Considerations of including ACB
women in CBR research
Presented by:
Marvelous Muchenje
Women’s Health in Women’s Hands CHC
www.aids2012.org
Washington D.C., USA, 22-27 July 2012
No conflict of Interest
www.aids2012.org
Washington D.C., USA, 22-27 July 2012
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
www.aids2012.org
Washington D.C., USA, 22-27 July 2012
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
www.aids2012.org
Washington D.C., USA, 22-27 July 2012
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
•
•
•
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Lack of research capacity to conduct CBR
Insufficient network of recruiters
Poor community incentives
In-appropriate interview sites e.g. ASOs
www.aids2012.org
Washington D.C., USA, 22-27 July 2012
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
www.aids2012.org
Washington D.C., USA, 22-27 July 2012
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
www.aids2012.org
Washington D.C., USA, 22-27 July 2012
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
www.aids2012.org
Washington D.C., USA, 22-27 July 2012
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
www.aids2012.org
Washington D.C., USA, 22-27 July 2012
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
www.aids2012.org
Washington D.C., USA, 22-27 July 2012
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.
www.aids2012.org
Washington D.C., USA, 22-27 July 2012
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
www.aids2012.org
Washington D.C., USA, 22-27 July 2012
www.aids2012.org
Washington D.C., USA, 22-27 July 2012