Breaking stigma and misconceptions in Uganda

By Arafat Bwambale

Great Lakes Peace Center (GLPC) is an organisation based in Rwenzori-Kasese, in the western region of Uganda. Their work involves advocating to different stakeholders, including local, regional and national leaders, government ministers and members of parliament to allocate budgets to combat hepatitis B and C. GLPC provides testing, information and linkage to care to rural communities in the Rwenzori Region. Additionally, GLPC champions efforts to raise awareness in schools, markets, places of worship and cultural institutions. The center targets different areas such as: breaking stigma and misconceptions, reducing barriers to diagnosis, informing people about the risks associated with hepatitis and encouraging the community to seek early medical services in order to reach all demographics within Kasese, and the Rwenzori Region as a whole.

The campaign

The project aimed to actively reach out to different demographics in the community and make it as easy as possible for them to understand information regarding viral hepatitis (sharing information about hepatitis B and C and disseminating educational communication materials).

We first targeted young people as we felt they were more open to being educated about hepatitis and could become strong advocates once they were informed about the severity of the issue. However, due to the COVID-19 restrictions, we were unable to go directly into schools. We decided that we would reach out to young people via social mediaUsing social media, we promoted hepatitis awareness through information translated from English into local languages and routinely shared other forms of information regarding hepatitis. Additionally, we worked with Makerere University to promote advocacy and information-sharing at the annual Peace-Jam programme. Peace-Jam is a platform for discussion and dialogue to influence students’ behaviours through learning at universities and high schools nationwide. We targeted students and staff members through an awareness drive consisting of leaflets and pop-up banners. Our team was also present to answer any of their questions regarding hepatitis.

Language is a huge barrier to diagnosis, especially in areas that are already hard to reach, allowingroom for misconceptions and stigma. Many people are unaware of the severity of hepatitis, and improving awareness around the issue is difficult when it is not communicated in the local language. We decided to tackle this by developing materials in the local languages of Kiswahili, Runyakitara, Lhukonzo, Luganda and Lugbara to ensure that people are able to understand what hepatitis is, how to tackle it and how to prevent it. The materials were created by our staff members with medical backgrounds. By providing accurate information in local languages, we are not just tackling stigma but also saving lives. We found that when you speak to someone in a foreign language, you are speaking to their head, but when you speak in their local language you are speaking to their heart. This is what helps drive change.

By translating information, providing testing and carrying out outreach programmes in partnership with existing health facilities, we have become a beacon of hope for the people within the community. By breaking down the language barriers, we have empowered the people of Rwenzori Region, especially Kasese District, to hold their leaders accountable. This has put pressure on the local government to commit budget to policies that accommodate our interests. Furthermore, due to our presence within the community and online, we have been able to raise awareness of hepatitis on a large scale at the national and global level. This has resulted in members of staff being invited to discuss hepatitis plans with political leaders, prominent families within the region and healthcare professionals. Through all these advocacy efforts, the Ugandan government allocated $1 million to expand the immunisation programme.

Top tips for success

  • Have a team that is passionate about the cause. All our staff are volunteers, and the majority are from the Rwenzori region Kasese with huge social capital and influence in the region. We work with a well-established family in the region that has a personal connection to the area and wants to contribute towards its progression and improve the lives of its people. We wanted to make personal contributions to provide local solutions to our community and the Rwenzori region at large.
  • Know your demographic. We are a youth-led organization so we are leveraging on demographic dividends as we are aware that largely our population is young. We actively find young people in their own spaces where they are comfortable and make information accessible to them.
  • Digital migration has a major impact on the success of the programme as we are able to reach a much wider demographic, especially in areas that are physically hard to reach.
  • Young people have embraced technology and we have huge following on our social media platforms. This makes us able to share education and communication materials to a wider audience.

Achievements to date

Breaking the myths surrounding hepatitis through creating a source of knowledge that individuals can actually use.

  • Translated key messages on viral hepatitis and translating the patient charter into the local language. This allows patients to hold leaders accountable, so they know what should be provided to them and to what they are entitled.
  • Helped approximately 7,200 young people per year, including expectant mothers.
  • Created a volunteer team to deliver medicines and offer psychological support to the community members living with hepatitis. The team travelled on foot, by bicycles and motorcycles during the COVID19 pandemic lockdown to deliver these services.
  • Set up telephone lines in case patients need our services.
  • Created a community of hepatitis champions in both schools and at the community level to enhance hepatitis elimination efforts.

Challenges

  • Inadequate funding made it difficult to carry out all advocacy plans.
  • Overcoming common misconceptions regarding hepatitis in the community.
  • Lack of knowledge among health care workers.
  • Majority of funding being allocated to the COVID-19 relief.
  • Gaining the trust of people who have consistently been ostracised by society.

Key learnings

  • Success lies in enabling young people to bring their issues to the table.
  • Identify the most vulnerable groups and target them in their spaces, do not wait for them to come to you.
  • You must leave your comfort zone in order the reach hard to reach demographics.
  • People who live with viral hepatitis need to know that they are not alone.

“I will spend my last atom of energy raising the profile of awareness about hepatitis B.”

Arafat Bwambale 

For more information please contact Arafat Bwambale at bwambalearafat@yahoo.com