Working with Gender, Culture and HIV in South Africa

People talking about AIDS Working with gender, culture and HIV in rural South Africa: Evaluation using stories of most significant change

Formative evaluation report of the Gender, Culture and HIV/AIDS Programme, North West Province, South Africa

p Inside cover caption: “School aged youth sixteen to seventeen participated in the discussions on youth sexual behaviour and HIV.” PHOTO CREDITS: ANDREA MAYER (top) TSHEPO SHOAI (bottom)

tt Front cover caption: The leader of the Diphiri, the custodians of the cemetery and community grave diggers, regards a condom with suspicion: “The sickness resides in these condoms. In that grease. This is what spreads the disease.”

PHOTO CREDIT: TSHEPO SHOAI

Compiled by Tracey Konstant for Oxfam America, Southern African Regional Office (SARO) In partnership with Pholo Modi wa Sechaba Bacha ba Kopane Botho Jwarone AIDS Consortium Sonke Gender Justice Lovelife and the Office of the Traditional Authority of Mabeskraal

Acknowledgements Oxfam America and the team of community-based organisations who present this report, would like to extend its appreciation to all those who continue to contribute to the Gender, Culture and HIV/AIDS Programme in North West Province.

The programme would not have been possible without the unstinting enthusiasm, support, approachability and engagement of Kgosi Mabe, King of the Bathlako ba Matutu nation. His leadership both of the Mabeskraal district, and of North West traditional authorities has been fundamental to the achievements of the programme.

The office of the Traditional Council in Mabeskraal is gratefully acknowledged for administrative support, space and facilities.

Particular appreciation is extended to Sammy Kgaswe, Traditional Councillor for Infrastructural Development, for his patient coordination and liaison.

To each other, the team behind this programme, our warmest appreciation. Appreciation is particularly expressed to Denise Hunt, Executive Director of AIDS Consortium, for unstinting support and commitment to the programme. Bafana Khumalo, CoDirector at Sonke Gender Justice is also thanked for his consistent interest and leadership. We extend heartfelt appreciation to Oxfam America's Southern African Regional Office, and especially to Marian Gotha for her energy, presence and great enthusiasm since the programme's inception.

Our appreciation also to Bridget Snell and Margaret Samuriwo for help in conceptualisation, design and ongoing mentorship. Our

thanks are also extended to Ian Mashingaidze, Regional Director of the Oxfam America Southern African Regional Office, for his support and encouragement.

Great gratitude is also expressed to Oxfam America for the funding which has made these efforts possible.

Thanks to Thapelo Rapoo of AIDS Consortium North West, for the personal investment of passion, coordination and management.

Thanks also to Bacha ba Kopane and Michael Modise for provision of working space, without which neither the programme nor the MSC research would have been possible.

Our warm acknowledgment goes out to the field team, for energy, passion and long hours: ! Andrea Mayer, AIDS Consortium, Gauteng ! Denise Anthony, AIDS Consortium, Gauteng ! Julia Nqandela, Lovelife, North West ! Lerato Mpatho, Bacha ba Kopane, Mabeskraal ! Lesedi Molebatsi, Pholo Modi wa Sechaba, Mabeskraal ! Mbuyiselo Botha, Sonke Gender Justice, Gauteng ! Michael Modise, Bacha ba Kopane, Mabeskraal ! Motshidisi Kgasoe, Botho Jwarona Home Based Care, Mabeskraal ! Niniwe Moilwe, Botho Jwarona Home Based Care, Mabeskraal ! Peter Matlakgomo, Pholo Modi wa Sechaba, Mabeskraal ! Sammy Kgaswe, Office of the Traditional Council, Mabeskraal ! Thapelo Rapoo, AIDS Consortium, North West ! Tshepo Shoai, Bacha ba Kopane ! Tumahole Wendy Mofokeng, AIDS Consortium, North West

Gender, Culture and HIV: Learning through evaluating Most Significant Change

Contents Introduction ..............................1 Context ......................................2 The programme ........................4 Most Significant Change .........5 The Stories Traditional leadership .................10 Personal experience, CBOs and behaviour....................................12 People are talking about HIV......15 Boswagadi: Interpretating HIV and new denials ................................18 High risk and strong spirits: The youth...........................................20

The coalition: Collective synergy ....................................24 Conclusions and Recommendations .................24

Acronyms Aids Consortium Acquired Immune Deficiency Syndrome Anti-retroviral treatment ARV Community-Based Organisation CBO 3 ‘Cs’ Car, Cash and Credit Cards DOTS Directly Observed Treatment Support (for TB) Faith-Based Organisation FBO Focus Group Discussion FGD Human Immunodeficiency Virus HIV HSRC Human Sciences Research Council of South Africa Most Significant Change MSC Non-Government Organisation NGO STD/STI Sexually Transmitted Disease/Infection Tuberculosis TB Voluntary Counselling and Testing VCT (for HIV) AC AIDS

Introduction Pain and loss have come to be synonymous with HIV and AIDS in South Africa. Treatment, recovery and triumph are less so. The vast majority of South Africans have personal experience of loss through HIV. Five million deaths cannot go unnoticed. In the past, much of that loss has been distorted in shame, stigma, denial, rejection of the ill and lies at funerals.

The epidemic penetrates society in many different ways. It connects death and loss with fear of contamination. It intersects with domestic violence, both as cause and effect. It confronts parents with realities, which only protecting their unborn child can make them face. It infuses a film of additional danger, and implications of love and trust into sexual exploration. Addressing HIV asks a lot of human relations.

At every one of these intersections, society faces the challenge of how best to intervene.

The Gender, Culture and HIV/AIDS programme brings a powerful collaborative approach to finding innovative solutions to the

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challenges of HIV and AIDS in North West Province. The programme is supporting traditional leadership and community based organizations directly engaged in finding community and culturally-based approaches to mitigating transmission and providing needed support to affected families. National-level NGO's work together within this South African region under a commonly held theory of change that promotes a strong gendered approach. Both women and men are engaged for their unique contributions to positive change.

With this report, the programme has sought to proactively identify changes in the community knowledge, attitudes and behaviors since the conceptualization of this work about two years ago. This loose coalition of partners is seeking to learn more fully about the perspectives of different segments of the community, so that a broader body of knowledge around gender, culture and HIV can be established.

The Most Significant Change (MSC) approach was identified as offering detailed, sensitive insight into the atmosphere around these issues. By hearing people's stories, the formative events that had brought them to this point and their personal views on the future, the team hoped to understand its impact. This approach to learning and evaluation has sought to fundamentally build the skills of the NGO field staff, CBO workers and members of the traditional community itself, to monitor changes in the community over time.

In the end, we hope that this report provides this coalition of partners and the community leadership with important insights into how change is happening and to stimulate a healthy critical debate about who is being reached, who has yet to be reached, and what can be done collectively to move this important change process forward towards a new period of treatment, recovery and triumph over AIDS. Bridget Snell, Organizational Learning and Knowledge Manager, Oxfam America

Context North West Province North West Province is predominantly rural with a spread of small urban centres and country towns. Some 30% of the province’s adult population is illiterate, and the female unemployment rate is above 50%.

In common with much of rural South Africa, poor education outcome, unemployment and lack of access to services combine to create an setting of pervasive poverty and limited progress.

Poverty and income disparity exacerbate social problems such as violence, crime and HIV infection. North West Province has an adult HIV prevalence rate of almost 18% (HSRC 2008). By 2000 AIDS was the leading cause of death in the province.

Mabeskraal, Bojanala District The village of Mabeskraal, also knows by its Tswana name, Thlakong, falls under Moses Kotane local municipality, in the Bojanala District of North West Province. While certain areas of Bojanala District benefit from royalties and modest profit share in mining rights in their areas, Mabeskraal is not home to mining activity. It has a less vibrant economy than elsewhere in Bojanala. Little employment is available within Mabeskraal, and most seek jobs in the nearby tourist theme park of Sun City, in mines, and in the town of Rustenburg.

Tswana traditional leadership The Bathlake Tribe over which Kgosi Mabe is King, falls under the 800-year-old kingdom of the Bafokeng. Known as the ‘People of the Dew’, the Bafokeng nation currently extends over 70 000 hectares. The kingdom is subdivided into 72 traditional dikgoro, each of which is regulated by a hereditary Dikgosana/Kgosi (tribal king) and Mmadikgosana/ Kgosigadi (king's wife). The wives of traditional leaders are important women, respected in their communities, and often influential in advising leaders.

The English title, ‘King’, is considered to be the most accurate interpretation of the position and role of “Kgosi” in Tswana society.

Kings, or Kgosi, manage Traditional Council offices. They form committees known as Lekgotla. The Lekgotla comprises elder men and women who advise the Kgosi, and are responsible for maintaining order in his jurisdiction.

Hereditary kings hold positions of exceptional power and authority, particularly in rural communities.

Their influence, public presence and the legitimacy of their voice in society is as ingrained as history itself.

Since colonial times laws have supported the historic governance and authority of traditional leaders.

South Africa has formal structures of traditional leadership, recognised through statutes such as the National House of Leaders Act (1998) and the Traditional Leadership Framework Act (2003). The Congress of Traditional Leaders of South Africa (Contralesa) was launched in September 1987 to articulate the interests of traditional leaders.

Contralesa is described as the ‘the sole and authentic representative of the progressive traditional leaders of South Africa’.

Kgosi Mabe Kgosi Mabe is also chairman of the North West Provincial House of Traditional Leaders, and serves in that capacity in the National House of Traditional Leaders. His influence therefore extends nationally, as well as into the various Traditional Councils of the province.

Among traditional leaders, there are those who acknowledge the cultural factors that affect gender equity, and the intertwined threads into vulnerability to HIV AIDS. Kgosi Mabe is one such leader.

His initiative and enthusiasm has warmly inspired the collaboration, which has been a source of rewarding community intervention and mutual learning.

Mabeskraal’s semi-rural landscape combines livestock, cattle, donkey and goats, with relatively high residential density. In this semi-arid bio-region, without irrigation, few people plant crops. Even kitchen gardens are scarce. Most houses are made from modern brick and plaster, and there is little evidence of the informal accommodation structures common in low income urban settings.

PHOTO CREDIT: ANDREA MAYER

Gender, Culture and HIV: Learning through evaluating Most Significant Change

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The Programme The Gender, Culture and HIV/AIDS Programme (the programme) has sought to engage with Traditional Leaders and Community-Based Organisations (CBOs), as the custodians of culture and the fabric of community level information and support. The programme was initiated in Mabeskraal, with the intention of rolling out lessons to other communities.

