful interpretations of religious doctrines and moral positions, have enabled religious leadership to interfere with HIV-prevention efforts and to perpetuate stigma (Byamugisha et al., 2002; AVERT, 2007). Openness about HIV/AIDS (minimisation of stigma) is likely to be a central factor in the readiness of communities to realistically assess their own risk, as well as in shaping the community’s response to the epidemic (Aggleton, 2000). FBOs are at the centre of community life in much of South Africa and have extensive reach into the most remote and isolated parts of the country. These organisations hold positions of trust, which give their actions and words considerable potency. They have frequent opportunities to interact with their congregations and communities and have the ability to influence social norms and behaviours through moral teachings. While our respondents perceived FBOs as having not optimally used their comparative advantage, they also viewed them as potentially powerful allies in combating HIV/AIDS stigma. As one key informant noted, FBOs have the ability to turn the discussion of sin away from the topic of sexual behaviour and towards the sin of stigma itself. Consistent with our findings, a key-informant study in Trinidad and Tobago found that while religious representatives expressed some acceptance of PLHIV, a level of stigma existed within their institutions which primarily associated HIV and AIDS with a promiscuous lifestyle and/or homosexuality (Gillian & Brader, 2005). Research elsewhere in sub-Saharan Africa demonstrates that women typically experience more severe stigma than men: a woman’s HIV infection may imply that she has failed to be faithful, chaste and morally pure, and is therefore to be blamed (International Center for Research on Women, 2006). Key informants in our study noted that South African FBOs need to engage more vocally in advocacy to address the social and contextual factors that increase HIV vulnerability, such as poverty and gender inequality. Both secular and faith-based respondents in our study noted that faith-based leaders in South Africa lack the language and social skills to talk openly about issues related to sex and sexuality. For instance, many were perceived to have had little or no training in dealing with gender inequality and sexual discrimination within marriage.

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As a result, some of their stigmatising actions were viewed as unintentional, yet not without consequences. There is a significant need to build the capacity of faith-based leaders to lessen HIV/AIDS stigma, through appropriate educational and empowerment programmes. Supporting this view, the African Religious Health Assets Programme (ARHAP) at the University of Cape Town recommends mutual responsibilities: national governments must recognise and leverage the vital assets offered by religious entities, such as their reach, legitimacy, resources and structures; and, religious entities must become informed about the social determinants of health, including poverty, and build a ‘contextual theological response’ that does not impose a conservative belief system that can fuel stigma and undermine HIV-prevention efforts (Haddad, Olivier & De Gruchy, 2008). As the World Council of Churches (WCC) noted in a review of the work of FBOs in sub-Saharan Africa, “Information was not always easily accessible as FBOs are busy ‘doing’ but are notoriously bad about, or are not trained for, monitoring, evaluating, and documenting their efforts” (Parry, 2003, p. 3). In light of this lack of empirical or evaluative information on FBOs’ activities, many FBOs remain vulnerable to criticism and miss important opportunities to better understand and disseminate the lessons learned from their own work. Consequently, in the fight against HIV/AIDS stigma, decision-makers may be forced to rely on anecdotal evidence that may or may not be accurate. Conclusions As the HIV epidemic continues unabated in South Africa, it is increasingly critical to combat and eliminate the drivers of the epidemic. UNAIDS has identified stigma and discrimination, along with gender inequality, as the leading factors contributing to HIV risk and vulnerability in most countries today (UNAIDS, 2008). These are clearly among the most serious and intractable of the factors driving the epidemic in South Africa, especially hampering efforts to reduce the vulnerability of young women to new HIV infections, keeping people from ascertaining their serostatus, preventing HIV-positive individuals from accessing lifesaving treatment for themselves, and forcing persons in need of care and support to live in isolation (Skinner & Mfecane, 2004; Maman et al., 2009; Maughan-Brown, 2009). Among those living with HIV or AIDS, the psychological distress resulting from HIV/AIDS stigma interferes with coping and undermines HIV-prevention efforts (Aggleton, 2000; Simbayi et al., 2007). The Government of South Africa has recently stressed that HIV-prevention efforts need to be ‘urgently strengthened and sustained’ (Department of Health, 2008) in order to lessen the epidemic. While the cooperation and leadership of FBOs is needed in all aspects of HIV and AIDS prevention, care, support and treatment, it is especially needed in combating stigma and discrimination. Our findings elucidate the perceptions and help clarify the misperceptions of the faith-based response to HIV and AIDS, particularly with regard to the stigma that hampers both HIV prevention and care-seeking. Our findings suggest that South African-based FBOs and religious leaders are perceived as uniquely positioned to

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disrupt HIV/AIDS-related silence and counteract stigma and discrimination. FBOs were viewed as having tremendous power to influence community norms and reduce the vulnerability of especially women and girls to HIV and AIDS. At the same time, by failing to actively combat negative views and actions, FBOs were perceived as passively perpetuating stigma. Informed by this study and other research, faith-based and secular groups can build on the perceived strengths of FBOs and overcome the weaknesses and counterproductive actions described by our respondents. FBOs can also better document and evaluate the success of their work directed at combating stigma. Optimising the faith-based response to address stigma can advance cooperative and comprehensive efforts to reverse the HIV and AIDS epidemic in South Africa and support the government’s renewed commitment to HIV prevention. Acknowledgements — We would like to acknowledge the valuable contributions of our key informants; the technical assistance of Tsuki Xapa, Nannette Rowland and Nontsasa Nako; the editorial support provided by Susan Newcomer, Pauline Muchina, and Sara Friedman; and the helpful suggestions from our anonymous reviewers. Our thanks are also extended to the Global Health Council, the University of Cape Town Primary Health Care Directorate, and the Catholic Medical Mission Board for their support of this project. We are also grateful to the Rockefeller Foundation for supporting a meeting of researchers and religious leaders at its Bellagio Conference Center. Funding was received from The Global Health Council (Washington, D.C.) and the Catholic Medical Mission Board (New York). The authors — Mpoe Johannah Keikelame (MPhil, education support) is a lecturer on health promotion at the School of Public Health and Family Medicine, University of Cape Town (UCT). She has worked as a researcher with the UCT Centre for Gerontology, conducting qualitative research on elder abuse and older women as caregivers for children affected by HIV. Colleen K. Murphy (PGDip, epidemiology) has more than 10 years of experience in public health and infectious diseases research. Currently, she serves as the director of community education and outreach with the AIDS Research Alliance in Los Angeles. Previously, she worked with the International Medical Corps (a California-based international humanitarian organisation) and was a clinical research associate with Westat (Maryland). At the time of this study, she was a senior health researcher with the Global Health Council. She is also a reviewer with the Cochrane Infectious Diseases Group and is a strong proponent of evidencebased practice and policy. Karin Ringheim (MPH, PhD) is senior policy adviser for the Population Reference Bureau in Washington, D.C. She has 20 years of experience as a social scientist and public-health specialist with the World Health Organization (WHO), the U.S. Agency for International Development and PATH. She has provided technical assistance to research collaborators in more than 20 countries, concerning quantitative and qualitative research methods, evaluation, and the design of contraceptive acceptability studies. At the time of this study she was the director of research for the Global Health Council. Sara Woldehanna (MS, MAA) is an independent research and evaluation consultant. She has broad expertise in a variety of qualitative and quantitative research methodologies and research in multi-disciplinary settings. She currently works on the evaluation of projects implemented in developing countries in the areas of HIV/

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AIDS, malaria, and maternal and child health. During her tenure at the Global Health Council, she served as the principal investigator for the broader, multi-country FBO study from which this article has drawn.

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