Strengthening community responses to HIV and AIDS in South Africa: Lessons One JOHAP (2005) by The Power Is In People

Lessons

Number One

Strengthening community responses to HIV and AIDS in South Africa

Report Prepared by: Margaret Roper

JOHAP The Joint Oxfam HIV/AIDS Program in South Africa seeks to strengthen the civil society response to HIV/AIDS through supporting integrated communitybased services for HIV prevention and care, including a focus on gender and sexuality and the rights of people living with, and affected by, HIV/AIDS.

Deutschland ISBN 1-875870-55-5

Ireland

A series of reports on the Joint Oxfam HIV/AIDS Program (JOHAP) 2005

Contents Photos

Introduction

Front cover: Children participating in the Scout groups organised by the CHoiCE Volunteer Care Givers. Matthew Willman/OxfamAUS

JOHAP partnerships

Top left: Sophie Maeokela is a PLWHA, a HIV and AIDS activist and the major breadwinner for her extended family. Paul Weinberg/OxfamAUS Top centre: When the mobile clinics arrive they become a hive of activity. Matthew Willman/OxfamAUS Top right: A boy on his way back from school in the Mamitwa Township. Matthew Willman/OxfamAUS Middle left: Kwamakhuta Community Resource Centre on the ground of the Community Church. Matthew Willman/OxfamAUS Middle centre: A volunteer Care Giver from the CHoiCE organisation. Matthew Willman/OxfamAUS Middle right: Starting of small plots of land for farming in the Tshixwadza village, RYDO. Matthew Willman/OxfamAUS Bottom left: Beauty (Nkhangweleni) Magala, a volunteer with RYDO. Matthew Willman/OxfamAUS Bottom centre: Nathi Buthi (Project coordinator) standing outside the Container Offices of Kwamakhuta Resource Centre. Matthew Willman/OxfamAUS Bottom right: Robert Mamone â&#x20AC;&#x201C; RYDO Youth Service Volunteer standing outside their office in Mbaleni. Matthew Willman/OxfamAUS

JOHAP objectives

Purpose of this document Learning edges

5 6

10 11

Mobilising community participation in rural and cultural contexts

1.1

Build community knowledge and capacity to change community attitudes

1.2

Local ownership, local expertise

1.3

Network for referrals

Confronting vulnerability: Creating empowered people

2.1

Support groups for a supportive community

2.2

Peer education and volunteers: resources and activists for creative change 15

Leading the way: Creating opportunities for change

3.1

Confronting vulnerability through strategic interventions

Challenging stigma through transparency and peer education

3.3

Mainstreaming HIV and AIDS into daily life

3.4

Incorporate gender focus and promote equity

3.2

3.5

Intergrated program delivery

Conclusion Acronyms

Contents Photos

Introduction

Front cover: Children participating in the Scout groups organised by the CHoiCE Volunteer Care Givers. Matthew Willman/OxfamAUS

JOHAP partnerships

JOHAP objectives

Purpose of this document Learning edges

5 6

10 11

Mobilising community participation in rural and cultural contexts

1.1

Build community knowledge and capacity to change community attitudes

1.2

Local ownership, local expertise

1.3

Network for referrals

Confronting vulnerability: Creating empowered people

2.1

Support groups for a supportive community

2.2

Peer education and volunteers: resources and activists for creative change 15

Leading the way: Creating opportunities for change

3.1

Confronting vulnerability through strategic interventions

Challenging stigma through transparency and peer education

3.3

Mainstreaming HIV and AIDS into daily life

3.4

Incorporate gender focus and promote equity

3.2

3.5

Intergrated program delivery

Conclusion Acronyms

Introduction

JOHAP objectives In 1998, the Joint Oxfam HIV and AIDS Program (JOHAP) in South Africa, was established by a group of international Oxfam agencies wishing to increase their impact by pooling their resources and working collaboratively in response to HIV and AIDS in South Africa. The program provides funding and technical support to non-government organisations (NGOs) and community based organisations (CBOs) in two of the poorest provinces in South Africa: KwaZulu-Natal and Limpopo. The current goal of JOHAP is to ensure that the quality and cohesion of the civil society responses to HIV and AIDS is improved as a result of its support for the development, documentation, evaluation and dissemination of good practice in HIV and AIDS work. This is achieved through providing funding and technical support to partners, documenting and sharing activities, linking and learning activities, and building cohesion activities. This report highlights the “Learning Edges” of JOHAP partner experience and practice. “Learning Edges” refers to the innovative and leading practice that has emerged in the delivery of the JOHAP partner responses to the needs of the community and participants in delivering an effective, efficient and sustainable service.

Photo: Joseph Khathutshelo Ramanaka a volunteer with RYDO. Matthew Willman/OxfamAUS

Organisations are supported within one of the following three JOHAP program objectives: 1. Approaches to HIV and Sexually Transmitted Infections (STIs) prevention work that effectively address gender and sexuality issues, with a particular focus on young people, are evaluated, documented and disseminated in ways that strengthen civil society’s response to HIV and AIDS. 2. Models of linking HIV prevention and care in integrated community services are documented, evaluated and disseminated in ways that strengthen civil society’s response to HIV and AIDS. 3. A more enabling environment for HIV and AIDS programming is created, with a particular focus on the rights of people living with and affected by HIV and AIDS1.

Photo: Agrineth Mongwe relaxing outside her hut in the Mamitwa village. Matthew Willman/OxfamAUS 1 The term PLWHA’s is used in this document and refers to people living with HIV and/or AIDS.

Introduction

Photo: Joseph Khathutshelo Ramanaka a volunteer with RYDO. Matthew Willman/OxfamAUS

Photo: Agrineth Mongwe relaxing outside her hut in the Mamitwa village. Matthew Willman/OxfamAUS 1 The term PLWHA’s is used in this document and refers to people living with HIV and/or AIDS.