Under the leadership of Kgosi Mabe, and in partnership with CBOs of Mabeskraal, the programme aims to learn how traditional cultural practices can evolve positively. It seeks to build progressive tradition and constructive cultural practices that increase community resilience in the face of the AIDS epidemic.

Two national Non-Government Organisations (NGOs), each with a strong history of working in HIV and gender, leant their experience

as programme participants. Their contrasting roles and perspectives are key to the programme’s emphasis on gender and culture.

The AIDS Consortium (AC) is a membership-based network of CBOs. It provides training, information, access to resources and educational materials to its membership. With its original office in Gauteng, the AC has recently opened a branch in Rustenburg, North West, to permit greater access by the province’s rural CBOs. Although it offers services relevant to any form of HIV/AIDS support, most of its member organisations are lead by women, and provide home-based care or care for vulnerable children.

Sonke Gender Justice is primarily a men’s organisation, focusing broadly on progressive, constructive masculinity. It works beyond themes of HIV/AIDS, with an interest in holding leadership to

account for addressing gender inequity, and raising the consciousness of men around gender in South Africa. Together, the AC and Sonke offer the programme a multi-dimensional set of skills and influences.

Programme themes Encouragement of positive cultural practices by traditional institutions and leaders

The programme has endeavoured to cooperate with and support Kgosi Mabe in intensifying his communication campaign on gender and HIV. This has primarily entailed strategic, logistical and financial support to public communication events and celebrations.

The events to celebrate Fathers’ Day, for example, was lead by Kgosi Mabe and his wife, Kgosigadi Mabe. He and shared his views on gender and HIV with a large community gathering.

The ancestors’ water: a spring leading to underground water reservoir where people occasionally gather for ritual. It represented, for us, the immeasurable depth of tradition and culture into which the community of Mabekraal connects, available to be drawn on.

PHOTO CREDIT: ANDREA MAYER

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Capacity building of service providers

The AC is a capacity building membership collective of CBOs working with HIV. The programme has supported the establishment of the organisation’s North West Provincial branch.

CBOs in the area are offered organisational development training, a resource centre and regular networking meetings with other HIV/AIDS CBOs. The AC has also provided HIV and AIDS training to traditional leaders.

Sonke Gender Justice has been funded for outreach into Mabeskraal through which local CBOs have been mentored on gender awareness communication. Sonke has also been one of the key partners in Kgosi Mabe’s communication campaign.

Together, the engagement of these two national NGOs is intended to support capacity development of the various established local CBOs. Botho Jwarona and Bacha ba Kopane have been core Mabeskraal partners. Lovelife, the national youth HIV and lifeskills organisation, has also engaged as partner in many of the interventions.

A somewhat different programme stream involved one CBO from the neighbouring local municipality, Pholo Modi wa Sechaba, a facility for homebased care and support to vulnerable children. It received seed funding, capital equipment and advice in support of its sustainability model.

Development of coalitions to advocate for the fulfillment of the rights of communities

The programme has encouraged the building of partnerships between these NGOs and CBOs. The programme has anticipated that these relationships will expand and consolidate in time, towards establishment of a coalition of all local interest groups.

Learning and sharing of knowledge

The fourth major objective was the ongoing practice of action learning, sharing and evaluation.

Research, learning and reflection are vital for the continuous refinement of the programme’s strategy. In so doing, we also contribute to a body of documented experience on the intersection of traditional culture, gender and HIV/AIDS. The Most Significant Change evaluation The programme reached a major transition point in October 2009.

The founding organisation and primary funding agency, Oxfam America, closed its Southern African office. This required that the programme be reviewed and that relationships be defined and consolidated.

Two years have passed since the programme’s launch. The team was aware of some shifts in attitude and knowledge, and was confident in the influence of Kgosi Mabe. What was not known, however, was the extent to which community members of the area heard and acted on this communication. The team was interested in understanding early outcomes of its efforts, and potential impact going forward. A process was required that would

Gender, Culture and HIV: Learning through evaluating Most Significant Change

help in understanding the nature and reach of communication, its influence on behaviour and early indications of change. The process would also be asked to provide an opportunity to connect with the community, share learning and give feedback.

A communicative, participatory evaluation process was required.

The Most Significant Change (MSC) approach was identified as being most appropriate. The researchers would hear people’s stories, the formative events behind those stories, and their personal views on the future.

Members of participating organisations gathered to contribute to an intensive research and communication exercise in September 2009.

These were also the organisations that would be carrying forward the findings of the evaluation into the unfolding strategy of the programme’s next phase.

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The Most Significant Change Method Most Significant Change (MSC) is an approach to community action learning research and evaluation designed and pioneered by Rick Davies and Jessica Dart (Davies and Dart, 2005). MSC uses stories drawn from community members, and their own analysis of those stories, to identify changes that have been most significant, and the reason for their importance.

The method asks for stories of exceptions, as much as stories of the ordinary, in a bid to understand the range of dynamics and forces that underpin a community. As such, stories from individuals need not be generalisable to inspire a conversation that has meaning, depth and integrity.

One of the useful applications of MSC is where development practitioners seek to better understand the outcomes of their interventions, and the situation on which they are trying to assist.

Community clients are the essential source of our understanding of our role as development practitioners, in their lives. By setting aside our own

assumptions, and giving full attention and respect to the experiences of our clients, we see the local context through their eyes. This enables us to intervene with far more relevance and wisdom.

The Mabeskraal MSC process The purpose of the Mabeskraal MSC exercise was two-fold.

Firstly, to train these organisation members in the technique and skills of MSC research, in order that the programme would continue to benefit from this capacity.

Secondly, the practical component of the training was required to provide a research piece on early indications of significant change in the Mabeskraal programme, in order to steer its strategy in the next phase.

Preparation and sensitisation The endorsement and support of Kgosi Mabe and the office of the Traditional Council was absolutely essential to an effective evaluation. In addition to participating as a respondent, the

Kgosi lent his authority to sensitising the public to the upcoming intrusion, encouraging them to participate with openness.

The team A team was assembled. It comprised fifteen practitioners from six CBOs and NGOs working in Mabeskraal, along with a representative from the office of the Traditional Council.

Training Training comprised an initial class-based training experience, followed by two weeks of fieldwork, interspersed with regular reflection and analysis.

The process focused on a core selection of the steps adapted from the Davies and Dart (2005) technical guide to MSC: Step 1. Defining the domains of change Step 2. Collecting Significant Change stories Step 3. Selecting the most significant stories Step 4. Feeding back results of story selection Step 5. Verification of stories Step 6. Quantification Step 7. Revising the system: recommendations

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An old, hand-operated water pump in a grazing area of Mabeskraal provided a metaphor for most significant change.

PHOTO CREDIT: ANDREA MAYER

u Figure 1. The stepping stones: Guiding themes were identified which might guide researchers towards hearing a story of change within the broad realm of HIV in respect of gender, culture and communication Once identified, probing questions were used to populate the detail of the stories.

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Step 1. Defining the domains of change

Domains of change identify broad areas or issues at stake. They are not performance indicators, and should not be precisely defined.

By deliberately leaving them loose, the content can be defined by the respondents through their stories.

One approach is to provide extremely broad domains of change, such as ‘stories of significant change to do with HIV’.

In this case the process of defining finer domains of change is left to the analysis.

For the purposes of this study somewhat narrower domains of change were drawn out by the research team prior to the fieldwork. These domains of change then determined the ‘stepping stones’ of the research process (Figure 1).

Step 2. Collecting Most Significant Change stories

Interview skills Training was required to give critical practical experience in four key skills: # Listening

Tell us about yourself How are you affected by HIV?

Stepping stones

Organisations in Mabeskraal are all here to try to assist with these problems. I would like to hear a different kind of story now. In the last two years, is there a story of something changing around HIV.

# Probing # Note-taking # Intuiting the most significant change story from the less relevant parts of an interview.

Ongoing mentorship on interviewing skills continued through the fieldwork phase, and researchers’ confidence and ability improved greatly with practice.

Interview design The interview process was designed and role-played during training. Beginner researchers need to learn to resist the temptation to conduct a structured interview. This is crucial in applying a technique as subtle and responsive as MSC. We used the analogy of stepping stones to cross a river. The objective of finding and hearing a story of most significant change was equated to a gift on the other side of a stream. It may be possible to reach it in a single leap, or in one direct question. It is more likely, however, that several stepping stone question will be needed for a story to emerge.

nd er na me ch oth y a a w e ry. the ate to l a sto s a l l H n re ? Te e ed wom hang c anged i s has ch What ow the Kgo h d ? n u IV o ar bout H talks a What has changed around where you hear and talk about HIV? Othe r to do changes with H IV?

Once the gift is in reach, the stepping stone questions are no longer needed. The researcher then turns to probing, uncovering and detailing the story (Figure 1).

The other analogy we used was that of the water diviner. A water diviner uses a divining rod to test for water in different directions.

Once found, the divining process ends, and a well is dug to reach the water.

Once a story is detected the researcher must be perceptive enough to realise that water has been found, or the opposite bank is in reach. Probing is then necessary to discover all the detailed facets of the story of change, its chronology, supporting factors, and outcomes.

Despite these encouragements, the inclination of most of the team in their early interviews was to treat the stepping stones as a series of questions, moving on to the next question after generally superficial answers. This style of interview cannot achieve detailed or substantial stories of change.

With mentorship and iterative analysis of their own notes the

Change in keeping yourself safe from HIV infection?

Change in services?

What do you do to access these services?

Gender, Culture and HIV: Learning through evaluating Most Significant Change

Delve into the Story Why did this happen?

When?

What happened before?

What happened next?

What made it possible?

Story of change

What were the consequences?

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# What is its significance?

Rating for a story of change Most stories were presented as hand-written notes at the end of each day’s interviews. These were posted onto the walls of the workspace. The researchers were then tasked with rating each story out of a maximum of 3, for the extent to which it captures a story of significant change. The purpose of this exercise was to identify those stories that captured change in most detail, from the many stories collected during the interviews.

There was an important distinction to note at this point.

The rating process did not judge the significance of the change.

Instead, the narrative itself was rated in terms of whether the respondent had provided a story of significant change. Many interviewed were dominated by stories of life experiences or recommendations to various authorities, but without a description of a personally experienced significant change.

Each story was rated by at least three researchers, and the average rating was calculated.

The ratings were then used to select ten stories for analysis of most significant change.

