Concept Note

The South African National Strategic Plan (NSP) of HIV, STIs and TB 2012-2016 aims to address and ascertain the levels of stigma in South Africa. This objective is best served when the rights of those living with HIV, STIs and/or TB are respected, protected and promoted. Reducing self-reported HIV and tuberculosis (TB) stigma by 50% is one of the five priority goals of the NSP, while reducing stigma and discrimination to ensure access to services is a related goal.

Addressing stigma and discrimination is an exceedingly important aspect of mitigating the effects of HIV. Stigma and discrimination are not only harmful for people living with HIV (PLHIV) and their families, but also lead to undesirable health behaviours that may aid the spread of HIV. Individuals who do not disclose their HIV status and do not seek treatment may be more likely to pass the infection to others.

Stigma reduction is complex. Individual factors, such as lack of knowledge, fear of HIV infection, fear of disclosure, and belonging to high-risk populations, influence the effect of stigma reduction on amongst others HIV test uptake. Likewise, social-contextual factors, such as poverty, illiteracy, lack of availability of treatment, and cultural and gender norms, impact on this process.  On the whole, these effects limit the success of any HIV intervention in both treatment and prevention. Marginalisation of people who are at higher risk of infection, specifically key populations such as men who have sex with men, sex workers, transgender people and people who use drugs, drives them underground and away from HIV services.

SANAC undertook its first National Stigma Index Survey among PLHIV in 18 districts across South Africa This study included over 10 700 participants who are HIV positive and who are older than 15 years, the largest of its kind in the world. The survey concluded that South Africa has made good progress in dealing with HIV-related stigma and the levels of stigma are relatively low when analysing instances of stigma independently of each other.

When composite scores of external and internal scores are analysed the report shows that there is still a moderate level of stigma affecting about one-third of PLHIV who took part in the study.  Unsurprisingly, the report shows that internalised stigma is still a major challenge in South Africa with more than 40% of PLHIV expressing feelings of internalised stigma. Over one-third (35.5%) of the respondents reported having experienced stigma and discrimination because of their TB status, with a smaller proportion (8.5%) indicating having experienced stigma and discrimination because of their sexual orientation.

One of the key recommendations of the Stigma Survey was for an urgent need to develop and implement a national Stigma Mitigation Campaign led by SANAC to address internal and external stigma. Taking into consideration that stigma levels were high in the provinces of KwaZulu-Natal, Mpumalanga, and the Free State, it recommends these provinces for prioritisation. It also recommends a specially-tailored campaign among youth and young adults aged 15-24 age group living with HIV as higher levels of stigma and discrimination are experienced in these ages than in older age groups.

Objective

The campaign brings awareness to the communities of HIV and TB stigma and discrimination experienced by PLHIV and the infringement of their human rights. The objective is to encourage and promote community engagement in taking action on stigma and TB reduction for social change. This campaign will address stigma and specifically internalised HIV and TB stigma, and the need for links to the Legal Aid helpline.

Target Group

People living with HIV (PLHIV) especially young people born with HIV.

Methodology

  1. The campaign focuses predominantly on district-based activities with support through training and coordination by the implementing partner organisations (IPOs). The IPOs in each district coordinates the roll-out of the campaign in the communities under the guidance of a well-designed toolkit by Soul City Institute (SCI).
  2. The IPOs in each district will convene a community stakeholder workshop where they will introduce the campaign and its objectives and identify roles that different stakeholders can play in the implementation. One of the outcomes of this workshop will be a district Stigma Reduction Steering Group, which will include representatives from local stakeholders such as health and social services, municipal services, community-based organisations, and faith-based organisations amongst others.
  3. The local IPOs will then conduct inception community dialogues to introduce the campaign into the community and discuss stigma-related issues affecting the community. During this dialogue, the community will be invited to elect 15 Stigma Campaign Ambassadors who will be the face of the campaign in the community. These would ideally be individuals who are known locally and hold some stature in the community. They will also include PLHIV.
  4. The IPO will conduct a 2-day training of the volunteer campaign ambassadors who will be paid a stipend. This will be training on the campaign objectives, the roles that they will play and the key messaging and how it should be communicated. These brand ambassadors will also be trained on interviewing skills as they will be expected to interface with local community radio as part of the campaign.
  5. The IPOs will also train community mobilisers who will also be paid a stipend for mobilising and coordinating the community events. These mobilisers will be mainly youth and be responsible for door-to-door communication, the distribution of media materials, conducting some stigma awareness talks and information sessions in the local clinic and community centres and during community events.
  6. Both ambassadors and Mobilisers should include PLHIV.
  7. The IPO will conduct a 1-day training of the 12 community mobilisers, with a refresher course every year.
  8. During the community dialogue, the community will agree on local actions that they would like to adopt in support of reducing stigma in their communities. The IPO will ensure that the plans are aligned with the campaign objectives. The plans will involve the mobilisation of community members and getting them involved in activities aimed at raising awareness about stigma, dialogue about the drivers of stigma and how the community can tackle them by taking action.
  9. The social mobilisation will be complemented with media products developed and distributed within the communities. The materials will be common across the districts, but be tailored for each district campaign through branding with local campaign ambassadors and referring to local statistics and context.
  10. SCI will advise in developing the materials in order to capture local context and use local pictures and depictions.
  11. These materials will be used in the community dialogues and distributed through local community events, health facilities and other community and faith-based organisations.
  12. IPOs are also to flight Public Service Announcements (PSAs) which SANAC has already developed, on local community radio to stimulate dialogue on stigma and the responsibility of the community in reducing stigma.
  13. IPOs to take the lead as SCI engages community radios in holding talk shows about stigma and highlighting the challenges and encouraging communities to take appropriate action. These talk shows will include the local campaign ambassadors and various stakeholders will be invited to talk about stigma reduction. They will link to the social mobilisation activities through broadcasting activities and events.

Local Action Activities

These local action plans will take a different form in each of the communities and will include but not be limited to:

  • On-going community dialogues
  • Establishing support groups for PLHIV to address internal stigma
  • Distribution of posters, leaflets and pamphlets
  • Organising anti-stigma walks
  • Holding anti-stigma fairs, which will include drama, theatre, poetry and other arts in communicating critical messages about stigma
  • Street festivals using campaign ambassadors and linking to community radio
  • Developing a bi-monthly community stigma index bulletin (coordinated by the Stigma Reduction Steering Group) to share community stories.

Scope Of Work For The IPOS

  • To promote support for PLHIV and people infected with TB and other marginalised groups.
  • To identify and appoint 15 campaign ambassadors to be the face of the campaign.
  • Identify and train 4 community cadres (Community Mobilisers and Campaign ambassadors) to carry out S&D Reduction Programmes.
  • Hold 1 workshop to capacitate community mobilisers and campaign ambassadors to implement the programme. 
  • Establish Community Stigma & Discrimination Groups and a plan of action.
  • Responsible for assisting communities to conceptualise these events and monitoring them.
  • Carry out Stigma and Discrimination Reduction Awareness Campaign activities (local actions) such as Know Your Rights campaigns.
  • Manage the disbursement of budget to these community events.
  • Collect and collate data based on data collection forms developed.
  • Develop narrative reports.

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