Building capacity in quantitative research and data storytelling to enhance knowledge translation: a training curriculum for peer researchers.

BACKGROUND: Many community-based HIV research studies incorporate principles of greater involvement and meaningful engagement of people living with HIV (GIPA/MEPA) by training people with HIV as peer researchers. Unfortunately, there are still some aspects of research (e.g., quantitative data analysis and interpretation) where many projects fall short in realizing GIPA/MEPA principles. To address these gaps, we developed an eight-week training course that aimed to build the capacity of peer researchers around the understanding and interpretation of quantitative data and incorporating lived experience to increase the impact of the knowledge transfer and exchange phase of a study. METHODS: Peer researchers (n = 8) participated from British Columbia, Alberta, and Ontario and lessons learned from the training were implemented throughout the dissemination of research findings from the People Living with HIV Stigma Index study. This paper presents the curriculum and main training components, course evaluation results, and challenges and lessons learned. The manuscript was created in collaboration with and includes the perspectives of both the peer researchers involved in the training, as well the course facilitators. RESULTS: Throughout the course, peer researchers' self-assessed knowledge and understanding of quantitative research and data storytelling improved and, through interactive activities and practice, they gained the confidence to deliver a full research presentation. This improved their understanding of research findings, which was beneficial for discussing results with community partners and study participants. The peer researchers also agreed that learning about integrating lived experience with quantitative data has helped them to make research findings more relatable and convey key messages in a more meaningful way. CONCLUSIONS: Our training curriculum provides a template for research teams to build capacity in areas of research where peer researchers and community members are less often engaged. In doing so, we continue to uphold the principles of GIPA/MEPA and enhance the translation of research knowledge in communities most greatly affected.

Engaging patient groups or community members is commonplace in HIV research where people living with HIV are trained as peer researchers. There are still however some gaps where community members are less engaged, especially in quantitative data analysis. This presents a barrier preventing them from being meaningfully engaged in research about them. To build capacity in these areas, we designed an eight-week online course that taught peer researchers about quantitative data analysis and interpretation with a focus on concepts that would be important for talking about key messages from research findings. This was used to enhance the knowledge translation and dissemination initiatives for the People Living with HIV Stigma Index study­a survey tool containing quantitative measures examining stigma and related health factors. Peer researchers agreed that their knowledge and understanding of the key quantitative data concepts improved significantly throughout the course. This increased understanding helped them discuss quantitative data with community members and study participants, which was important to ensure that research findings reach the affected communities. Peer researchers also agreed that incorporating their new data analysis knowledge with existing lived experience helped them to make findings more relatable and understandable which is critical for translating knowledge to other researchers and policy makers. Overall, our training curriculum gave peer researchers the confidence to talk about quantitative data and improve their capacity to disseminate research. This work also provides guidelines for training peer researchers and ensuring that they are meaningfully engaged in research studies they are a part of.

Development and Implementation of Peer Leader Training for Community-Based Participatory Sexual Health Research.

BACKGROUND: Building the collective capacity of racialized women to meaningfully lead and engage in research is critical to health equity. To address the silence and stigma related to HIV/sexually transmitted infections (STIs) among South Asian women in Canada, peer leadership and engagement were identified as important strategies to promote open discussion about sexual health. OBJECTIVES: Underpinned by the principle of 'nothing about us without us', the objectives of the Story Sharing for Sexual Health (SSSH) research study included engaging and training South Asian women peer leaders to become an integral part of the study and build community research capacity. To achieve these objectives, it was critical to support the peer leaders in gaining a thorough understanding of the research ethics, protocols and teamwork principles, and to consolidate skills in group facilitation and community engagement. METHODS: The peer leaders attended four full-day training sessions on the social determinants of health and gender equity for racialized populations, HIV/STI and sexual health in the context of South Asian communities, community-based participatory research (CBPR) principles, skills in focus group facilitation, community partnerships building, and storytelling epistemologies. A training manual was developed. Evaluation of the training program included 1) evaluation forms, 2) process evaluations through journal writing and feedback sessions, and 3) implementation outcomes. CONCLUSIONS: The SSSH peer research training program was effective. Peer leaders demonstrated effectiveness in liaising with partner agencies, engaging South Asian women in sexual health discussion, completing CBPR activities and team building. Knowledge generated can be applied in CBPR with other racialized women populations.