Researchers’ focus groups of stories of MSC The first Focus Group Discussion (FGD) to analyse these stories comprised the researchers themselves. This was partly to train the group in facilitation of similar group discussions with community members; and partly to gain their analysis of the stories collected. They worked in two focus groups, on five different stories each. Their task was to

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read each of the stories to the group, and decide, with reason and in consensus, which described the most significant change.

Community Focus Group Discussions We then selected likely groups of community members to form focus groups. These included the Traditional Council, the police, a home-based care CBO, a group of primary school teachers and an after school youth group.

Very few of these focus groups actually produced the results that we had envisaged. Selecting one story for its supremacy, particularly if the process asks for consensus, was only achieved by one of the community FGDs. Even in the trained researcher groups, only one of the two groups had managed to identify a single story.

The significance of the stories was shared by the research team in analysis workshops. Emerging themes were mind-mapped. The interlinked issues, trends, connections and insights describe the significance of the changes and the conclusions of the research process.

Four major themes were identified: # The Kgosi’s communication campaign and youth sports # Personal change and CBO support as factors for behaviour change # Communication: people talking more about HIV # Culture and boswagadi: explanations for HIV # Youth, sexuality and HIV Step 4. Feeding back the results

A community feedback meeting, or imbizo, was called about a week after the fieldwork’s

completion. Around 50 invited participants arrived. Invitations were drafted to include all major community constituencies, including ward councillors, health and education departments, the faith-based sector and traditional healers. As host, the Traditional Council was well represented, although Kgosi Mabe, himself, was not available.

During the introductory remarks, the gender, culture and HIV programme was described; participating NGOs and CBOs were presented; and the MSC process outlined.

Four of the researchers then presented a story which epitomised each of four major areas of significant change.

Between each story, the audience was facilitated in contributing validation or contradictions to the story.

Debate was quite animated around several of the issues.

Interesting, unexpected and sometimes unrelated discussion paths transpired.

Finally, the audience was asked to select a single story that represented the most significant change. In the pattern typical of responses to this particular discussion from the outset. They compromised, declaring all the stories very significant.

Step 5. Verification of stories & Step 6. Quantification

The focus groups and imbizo were intended to provide community verification of the stories. This proved rather inconclusive, since opinion varied strongly between whether certain stories were valid or not.

Quantitative or triangulated

Four major themes were identified: # The Kgosi’s communication campaign and youth sports # Personal change and CBO support as factors for behaviour change # Communication: people talking more about HIV # Culture and boswagadi: explanations for HIV # Youth, sexuality and HIV Step 4. Feeding back the results

A community feedback meeting, or imbizo, was called about a week after the fieldwork’s completion. Around 50 invited participants arrived. Invitations were drafted to include all major community constituencies, including ward councillors, health and education departments, the faith-based sector and traditional healers. As host, the Traditional Council was well represented, although Kgosi Mabe, himself, was not available.

During the introductory remarks, the gender, culture and HIV programme was described; participating NGOs and CBOs were presented; and the MSC process outlined.

Four of the researchers then presented a story which epitomised each of four major areas of significant change.

Between each story, the audience was facilitated in contributing validation or contradictions to the story.

Debate was quite animated around several of the issues.

Interesting, unexpected and sometimes unrelated discussion paths transpired.

Finally, the audience was asked to select a single story that represented the most significant

change. In the pattern typical of responses to this particular discussion from the outset. They compromised, declaring all the stories very significant.

Step 5. Verification of stories & Step 6. Quantification

The focus groups and imbizo were intended to provide community verification of the stories. This proved rather inconclusive, since opinion varied strongly between whether certain stories were valid or not.

Quantitative or triangulated verification of the stories was not attempted during this research process. There are verification opportunities which the programme may choose to follow in the future.

Based purely on the interview and analysis processes, however, there is a strong sense of confidence in the guidance that this process has given to the programme going forward.

Step 7. Revising the system: recommendations

By refining the domains of change, the process informs the programme strategy. Iterative processes, such as this, are the essence of all formative evaluation. Through learning and realigning, the strategies, rationale and activities of the programme can evolve.

Evaluating the method Our experience has highlighted and affirmed Davies and Dart’s principle, that the iterative use of narrative methods provides owned, valid, credible and relevant insights into development processes and impacts. It demonstrates how community members, with minimal training, are able to collect and analyse data on changes within their own environment. With further training and experience, this could be a powerful methodology to put into the hands of field staff and community organisations.

Field researcher Lerato Mpatho of Bacha ba Kopane considers the content of interview notes in terms of stories of change, in order to rate them for inclusion in focus group analysis.

PHOTO CREDIT: ANDREA MAYER

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The Stories The story of Kgosi Mabe and the youth Interview with Kgosi Mabe.

One of the most powerful actions of the programme has been the use of events to give messages to the community. We have been talking about HIV in this community for several years. This programme uses many event days throughout the year to talk about HIV and related issues. Fathers Day, for example. We never used to take any notice of Fathers Day. But this year we had a big celebration, a lot of people came, and we were able to really talk about fathers in relation to families and HIV. After a few of these celebration days, the youth began to gather themselves into groups and to form clubs. They realised that in order to influence the future, they need to be organised themselves. When we talk at gatherings we don't talk about the past. We talk about the future. The youth see that the future is about them, and they engage because it is theirs to influence.

One such group launched a sports association in Mabeskraal. We now have a sports club of 700 members, playing in football and netball leagues. The youth come each Saturday for sport. They are occupied. They hear messages on lifeskills in general, and also HIV. Our intention is to dedicate one Saturday a month just to lifeskills education, as a condition of their membership of the sports club.

This is not the only example of youth coming together. There are many groups of young people, started through their own ideas. In the past youth hardly attended our public events, but now they are there in numbers.

The other change among youth is that in the past young women were very shy. Now, I have young women knocking on my door almost every day with ideas for activities. There was one recently where a group of young women asked for my advice and blessing for a campaign on HIV in a celebration of beauty.

Young women would never have been so proactive, or so bold, in the past.

One of the reasons for young women in particular beginning to be leaders, has been the stronger visibility and equality of women in the traditional leadership. In the past it was only men. We now have a woman Traditional Councillor. I have asked that our meetings are sometimes chaired by a woman. Here in the Traditional Council we have really moved ourselves towards much more equality. I no

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Traditional leadership

longer feel that gender imbalance is an issue in our office. We have lead by example.

I feel that it is the duty and the responsibility for a person in a position of power and leadership, such as a King, to use that power for the good of the community. I realised many years ago that HIV was an issue that had to be dealt with, and it is my responsibility to use the opportunity that my position gives me, to lead the people of Mabeskraal and give them the clear messages and information they need to fight the epidemic.

The role of CBOs and NGOs in the story of the youth and the King Some of the additional details of this process were provided by Bacha ba Kopane and Sonke Gender Justice, as partners to the Traditional Authority’s office in these events.

Sonke had approached the Chief as it began to build up a communication network on constructive masculinity. There conversations seemed to inspire the Kgosi to hold more frequent events, celebrating Fathers Day, and also supporting the Mmakgosi to hold a birthday celebration for him.

Oxfam America provided funding for the events.

Bacha ba Kopane is a CBO experienced in social mobilisation, and particularly in reaching out to youth. It contributed its efforts in coordination and logistics alongside the Traditional Council’s office.

Through this shared experience, Bacha ba Kopane formed a strong relationship with the Kgosi and was provided with premises. It also formed a mentorship relationship with Sonke, receiving advice and guidance which culminated in a three-year funding contract with the Department of Social Development.

The formation of the youth sports group was catalysed. In ongoing cooperation between the Traditional Council’s office and Bacha ba Kopane, youth meet every Saturday for soccer and netball. Interspersed through these gatherings, the public address system is used to good effect for messages to the 700 youth members on lifeskills education, encompassing health lifestyle, drug and alcohol advice and safe sex.

Gender, Culture and HIV: Learning through evaluating Most Significant Change

25 year old single male “I have attended a lot of events where Kgosi Mabe spoke about HIV/AIDS. He is trying very hard so that we as the youth should look after ourselves. He has introduced the league where we play sport. The youth benefits from these activities because we get trained and informed. We never had such activities in Mabeskraal before. Now, with such activities, we get information about HIV /AIDS while we are having fun. This is helping to reduce the number of young people loitering around and doing nothing. We do not have to hang around shebeens and drink alcohol.

I have learned to be more cautious and to take care of my life. I now look after myself and use protection always. I am grateful for what our leadership is doing. The presence of Kgosi Mabe at the games has made a difference. It is motivating people to participate. The youth is more serious about the games. They practice more often now. When we play there is more attendance. Before people did not attend as much, but since Kgosi Mabe comes to the games even older people come.”

Married man, aged 36 “I think men should attend the Kgosi’s imbizos, because he is not old-fashioned. They can relate to what he is saying” 43 year old male, employed at Traditional Council offices.

“Kgosi Mabe speaks positively now about HIV/AIDS. He encourages people to test regularly. He seems concerned about the community and how a lot of people are dying because of HIV/AIDS.” 45 year old male, health promoter “Bacha ba Kopane are doing well with their campaigns. They created sports for youth to get off the streets. They have spread their campaign of HIV/AIDS in schools and community this year. I would like to see the Ward Councillors more involved. The Kgosi is involved. He gave the NGOs a place where they can work.”

19 year old woman “I never heard Kgosi talking about HIV. There's no change. I hear same things all the time.”

18 year old woman “The Kgosi never talks about HIV/AIDS. He only talk about taverns.

Nothing has changed. HIV/AIDS increases every year.”

The significance of the story What were the key enabling factors to the positive significance of the story?

The authority of the Kgosi, his celebrity status and the seriousness with which he leads in the community, are illustrated by this story. It needs to be noted, however, that he is not a run-ofthe-mill King. As leader of the House of Traditional Leaders in North West Province, and longstanding HIV activist, his position is exceptional.

Another factor for success has been the Kgosi’s willingness to lead by example in addressing gender equity. His wife, the Kgosigadi, is given the space to take a visible, leading role in the public platform. Greater participation of women in the Traditional Council has been consciously facilitated by the Kgosi.

The King’s role in galvanising youth to participate in sport must be interpreted with a little circumspection. As the stories that follow illustrate, youth sexual behaviour and their participation in sport are not necessarily linked.

To what extent does the Kgosi have the ear of the youth?

It is difficult to say. From this study, it would appear that, as yet, not much.

The influence that the Kgosi has had, however, which has impacted on youth, has been his power to

authorise recreation activities in the community. He has provided staff and facilities, and endorse youth activities to funders and municipal budgets. In partnership with youth CBOs, this input has ensured their successful launch.