JOHAP partnerships JOHAP partnerships in South Africa JOHAP has formed partnerships in South Africa with organisations in KwaZulu-Natal and the Limpopo Province. Each partner delivers programs within one of the strategic objectives of JOHAP outlined on the previous page. The organisations referred to in this report are profiled below. Other organisations supported by JOHAP may be doing similar work which is not reflected in this document. Bela Bela support group In 1999, the Bela Bela HIV and AIDS Prevention Group was formed as a subcommittee of the Bela Bela Welfare Society in the Limpopo province. The group initially came together once a week to discuss their personal situations and how to support each other in living positively with HIV and AIDS. Nurses at the local clinic and the members of the executive committee of the Bela Bela Welfare Society assisted them. Members of the group wanted to engage more in active community work, as they believed they had much to share with the broader community. The Prevention Group became an active group in the district conducting activities within their own, and outside communities. The group comprises people living with HIV and AIDS, as well as HIV negative people, with individuals not expected to reveal their status. Their work is undertaken in the North West and Mpumalanga Provinces and covers approximately a hundred square kilometres. The range of services they offer includes Home Based Care, Orphan Care and prevention work which includes treatment literacy, Voluntary Counselling and Testing

(VCT), follow-up counselling, training and Antiretroviral (ARV) support. Beneficiaries of the program are community members who are infected and affected by HIV and AIDS, community groups who receive prevention messages, especially young people at local primary and high schools, and patients who are on an ARV program. Centre for positive care The Centre for Positive Care has provided comprehensive community based HIV and AIDS prevention and care services through the involvement of well-trained community volunteers. The Centre for Positive Care was established as a direct response to the growing HIV and AIDS pandemic in the province. The Centre for Positive Care has approximately a thousand volunteers within their communities, and about ten permanent staff. The Centre for Positive Care estimates that approximately half a million people in the four districts in which they work benefit directly from their HIV prevention service.

Comprehensive Health Care Trust (CHoiCe) Comprehensive Health Care Trust, or CHoiCe as it is referred to, operates in the greater Tzaneen Municipality in Limpopo and serves the surrounding rural area in which poverty and unemployment are rife. CHoiCE was established by four professional nurses to meet the needs of people in the area for preventative information about HIV, and to support those infected and affected by HIV and AIDS. Currently CHoiCE has over two hundred and forty volunteers and about twelve staff members including international volunteers. The project provides HIV and AIDS services in terms of training, care and support, the provision of information, and health services based on the needs identified by and for the people of Tzaneen. The beneficiaries are the impoverished communities, particularly women, people living with HIV and or AIDS, their families, orphans and vulnerable children (OVCs).

The face of the epidemic has changed over the past three years. Initially the focus was on raising awareness for prevention, and has now shifted towards meeting the needs of a growing numbers of orphans and people requiring care. The Centre for Positive Care initially focused on peer education programs and more recently has established home based care services.

Photo: Sophie Maeokela, A PLWHA and HIV/AIDS activist, visits a school to raise awareness. Paul Weinberg/OxfamAUS

Khomanani Ba-Phalaborwa HIV and AIDS support group The organisation was launched in 2001 as an HIV and AIDS awareness project, as PLWAs had no support in the area, and to address the increase of HIV and AIDS amongst people in the area. The project aims to strengthen the capacity of the support group to become self-sustaining in providing care and support for people infected and affected with HIV and AIDS, and to contribute to the reduction of stigma associated with HIV and AIDS in the community. The project consists of a group of PLWHA’s who act as ‘positive ambassadors’ within the community. They provide care, counselling, and acceptance amongst affected family members, and provide support to people living with HIV and AIDS. To contribute to reducing stigma and discrimination associated with HIV and AIDS they conduct public and house-to-house campaigns. They recently began investigating how they can support the delivery of and adherence to antiretroviral medication. The primary beneficiaries of the project are the ten active members of the support group who form the executive. The secondary beneficiaries are the seventy-eight support group members who are mostly women. The broader community is also benefiting as the support group members are involved in creating awareness and reducing stigma of HIV and AIDS across a number of communities. Rainbow youth development organisation The Rainbow Youth Development Organisation is a non-government 2

A form of bar or pub.

organisation involved in training and educating young people on Adolescent Reproductive Health issues as well as supporting Community Based Youth Projects in the Vhembe district of Limpopo. The Rainbow Youth Development Organisation was founded in 1999 under the umbrella body of the Centre for Positive Care, and was established to respond to, and join forces with other South African groups to curb HIV and AIDS amongst youth in rural communities. The program is based on the primary health care model and builds capacity of young people in agriculture, and care and support in HIV and AIDS. The beneficiaries of the project are the service providers and the community. There are approximately a hundred thousand young people in the Vhembe district. The project works directly with local service providers and a large proportion of the youth are accessing the services. The beneficiaries include PLWHA’s and young women who are an integral part of the program. Their approach is to recruit, select, train, deploy and support twelve volunteers in the Vhembe District to cover ten communities. Six volunteers are instrumental in training, support and mentoring youth Community Based Initiatives (CBI’s) in the field of prevention, care and support. The other six provide training on basic farming techniques, marketing strategies, bookkeeping, and land care. Lamontville AIDS support centre Lamontville HIV and AIDS Support Centre is a Community Based Organisation (CBO) established in 1996. After much consultation with local organisations and churches on the subject of HIV and AIDS in the township, two pioneers started what was then the

only Lamontville initiative on HIV and AIDS. The aim was to increase general awareness to the public and to promote preventive measures concerning HIV infection. The Lamontville AIDS Support Centre empowers youth to deal with HIV and AIDS, STI prevention, gender and socioeconomic development issues through training, workshops and community outreach campaigns. Their services target youth, both in and out of school in Lamontville, one of the oldest townships outside Durban in KwaZulu-Natal. Beneficiaries include parents, educators and community members infected or affected by HIV and AIDS. They undertake awareness raising in schools, churches, taverns and shebeens2 and the community at large, peer training and education, public campaigns, peer counselling, condom demonstrations and distribution, and host an information centre. Lawyers for human rights, HIV and AIDS project, Pietermaritzburg Lawyers for Human Rights strive to promote, uphold and strengthen human rights. Since its inception in 1979, the organisation has had a proud history of fighting oppression, particularly in terms of the abuse of Human Rights in South Africa. In 1996, South Africa saw the birth of its first Bill of Rights, which is entrenched in our Constitution. The vision of the organisation is to be a leading, effective human rights and constitutional watch dog and advocate. Lawyers for Human Rights strive to promote awareness, protection, and the enforcement of legal and human rights through the creation of a human rights culture. There are eleven offices nationally and they are either project based, such as the Child Rights and HIV and AIDS Projects in Pietermaritzburg, or law clinics.

