Lessons from a community-based participatory research study with transgender and gender nonconforming youth and their families

2018 ◽  
Vol 17 (2) ◽  
pp. 186-207 ◽  
Author(s):  
Sabra L Katz-Wise ◽  
Annie Pullen Sansfaçon ◽  
Laura M Bogart ◽  
Milagros C Rosal ◽  
Diane Ehrensaft ◽  
...  
Keyword(s):  
Participatory Research ◽  
Community Based Participatory Research ◽  
Well Being ◽  
Research Process ◽  
Lessons Learned ◽  
Community Partner ◽  
Community Members ◽  
Community Based ◽  
Gender Nonconforming ◽  
And Gender

Community-based participatory research (CBPR) involves community members collaborating with academic investigators in each step of the research process. CBPR may be especially useful for research involving marginalized populations with unique perspectives and needs. In this paper, we discuss successes and challenges of using a CBPR approach for the Trans Teen and Family Narratives Project, a longitudinal mixed-methods study to examine how the family environment affects the health and well-being of transgender and gender nonconforming youth. We describe considerations for using a CBPR approach with this population, including defining the community of transgender and gender nonconforming youth and families, engaging the community in the research process, managing conflicting agendas for community partner meetings, addressing insider/outsider status of the researchers, resolving researcher/community tensions regarding data collection tools, integrating academic and community members into a cohesive research team, developing safety plans to address participant suicidality disclosures, and differentiating the role of academics as researchers vs. advocates. We conclude by sharing lessons learned, which can inform future research to address the needs of transgender and gender nonconforming youth and families.

scholarly journals Voices of Community Partners: Perspectives Gained from Conversations of Community-Based Participatory Research Experiences

2020 ◽  
Vol 17 (14) ◽  
pp. 5245 ◽  
Author(s):  
Heather J. Williamson ◽  
Carmenlita Chief ◽  
Dulce Jiménez ◽  
Andria Begay ◽  
Trudie F. Milner ◽  
...  
Keyword(s):  
Participatory Research ◽  
Community Based Participatory Research ◽  
Lessons Learned ◽  
Cultural Humility ◽  
Consensus Method ◽  
Community Partner ◽  
Open Communication ◽  
Community Based ◽  
Community Partners ◽  
Underserved Communities

Community-based participatory research (CBPR) has been documented as an effective approach to research with underserved communities, particularly with racial and ethnic minority groups. However, much of the literature promoting the use of CBPR with underserved communities is written from the perspective of the researchers and not from the perspective of the community partner. The purpose of this article is to capture lessons learned from the community partners’ insight gained through their experiences with CBPR. A multi-investigator consensus method was used to qualitatively code the transcripts of a CBPR story-telling video series. Seven major themes were identified: (1) expectations for engaging in research, (2) cultural humility, (3) respecting the partnership, (4) open communication, (5) genuine commitment, (6) valuing strengths and recognizing capacities, and (7) collaborating to yield meaningful results. The themes drawn from the community partner’s voice align with the tenets of CBPR advanced in the academic literature. More opportunities to include the community voice when promoting CBPR should be undertaken to help introduce the concepts to potential community partners who may be research cautious.

Community-Based Participatory Research

2013 ◽  
Author(s):  
Tracey Marie Barnett
Keyword(s):  
Action Research ◽  
Participatory Research ◽  
Community Based Participatory Research ◽  
Research Process ◽  
Collaborative Action Research ◽  
Participatory Action ◽  
Community Members ◽  
Community Based ◽  
Community Based Research ◽  
Partnership Approach

Community-based participatory research (CBPR) embraces a partnership approach to research that equitably involves community members, organizational representatives, social workers, and researchers in all aspects of the research process. CBPR begins with a research topic of importance to the community and has the aim of combining knowledge with action and achieving social change. It is community based in the sense that community members become part of the research team and researchers become engaged in the activities of the community. Community–researcher partnerships allow for a blending of values and expertise, promoting co-learning and capacity building among all partners, and integrating and achieving a balance between research and action for the mutual benefit of all partners. Various terms have been used to describe this research, including participatory action research (PAR), action research (AR), community based research (CBR), collaborative action research (CAR), anti-oppressive research, and feminist research.