CBOs, NGOs and the Kgosi continue to grapple with the attitudes of youth.

Programme energy could well be more deeply invested in youth outreach by the Kgosi, with the application of his leadership and charisma specifically to this target audience. This needs to be coupled with ongoing evaluation, and the monitoring of youth reactions.

The implication of this for programme strategy suggest that, any intervention in a rural area should ensure that it builds strong relationships with Traditional Authorities. Where these are as receptive and enthusiastic as Kgosi Mabe, they constitute an exceptional opportunity for partnership.

“We are influenced most by those around us”

Around 700 youth participate in Saturday sport as players or spectators. The community sports, coordinated by the office of Kgosi Mabe and the CBO, Bacha ba Kopane, provide recreation and the opportunity for life skills communication.

PHOTO CREDIT: TSHEPO SHOAI

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Personal experience, CBOs and behaviour My journey with HIV Married woman, in her early forties I am a mother of three children. I have been married for 19 years and my husband is 10 years older than me. I got married when I was 22 years old. My children are 19, 13 and 3 years old. I love to see development in my life and the community that I live in. I talk openly to my children about issues of HIV and life in general.

My sister-in-law passed away in 2002 because of an AIDS-related illness. It was difficult to understand, but since we have lost four other family members because of AIDS. I joined Botho Jwarona home-based care for a short time as a volunteer. When the second family member was diagnosed with HIV, I spoke to my mother-in-law, to take him for testing at the clinic. I had noticed TB symptoms, because I was then working with patients at Botho Jwarona. In 2007 I was told by his sister that he was HIV positive. The problem is that he drinks a lot and is a chain smoker. As much as I have information about HIV, I am afraid to talk to him, because he hasn't disclosed his status to me. Also the challenge is that as an in-law you cannot talk about anything in the family. You will be perceived as knowing too much and being disrespectful.

In 2006 my sister's son passed way because of HIV/AIDS. He procrastinated to test until it was too late. Even though he knew that he was sick, he did not want to go test. He used make jokes about being positive and that he was dying, until he passed away.

In 2008 my sister-in-law passed away because of meningitis. She also refused to test. As

much as we were trying to encourage her, with her daughter, to get tested, she refused. This was very painful because we were losing a lot of our family members.

In 2007 and 2008 my younger sister-in-law’s boyfriends passed away. We suspected that it was AIDS because one of them was attending a support group near where I live. Then she called me to tell me she was sick. When I went to go see her, she had herpes. Knowing the symptoms I encouraged her to go to the clinic to get tested, but she refused. She is still alive and we are trying as a family to help her.

All these years I did not have the courage to test for HIV myself. I told myself that I was not at risk because I am married. But in 2006 when I was pregnant I gathered the courage to go for the test. I was ready for any results and I had prepared myself to use the information that I had to live positively. My results were negative and since then I have learnt to take care of my life.

In 2008 I attended a workshop that was hosted

by Sonke Gender Justice and Mbuyiselo taught us a lot about equality and our rights.

This workshop empowered me. It is always difficult for us as married women to insist that your husband should use condoms. They always feel as if you are having an affair or you don't trust them. Since I attended this workshop, I talk to my husband about us using condoms. My ‘No’ - is ‘No’. I do not compromise any more. I take my life seriously now.

I understand what it means that life begins at 40. All these years I lived to please my

husband, especially that he is older than me.

We married when I was still in school doing Grade 11. I fell pregnant and he refused to take me back to school. But now I have gathered the courage to live my life.

Our community of Mabeskraal is changing.

When the Makgosi hosted the Women's Day it was interesting. Even though there is still a lot that we need to do to educate the community we are going somewhere. The help that we are getting from organisations such as Aids Consortium and Sonke is making a big difference in our community. Our husbands still need to be educated about gender issues.”

Single woman, aged 26 “A friend of mine died two years ago. I used to visit her at her house while she was very sick and it touched me very deeply. After her death I told myself I will never sleep around. I even broke up with my boyfriend. But as you know, we can’t run away from sex for a long time or forever. I sat down with my man and talked about it, so we decided to use a condom all the time.”

Written by 17 year old girl, in high school group discussion “I have changed my attitude towards HIV/AIDS. A few years ago I had a sister. She was so beautiful and that made guys to fall for her. She was well known in our local tavern.

She went partying each and every week.

Sometimes she would go out Friday and come back Sunday. Without anyone knowing were she is and who she is with. Then a few months later she started to lose weight and my mother told her to visit the clinic but she never wanted to listen. After a year she got very sick. She finally went to the clinic to check herself and that's when she was given ARV. But she never drank them. After a week or so she committed suicide, and left a letter for both me and my mother. And after her death I promised myself that I want to go with my virginity to the grave.”

Young man, Mabeskraal PHOTO CREDIT: ANDREA MAYER

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The impact of CBOs, NGOs and FBOs 29 year old, CBO volunteer “I received so much care and support from Botho Jwarona’s support group, my family and the community. I have changed the ways to protect myself from getting reinfected by HIV by using condoms all the time when I have sex. I was also blessed with an HIV negative baby in 2008. My life has changed. I am a confident woman.”

42 year old divorced woman “I lived a double life for a long time. My husband used to beat me up every night. I made excuses for him, until I had a big reality check. I was diagnosed with STD. Botho Jwarona taught me about HIV, and I went for VCT. The results were negative. I divorced my husband. Today, my ex-husband is HIV positive.

I protect myself now by using condoms regularly with my new boyfriend. I sometimes try to abstain from sex. No-one should feel

obliged to have sex to please another person.

My motto now includes telling a man to get lost if he gets upset about using a condom. No rubber! No sex!”

32 years old, married, mother of 2 I know that Batho Jwarona has been effective in educating us as the community about HIV/AIDS. Since Ausi Motshidisi started working in our community of Mabeskraal people have become more open about HIV/AIDS. In the past when someone died of an AIDS-related illness people will hide it and make all sorts of excuses, like that the person was bewitched.

There is lady that I know who lived not so far from my house. She lived openly with her HIV status. She was part of the first people to be helped by Botho Jwarona. She motivated us as women to take charge of our lives and she spoke positively about HIV/AIDS. In the past I used to view HIV negatively, but

because of the information that I received from Ausi Motshidisi, I have learnt that HIV is just a chronic illness. I have learnt to accept people that are living with HIV/AIDS and I believe that you can live positively and longer with HIV. I am fortunate to have met Ausi Motshidisi, she has educated me a lot and I feel empowered as a women. Her bravery to speak openly about HIV/AIDS and domestic violence has given me the courage as a young woman to look after my life. Ausi Motshidisi did a lot of work to get Mabeskraal to where it is now. She helped us a lot to be informed.

Even though I don't attend events, I have heard Kgosi Mabe speak positively in the funerals about HIV/AIDS. He encourages people to look after themselves and the youth to pursue their future goals. Ausi Motshidisi had a lot to do with this because she was among the first people to engage Kgosi about these issues and make him realize the seriousness of this disease.

“Things are upside-down now the seriousness of the situation and the amount of loss is what is causing people to act” Health Educator

Condom wrapper and cider cap. The recreational choices of young people in poor settings are often limited to taverns, alcohol and other substances, and sex. Alcohol is associated with high risk sex: it increase the likelihood of casual sexual relations, and decreases the probability of safe sex.

PHOTO CREDIT: ANDREA MAYER

Gender, Culture and HIV: Learning through evaluating Most Significant Change

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The significance of the stories What were the enabling key factors to the positive significance of the story?

Behaviour change remains the most intractable challenge of the HIV/AIDS epidemic in South Africa. Persuading people to moderate their sexual risk behaviour is critical to prevention.

Key behaviours that need to change include: unprotected sex; sex with multiple concurrent partners; and age disparate sex for youth. Delaying sexual debut for youth is a secondary, but also valuable prevention strategy, based on the rationale that older youth are more likely to assert their sexual choices.

These stories provide two core intertwined threads in achieving behaviour change.

Pain, loss and trauma The first is the impact of painful, personal experiences of loss and fear. People are finally induced to confront their own social sexual norms when confronted with death or witnessing the traumatic process of losing loved ones to AIDS. Community support systems People in this study who changed their attitudes and behaviour often also spoke about being supported, informed and educated by a trusted source.

These educators were most often home-based care CBOs and their support groups, such as Botho Jwarona. In some cases the public health system of lay councillors and health promoters also provided this role.

That these organisations provide trusted, accurate, detailed information was certainly

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valuable. But the interaction is more intimate than facts and advice. Some of their power lies in the adage, “everybody knows Ausi Motshidisi”. The Director of Botho Jwarona, like the founder leaders of many community organisations, is a local institution in herself. The embrace of charismatic leaders creates a magnetic centre, that helps people recover and reshape their lives.

The implications for this programme and others? Home-based care CBOs and support groups meet the epidemic where it intersects with death, loss and illness.

Their role in this space has great power for change. People who have faced their nemesis, and been supported and inspired to conquer it, are ultimate ambassadors.

This study found that “we are most influenced by the ordinary people around us”. With inspiration and knowledge from CBOs, NGOs and health practitioners, ordinary people become extraordinary agents of change.

Volunteering: a mutual gift Working as a volunteer was transformative in several cases. It gave a sense of belonging and the power to act in situations of despair and hopelessness. This critical service provided by these organisations is one which is often dismissed or overlooked. The ethics of volunteerism in poor communities has been the subject of considerable debate.

What we see in these stories, however, are the considerable educational and psychological benefits of volunteering. The opportunity to volunteer builds confidence, embeds new knowledge, and creates a community of practice in new ways of thinking and behaving.

Supporting CBOs in recruiting and supporting volunteers is a valuable area of programme activity. These organisations are perfectly positioned to engage volunteers on their personal and career paths. To what extent does personal development of volunteers feature in development programmes?

To what extent do we monitor and evaluate achievements in transforming the lives of those who offer their services?

These are questions for programmes to consider and explore as opportunities for impact.

Where are the men?

Noticeable in these stories, is how the vast majority of the staff, volunteers and clients of these organisations are women. Where do men turn when they experience extremes of loss and fear? What happens to them there? Is behaviour change part of their likely future?

CBOs appear to reach men much less. Men are less likely to work as volunteers, more likely to be involved in the workplace, or actively seeking employment.

They tend to fall out of the potential catchment for community organisation activities.

Programmes need to continue to evolve approaches that reach men, supporting them in personal crises, and helping them to make informed behaviour choices.

“People still believe that men don’t cry” Priest

People are talking about HIV The Story of Hope 26 year old, single man.