Exploring the use of fact-based and story-based learning materials for HIV/STI prevention and sexual health promotion with South Asian women in Toronto, Canada.

Story-based learning is well recognized as an effective strategy for adult health education. However, there is a scarcity of research on story-based health education among women in South Asian diasporic communities. To address this gap, we undertook a pilot study in Toronto to explore how South Asian women respond to the use of fact-based and story-based materials for HIV/STI prevention. A total of 78 women were recruited from across the city. We engaged nearly half of the women (n=40) using fact sheets on HIV/STIs, and the remainder (n=38) using stories written by South Asian women on HIV/STIs. Surveys and focus groups were used to explore participants' responses in terms of knowledge, attitudes and perspectives. Results indicated that both approaches were effective in increasing participants' knowledge of HIV/STIs. Participants in the fact-based sessions tended to distance themselves from the idea of personal HIV/STI risks. Participants in the story-based groups were emotionally engaged, expressing personal commitments to take a stand against HIV stigma. In summary, within-culture stories are potentially effective tools that enable women to make sense of their own life situations and contextual vulnerabilities. Story-based materials are useful for breaking the silence of taboo topics, addressing stigma and discrimination and raising awareness about collective empowerment.

High rates of posttraumatic stress symptoms in women living with HIV in Canada.

PURPOSE: Women living with HIV experience high levels of trauma exposure before and after diagnosis. One of the most challenging outcomes following trauma exposure is posttraumatic stress disorder. Despite high exposure to traumatic events, the presence and contributors to posttraumatic stress disorder symptoms have not been examined in women living with HIV in Canada. METHODS: The current study examines the presence of, contributors to, and geographical regions associated with self-reported posttraumatic stress symptoms (PTSS) among 1405 women enrolled in the Canadian HIV Women's Sexual & Reproductive Health Cohort Study (CHIWOS). RESULTS: Separate linear regression models were run for the three provinces in the cohort: British Columbia, Ontario and Québec. Scores consistent with posttraumatic stress disorder were reported by 55.9%, 39.1% and 54.1% of the participants in each province, respectively (F(2, 1402) = 13.53, p < .001). CONCLUSIONS: The results demonstrate that women living with HIV have high rates of PTSS, and that rates and variables associated with these symptoms vary by province. These results suggest the need for trauma-informed practices and care for women living with HIV in Canada, which may need to be tailored for the community and identities of the women.

Decolonizing Scoping Review Methodologies for Literature With, for, and by Indigenous Peoples and the African Diaspora: Dialoguing With the Tensions.

This article summarizes our deepened understanding of decolonizing research with, for, and by Indigenous peoples and peoples of African descent that emerged from conducting a scoping review of the methodological literature and reflecting on our review process. Although our review identified decolonizing methodologies as a promising approach, we questioned if our scoping review process engaged in decolonizing knowing. To unpack the epistemological tensions between decolonizing knowing and Western ways of doing scoping reviews, we engaged in individual and collective reflective processes- dialoguing with the tensions-moving from individual immersion in the literature to transformative dialogues among the team. In reflecting upon our tensions with the scoping review process, themes that emerged included (a) ontological/epistemological disjunctures, (b) tensions with concepts and language, and (c) relationships with the literature and beyond. This reflexive process provides valuable insight into ways in which review methods might be made a decolonizing research experience.

Stigma, HIV and health: a qualitative synthesis.