The HIV and AIDS Project was founded in 1993 as a result of a growing recognition that discrimination against people living with HIV and AIDS was becoming one of the key human rights issues facing the country. This project raises awareness and provides training in HIV and AIDS and the Law, undertakes lobbying and advocacy, facilitates community interventions, and provides legal advice. Beneficiaries to the project include ten Human Rights organisations and their clients; twenty AIDS service organisations and their clients; a hundred public service sector staff (including welfare, health and education service providers); youth in five schools; approximately nine hundred and twenty PLWHA’s or those affected by HIV and AIDS who attend the Law Clinic; child beneficiaries of the Law Clinic; and twentyfive grandmother or caregivers and those in their care.

children. In addition, they are working with ten out-of-school youth groups comprising a hundred and sixty youth trained in drama and HIV and AIDS awareness and information. The beneficiaries are farm workers, youth participating in youth groups, PLWHA’s and their families, volunteers, community stakeholders and the community in general. Targeted AIDS interventions Targeted AIDS Interventions is based in Pietermaritzburg, KwaZulu-Natal and works with young men who are in and out of school. Targeted AIDS Interventions was established to contribute to reducing the spread and negative impact of HIV and AIDS through the medium of soccer by enabling men to understand their own sexuality, communicate effectively about sex, and take responsibility for their sexual behaviour.

Young men between twelve and twenty-two years of age in urban and rural areas participate in the project, which also benefits their partners, parents and peers. One of the Targeted AIDS Interventions projects is the “Shosholoza AIDS Project” which trains soccer players as Peer Educators to better protect themselves and their partners by increasing the level of accurate knowledge.

Photo: Maria (left) and Ephenia Maeokela, whose mother Sophie is a PLWHA, live with their grandmother. Sophie visits on the weekends. Paul Weinberg/OxfamAUS

Tivoneleni Vavasati AIDS awareness project Tivoneleni Vavasati AIDS Awareness Project operates at Elim in the Mvhembe district of the Makhado Municipality in Limpopo and provides services to thirty-two villages. They have been in existence since 1991 and were established to offer care and support to PLWHA’s, orphans and vulnerable children; to prevent the spread of HIV and AIDS; promote positive living and contribute to moral regeneration of the South African society. There are currently fifty-four care supporters, sixty-eight Peer Educators and eight permanent staff members. They provide services in peer education, home based care, support for PLWHA’s, and care and support for orphans and vulnerable

A form of bar or pub.

Photo: Maria (left) and Ephenia Maeokela, whose mother Sophie is a PLWHA, live with their grandmother. Sophie visits on the weekends. Paul Weinberg/OxfamAUS

Learning edges Purpose of this document

Learning edges

The purpose of this document is to highlight the promising practice and lessons learnt through the work of some JOHAP partner organisations in South Africa. The aim is to share what works and what doesn’t within the South African context for use and adaptation by other organisations. Simultaneously the process has built the technical skills of the partner organisations to enable greater self reflection of practice and impact, documenting practice through case studies, and encouraging the use of these skills within the delivery of programs and organisational accountability.

This section explores the “learning edges” emerging from effective responses by organisations to meet community needs and community level practice to HIV and AIDS. The purpose is to highlight lessons for organisations to improve the quality of the services and community support they offer within the South African context.

As highlighted, the organisations work in different communities in Limpopo and KwaZulu-Natal and provide services for different beneficiaries. Although the programs focus on similar aspects in the prevention, care, treatment and impact mitigation of HIV and AIDS in South Africa, how they deliver these programs differs and is specific to the organisation as well as the needs, dynamics and setting of the specific individual or community.

Although the programs focus on similar aspects in the prevention, care, treatment and impact mitigation of HIV and AIDS in South Africa, how they deliver these programs differs and is specific to the organisation as well as the needs, dynamics and setting of the specific individual or community. 10

1. Mobilising community participation in rural and cultural contexts Consequently, the partners work with a range of sectors of the community: from orphans and vulnerable children, to sex workers and truck drivers, social workers, nurses and families in need including grandmothers. The reach they have also differs, and depends on their programmatic focus areas, implementing structures, beneficiaries, and local settings. Strategies to engage government and communities also differ, as do individualised experiences and the growth of the organisation. A number of similarities exist between these organisations which are worth highlighting: • Most work is at a grassroots level and interact with individuals on a daily basis;

• They take on a role in lobbying and advocacy for HIV and AIDS as a human rights issue; • There are networks between JOHAP partners and other organisations which provide a ‘safety net’ for referrals, sharing of experiences, and ability to respond quickly to needs and issues as they arise; • Not only does JOHAP build partners’ organisational and individual skills and capacity, many partners share these skills with those who benefit directly from the program. This report highlights the “learning edges” of the organisations in the delivery of services within their specific communities relevant to the JOHAP objectives.

• There is a particular focus on children, youth and women, and a conscious decision to engage with gender norms and stereotypes to challenge attitudes and behaviour; • All are influenced by particular circumstances at the local level which have directed their focus in terms of service delivery;

Photo: Students attending a seminar on HIV and AIDS and the Law at the Kwamakhuta Library. Matthew Willman/OxfamAUS

The HIV and AIDS epidemic cannot be separated from community norms and values, community structures, and the different people who are part of a specific ‘community’ who differ in cultures, ideas, identities, roles, levels of cohesion and responsibility. Therefore, community growth and transformation depends on individual expertise and community capacity. The role of the partners is to build individual expertise and community capacity, and mobilise community structures to respond to HIV and AIDS in an appropriate and sustained manner. The partners use a range of strategies to mobilise communities which in turn give effect to moving beyond information, education and communication about HIV, AIDS, gender and healthy living. The strategies build on information sharing to engage communities in the treatment and care of those infected or affected by HIV and AIDS, as well as ensuring the rights of these individuals are realised. The case studies developed by the partners illustrate and highlight a number of these strategies.