“For me HIV/AIDS is a disease that we need to take seriously, it is affecting us as the community and many people are dying of HIV/AIDS related illnesses.

Since 2008 most people get information around HIV/AIDS. People are no longer as ignorant as they used to be. People are now talking openly about HIV, particularly around treatment and how one can live a healthy and longer life if they are on treatment.

Condoms are more available, but it looks like people are not using them. The condom dispensers are always full.

Guys in the shebeens are more aware about HIV and they are talking openly now about HIV/AIDS. They encourage each other to use protection. In the past people would just live recklessly and influence each other to sleep around. That has changed now and it looks like people are taking the issue of HIV/AIDS more seriously than they did in the past.

More people have become open about their HIV status. They are aware of the health issues and what diet they should be on.

People are no longer scared to go to the clinic to get treatment and ask for help. I see that now most people are willing to go for an HIV test, more than in the past. People no longer wait to get sick before they can be tested.

People are no longer ashamed to take treatment. There is more hope now than in the past when HIV/AIDS was viewed as a death sentence. People are no longer suicidal now, like they used to be.

I have seen a lot of change in our community, where people take their treatment and they live their lives as normal. Many people died in the past because of HIV/AIDS, but now we as young people are taking the issue very seriously. People now protect themselves when they are having sex, I spoke to two guys that I know and they told me that they have been in a situation where they were drunk and they did not have sex with the ladies that they were with, because they did not want to expose themselves to the risk of infection.

They waited until the morning when they were sober and aware of what they were doing, this tells me that people are now more aware.

I feel that 30% of men and women talk openly about HIV/AIDS, the rest only talk when they are fighting. Men still feel that they can't use condoms with their wives, even when they

have extra-marital affairs.You will hear them say that they own their wives. Most women still feel pressured to please their partners and they don't know their rights around condoms.

I am not sure how the Kgosi is handling the issue. I have not attended the events where Kgosi was talking.

I don't have sex without protection and I have also reduced the number of sexual partners that I have. I test regularly now for HIV and I don't take the issue for granted as I used to in the past. I have been fortunate not to be infected with HIV as some of the partners that I had confessed that they were HIV positive.

I feel that parents need to be educated about HIV/AIDS and the universal precautions, so that when they take care of their children and they also need to protect themselves.”

Group discussion at a tavern “We talk about AIDS with our kids almost everyday. I talk to my children. They know about HIV/AIDS, but still I always explain the dangers and they can protect themselves.”

Female health educator in her 40's “People are being reached with HIV/AIDS messages in different places. We are now welcomed in churches and schools to deliver messages about HIV/AIDS. This is because they can see the effect that our messages are having. We now offer more specific education about HIV/AIDS. We have one project with a group of older women (grandmothers) who are being taught about HIV/AIDS with the hope that they will pass that information along to the children and grandchildren they care for. I see this happening. Grandmothers are talking in more detail about sex.

Male traditional healer, early 70s.

“When patients come to me, I give them advice. If I suspect they are HIV positive I refer them to the clinic for VCT. I don’t give them traditional remedies if I suspect HIV. As president of the traditional healers group, I encourage other traditional healers to go for workshops where they will get training about how to address HIV. I think they need to be informed when it comes to HIV and not try to do their own thing. As a healer I want my patients to get better. If this means referring them, then I do so. I see other traditional healers becoming interested and attending workshops, although there are still some who are not interested and do not attend.”

Gender, Culture and HIV: Learning through evaluating Most Significant Change

48 year old male, single lay minister “We have more information about HIV/AIDS. We were empowered by Sonke Gender Justice, with a lovely workshop. They have the attitude of community, especially in church.

People talk about sex life in church these days. People are now well-informed. There are few who are hiding those who are sick.

The Kgosi has helped by calling these professional people to give pastors information and skills about HIV/AIDS.” Pastor “I teach a lot in the community about HIV/AIDS, and I never finish a sermon without talking about HIV/AIDS. My bishop taught me to talk a lot about it in our churches.”

Male pastor, 70s.

“People have knowledge about HIV, but they don't believe. If someone protects herself from bad things she will be saved. It seems if you tell youth about how we used to behave ourselves back in the days, they tell us that this is a new era. We have to respect the Lord because our body is the temple of God. Only married couples should have sexual intercourse because according to the bible ‘no sex before marriage’. Therefore married couples are the one who should encounter problems. The word of God is the only powerful tool to fight HIV/AIDS”

“Women are talking about it at church meetings on Thursdays and Tuesdays, and at societies”

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The significance of the story There seems to be a broad consensus that HIV is more openly discussed than in the past.

We see formal communication from CBOs, NGOs, government, the media, health professionals, schools, traditional leadership, religious leaders and traditional healers.

There were, however, some exceptions to this observation. A few respondents, although initially happy to be interviewed, later withdrew their consent when they realised the conversation was about HIV. School age youth also commented that while they discuss HIV a lot, they only do so when they are sober, and only at school.

Despite these qualifications it would be safe to say that communication on HIV is finding target audiences. So far, it seems to have had two main impacts.

Firstly, stigma, embarrassment and the practice of literally locking away the dying, seems to have reduced. Although individuals still deny the possibility of infection, and resist testing, HIV is acknowledged.

Secondly, health professionals and respondents talk about an increase in health-seeking behaviour. Many of the interviews related instances of more people testing. With VCT having been long recognised as the entry point to the health system. This is encouraging.

Perhaps not dissimilar to observations on behaviour change, communication seems to be reaching a critical mass. The visible presence of AIDS, along with the persistent and intensive dissemination of messages, is saturating the community.

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To what extent does this impact on behaviour? It seems to have impacted on how people communicate about behaviour, and what their spoken intentions are. Whether it impacts on what happens in the privacy of their lives can only be seen in changes in prevalence.

This encourages HIV programmes to continue to communicate in every conceivable setting.

The faith-based sector One of the most powerful settings in Mabeskraal has been the churches, although these tend to preach a philosophy of abstinence and faithfulness, and sometimes discourage condom use.

Increased engagement of faith-based leadership, including opportunities for them to reflect on the realities of sexual behaviour in their congregations, would be valuable.

Men The programme also needs to consider optimal strategies for communicating with men. We know that men communicate and hear about HIV in taverns, the workplace and in imbizos. The field team observed that conversations with men in public places were lively, and attracted a different audience from those they generally host in the formal settings of the Traditional Authority office. Even as the fieldwork came to an end Sonke and Bacha ba Kopane were talking about an outreach campaign aimed at men in taverns.

Participatory discussions in taverns, rather than a repetition of HIV messaging, are an avenue for communication which could be better exploited by the Mabeskraal programme. This would require engaging tavern owners and ensuring that the style of communication did not impact negatively on their businesses.

The other opportunity which this programme has neglected to date has been workplace outreach. The programme might consider expanding the circle of organisation partners in Mabeskraal to include experts in workplace-based HIV responses

Action research Occasional MSC surveys will be useful in gauging the most effective styles, locations and content of communication, and understanding gaps that inform evolving strategy.

Health seeking behaviour and prevention were said to be on the increase. This could be tested quantitatively through collaboration between the programme and the local health centre in sharing of relevant statistics on VCT and local HIV prevalence.

Communication Communication needs to be conducted with a good measure of faith, and a lot of perseverance. Innovative, opportunistic and responsive communication should continue to form the strategic core of the culture, gender and HIV programme.

Changes in health seeking behaviour Lay councillor at the health facility “The organisations, Bacha ba Kopane and Botho Jwarona, do significant work. They often come to the clinic for advice, and refer most of their clients. They give health talks.

If one person in a couple tests and is asked to bring their partner, they do bring them, even though they don’t always follow up.

Some come for treatment, although adherence is very poor.”

HIV and AIDS Councillor at the health facility “There is an NGO called ‘That’s it’ which conducts adherence classes locally for people who are HIV positive and would like to take ARVs. In the past people had to travel long distances and had to pay a lot of money for transport to attend such classes. Many people, even those who are HIV negative attend these classes to get information.

Health promoters hold health talks every morning to encourage STI patients to test for HIV. Many are coming for testing. Old people also go for testing.”

Female health educator in her early 40s.

“I see a decrease in the amount of HIV and pregnancy in teenagers. I feel that this is because we are reaching more people in more, different places. This is leading to more people accessing services such as VCT and ART. Better services are now available, such as the mobile unit that assists with TB and HIV/AIDS. It goes into areas that are far from the clinic to be sure the people there are receiving services. The clinic works together with NGO's to coordinate and improve service delivery.”

Single woman, 37 years “I am living with HIV. Changes: There is distribution of food parcels and boosters to the infected. They do DOTS support for TB patients. Support groups are formed. Some people are recovering. I am using condoms, even if I am already HIV positive.”

Stories of no change or no communication 42 year old woman “I like sitting at home. I have never seen or heard people talking about HIV. I did not go to the imbizo. I have not heard about organisations in Mabeskraal or their services.”

47 year old single woman, 4 children and 2 grandchildren “We all have HIV/AIDS. We are going to die. I do not see any change. We are infected.

There are no jobs, so we used to have many boyfriends, so that we could get food.

Sometimes I use a condom. There is no change. We are dying. Every week youth and young women are buried. I have never heard the Kgosi talking about HIV/AIDS. They have many parties there for themselves. At least the children know something about HIV.” 48 year old married woman “My brother died of AIDS. There are awareness programmes. Orphans and vulnerable children are given school uniform and food parcels. There is education at

school for children. But there is no change because married couples do not protect themselves. There is a high rate of death and high rate of orphans.”

Young man “In my section there are a lot of young people who are HIV positive and many die. If you could come there during weekends, there will be funerals of young people who died of AIDS. I have friends who are HIV positive.

Most of my friends are sick. They are in denial. They lie about their sickness, they'll say its TB. They don't care about their health.

They drink too much alcohol and smoke. I advise them to stop this behavior because they are sick. They say there is no hope, they are going to die anyway.” (When spoke like this we could see the pain in his eyes, he started to be emotional) Three respondents, aged 56-67 “I have heard a lot about HIV/AIDS but I don't understand. I hear people talking but I still don't understand.”

Young men: young adults are identified as a group

most vulnerable to HIV, and least accessible by services providers.

PHOTO CREDIT: ANDREA MAYER

Gender, Culture and HIV: Learning through evaluating Most Significant Change

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‘Boswagadi’ : interpreting AIDS in new denials Boswagadi Taxi driver “This is a problem from long ago. It is a disease from not being cleansed after your partner passes on.”