BACKGROUND: HIV-related stigma continues to negatively impact the health and well-being of people living with HIV, with deleterious effects on their care, treatment and quality of life. A growing body of qualitative research has documented the relationship between HIV-related stigma and health. This review aims to synthesize qualitative evidence that explored the intersections of stigma and health for people with HIV. METHODS: A thematic summary was conducted that was guided by the qualitative metasummary technique developed by Sandelowski and Barraso. Literature searches yielded 8,622 references of which 55 qualitative studies were identified that illustrated HIV-related stigma in the context of health. RESULTS: The metasummary classified qualitative findings into three overarching categories: conceptualizing stigma which identified key dimensions of HIV-related stigma; experiencing stigma which highlighted experiences of stigma in the health context, and managing stigma which described ways in which stigma is avoided or addressed. To better illustrate these connections, the qualitative literature was summarized into the following themes: stigma within health care settings, the role of stigma in caring for one's health, and strategies to address HIV-related stigma in the health context. A number of health care practices were identified--some rooted in institutional practices, others shaped by personal perceptions held by practitioners--that could be stigmatizing or discriminatory towards people with HIV. There existed interconnections between enacted stigma and felt stigma that influenced health care utilization, treatment adherence, and overall health and well-being of people with HIV. Intersectional stigma also emerged as instrumental in the stigma experiences of people living with HIV. A number of strategies to address stigma were identified including social support, education, self-efficacy, resilience activities, and advocacy. CONCLUSION: This review of the qualitative evidence indicates that HIV-related stigma within health contexts is a broad social phenomenon that manifests within multiple social spheres, including health care environments. Findings from this review indicate that future stigma research should consider the social structures and societal practices--within and outside of health care environments--that perpetuate and reinforce stigma and discrimination towards people with HIV.

Systematic review of stigma reducing interventions for African/Black diasporic women.

INTRODUCTION: Literature indicates that racism, sexism, homophobia and HIV-related stigma have adverse impacts on health, well-being, and quality of life among HIV-positive women of African descent (African/Black diaspora). However, limited evidence exists on the effectiveness of interventions aimed at reducing stigma tailored for these women. This study systematically reviewed randomized controlled trials (RCTs), non-randomized observational and quasi-experimental studies evaluating the effectiveness of interventions aimed at reducing stigma experienced by this population. METHODS: The Cochrane methodology was used to develop a search strategy in consultation with a librarian scientist. Databases searched included the Cochrane Library, Ovid EMBASE, PsycInfo, and 10 others. Two reviewers independently assessed the studies for potential relevance and conducted the Cochrane grading of RCTs to assess risk of bias and the Newcastle-Ottawa scale to assess the quality of non-randomized studies. Eligible papers were selected if they employed an intervention design with African/Black diasporic women living with HIV as the target population and had a primary outcome of stigma reduction. RESULTS: Of the five studies that met all of the eligibility criteria, four demonstrated the effectiveness of interventions in reducing HIV-related stigma. Only two of the five studies were designed specifically for HIV-positive African/Black diasporic women. Limitations included the absence of interventions addressing other forms of stigma and discrimination (e.g. gender discrimination, racism, heterosexism). CONCLUSIONS: Our findings suggest that there are limited interventions designed to address multiple forms of stigma, including gender and racial discrimination, experienced by HIV-positive African/Black diasporic women.

Evidence informing the intersection of HIV, aging and health: a scoping review.

The growing number of people over age 50 with HIV requires research, policy, and practice to develop a more comprehensive understanding of the health consequences of HIV in older individuals. We conducted a scoping review of peer-reviewed and grey literature published since 1996 to explore the impacts of aging on the health of older people with HIV (50 years or older). We included 209 studies (two systematic reviews, 174 quantitative studies, 28 qualitative studies, and five mixed methods studies). Health topics addressed include: HIV- and aging-related comorbidities, disease progression, neurocognitive functioning, mental health conditions, psychological well-being, social supports, stigma, antiretroviral adherence, health care utilization/access, and sexual risk behaviour. We recommend that future research takes a broader view of health, looks at aging from a strength-based perspective and examines the issue using diverse perspectives (i.e., geographic location, multiple methods, time of diagnosis, time on antiretroviral therapy (ART), demographic diversity).