The strategies aim to address grass-root realities and gender and sexuality issues pertaining to those most vulnerable towards HIV and AIDS. The overall aim is to create an enabling environment for those living with, or affected by HIV and AIDS to access and uphold their rights. Findings from case studies suggest that community mobilisation is best achieved through: building community knowledge and capacity which results in a “changed mindset” - changed values, norms and attitudes towards each other; placing ownership of change firmly within the community; and developing a strong network for support and referrals. These are discussed below. 1.1 Build community knowledge and capacity to change community attitudes One of the challenges all the organisations faced is the stigma and discrimination associated with HIV and AIDS, which is manifested in a lack of individual and community action, and support and care for those infected or affected by the pandemic. JOHAP’s objective is to strengthen community involvement to respond to HIV and AIDS, and a key learning edge from the partners indicates the necessity of building community knowledge and their capacity to respond to the pandemic in a sustained and accountable manner. The Lamontville AIDS Support Centre experience suggests that “sustaining a community intervention means ensuring local ownership by involving the community in the initial phases of planning and formulating”. Therefore, the community is able to accept the conceptual framework of the intervention model, and provide

initiative during all stages of the intervention. As owners of the community level intervention, collective responsibility increases the capacity of the intervention to reach a large number of people, and individuals can be part of a large scale initiative. As Lamontville AIDS Support Centre highlight: “It also means broadening the scale of intervention to reach more people at the initial site, and to expand the number of sites where the intervention is implemented”. The Centre for Positive Care’s strategy is to minimise dependency on the nongovernment organisation to implement the services, and consequently engender longterm sustainability by training men and women in villages to educate, care for, and support people in their own communities. The goal is to work with communities so they are empowered to better cope with the effects of HIV and AIDS, as sustainability of the intervention rests with the community. Community ownership is developed amongst volunteers, and there is a strong sense of Ubuntu3 and a willingness emerging for the community to take collective responsibility for addressing problems faced by members of the community. Community structures are now forthcoming to offer support to the volunteers with traditional leaders and tribal authorities, churches and local municipality providing venues for training and meetings. Without their involvement from the beginning, it was unlikely the project would have succeeded because traditional structures still drive community mobilisation and cohesion. Without this, the intervention is viewed as being adhoc and is likely to contribute towards greater community fragmentation.

Ubuntu – a philosophy of life demonstrating community connectedness, responsibility, and care for each other where each person is integral to the betterment of each other.

Learning edges Purpose of this document

Learning edges

Photo: Students attending a seminar on HIV and AIDS and the Law at the Kwamakhuta Library. Matthew Willman/OxfamAUS

Ubuntu – a philosophy of life demonstrating community connectedness, responsibility, and care for each other where each person is integral to the betterment of each other.

1.2. Local ownership, local expertise A further learning of the partners is the need to establish local relationships with community structures (government, civic and civil), tribal authorities and local expertise.

According to the Khomanani Ba-Phalaborwa HIV and AIDS Support Group, “Relevant knowledge and participation is the key to self reliant individuals”. Their approach is based on the principle that a “Change of mind set prolongs the life of an individual”. Furthermore, experience indicated that the initial lack of evidence-based information pertaining to HIV and AIDS, and living with the disease, by professional health care workers and service related organisations contributed to the stigmatisation and discrimination associated with HIV and AIDS. Consequently, stigmatisation was challenged as more equitable and appropriate attitudes and perceptions were fostered which influenced more appropriate responses to the pandemic.

The Campus Law Clinic experience indicates that further assistance is required to empower communities to understand, and apply, their legal and social rights in response to HIV and AIDS. The project has successfully built the confidence of people living with HIV and AIDS and increased the general understanding of the law, access to law and that discrimination based on “HIV status” is not only wrong but can involve legal action. The next level of training required is not only for participants of the program, but to focus on issues relevant to HIV and AIDS within insurance law, social security law, and medical law. If those living with HIV know their rights, then discrimination and stigmatisation will be challenged – however this is applicable not only to those with HIV but to everyone in the community. The aim is that this action becomes preventative, not only reactive.

The focus is not only therefore on litigation and lobbying in response to discriminatory practice, but rather to ensure that policies, strategies and practice protect and enhance access to treatment and the rights of individuals. The Campus Law Clinic experience highlights the ongoing need for confronting discrimination and stigmatisation. Those who participated indicated the need for training and awareness to be carried out within the faith based context and broader community to eliminate prejudice towards, and discrimination against PLWHA.

Photo: One of the newly built classrooms at Somangwe Primary School. PPHC are involved in outreach programs teaching children about HIV and AIDS awareness. Matthew Willman/OxfamAUS

The Tivoneleni Vavasati AIDS Awareness Project approach has developed strong relationships with tribal authorities, chiefs, traditional healers, pastors and community health workers. This relationship is valued as a means of sharing resources, and it opened up access to the people in the community they aimed to service. Without the involvement of the local community structures, leaders and health care workers, the organisation indicated it would have been difficult to reach and engage with community members vulnerable to infection. As a result of the successful relationships, the program has been able to effectively reach truck drivers, garage workers, tavern owners and staff, workers and patrons of bottle stores, farm workers, youth in villages and sex workers. The home based care model of the Centre for Positive Care is built on the principle of providing care and support through family and community based caregivers. This approach has developed and strengthened a sense of shared responsibility between the care supporter, primary care giver in the family unit, and the person in need of home care. The CHoiCe programs support groups for people living with HIV and AIDS raise the importance of local expertise to participate in building the knowledge of participants, changing behavioural practices, and role modelling positive and healthy living. By and large this is achieved by the support groups facilitating and establishing

relationships of care, trust and ransparency between the local experts and participants.

These approaches have included the following strategies:

Different relationships are established by the partners depending on the partner and the role they undertake in the functioning of the community. This is important as roles differ in the planning, implementation, sustaining and assessment of projects – and in decision making. Tribal authorities, civic structures and government service delivery agents have a valuable role in providing leadership, acceptance and community mobilisation, whereas tavern owners, as in the Lamontville AIDS Support Centre example, can be ‘gatekeepers’ of information and access to vulnerable groups unless they are encouraged and motivated to participate in community-level interventions. Relationships with the beneficiaries themselves are critical to move beyond awareness raising into behavioural change, healthy living and sustained community mobilisation, participation and action. Therefore, the relationship is not one sided: the participatory approach allows for an exchange of learning and shifting of the relationships to develop partnerships in prevention, care and treatment.

• A network system in the Khomanani Ba-Phalaborwa HIV and AIDS Support Group mobilised community support and recognition. PLWHAs in the Support Group became what they term “change agents”, in their families, peer groups, and community. These change agents become involved in local structures and networks in order to share their experiences and mobilise the support they required from service providers.