Elderly man. The head of the Diphiri or grave diggers (a group steeped in culture as custodians of spiritual rites around care of cemeteries and correct burial of the dead).

“HIV is boswagadi. It is a disease caused by people not mourning to honour the deaths of their loved ones or partners. It is the fault of the Pentecostal Christian Churches who do not honour culture. They encourage widows and widowers to go on with their lives just after their partner’s death. The Kgosi should call an imbizo to stop these churches from disrespecting culture and ensuring that deaths from boswagadi are reduced. ...

After having buried so many young people, I have decided to stay single for the rest of my life. Young people are after money and never disclose their health status. I would never use a condom. The sickness resides in these condoms. In that grease. This is what spreads the disease.”

Group discussion at a tavern “All of us, the elderly and young, we don't want to use condoms. We say it is madness. So we increase the rate of infection. We want to feel the flesh.

There is a difference between boswagadi and HIV, because AIDS kills whereas boswagadi is curable. We don't love our bodies. A person who has lost her partner must mourn and drink herbs for a period of time.”

Single woman, 39.

“People don't follow culture any more, like mourning for their partners.

Traditionally we think that if you don't mourn you pass on that bollo. That is why there so many young people in our country who are HIV positive.”

Heated exchange at the Imbizo Male traditional healer in his late 60s “Boswgadi and HIV are not the same.

Boswagadi is part of us. It has always been there. It is part of our culture. It is in our blood.

It is caused when two people are together and one dies. It is caused by someone having sex, whose partner has passed away, and they have not then taken the correct medication.

With Boswagadi you swell up, your stomach swells and there are sounds inside you, and then your whole body swells. The person must go to the traditional healer and get medicine. If you do not treat Boswagadi, you will die.

But it is not like HIV. For example, a pregnant woman with Boswagadi cannot pass it on to her child. Also, people can be saved from Boswagadi, but HIV cannot be cured.”

Female religious leader, early 60s “Witchdoctors are against God. Boswagadi cannot touch you if you are a believer. My husband died in 1997, and I am here. I am OK. It is through God and Jesus Christ that I am here, and all can be saved ... ”

The significance of the story Culture is alive and well, and in conflict, in Mabeskraal. It is not expressed in the ways we had predicted in conceiving the programme or the MSC research.

There was no mention of bride price or of the customs around property at the death of a family member. There was some mention of emerging women’s empowerment and its impact of family dynamics. The one cultural theme that was raised on several occasions among older people, was boswagadi.

It is an ancient disease, treatable only with traditional medicine.

Some believed that HIV and boswagadi were one and the same disease, thereby denying the existence of HIV. Others, notably the traditional practitioners, considered them different.

Still others, the faith-based contingent, denied the existence of boswagadi.

The debate was intense. It was rooted not as much in the medical technicalities of diseases, as in fundamental beliefs around religion and tradition.

Traditional healer and a leader in the traditional healers association. Traditional healers are well respected in Mabeskraal, and are knowledgeable on both HIV and boswagadi.

PHOTO CREDIT: ANDREA MAYER

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The custodians of traditional culture who were most informed on boswagadi where the diphiri and the traditional healers. The diphiri are a slightly mystically imbued group of elder men, who dig the graves and oversee the cemetery. The diphiri’s story attributed HIV to boswagadi as far as possible, although his apparent conviction tended to fall into contradiction as the conversation continued.

The traditional healer we interviewed, who also attended the imbizo, was well-educated on HIV. He had positive professional relationships with regular referrals into the formal health system. He also firmly grasped the rights and wrongs of his own realm: that of culture, ritual and herbal medicines. The traditional healer regarded HIV as a disease, not particularly associated with culture. As part of his service as healer, he addressed as best he saw fit, through referral to formal public health care.

The faith-based leadership was providing the community with an incompatible alternative to this form of culture: that of faith and worship of the Christian God.

Their package tended to be more focused on morality and divine intervention than medicine, with prevention messaging around abstinence and faithfulness.

There is little doubt that this debate rages beyond the realm of HIV and sexuality, and into every facet of society. It may also be overlaid with gender tension: the predominantly male custodians of tradition and history, toe-to-toe with the purveyors of religion and modernity, who are dominated by male leadership but with a majority female following.

For the programme, the camps need to be acknowledged. HIV programmes risk being seen to represent one of the philosophies, thereby alienating the other.

We hear that the great majority, some say 70%, of South Africans approach traditional healers before approaching the public health service. We also know that a

similar proportion of people attend churches regularly. These two institutions are far more popular than health facilities, CBO support groups or public imbizos.

The traditional header in this study helped to pave the way to a separate position for HIV. HIV is not part of culture or tradition. It is a disease of the last 30 years, described by science. A medical condition which needs appropriate prevention and treatment.

Neither, says accepted HIV communication, is HIV part of religion. HIV and morality need to be distinct conversations, for honesty and openness to be possible.

Religious leadership has yet to wrestle with the challenge of finding compatible messages that encourage behaviour that aligns with Christian belief systems, but still acknowledges humanity, reality and the value of condoms.

Both groups have a captive audience. Both need to be engaged by HIV programmes, although this research would suggest that it might be wise to keep them separate.

Each needs mentorship and information to reflect on its specific role in the epidemic.

Deep divisions occasionally spill into conflict between the custodians of Tswana history, and the religious leaders of Christian churches in Mabeskraal.

PHOTO CREDIT: ANDREA MAYER

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High risk and strong spirits: the youth Group discussion at Rakgogo High Youth risk behaviour “We socialise in taverns, house parties and in the mall in town. We drink alcohol like beer and cider. Boys perform a poem to impress the girls. It depends on how he’s looking and acting. Girls prefer the three Cs - cash, car and credit cards. They easily get drinks for free, and then join the boys at their table, and then they go home with them.

Sometimes we have sex with them. After the influence of alcohol we just lose control. Other times we feel the boys and we also get horny.”

What about one night stands?

Some girls say there is a good chance. “You feel you owe a boy if he has spent a lot on you.”

The boys called this “an exchange of assets”.

Others don’t have sex unless they know the guy.

Do you talk about HIV in the tavern?

“No, not at all. We only think and talk about it when we are sober.”

“The boys don’t care”, said the girls.

“We talk about HIV at school and church, our mothers talk about it, and we talk about it when someone we know has it.”

Stories as written by youth in the high school group discussion 16 year old boy “I have seen some people sleeping around.

Maybe two to three boys on a one girl. My friend’s sister is one of them doing this. She is still at school, but on Friday her boyfriend comes and takes her, and on Sunday he brings her back. Some girls are doing this thing in the morning and in the evening. They go to the tavern. I think that I must be careful with girls that are sleeping around.”

16 year old girl “I was at the tavern with the girls. I drank too much. As I stood up going to buy beers, I met this guy. So handsome. Of my height. He greets me as I also do, and I get charm the minute I see that guy and I fell for him. He came to us and ask me if we can go to the car.

That's where I had sex with that guy. So in the

morning I was frustrated. I had many questions about last night. I started to take HIV into consideration.”

16 year old girl “HIV is a dangerous thing. Some people don't take it seriously. They think that it just a flu season, it will just pass and go. Many boys like to have sex without a condom. They say that protected sex it is not good. They want to have unprotected sex. They say they eat flesh.”

17 year old boy “Lovelife told us about HIV/AIDS. We talked about AIDS, and I know about AIDS. I don't have to be with more than two girls. People need to be aware of HIV/AIDS.” 16 year old girl “Girls sleep around in order to get money.

Most of them are in competition with their friends around who has the richer boyfriend and what type of car their man is driving.”

16 year old boy “We go to the bush every month or even week.

We end up having unprotected sex mostly. So that is when we get HIV. Many youngsters think is good having sex at a young age, because there is this girl who told us if you haven't had sex at the age of 16 you are an idiot.”

16 year old boy “Today's youth sleeps around more. They are not scared of having unprotected sex. They have this thing of ‘I don't care’ attitude in their minds.”

17 year old girl “We see people are dying and most of them are teenagers. I think this is because at our age we go to the taverns. Obviously when we are in the taverns, we are going to meet some boys there, joining us. Then we drink beer, enjoying, so that we forget that when you are drunk you lose control, and there is a possibility that boys can sleep with you without using protection, and you can become pregnant without knowing who is your child’s father. And on top of that you are HIV positive.”

16 year old girl “I think most people who get infected at an early age are careless. They sleep around knowing that if they get infected they'll take the

ARV's and get the social grants. They don't have stress if they get infected.”

Adults talking about youth Tavern group discussion “The relationship of parents and children is torn apart with the so-called rights. The rights have corrupted the youth’s minds. They don't take responsibilities of their actions, especially when their fathers try to talk to them. Their mothers stand up for them. You might find a mother giving her daughter the key so that if she comes home late, she can open on her own, and sleep without saying anything. That's why kids are uncontrollable. HIV spreads more on youth.

Women sometimes want to control the men, since this thing of gender equity. She will tell you ‘stop abusing my children’ when you try to discipline them, not physically, but by talking to them. Both parents must be more involved in raising kids.”

32 year old female, married “Since 2008 I have observed that the rate of HIV is going up among young people, particularly young women. Even though these kids learn about HIV at school as part of their life-orientation classes, they still get infected.

Many of these young girls have become materialistic. They date older guys who do not care about their health and future, but are only interested in using them for sexual pleasures.

One-night stands are more prevalent among young people these days. A lot of kids feel they have rights. But they don't understand the responsibility that comes with these rights.

They are having sex recklessly. A lot of kids that were born in 1992 have children. I see them when they come to apply for grants; they have to come to my office to make copies.

Many of them fell pregnant as a result of peer pressure. I spoke to one of the girls who was here to register for a grant and asked her why she fell pregnant. She told me that she wanted a baby because she wanted to please her man. She was in grade 9 and she dropped out of school to look after her baby. This shows that young people are not taking the issue of HIV seriously.”

“When we talk at gatherings we don't talk about the past. We talk about the future. The youth see that the future is about them, and they engage because it is theirs to influence” Kgosi Mabe 19

Young, free and sexually precocious? The youth of Mabeskraal have a reputation that scandalises each other and older generations. While early sexual debut, age-disparate relationships and a passion for cash, cars and credit cards attract some youth, many prefer to remain as onlookers.

PHOTO CREDIT: TSHEPO SHOAI

In a group of 25 high school youth, 3 stated that they would be likely to use a condoms if they had sex after drinking alcohol.

Figure 4. HIV prevalence by age. Prevalence among women increases from 6.7% to 32.7% during their 20s. Prevalence for men, increases from 2.5% by the age of 19, to 25.8% by their mid30s.