Overcoming Barriers: Practical Strategies to Assess Latinos Living in Low-Income Communities

2019 ◽  
Vol 21 (3) ◽  
pp. 355-362 ◽  
Author(s):  
Alejandra Calva ◽  
Rebecca A. Matthew ◽  
Pamela Orpinas
Keyword(s):  
Data Collection ◽  
Participatory Research ◽  
Low Income ◽  
Community Based Participatory Research ◽  
Well Being ◽  
Community Members ◽  
Community Based ◽  
Leverage Points ◽  
Communities Of Interest ◽  
Health And Well Being

The value of community assessments depends on the researchers’ ability to reach a diverse and representative sample of participants. This process is particularly challenging when assessing the health and well-being of vulnerable populations that are reticent to participate in research because of demographic and sociopolitical factors. One such group is Latinxs (the gender-neutral version of Latinos or Latinas) of mixed immigration status who live in low-income, socially and geographically isolated enclaves in the Southeast. Framed by community-based participatory research and social marketing theories, this study describes practical strategies for health researchers, practitioners, and advocates seeking to engage and build trusting relationship within U.S. Latinx communities. First, identify and leverage points of entry to different segments of the communities of interest by engaging meaningful gatekeepers from different sections of the population and searching for places where potential participants gather. Second, reduce the burden of assessments by using incentives and creating intentional reciprocity. Third, establish critical, long-lasting trust with community members, leaders, and allies by adapting data collection procedures, ensuring confidentiality, engaging bilingual facilitators, and most important, being present with and for the community. Finally, presenting the findings back to the community can increase the ownership of the process.

scholarly journals A chair at the table: a scoping review of the participation of refugees in community-based participatory research in healthcare

2021 ◽  
Vol 17 (1) ◽  
Author(s):  
Tali Filler ◽  
Pardeep Kaur Benipal ◽  
Nazi Torabi ◽  
Ripudaman Singh Minhas
Keyword(s):  
Participatory Research ◽  
Scoping Review ◽  
Scale Up ◽  
Community Based Participatory Research ◽  
Final Analysis ◽  
Well Being ◽  
Research Process ◽  
Healthcare Research ◽  
Community Based ◽  
Healthcare Needs

Abstract Background Refugees often face psychosocial complexity and multi-dimensional healthcare needs. Community-Based Participatory Research (CBPR) methods have been previously employed in designing health programs for refugee communities and in building strong research partnerships in refugee communities. However, the extent to which these communities are involved remains unknown. Objective To review the evidence on the involvement of refugees in CBPR processes to inform healthcare research. Methods A scoping review was performed, using Arksey & O’Malley’s methodological framework. A literature search in Medline, PubMed, PsycINFO, CINAHL, Embase, Global Health, Scopus, and Policy File Index for articles published until August 2020 was conducted. Articles were included if they focused on CBPR, had refugee involvement, and discussed healthcare/health policy. Results 4125 articles were identified in the database searches. After removal of duplicates, 2077 articles underwent title and abstract review by two authors, yielding an inter-reviewer kappa-statistic of 0.85. 14 studies were included in the final analysis. The purpose of CBPR use for 6 (42.9%) of the articles was developing and implementing mental health/social support interventions, 5 (35.7%) focused on sexual and reproductive health interventions, 1 (7.1%) focused on domestic violence interventions, 1 (7.1%) focused on cardiovascular disease prevention and 1 (7.1%) focused on parenting interventions. In terms of refugee involvement in the various stages in the research process, 9 (64.3%) articles reported refugees having a role in the inception of the research, no articles reported including refugees in obtaining funding, all articles included refugees in the design of the research study, 10 (71.4%) articles reported having refugees involved in community engagement/recruitment, 8 (57.1%) articles reported involvement throughout the data collection process, 4 (28.6%) articles reported involvement in data analysis, 6 (42.9%) articles reported having refugees involved in knowledge translation/dissemination and 1 article (7.1%) reported having refugees contribute to scale up initiatives. Conclusions CBPR has been identified as a methodology with the potential to make substantial contributions to improving health and well-being in traditionally disenfranchised populations. As the needs of refugee communities are so diverse, efforts should be made to include refugees as partners in all stages of the research process.