1.3. Network for referrals Many partner projects work in rural areas where there is often a lack of infrastructure, and great geographical distances between villages, homes and the partner office. Consequently, it is difficult to contact and reach individuals. The JOHAP partners have therefore had to use innovative approaches to reach marginalised and vulnerable groups to provide and build communities capacity to respond effectively to the continuum of prevention, care and treatment.

• A referral system by the Bela Bela Support Group between PLWHAs, counsellors, and clinic staff and nurses created a climate of acceptance for attending voluntary counselling and testing. As a result, individuals take responsibility for living their life with or without HIV, and to whom they disclose the results of being tested for HIV. • Volunteers from the Centre for Positive Care have a network of support at each community and village level, as they work hand in hand with the social worker, staff at local clinic or hospital, and local health centre. In addition, they have a strong partnership approach with traditional structures that provide resource support and credibility for the work they do in the village.

Without the involvement of the local community structures, leaders and health care workers, the organisation indicated it would have been difficult to reach and engage with community members vulnerable to infection. 13

Photo: One of the newly built classrooms at Somangwe Primary School. PPHC are involved in outreach programs teaching children about HIV and AIDS awareness. Matthew Willman/OxfamAUS

relationships of care, trust and ransparency between the local experts and participants.

These approaches have included the following strategies:

2. Confronting vulnerability: Creating empowered people Vulnerability to HIV is generally accepted to be associated with socio-economic marginalisation, and over the past years, assessments indicate that the influences on behaviour need to be addressed within the community context. Campaigns for the mass public appear to be ineffective in influencing changes in risk and sexual behaviour to those most vulnerable to HIV. This is particularly so when universal messages are used across varying contexts. The learning from the JOHAP partners suggest that effective approaches must be rooted in community-level socio-economic activities to create empowered individuals, while at the same time ensuring that further stigmatisation is avoided. A range of strategies are used which are discussed below.

The support groups facilitated by the Khomanani Ba-Phalaborwa HIV and AIDS Support Group enabled supportive attitudes of people living with HIV and AIDS, community leaders, health care officials and individual community members.

2.1. Support groups for a supportive community What did not work in Limpopo were support groups that were not held at the clinic because of the stigma associated with those who went to other venues â&#x20AC;&#x201C; community members would watch and then talk about who came and went. The groups were held at the clinic, where there is easier access to medical care as it is needed, and individuals could go there without community members talking about what was going on. The clinic was seen as a safe and non-judgemental space. However, CHoiCe also found that many people living with HIV and AIDS could not afford the cost of transport to attend the group meetings. Consequently, funding was raised to enable people to attend, and the provision of tea was important in making it a social gathering where individuals felt respected, affirmed and part of a community. What worked for CHoiCe to maintain the support groups was inviting guest speakers to the support groups to address a range of topics, build relationships, and break barriers between those with, and those without HIV and AIDS knowledge. Guests included doctors, dieticians, social workers and faith based personnel. A wellness clinic was started where people living with HIV and AIDS can go for advice on health and treatment. Individual cases are managed according to individual needs and the stage of infection. Despite these initiatives, individuals still face stigmatisation within their communities. One intervention used by CHoiCE to challenge stigma and promote the rights of people living with HIV was to employ a nurse to share her experience of living with HIV, provide advice and wellness

information to people living with HIV and AIDS, and encourage those infected or affected, and community members, to uphold the rights of PLWHAs. In the Bela Bela Support Group, there is a continuous flow of individuals into the support groups so there is a need for ongoing information, sharing of problems, developing self esteem through participating in mobilising self and others to make informed choices, and encouraging hope for the future â&#x20AC;&#x201C; that it is possible to live life fully if you are infected or affected by HIV. In this community, the awareness has resulted in many individuals wanting to learn more about Antiretroviral (ARV) treatment. The support groups facilitated by the Khomanani Ba-Phalaborwa HIV and AIDS Support Group enabled supportive attitudes of people living with HIV and AIDS, community leaders, health care officials and individual community members. This contributed to positive living and an enabling environment for effective treatment, care and healthy relationships. Feedback received by sex workers and truck drivers indicates the support groups have increased community support for all those at risk of infection, and an increase in levels of acceptance by village members.

Photo right: Children wait under the shade of a tree whilst pregnant mothers visit a local mobile clinic in the Mamitwa village outside of Tzaneen. Matthew Willman/OxfamAUS

2.2. Peer Education and Volunteers: resources and activists for creative change Given the strategic focus of the partners to build community capacity to respond to HIV and AIDS, volunteers from individual communities and villages have been selected and trained in skills to provide services at the local level. The advantage of this approach is that it reduces costs of travel, the volunteers know their community structures and dynamics, know those in need, and are able to provide ongoing

services. Experience from Lamontville HIV and AIDS Support Group highlights the importance of vetting potential volunteers to determine levels of commitment and their suitability to become peer educators. The Centre for Positive Care stresses the necessity of volunteer peer educators to not just focus on one aspect of prevention or care: rather, there is a need for volunteers to deal with the range of services. This may involve referring vulnerable children and orphans for special care or facilitating access to social grants. Not only does this

mean the range of family or community needs are met through contact with one volunteer, the volunteers themselves, in the case of CPC, are taking more responsibility for their own health and the health of their family members, especially in sexual and reproductive health awareness. Learnings from partners indicate that ongoing training appears to empower volunteers to change their own sexual behaviour, adopt and promote a healthier lifestyle, and reduce their own vulnerability to STIs, HIV and AIDS.

Photo right: Children wait under the shade of a tree whilst pregnant mothers visit a local mobile clinic in the Mamitwa village outside of Tzaneen. Matthew Willman/OxfamAUS

3. Leading the way: Creating opportunities for change A central learning edge emerging from the JOHAP partner experience is the importance of creating opportunities for individuals to engage in processes that allow them to make informed choices about their sexual behaviour. This strategy recognised the specific impact of HIV and AIDS on specific community sectors.. Once their specific needs have been identified (through consultation, requests for services, peer educators, and volunteers identifying issues or discriminatory practices), then the partner organisation is able to respond by creating and facilitating opportunities for sustained change by and in individuals, community structures, practice and service delivery systems. 3.1 Confronting vulnerability through strategic interventions HIV and AIDS practice acknowledges that the choices people make in their own sexual behaviour and intimate relationships are influenced by economic, cultural and social pressures and manifest in unequal power norms between genders. These factors cannot be ignored when understanding individual vulnerability towards infection, and developing strategic interventions and models for changing behaviour which places individuals at risk, or increases their vulnerability. Similarly, gender and power norms cannot be ignored, and the innovative approach by the Targeted AIDS Intervention towards empowering men through the provision of accurate information about their sexual health, developing social support to meet their needs, and facilitating their engagement with gender norms and their exposure to risk, has resulted in challenging the stereotypical behavioural norms.