45 40

32.7

HIV Prevalence (%)

35

25.8

28.1 Males 24.8

30 18.6

21.1

25

15.7

19.2 18.3

20

14.1 10.4 10.2

15

8.4

10 2.5 5 0

Females

3.0

6.7

6.2

7.7

5.1

3.5 1.8

2.0

2-14

15-19

20-24

25-29

30-34

35-39

40-44

45-49

50-54

55-59

60+

Age group (years)

Gender, Culture and HIV: Learning through evaluating Most Significant Change

20

21

These stories show us how far from homogenous youth are in their attitudes and interests. The one conclusion around which the stories do broadly align, is that young people are knowledgeable on HIV. Group discussions celebrate the fashionable view of youth being rebellious, free and sexuality precocious. This was not borne out, however, by their individual, personal sentiments.

In the private forum of written, anonymous story sharing, youth’s responses varied. Many individual views expressed righteous indignation at the bad behaviour of others. Many generalised about ‘the youth’, leaving only a few to be the youth of whom they spoke.

Some of the stories were vested in Christianity; others in caution and sensibleness; a few in tales of sexual exploits. Only a small number of the stories suggested multiple partners or particularly active sex lives.

This study seems to bear out the HSRC data, showing incidence of HIV in the under 19 age group to have approximately halved between 2005 and 2008 (HSRC, 2008). The impact of communication seems to be bearing fruit.

The school curriculum, LoveLife’s work and activities such as the sports and recreation programme, may gradually be impacting on early sexual debut. This is work that will no doubt continue, and programming should sustain it, and expand it.

If these stories are credible, it is a highly visible few for whom cars, status, sex and alcohol are desirable and achievable as lifestyle, image and status. For a 17 year old school girl, these are all associated with men some years older than they are.

In situations of extreme poverty, the commercialisation of sex for young girls, or the ‘sugar daddy syndrome’, is assumed to relate to food security and to be tacitly

30.8%

Figure 5 . Almost 31% of men and boys between 15 and 24 have multiple, concurrent partners. At all ages, approximately 5 times more men have more than one partner, than women in the same age range.

Adapted from HSRC (2008)

More than one sexual partner (%)

Also from stories written by scholars in the Rakgogo High School discussion group 17 year old girl “HIV has changed my life totally. Without it, I would be engaged in many things like drinking alcohol, taking drugs. When a guy comes to me, I always think about the results of falling in love with him. Perhaps he wants to sleep with me and after go and tell his friends that he has had sex with me, then even they can come to me. So now I have made the decision that I'm going to protect myself as much as I can because with HIV, there is no going back. Now I have decided not to sleep with anybody or fall in love, until I'm responsible.”

17 year old girl “The true love I have for myself makes me abstain and keep my purity. It starts from within. Also because I love God so much that I don't want him crying for me. Only if we believe and respect God that's the only way we can wipe the disease of my freedom away.”

17 year old boy “I am a Christian and I believe in no sex before marriage. As a Christian I don't go to taverns. I love going to church and I have nothing to do with AIDS. Am a guy.”

17 year old girl “A month ago I was catching up with my friends. We go to tavern, so when we arrive at the tavern, we drink some ciders. So after drinking some boys came to ask us that they love us. We agree with them. The boy I was with asks me to sleep with him. So I refused to sleep with him, because I know that nowadays the things are changed. I was thinking that maybe this guy is HIV positive. And I know about HIV/AIDS, that is why I refused. I could not do that, because everywhere people are talking about HIV.” 18 year old girl “I have a boyfriend who is 22 years old. I am faithful to him and I have committed myself to him. Due to what I have planned in my life, I have never had sex before, in other words I abstain. Many people are dying out there.”

16 year old girl “I have a boyfriend, and I love him because he is my first boyfriend. We have been together since 2005. I love him because he does not love ladies. I don't love sex, I love a kiss. He broke my virginity in 2008 and we were using a condom. It once happened that the condom broke, but I trust him and do not think he cheats on me, because I also do not cheat.”

14.8%

6.0% 3.0%

3.7% 0.8%

Male

Female

15-24 years

Male

Female

25-49 years

Male

Female

>50 years

encouraged by families. This study, however, shows a far more consensual arrangement, the attraction of which lies in the three ‘Cs’ and the conquest of free drinks.

The HIV conversation is well-saturated with information on the risks of unprotected sex, and should continue to be. Youth have the facts. Programmes for school aged youth now need to try to also embrace the behaviour of the most-at-risk minority: perhaps 10%, increasing to 20% as the teen year progress.

The most worldly of youth need to be persuaded to recraft for themselves what constitutes image and status. These are also the youth are least likely to participate in Saturday sport, and even less likely to be receptive to school-based programmes.

Few constructive suggestions emerged from the research. Serious engagement of these natural leaders might be appropriate. A voice in local politics, perhaps. Workplace exchanges, and opportunities for contact with older young adults around interests other than sex and recreation, might provide a personal development and self-expression avenue for some.

HSRC’s national statistics (Figures 4 and 5) tell us that by the age of 19, 2.5% of boys, and 6.7% of girls are HIV positive. By the age the age of 30, prevalence among women has reached 33%.

For men, the peak in prevalence is seen around age 35. The exponential increase in HIV prevalence in women is seen between the ages of 20 and 30.

Out-of-school youth would seem to be the group now most vulnerable to HIV. This target group seems to be among the least effectively addressed.

This research did not provide concrete solutions to engaging out-of-school youth.

More innovative strategy, fresh partnerships, and reflection on the needs and opportunities with this target group and clearly called for.

Young adults: the window into a bigger picture What happens for most people when they leaves school in South Africa? And what does this say about society? The vulnerability of young adults lies firmly entrenched in the challenges of unemployment, under-education and economic inequity that plague South Africa. They fall abruptly out of contact with any formal structure, as they find themselves struggling for integration into the economy.

The conversation takes us to the factors that cause HIV vulnerability. HIV is a social phenomenon with health implications. It affect the poorest and most marginalised at the greatest scale and with the most impact. The epidemic is integral to the deeper social challenges of this country.

South Africa has among the worst extremes of inequality in distribution of wealth in the world.

This is mirrored in the skewed distribution of access and quality of all public services, but perhaps most of all of education and health care. The tragic irony is that vast unemployment and insufficient skills and education, lie alongside potential for a much more vibrant economy in a crisis of skills shortage. We would wish to see young adults in training, tertiary education and entry level employment opportunities.

Besides the right to participate in a productive society, these are also the contact points necessary to talk about HIV. More importantly, they are the source of an economic and social sense of worth that defies the death wish of high risk sexual behaviour.

HIV programming needs to acknowledge its role in addressing the causes of HIV, not only in terms of behaviour and infection, but also the socio-economic tensions that underpin the scale of the epidemic. To the extent that HIV programmes cushion the impact of an unjust society, they become implicated in its perpetuation.

High school youth participated with energy and enthusiasm in story wrting and focus group discussions. Their conversation tells us that they are well knowledgeable and aware of HIV PHOTO CREDITS: ANDREA MAYER

Gender, Culture and HIV: Learning through evaluating Most Significant Change

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The coalition: collective synergy Botho Jwarona “I was feeling close to burnout. But through the support of this MSC process I have come back. In six months we can change Mabeskraal. We will be talking more about HIV.” “I feel empowered by having people from outside coming in to talk here.”

“We were affiliates of the AIDS Consortium long before they came to North West. The opening of the Rustenburg office has helped us a lot. They are much more accessible now.

We appreciate the access to information. The training in financial management was very useful. They introduced us to Oxfam America.”

“Sonke really helped us with HIV. It takes men to talk to other men.”

“Government is alone. They don’t work with NGOs. What is local government doing? They have a portfolio to fulfill.”

Bacha ba Kopane “We partner for events only. We have a system for planning meetings. Responsibilities for catering, mobilisation and venue preparation are shared out. This event planning committee works well. AIDS Consortium should also use this system when it leads the planning of events in Mabeskraal. We all have expertise to bring.”

“Our relationship with AIDS Consortium goes beyond events. We enjoy having access to the Information and Education Communication (IEC) materials that they provide. We have participated in several of their training courses, and these have helped us to run smoothly.”

“The relationship with the AC is generally good, although they sometimes do not consult well and want to bully us. They sometimes favour only some members.”

“We appreciate the Traditional Council’s office a lot. They have given us a new building, and they provide us with photocopying and administrative support. Kgosi Mabe himself sees us as partners.”

Mabeskraal CBO trainer facilitates an education session on substance abuse and sexual risk behaviour PHOTO CREDIT: TSHEPO SHOAI

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“We sometimes struggle with others in the office who want to dominate us. They give us work that they have already decided on their own. Sometimes we feel that they see us as their manpower, but not as true partners.”

“Under Mbuyiselo, our relationship with Sonke is excellent. They empower us, and give us knowledge. They helped us a lot in preparing our proposal for Social Development, and we won funding for three years. They are always motivating and supportive. They treat us as equals.”

“We experience frustration with some of the other organisations. We are the ones who organise functions and put a lot of work into social mobilisation. Then they come along and put their branding everywhere. Our work is then invisible to the public. We feel that they hijack our efforts and promote their brands.

They benefit from us, but we don't benefit from them. We need to define our own branding strategy, but we are worried about the cost of this.”

The significance of the stories from local CBOs Mabeskraal seems to be somewhat divided, divisions that probably pre-date the programme.

Botho Jwarona works with homebased care and vulnerable children. It is lead by mature women, and provides shelter and support to clients, volunteers and members. It asks for maturity and calm. Botho Jwarona seems to be particularly close to AIDS Consortium, with a long history of membership. Sonke has also built strong relationships with the organisation, and is well-liked and trusted.

Bacha ba Kopane works with youth, and particularly with issues around substances abuse. It is lead by young men, some of whom have substance abuse issues of their own. It is staffed by a gender balanced, energetic, passionate group of young people. It asks for action and recognition. This organisation partners most closely with the Traditional Council’s office. It enjoys ambitious and highly visible activities. It also seems to be particularly close to Sonke around shared professional

interest in men’s issues. Bacha ba Kopane’s relationship with Sonke’s has been deeply mutually satisfying. Its relationship with AIDS Consortium is established and relatively professionally managed, although it lacks particular mutual warmth.

While they might live in friction and occasional conflict, Botho Jwarone and Bacha ba Kopane have great respect and affection for each other, and each is indispensable to a holistic view of community. In working with culture, gender and HIV, we could not have asked for a more appropriately different pair of local organisations.