Community-Based Participatory Research

2020 ◽  
Author(s):  
Michael Duke
Keyword(s):  
Social Justice ◽  
Participatory Research ◽  
Community Based Participatory Research ◽  
The United States ◽  
Research Process ◽  
Cultural Humility ◽  
Community Members ◽  
Community Based ◽  
Advisory Boards ◽  
Rapport Building

Community-based participatory research (CBPR) refers to a methodological and epistemological approach to applied community projects in which researchers and community members collaborate as equals in the research process. Also known as participatory action research (PAR), CBPR has gained considerable acceptance both as a set of methods for identifying and addressing local issues of concern and as a vehicle for applying the principles of equity, cultural humility, mutual learning, and social justice to the relationships between researchers and communities. Although somewhat distinct from applied anthropology, CBPR shares with ethnography in particular an attentiveness to rapport building and community engagement and an overall validation of local knowledge. There is little consensus regarding the threshold of community participation necessary for a given research project to be considered CBPR. However, at a minimum the approach requires that community members define the problems to be assessed, provide consultation on the cultural and social dimensions of the study population, and serve in an advisory capacity over the entire project. The history of CBPR and its antecedents reflects its twin values as a pragmatic approach to researching and addressing local problems and as an emancipatory social justice project that seeks to diminish the hierarchical relationship between researchers and community members. Specifically, the pragmatic perspective was developed in the United States by social psychologist Kurt Lewin in the 1930s (and subsequently by the anthropologists Laura Thompson and Sol Tax), while the emancipatory approach derives from the work of educational theorist Paulo Freire in Brazil in the 1970s. Community Advisory Boards (CABs) play an outsized role in the success of CBPR projects, since they typically represent the community in these studies, and thus maintain oversight over all aspects of the research process, including the study design, sampling and recruitment protocols, and the dissemination of findings. Accordingly, nurturing and maintaining trust between researchers, the CAB, and the community constitutes a foundational practice for any CBPR study.

scholarly journals Growing a Community-Academic Partnership: Lessons Learned in Forming a Qualitative Interview Team for the Community Partners in Care Study

2018 ◽  
Vol 28 (Supp) ◽  
pp. 365-370
Author(s):  
Gera L. Anderson ◽  
S. Megan Heller ◽  
Esmeralda Pulido ◽  
Phuscedia Williams ◽  
Alisa Orduna ◽  
...  
Keyword(s):  
Participatory Research ◽  
Community Based Participatory Research ◽  
Lessons Learned ◽  
Community Members ◽  
Community Based ◽  
Community Partners ◽  
Building Trust ◽  
Study Participants ◽  
Interview Team ◽  
Care Study

By engaging, partnering, and building trust with community members, research on vul­nerable populations may offer opportunities to improve population health in communi­ties that suffer from health disparities. While the literature on participatory and partnered approaches offers techniques and strategies for forming community-academic partner­ships, less information is available about how partnerships can grow and evolve over time. In this article, we describe the expansion of a long-standing partnership that uses prin­ciples of community partnered participatory research (CPPR), a variant of community-based participatory research (CBPR). We outline the preparation and executive phases of conducting qualitative interviewing with highly vulnerable study participants who have already been participants in a longitu­dinal survey. We describe the challenges and concerns at each phase of the research and summarize some lessons learned. To grow and evolve, the partnership must constantly be reaffirmed in the experiences of new members.Ethn Dis. 2018;28(Suppl 2):365- 370; doi:10.18865/ed.28.S2.365.

scholarly journals Community-Based Participatory Research with Invisible, Geographically-Dispersed Communities: Partnering with Lesbian, Gay, Bisexual, Transgender and Queer Communities on the California Central Coast

