Meaningful involvement of people affected by HIV
When your organization decides to start HIV self-test kit distribution, it's important to prioritize the meaningful involvement of the communities disproportionately affected by HIV in the development and delivery of your approach. This includes people living with HIV; gay, bisexual and queer+ guys; people who use drugs; as well as Indigenous people and African, Caribbean and Black communities, including a disproportionate number of women from these communities. Work should be grounded in the principles of Meaningful Engagement of People Living with HIV (MEPA), Greater Involvement of People Living with HIV (GIPA) and "nothing about us without us." Committing to these principles throughout the community consultation process, program development and program delivery demonstrates a dedication to inclusivity and empowerment. Recognizing that meaningful engagement is vital for effective decision-making and action, these processes require time and careful attention to the unique needs of the populations you aim to engage, including cultural competency, community leadership and a commitment to collaboration.
“Include lived experience in planning and leadership” – Dialogue participant
“Why are you doing it? Who are you doing it for? And how have you meaningfully involved those community members?” – Dialogue participant
Below are some practice-based recommendations for you to consider when determining how to meaningfully engage the communities that you serve in community consultations and program delivery.
Practice-based recommendations:
Community consultations
1. Conduct community consultations at every stage of decision-making and planning to ensure sustainable, accessible, inclusive and community-driven approaches to HIV self-test kit distribution.
2. Consult documents with relevant guidance before you begin community consultations, such as the following:
- Truth and Reconciliation Commission of Canada: Calls to Action when working with Indigenous communities
- GIPA and MEPA principles as outlined in the Paris Declaration+20 and UNAIDS GIPA Policy Brief when working with people living with HIV
- Peer Engagement Principles and Best Practices and Hear Us, See Us, Respect Us guidance when working with people who use drugs
3. Create an engagement strategy to effectively reach the communities that you serve (e.g., people living with HIV, people who use drugs, gay men, Indigenous people) for consultation. To minimize the burden of consultation on a community, consider opportunities to leverage existing advisory committees or partnerships.
4. Leverage the knowledge and expertise from the communities that you serve by collaborating with them to brainstorm and develop strategies to improve community engagement. For example, when working with Indigenous communities, ensure Indigenous collaborators design engagement and consultation processes that reflect appropriate community practices and approaches to consultation. Focus on decolonizing consultation approaches to ensure they are relevant and relatable to community members.
5. Ensure that community consultations foster trust, accountability and transparency, to lay the foundation for collaborative and impactful initiatives.
6. Ensure that community consultations seek to dismantle power imbalances and promote equity.
Program delivery
1. Incorporate individuals from the communities you serve into planning and staff roles, including leadership positions, to harness their valuable insights and perspectives, thereby guiding program design and implementation.
2. Empower staff from the communities that you serve to participate in decision-making processes and service delivery.
3. Ensure equitable compensation for staff from the community by providing a fair and sustainable living wage. Longer term contracts should be considered to allow staff the opportunity to develop their skills and foster relationships within the community.
4. Foster trust and comfort among the communities you serve by hiring staff from the same communities to provide support and guidance during the testing process.
5. Train community staff members to promote and implement the distribution of self-testing kits, equipping them with the necessary skills to foster open discussion, and provide accurate information about the self-test.
6. Provide community staff members with a suite of consistent and ongoing supervision and peer-to-peer supports.
7. Hire individuals living with HIV. Storytelling, education and support delivered by people living with HIV can destigmatize testing, emphasize that individuals can live well with HIV and highlight the importance of treatment in empowering individuals to take control of their health.
8. Collaborate with community leaders, including Elders, from outside of your organization to ensure staff from the community are supported and that programs and delivery methods are designed and delivered in a manner that honours their culture, traditional practices and values.