There has also been an increase in the number of individuals going for voluntary counselling and testing, and requests for further information and support. Individuals making these requests are incorporated into the Lamontville AIDS Support Centre programs. HIV and AIDS, and sexual health now appear to be a less ‘taboo’ subject in some taverns and shebeens in Lamontville. Information from these sites is freely available through published material, videos and peer educators. Of interest, is the local clinic’s reported decrease in the number of STI infections in the 19 to 30 year age group, attributed by some to the increased knowledge the peer campaign provided, and peer educator facilitated discussions. There has also been an increase in the number of individuals going for voluntary counselling and testing, and requests for further information and support. Individuals making these requests are incorporated into the Lamontville AIDS Support Centre programs. Responding to needs of grandmothers by Lawyers for Human Rights illustrates the lack of knowledge on HIV and AIDS, accessing grants, and their rights when caring for orphaned children infected and affected by HIV and AIDS. From the

Photo: Mary Maluleke with her two orphaned great grandchildren, Emily (girl, left) and Tumi (boy, right). Paul Weinberg/OxfamAUS 4

An isiZulu word for grandmother, pronounced ‘gaw-gaw’

interview with the Gogo’s4, overall factors found to impede their ability to render better care for their grandchildren infected and affected by HIV and AIDS were poverty, schooling for the grandchildren, and coping with caring for their sick children and then those children that succumb to the illness. Gogo Zuma experienced this first hand and had to approach the community structures, such as the chiefs, to assist her with the communities’ discriminatory reaction to her HIV positive grandchild living with her. Food parcels were given by CHoiCe to those in need, however the support groups are now shifting towards developing skills for sustainable food sources through food gardens where excess produce can be sold to generate income for the group. 3.2. Challenging stigma through transparency and peer education In many instances the partners have encouraged, and supported, those directly affected by HIV and AIDS to share their experiences in a safe and open space. This has been valuable as it appears to demystify the disease, the consequences of living with it, and provides hope through role-modelling successful survival and overcoming of discrimination, stigmatisation and community challenges. Bela Bela’s Support Group for people living with HIV and AIDS has encouraged openness and compassion for those living with HIV. This has resulted in an increased number of community members, including youth, coming forward for voluntary counselling and testing, as they were aware of the consequences of previous behaviour and the necessity of living a healthy and positive life regardless of HIV status. By encouraging clients to disclose their status, more people are joining the support

groups – and removing the stigma around HIV and AIDS. The Khomanani Ba-Phalaborwa HIV and AIDS Support Group experience suggests that the lack of information in the community contributes to stigmatisation and this must be challenged by providing transparency of knowledge, attitudes and behaviour. As discussed previously, peer education approaches are a common strategy the partners use to build community and individual knowledge, role model new forms of behaviour, create safe spaces for groups to understand themselves, counter discrimination, and mobilise community responses to living with the pandemic. Feedback from participants in the Campus Law Clinic program indicate that the method of training was appropriate and enjoyed by participants, especially the role play segment that drove home the message being conveyed. Experience by the partners indicated that training and peer education sessions need to be interactive so people become involved in deepening their understanding and applicability of, in this case, the law, in practical situations. The Lamontville AIDS Support Centre effectively used video and promotional material in the shebeen campaign but did not rely on it alone. Facilitators from the local area were trained as peer educators to engage in dialogue and promote knowledge application amongst young people. Community facilitators were viewed as being effective in passing on knowledge and skills, and participants indicated they valued their patience, openness and sensitivity in relating to the literate and illiterate participants.

Photo: Mary Maluleke with her two orphaned great grandchildren, Emily (girl, left) and Tumi (boy, right). Paul Weinberg/OxfamAUS 4

An isiZulu word for grandmother, pronounced ‘gaw-gaw’

3.3. Mainstreaming HIV and AIDS into daily life The Lamontville AIDS Support Centre shebeen and tavern peer education campaign highlights the need for such campaigns to minimise the disruption of youth socialisation or entertainment, while at the same time providing the necessary knowledge and facilitating behaviour change. The approach is highly regarded by the Lamontville AIDS Support Centre and is suggested as a model for future campaigns. The campaign could not have happened without the support from the tavern and shebeen owners and the preconsultation with youth, as well as having a skilled facilitator to work with the young people and tavern owners.

Boys and men are opening up to an understanding of what it means to be ‘a real man’ – one that is not about having power over sexual partners. The Centre for Positive Care overcame challenges of stigmatisation and access to social services for people living with HIV and or AIDS. Integrating prevention and care has led to improved access to health care and welfare services for clients. Previously, if peer educators came across a person who required care they had no idea what to do. Now they are able to care for them and assist their family and children. Consequently, individual and community needs are able to be identified and responded to more quickly and

efficiently – particularly in facilitating access to social grants, primary health care and referrals to clinics. Of interest is the view expressed in the Centre for Positive Care case study that peer education on its own has reached saturation point, and there is a need to find innovative approaches designed and strengthened to minimise duplication by service providers, and find long-term sustainability for grassroots initiatives. Targeted AIDS Interventions use of existing structures such as schools and the South African Football Association (SAFA) was of critical importance as it paved the way to reach out to the identified community group while increasing acceptance and participation, not only in their intervention, but in sport and community structures. Rainbow Youth Development Organisation used a similar approach to integrate youth participation in community development activities while at the same time encouraging and facilitating young people to initiate and implement their own activities as part of self development.

an opportunity to understand maleness, masculinity, sexuality and sexual health within a human rights framework. While looking after cattle the older boys are now able to give advice, based on sound knowledge and understanding, to the younger boys, and they help them to understand, amongst other aspects, puberty, sex, pregnancy and sexually transmitted infections, as well as address the myths associated with sexual and reproductive health. The boys are then able to implement their own strategies to prevent HIV and STIs, and teenage pregnancy, in their schools, soccer teams and communities with minimal guidance from Targeted AIDS Interventions. The process therefore becomes participatory and collaborative.