These differences, between just only local CBOs, highlight the risks of attempting to force formality and conformity into partnerships. A formal coalition might seem desirable, but may offer as much risk as it does returns.

Before creating structures, the programme could further invest in stronger relationships, that function well, and

facilitating partnerships to a common cause. This might be served best by continuing to grow from these spontaneous and informal starting points.

CBOs are shown to have substantial impact as strong threads in the social fabric of a community. Locally led partnerships which treat implementing agencies, such as Botho Jwarona and Bacha ba Kopane, as powerful, well-guided leaders are fundamental to successful programmes.

The temptation among outsiders to view these organisations as rural and in need of capacity building can, however, deeply undermine. These organisations have been changing lives long before the city came to visit the countryside. They need to be respected as partners, and supported on their own terms.

Mutually empowering resources that can be shared in these partnership include mentorship and specific training courses, in line with the needs that the organisation identifies for itself.

Input such as professional information sharing, distribution materials providing information on aspects of HIV and gender, and the opportunity to network with others in the same field of work are powerful forms of support. The AIDS Consortium, Sonke and LoveLife all offer these.

Ausi Motshidisi of Botho Jwarona discusses gender, sex and HIV with a group of tavern clients.

PHOTO CREDITS: TSHEPO SHOAI

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Conclusions and recommendations The stories of most significant change have supported the HIV, gender and culture programme’s approach to date. They have also given us useful guidance in taking the programme forward.

The programme has invested in relationships, organisations and communication. These all remain strong principles for expansion and deepening.

Relationships and partnerships The stories speak of the value of people in Mabeskraal being able to turn to CBOs. They validate CBOs being mentored and supported by NGOs. They demonstrate the critical mutual value of the programme forming a strong relationship with the King, and the value of partnerships in implementing the ideas that emerge from the Kgosi’s engagement.

The seed of this local network has potential to grow, through a natural progression of shared personal and professional experiences. It could disperse roots into many facets of the community.

Stakeholder analysis for HIV invariably identifies virtually every individual in a community as having some pertinence to the response. This is not unreasonable, given how the goals of preventing infections and mitigating impact do impinge on many facets of individual behaviour and society.

The organisational culture of the programme thus far, has opportunistically sought out and invested well in a few particular relationships. This emergent and organic strategy has effectively created a strong foundation. Every member contributes meaningfully, and sees benefits in participation.

25

Invariably relationships face tensions and crises. Mentored facilitation and honest communication around conflict resolution and constructive cooperation will be important for the success of the programme.

The programme should continue to deepen these relationships, and experiment for further mutual benefits.

New relationships need to hold the same quality and mutual attraction as the existing relationships. They should first and foremost be fit for purpose.

The programme has shown how relationships formed out of common interest, have been motivated by all parties with little persuasion. Expansion into new partnerships is important, but should be driven by shared commitment, ideas and contribution, rather than by a sense of obligation.

One area for expansion which emerged strongly from the stories was the need to foster relationships with traditional healers and religious leaders, building on the origins of the programme in the arena of culture. As the most trusted, and widely accessed opinion-formers, it is crucial that they be accurately knowledgeable about HIV. Within their own contexts, they need to then be facilitated through forming their own opinions and strategies that best meet the needs of their clients.

Although the programme approach has specifically targetted gender, and particularly men, effective solutions for men are difficult to achieve. The reach of all HIV programming to men needs more creative solutions, and the long-term investment of time and persistence. We might

Gender, Culture and HIV: Learning through evaluating Most Significant Change

assume that men are most available in taverns and in workplaces. Programme work that takes gender and HIV out to the least accessible, may address the under-served groups in the HIV response.

The other group in need of careful consideration is out of school youth; a group which is vulnerable and yet powerful in many respects. Partnerships among organisations, workplaces and tertiary training facilities may be strategic entry points. Ultimately the programme is about far more than HIV for these young people; and HIV is about far more than a virus. In engaging partners, the programme need to acknowledge the holistic needs of this group.

Organisations The programme has invested in supporting organisations and networks of organisations. It has opened up sometimes jealously guarded territory, towards a community of NGOs and CBOs that recognises the power of collective action. Those involved have all benefitted from extending their boundaries, despite the challenges of each establishing

UBUNTU ‘motho ke motho ka batho ba bang’ a person is a person through other people.

“A traveller through a country would stop at a village and he didn't have to ask for food or for water. Once he stops, the people give him food, entertain him. That is one aspect of Ubuntu but it will have various aspects.

Ubuntu does not mean that people should not address themselves. The question therefore is: Are you going to do so in order to enable the community around you to be able to improve?.”

Nelson Mandela

themselves in the competitive environment of non-profit, donor funded work. The spirit of ubuntu, of shared resources and collective action, inspires the formation of the many charitable organisations in poorer communities. This culture of social cohesion is natural to South Africans, and is one which gives momentum and precedence to the building of partnerships.

Ubuntu extends, however, to a tacit expectation of the equal sharing of resources among organisations, expectations that are invariably not met.

Nevertheless, the benefits of information sharing, networking and collaborative projects have been enjoyed. Training in formal CBO management has been valuable, and has enabled CBOs to build more formalised systems and administrative processes.

Although most easily accessible, working with CBOs is also an arena of programme work which carries substantial risk. Rapid growth, substantial funding, and textbook model training pose as many challenges to organisations, as opportunities. The concept of capacity building implies a simplistic, linear, desirable process of increasing size and abilities.

This seldom applies. Natural growth, occasional retractions and unexpected new directions are more likely and appropriate.

Slow, organisation-centred, responsive mentorship, encouragement and transfer of required and requested skills can help organisations. Even more, they need the facilitation of a culture of learning and internal

responsibility for their organisations. Organisations can grow to guide their own emerging capacity in directions that best suit their culture and their purpose.

Organisations and collectives often need to learn to ask the right questions, more than they need a set of useful answers.

Learning and reflection As leaders, doers and lovers of action, CBOs and NGOs and their partners do not always spontaneously stop to take stock.

The MSC process gave that opportunity. It engaged a group of actively involved community practitioners in the stories, perceptions and experiences of the community in which they worked. It took them out of the immediacy of their own activities, and the consistently positive feedback they enjoy from their normal clients.

There were many stories which might not have aligned with the world view of our team. Stories of sexual risk behaviour; despair; misunderstanding of the science of HIV; and ignorance of their efforts at intervention.

There were also many stories that might have exceeded their expectations. Stories of people taking control of their lives and their health; stories of pain and transformation; demand for health services and access to those services; and stories of sound knowledge and awareness of HIV. These processes of learning from community and reflection on our assumptions are critical. Without them, the programme runs the risk of drifting into irrelevance. With occasions for asking, reflecting and realigning, a group of complimentary organisations can be central to the support structures that take communities forward.

Young women paying close attention in a CBO information session. Local CBOs provide information, psycho-social support, services and referrals and opportunities to volunteer to community members. In certain circumstances, CBOs are integral to behaviour change. CBOs and NGOs are generally, however, most conducive to engaging women, and men have few resources for these services.

PHOTO CREDIT: TSHEPO SHOAI

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Summary of recommendations # Continue to support and engage Kgosi Mabe and the Traditional Council in constructive gender and HIV communication. # Together with Kgosi Mabe, continue and expand the youth sports programmes, ensuring that these have momentum, and become well-embedded as a local institution.

# Extend this programme, and reflect together on the role of the Kgosi in reaching neglected groups, particularly men and out-of-school youth.

# Carefully consider other strategic interventions, to specifically target youth aged 20-30. Provide this group with an entry point to the opportunities and personal development potentials relevant to this era of the lives.

# Broaden and intensify the investment in engaging men.

Learn through practice the communication styles, locations and contexts which best permit men to engage. Design programming that allows men to reflect on their roles and responsibilities in family life and around HIV, and to make wellinformed, empowered choices.

# At its most intensive, the programme should seek out the support styles which best suit men in situations of loss, fear and despair, equivalent to the support which CBOs provide to women in these circumstances.

This combination of factors seems to leads to lifestyle and behaviour change.

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# Invite and encourage traditional healers, through the enthusiastic and well-informed leadership of the traditional healers association in Mabeskraal to: discuss HIV; become accurately informed; and collectively reflect on a response based on shared knowledge and experience.

# In a separate forum, invite and encourage religious leadership to discuss HIV, become accurately informed, and collectively reflect on a response based on shared knowledge and experience.

# Continue to support Bacha ba Kopane, Botho Jwa Rona and Pholo Modi wa Sechaba through joint projects, mentorship, training if required and requested, and collective action.

# Continue to ensure the active presence of AIDS Consortium, Sonke Gender Justice and Lovelife in Mabeskraal, expanding their model of emergent, organic and community-lead engagement into other areas of North West province.

# Continue to facilitate relationships between these NGOs and CBOs and the office of the Traditional Authority.

# While increasing complexity in this group of partners might dilute their cohesiveness, certain targetted, new partnerships would be useful.

Partnerships need to be identified which achieve better access to men and to out of

Gender, Culture and HIV: Learning through evaluating Most Significant Change

school youth. These need to be carefully selected to merge into, stimulate and enhance the existing collection of organisations.

# Consider formalising the collective into a ‘coalition’ only to the extent that this is believed to strongly serve better outcomes and stronger relationships.

# Widen the net of communication, without forcing collaboration or investing disproportionate time, to include all those involved with HIV. Initiate a forum in collaboration with Kgosi Mabe, such as a regular imbizo in which stakeholders can learn together through sharing their views and experiences. Be prepared to engage calmly and positively with local politics in attempting broad engagement.

# This communication network could provide a source of relationships for more active collaboration, where partners find commonality in their goals and organisational cultures.

# Focus an area of energy and thought into HIV in social activism. Allocate a programme stream, without excessively preoccupying resources, into confronting the underlying causes of all forms of inequity, as they uphold environments in which HIV invades communities. The role of civil society to question and confront the status quo must not be neglected in the search for function, meaning and funding within that status quo.

References Rick Davies and Jessica Dart (2005) The 'Most Significant Change' (MSC) Technique: A Guide to Its Use. Care International (UK) HSRC (2008). South African National HIV Prevalence, Incidence, Behaviour and Communication Survey, 2008. A turning tide among teenagers? HSRC (Pretoria)

uu Back cover: Deep in debate on Boswagadi, condoms, HIV and youth sexual behaviour, the elders of Mabeskraal discuss matters over a sorghum beer in a local tavern.

PHOTO CREDIT: TSHEPO SHOAI