Considerations of including ACB women in CBR research

1. Considerations of including ACB women in CBR research Presented by: Marvelous Muchenje Women’s Health in Women’s Hands CHC

2. No conflict of Interest

3. Challenges of involving ACB women living with HIV in CBR • In most cases ACB WLWH participate in Community-based studies that are driven by academic researchers • No accommodations are made to ensure effective participation • Processes for involvement are pre-determined by researchers • Involvement is usually in the form of advisory committee members • This results in disempowerment, frustration and distrust of researchers and research processes

4. Challenges of involving ACB women living with HIV in CBR (cont…..) • Lack of representation of diverse perspectives of ACB women living with HIV • Diversity in socio-cultural beliefs, values, norms and practices • Multiple gendered dimensions – LGBTQ • Multiplicity of languages/Linguistic barriers • Stigma and discrimination • Confidentiality and privacy issues • Mistrust of research and research process • Historical experiences of colonialism/slavery/mistrust of bureaucratic institutions

5. Challenges of involving ACB women living with HIV in CBR (cont…..) • Suitability of research tools • There seems to be a lack of appropriate HIV-rated questionnaires and scales for communities in the African/Caribbean Diaspora • Although various tools have been produced for populations in African countries, they are not always applicable for communities that have relocated to Canada • Lack of research capacity to conduct CBR • Insufficient network of recruiters • Poor community incentives • In-appropriate interview sites e.g. ASOs

6. MIWA Women's Specific CBR Model in African, Caribbean and Black Communities • Building an infrastructure of support that would sustain ACB women’s involvement in research post the research project • ACCHO • CHABAC • WHIWH • Selection of stakeholders of research including research team members, community advisory committee members, peers and collaborators of research

7. Education Component • Training is an effective way to harness the inherent knowledge and wisdom of ACB communities, building of HIV knowledge and research capacity • Training to include: • Framework of search – anti-oppression, social justice, determinants of health, etc. • Problem defining • Research design and methodology • Research implementation • Analysis and interpretation • Knowledge exchange and translation into action • Training to take into consideration: • Education levels of participants and learning approaches • Tools to support learning • Role of research in lives of HIV-positive women

8. Education Component ( cont…) • Integrate the skills of women and capitalize on their knowledge • Most ACB women are highly educated and have experience in HIV/AIDS activism, they can easily be trained as co-facilitators • Researchers should learn to communicate effectively with the community using appropriate language and literacy levels

9. Execution Component • A cross sector community partnership model that emphasizes ownership, empowerment and builds on existing infrastructure • Flexibility to allow involvement of women at different stages. • WLWH can be mentored in: • Writing research support letters • Completing CVs • Analyze qualitative and quantitative data using computer based data analysis programs: • Nvivo, SPSS • Developing abstracts, presentations/presenting at conferences • Reading and writing manuscripts

10. Execution component (cont…) • Appropriate gatekeepers/links within the community should be trained, mentored and be involved in the development of CBR projects • Mistrust of research and research process – gatekeepers should be mentored in recruitment procedures, as they are the ones who can build or break the research project • Peers should trained to support implementation of research appropriately

11. Consultancy component • Although most ACB WLWH are educated, they are not gainfully employed • Hiring and reimbursing WLWH as consultants for time spent on project • Reciprocal appreciation of each other’s knowledge and skills at each level of the project should be acknowledge • Funding should be included in research proposals to cover community members expenses including childcare, transportation and time spent on project.

12. Conclusion • Meaningfully involvement of ACB WLWH in CBR is critical to support MIWA • Research projects need to build in resources to recognize WLWH’s contribution in research • Mentorship should reciprocal – both parties should learning from each other • MIWA should ensure integration of anti-oppression principles, social determinates of health to facilitate ACB women’s involvement in research