3.4. Incorporate gender focus and promote equity

The tavern and shebeens campaign by the Lamontville AIDS Support Centre highlighted the need for issues surrounding HIV and AIDS to be tackled – such as gender, socio-economic justice, positive living and human rights. The campaign opened the door for young people to ask the questions and expand their knowledge: now there is a need to follow through on the practical application of the increased knowledge and shift in attitudes.

Through the Targeted AIDS Interventions’ programs, peer educators develop alternative notions of masculinity and become positive role models through interacting with peers who are not afraid to ask questions, and engage in dialogue about acceptable and unacceptable behaviour norms. Boys and men are opening up to an understanding of what it means to be ‘a real man’ – one that is not about having power over sexual partners. Information is targeted at men and provides

The Centre for Positive Care faced the challenge to recruit male care givers and provide service for male clients, particularly as some clients find it difficult for female volunteers to provide this care due to cultural issues, stereotypes, or less openness towards receiving care from the opposite gender. Centre for Positive Care’s work has sharply highlighted the positive role that male care givers play and the positive impact this has on themselves, the clients, families and the community.

3.5. Integrated program delivery The Centre for Positive Care merged the care support volunteers and peer educators to form an integrated care program. Prior to this, both groups worked separately within the same community. An integrated approach aimed to improve service delivery to clients, reduce stigma and discrimination, and provide greater access to clients. This required training on both programs, and moving into a new sphere of work for the volunteers. In practice, this is paying off as one encounter with a client, family or new contact offers an opportunity for the volunteer to provide a range of services and intervene immediately with the appropriate action.

The project is now able to reach out to previously unknown clients, especially orphans and vulnerable children, who were reluctant or did not know where to go for help and support. Family members and clients are more open and willing to talk about their conditions, seek guidance, and get treatment, since the roles have been combined.

Photo: Twice acommunity month the Government Improving Health Department travels to the surrounding partnership responses Districts of the Southern Drakensberg in The experience of the mobile JOHAPclinics partners in Mobile Clinics. These are the responding HIV and AID munity only medicaltotreatment centres thatsettings many in thevillages Limpopo and Here KwaZulu-Natal rural have. nurses adminster treatment and medicine to patients provinces of South Africa, illustratewho a have often sat learning waiting the whole day to number of key edges. These be attended to. below: are summarised Matthew Willman/OxfamAUS

In addition, the volunteers indicated they are more confident, and have improved self-esteem and indications are that they are having a positive impact on the lives of members in the community.

3.4. Incorporate gender focus and promote equity

In addition, the volunteers indicated they are more confident, and have improved self-esteem and indications are that they are having a positive impact on the lives of members in the community.

Conclusion Mobilising community participation in rural and cultural contexts is achieved by building community knowledge and capacity towards changed attitudes, placing ownership of change firmly within the community, and developing a strong network for support and referrals.

Learning edge: Community ownership of an intervention creates a collective responsibility to reach individuals and those vulnerable to infection, and a greater ability to extend the reach and impact of the intervention. Community ownership has a greater probability of succeeding if it is mainstreamed into the project conceptualisation and implementation strategy from the beginning, as this approach facilitates the empowerment of community members to cope with the effects of HIV and AIDS directly.

Learning edge: Stigmatisation can effectively be challenged and addressed by building community and individual knowledge to foster more equitable and appropriate attitudes and perceptions and practice in responding to HIV and AIDS.

Learning edge: People living with HIV and AIDS, and community members and structures, must know the legal and social rights of all individuals when responding to HIV and AIDS, to ensure that stigmatisation and discrimination is not practiced.

Learning edge: Strong relationships with traditional leadership, civic and community structures, local expertise and the partner organisation strengthens the ability of the community to respond to HIV and AIDS, take ownership of the necessary interventions, and ensure sustainability and accountability of services in the long term. Learning edge: Innovative approaches to reach marginalised and vulnerable groups need to be used to provide a continuum of prevention, care and treatment in responding to HIV and AIDS within the specific community setting and socioeconomic context.

Learning edge: A network for support and referrals at the community level increases the range of services on offer and supports individuals affected and infected by HIV to take responsibility for their own life, and care for those in need. The learning from the JOHAP partners suggests that effective approaches to HIV and AIDS must be rooted in community-level socio-economic activities and create empowered individuals, while at the same time ensuring that stigmatisation is avoided. This is achieved by developing and facilitating community-based support groups, training peer educators and equipping volunteers with the skills and capacity for them to become resources and activists for health development, and by confronting vulnerability through strategic interventions.

Learning edge: Support groups need to be integrated into community life to prevent further stigmatisation; and need to be safe places for individuals to feel respected, affirmed and part of the community. Thought must be given as to how people will attend support groups, addressing issues such as transport needs and location so those who want or need to attend, are not prevented from doing so. Inviting guest speakers and encouraging people living with HIV to share their experiences appear to be effective approaches to demystifying HIV and building a caring and supportive environment and community.

Learning edge: Selecting and training volunteers as peer educators and providing services such as home based care from the community, fosters community care, local capacity building to address individual, family and community needs. Furthermore, a critical range of services and support can be administered and facilitated by one person. The experience indicates that the volunteers themselves take more responsibility for their own health and that of their families. A central learning edge emerging from the JOHAP partner experience is the importance of creating opportunities for individuals to engage in processes that allow them to make informed changes about their sexual behaviour. Partner organisations and communities are able to respond effectively through creating opportunities for change.

Learning edge: Gender, power relationships, social pressures, culture, and economic situations influence individual decisions regarding sexual behaviour and cannot be ignored in the process of strengthening community responses to HIV and AIDS. Engaging men and boys, women and girls, youth, grandmothers, shebeen (and tavern) owners, traditional authorities, community leaders, and community members is essential to ensure that these issues are addressed with care and empathy. The purpose is to allow individuals to make informed choices about their own behaviour and to provide supportive structures to enable those at risk of infection or those living with HIV to engage in sustainable alternative forms of behaviour which gives effect to their human rights. Learning edge: Stigmatisation and discrimination is confronted and addressed through demystifying HIV, positive rolemodelling and individuals sharing their experiences in a safe and supportive environment. This can result in an increased number of individuals participating in interventions, going for voluntary counselling and testing, and supporting individuals affected or infected by HIV and AIDS.

