Welcome to the Pacific AIDS Network’s summer review of What’s HOT in HIV Research! In this edition we are going to take a look at contributions by our organization and some of our partners to the Canadian Association for HIV Research (CAHR) 2014 Conference in St. John’s Newfoundland.
PAN, in partnership with the Positive Women’s Network (PWN), developed a poster titled: Positive Women’s Leadership Training: fostering individual and community growth.The poster highlights the peer leadership training offered by PAN, in partnership with PWN. From June 2011 to May 2014, 40 HIV+ women from across BC’s regions completed the leadership training. The goal is to support women to realize their leadership potential and increase their capacity to participate meaningfully in community life. Participants report significant positive changes as a result of the training.
a) Canadian HIV Women’s Sexual and Reproductive Health Cohort Study’s (CHIWOS) Presentation: Hiring, training, and supporting peer researchers: Operationalizing community-based research principles within epidemiological studies by, with, and for women living with HIV
This presentation highlights a process of peer engagement, particularly across large-scale, national cohort studies. In this type of study gender, cultural and linguistic diversity, and on-going discrimination and power inequities must be navigated. The presentation:
- Describes a national strategy of hiring, training, and supporting women living with HIV as Peer Research Associates (PRAs) within CHIWOS;
- Reflects on challenges and opportunities; and
- Offers recommendations for best practices.
To reflect the diversity of women living with HIV in Canada, CHIWOS hired 38 PRAs of varying skills and experiences, across British Columbia, Ontario, and Québec, with a hiring process that prioritized women historically under-represented in research. Building on PRAs’ lived experience, research capacity was supported through a multi-phase experiential training curriculum.
CHIWOS has also developed PRA training materials.
b) CHIWOS Presentation: “You know exactly where you stand in line…it’s right at the very bottom of the list”: Negotiating place and space among women living with HIV seeking health care in British Columbia, Canada
Health services research conventionally defines place in terms of how close you are to care. However, the notion of ‘place’ must also include the social and physical spaces that influence how people experience place. Drawing on focus group data from CHIWOS, the team explored how 28 women living with HIV navigate ‘place’ and ‘space’ in attempting to access health care within and across the full range of urban to rural localities throughout British Columbia, Canada.
Women expressed frustration with the centralization of healthcare within urban centres and the time, costs, and other trade-offs associated with travelling to care sites. Place-based barriers were made stronger by intersecting social factors (e.g., poverty, childcare, work demands) and affected women’s access to care.
Particularly striking, however, was that women’s experiences of the ‘spaces’ where they seek care emerged as the most defining barrier to healthcare. Women highlighted how existing services, even if physically close, can be socially marginalizing as they confront stigma, racism, sexism, and classism. This works to exclude women from the places and spaces they must access for care. However, women employed strategies to actively resist marginalization by rejecting available services and relying on self-care to manage their healthcare needs. Women also highlighted the role of peer support and virtual communities, which support women to overcome geographical and social-spatial barriers and create their own spaces.
Overall, the complexities that surround the delivery of HIV care for women living with HIV in BC cannot be addressed without first understanding their environment – that is, the geographical, social and political places and spaces in which women occupy.
Dr. Peter Centre and BC Centre for Excellence in HIV/AIDS gave a presentation titled: GIPA in Practice: Community Leadership Guides the Development of an Inclusive, Transparent & Accessible PRA Hiring Process
The lack of available protocols for hiring Peer Research Associates (PRAs) presents a challenge to health services organizations engaging HIV/AIDS related Community-Based Research (CBR). Founded on the principles of the Greater Involvement of People Living with HIV/AIDS (GIPA), the Dr. Peter Centre (DPC) sought to address this knowledge gap by utilizing the guidance of community members’ expertise and lived experiences to develop an inclusive, transparent and accessible PRA hiring process for The Dr. Peter Study.
The DPC sought to engage community members living with HIV who had lived experiences in common with clients, such as those who have faced socio-economic, psychosocial and/or behavioral barriers to treatment and care. The Community Advisory Committee (CAC) members served as community advocates in the development of our low-threshold recruitment and communication tools and strategies to help generate thoughtful, emotionally aware and culturally appropriate hiring materials and processes such as a plain language job posting and a simplified application process. Any perceived barriers, such as conventional requirements for resumes or previous experience, were removed from the job description to promote inclusion. Instead, this process emphasized attributes that were expressed by community to directly impact applicants’ ability to meaningfully and respectfully engage with the DPC population, such as lived experience and commitment to the position. To help assess these characteristics, and provide community voice and perspective throughout, a member from theCAC who is also a DPC client was directly involved in conducting interviews for the final candidate selection.
This team found that creating this type of process that considered the specific needs and input of our community cultivated an in-depth understanding of community values across the wider research team and reinforced the overall CBR process.
4. CIHR CBR Collaborative – Working to set CBR Research Priorities
CIHR CBR Collaborative – poster: Channeling CBR Potential: Setting HIV/AIDS Community-Based Research Priorities in Communities Across Canada
The CIHR CBR Collaborative (a program of REACH) is a vibrant and sustainable national network fostering rigorous, relevant community-based research that will improve the health and well-being of people affected by HIV/AIDS across Canada. In order to strengthen regional partnerships and community voice, the CBR Collaborative conducts regional consultations to identify research and CBR capacity-building priorities across the country. In British Columbia this process is led by the BC Core Team – a small, multi-disciplinary group. This poster presented at CAHR, describes these processes and the work of the CBR Collaborative.
Questions? Feedback? Get in touch! Janice Duddy, CBR Grants and Partnership Coordinator [email protected]