Hiring, training, and supporting Peer Research Associates: Operationalizing community-based research principles within epidemiological studies by, with, and for women living with HIV

Harm Reduction Journal

On behalf of the CHIWOS Research Team¹  Nadia O’Brien²  Alexandra de Pokomandy²  Karène Proulx-Boucher²  Johanna Lewis³  Allison Carter⁴  Valerie Nicholson⁴  Jo Lemay⁴  Rebecca Gormley⁴  Angela Kaida⁴  Mélina Bernier⁵  Saara Greene⁶  Jamie Thomas-Pavanel⁷  Anita Benoit⁷  Mona Loutfy⁷  Wangari Tharao⁸ 

[1] ;Chronic Viral Illness Service, McGill University Health Centre;Department of History, York University;Faculty of Health Sciences, Simon Fraser University;Faculty of Nursing, University of Montreal;School of Social Work, McMaster University;Women’s College Research Institute, Women’s College Hospital;Women’s Health in Women’s Hands;

关键词: HIV;    Women;    Community-based research;    Training;    Peers;    Harm reduction;   

DOI  :  10.1186/s12954-019-0309-3

来源: DOAJ

【 摘 要 】

Abstract Background A community-based research (CBR) approach is critical to redressing the exclusion of women—particularly, traditionally marginalized women including those who use substances—from HIV research participation and benefit. However, few studies have articulated their process of involving and engaging peers, particularly within large-scale cohort studies of women living with HIV where gender, cultural and linguistic diversity, HIV stigma, substance use experience, and power inequities must be navigated. Methods Through our work on the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS), Canada’s largest community-collaborative longitudinal cohort of women living with HIV (n = 1422), we developed a comprehensive, regionally tailored approach for hiring, training, and supporting women living with HIV as Peer Research Associates (PRAs). To reflect the diversity of women with HIV in Canada, we initially hired 37 PRAs from British Columbia, Ontario, and Quebec, prioritizing women historically under-represented in research, including women who use or have used illicit drugs, and women living with HIV of other social identities including Indigenous, racialized, LGBTQ2S, and sex work communities, noting important points of intersection between these groups. Results Building on PRAs’ lived experience, research capacity was supported through a comprehensive, multi-phase, and evidence-based experiential training curriculum, with mentorship and support opportunities provided at various stages of the study. Challenges included the following: being responsive to PRAs’ diversity; ensuring PRAs’ health, well-being, safety, and confidentiality; supporting PRAs to navigate shifting roles in their community; and ensuring sufficient time and resources for the translation of materials between English and French. Opportunities included the following: mutual capacity building of PRAs and researchers; community-informed approaches to study the processes and challenges; enhanced recruitment of harder-to-reach populations; and stronger community partnerships facilitating advocacy and action on findings. Conclusions Community-collaborative studies are key to increasing the relevance and impact potential of research. For women living with HIV to participate in and benefit from HIV research, studies must foster inclusive, flexible, safe, and reciprocal approaches to PRA engagement, employment, and training tailored to regional contexts and women’s lives. Recommendations for best practice are offered.

【 授权许可】

Unknown