Learning edge: Successful campaigns and interventions mainstream their activities into the daily life of individuals and the community. In addition, volunteers need to be equipped to effectively identify those vulnerable to HIV and provide a safety net and referral system for individualised services.

Learning edge: An intervention that incorporates a gender focus and promotes equity, builds participatory and collaborative responses to the epidemic at local levels within a human rights framework. Learning edge: An integrated care program improves service delivery to community members, increases access to care by vulnerable groups and reduces stigmatisation and discrimination as the volunteer (care giver, peer educator or facilitator) is able to respond immediately to situations and identify those in need who may not otherwise access the services.

Experiences at the community level also highlight a range of challenges which the partners have had to overcome, or are still facing. One of the challenges is recognising the work of the volunteers through a stipend or allowance, and covering the costs incurred while performing the voluntary services. At the same time the Bela Bela People Living with HIV and AIDS Group and CHoiCe are under pressure to increase their services to meet the needs of increased numbers of individuals for home based care, and for those demanding quality services. The challenge is how to manage this with a shortage of trained counsellors and venues in the community setting, and limited resources for training. A further challenge is the difficulty in measuring behaviour change in terms of STI and HIV prevention, as there is a lack of statistics from local clinics prior to and during the intervention. In addition, as identified by the Centre for Positive Care there is a lack of behaviour change

assessments and client satisfaction surveys to inform strategic decisions pertaining to the community level impact, intervention effectiveness within local contexts, and individual responses to HIV and AIDS. Targeted AIDS Intervention has identified the need and challenge, to involve parents in their campaigns. The aim is to address cultural barriers to talking about sex and HIV and AIDS, and facilitate two-way communication and knowledge sharing within a family network. Of interest is the finding from the Lamontville Aids Support Centre tavern and shebeen campaign, indicating that almost 50% of the youth participants had shared the information they had gained with their families through group discussions, one to one discussions, and with peers and family friends. Finally, experience highlights the importance of including people living with HIV and or AIDS at all levels and at every stage of the intervention. The JOHAP partner experience illustrates the positive impact and meaningful contribution these individuals have made as decision-makers, leaders, advocates for human rights, and clients of community based interventions. Through their courage and experience, and engagement with people not infected with HIV, stigmatisation is confronted and alternative, more appropriate attitudes and practices are advocated and implemented. This further raises the necessity of not only targeting people living with HIV and/or AIDS, but ensuring that services and care are provided to all in the community â&#x20AC;&#x201C; regardless of infection, gender or sexual behaviours.

Acronyms The JOHAP program currently operates in two provinces; Limpopo and KwaZulu-Natal.

Polokwane

Pretoria

Mafikeng

Johannesburg

Klerksdorp

NORTH WEST

Upington

ZIMBABWE LIMPOPO

BOTSWANA

NAMIBIA

Photos

Kimberley Bloemfontein

Nelspruit

Back cover: At the Mamitwa Community Clinic. Here Volunteer Care Givers (CHioCE) meet to dicuss the days duties and to report back to the Volunteers in charge before going out to visit the sick in Mamitwa. Matthew Willman/OxfamAUS

MPUMALANGA GAUTENG

FREE STATE

NORTHERN CAPE

Hoedspruit

Right: Children playing one of their favourite games organised by CHoiCE Volunteer Care Givers during their Scout meetings. Matthew Willman/OxfamAUS

LESOTHO

KWAZULU Hluhluwe NATAL

Pietermaritzburg Durban

Umtata

ATLANTIC OCEAN Cape Town

AIDS ARV CBI CBO HIV JOHAP

INDIAN OCEAN

EASTERN CAPE East London

WESTERN CAPE Mossel Bay

Acquired Immune Deficiency Syndrome Antiretroviral Community based initiatives Community based organisation Human Immunodeficiency Virus Joint Oxfam HIV and AIDS Program

Port Elizabeth

LGBT NGO OVC PLWHA STI VCT

Lesbian, Gay, Bisexual and Transgender Non-government organisation Orphans and vulnerable children People living with HIV and/or AIDS Sexually Transmitted Infection Voluntary Counselling and Testing

Oxfam Australia, 156 George Street, Fitzroy Victoria, Australia 3065 Telephone +61 3 9289 9444 www.oxfam.org.au

Acronyms The JOHAP program currently operates in two provinces; Limpopo and KwaZulu-Natal.

Polokwane

Pretoria

Mafikeng

Johannesburg

Klerksdorp

NORTH WEST

Upington

ZIMBABWE LIMPOPO

BOTSWANA

NAMIBIA

Photos

Kimberley Bloemfontein

Nelspruit

MPUMALANGA GAUTENG

FREE STATE

NORTHERN CAPE

Hoedspruit

Right: Children playing one of their favourite games organised by CHoiCE Volunteer Care Givers during their Scout meetings. Matthew Willman/OxfamAUS

LESOTHO

KWAZULU Hluhluwe NATAL

Pietermaritzburg Durban

Umtata

ATLANTIC OCEAN Cape Town

AIDS ARV CBI CBO HIV JOHAP

INDIAN OCEAN

EASTERN CAPE East London

WESTERN CAPE Mossel Bay

Acquired Immune Deficiency Syndrome Antiretroviral Community based initiatives Community based organisation Human Immunodeficiency Virus Joint Oxfam HIV and AIDS Program

Port Elizabeth

LGBT NGO OVC PLWHA STI VCT

Lesbian, Gay, Bisexual and Transgender Non-government organisation Orphans and vulnerable children People living with HIV and/or AIDS Sexually Transmitted Infection Voluntary Counselling and Testing

Oxfam Australia, 156 George Street, Fitzroy Victoria, Australia 3065 Telephone +61 3 9289 9444 www.oxfam.org.au

Lessons

Number One

Strengthening community responses to HIV and AIDS in South Africa

Report Prepared by: Margaret Roper

Deutschland ISBN 1-875870-55-5

Ireland

A series of reports on the Joint Oxfam HIV/AIDS Program (JOHAP) 2005