1. Washington D.C., USA, 22-27 July 2012www.aids2012.org Considerations of including ACB women in CBR research Presented by: Marvelous Muchenje Women’s Health in Women’s Hands CHC

2. Washington D.C., USA, 22-27 July 2012www.aids2012.org No conflict of Interest

3. Washington D.C., USA, 22-27 July 2012www.aids2012.org 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. Washington D.C., USA, 22-27 July 2012www.aids2012.org 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. Washington D.C., USA, 22-27 July 2012www.aids2012.org 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. Washington D.C., USA, 22-27 July 2012www.aids2012.org 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. Washington D.C., USA, 22-27 July 2012www.aids2012.org 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. Washington D.C., USA, 22-27 July 2012www.aids2012.org 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. Washington D.C., USA, 22-27 July 2012www.aids2012.org 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. Washington D.C., USA, 22-27 July 2012www.aids2012.org 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. Washington D.C., USA, 22-27 July 2012www.aids2012.org 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. Washington D.C., USA, 22-27 July 2012www.aids2012.org 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

13. Washington D.C., USA, 22-27 July 2012www.aids2012.org