2019 ◽  
Vol 11 (1) ◽  
pp. 14-32 ◽  
Author(s):  
Laury Oaks ◽  
Tania Israel ◽  
Kristin J. Conover ◽  
Alise Cogger ◽  
Todd Raymond Avellar
Keyword(s):  
Participatory Research ◽  
Community Based Participatory Research ◽  
Community Action ◽  
Lessons Learned ◽  
Community Research ◽  
Collaborative Partnerships ◽  
Community Members ◽  
Community Based ◽  
Central Coast ◽  
University Partnerships

This article reports on the community-based participatory research (CBPR) process of a 3.5-year studydocumenting lesbian, gay, bisexual, transgender, and queer (LGBTQ) community members’ perceptions oflocal LGBTQ communities on the Central Coast of California. This three-phase study consisted of online andpaper-and-pen surveys to analyze community strengths, challenges, priorities, and feelings of connection;collaborative interpretation of survey results through community forums; and a regional “LGBTQ Summit” toenvision and initiate data-based actions to address community priorities. The focus throughout the project wason establishing collaborative partnerships to plan and guide the project, cultivating community participationin interpreting and disseminating findings, and honoring diverse LGBTQ community members’ voicesthrough data-driven community action. This article documents lessons learned about building and facilitatingcommunity-university partnerships, organizing and maintaining a sustained community research collaborative,engaging community participation, and ultimately, creating lasting, community-driven interventions.

Enhancing racial equity in LIS research by increasing representation of BIPOC

2021 ◽  
Vol 37 (2) ◽  
pp. 247-256
Author(s):  
Charles R. Senteio ◽  
Kaitlin E. Montague ◽  
Bettina Campbell ◽  
Terrance R. Campbell ◽  
Samantha Seigerman
Keyword(s):  
Social Justice ◽  
Participatory Research ◽  
Community Based Participatory Research ◽  
Health Inequity ◽  
Lessons Learned ◽  
Social Injustice ◽  
Racial Equity ◽  
Community Based ◽  
Community Partners ◽  
Racial Injustice

The escalation of discourse on racial injustice prompts novel ideas to address the persistent lack of racial equity in LIS research. The underrepresentation of BIPOC perspectives contributes to the inequity. Applying the Community Based Participatory Research (CBPR) approach meaningfully engages BIPOC to help guide LIS investigations that identify evolving needs and concerns, such as how systematic racism may contribute to social justice issues like environmental and health inequity. Engaging with BIPOC, using the CBPR approach, can help address racial equity in LIS because it will result in increased racial representation which enables incorporation of the perspectives and priorities of BIPOC. This shift to greater engagement is imperative to respond to escalating attention to social injustice and ensure that these central issues are adequately reflected in LIS research. The discipline is positioned to help detail the drivers and implications of inequity and develop ways to address them. We underscore the importance of working across research disciplines by describing our CBPR experience engaging with BIPOC in LIS research. We highlight the perspectives of community partners who have over two decades of experience with community-based LIS research. We offer lessons learned to LIS researchers by describing the factors that make these initiatives successful and those which contribute to setbacks.

scholarly journals Preventing cardiovascular disease: Participant perspectives of the FAITH! Program

2017 ◽  
Vol 24 (12) ◽  
pp. 1710-1723 ◽  
Author(s):  
LaPrincess C Brewer ◽  
Eleshia J Morrison ◽  
Joyce E Balls-Berry ◽  
Patrick Dean ◽  
Kandace Lackore ◽  
...  
Keyword(s):  
Cardiovascular Disease ◽  
African Americans ◽  
Participatory Research ◽  
Disease Risk ◽  
Cardiovascular Disease Risk ◽  
Community Based Participatory Research ◽  
Research Process ◽  
Community Based Interventions ◽  
Community Based ◽  
Behavior Change Interventions

Striking cardiovascular health disparities exist among African-Americans in Minnesota compared to Whites; however, community-based interventions to address cardiovascular disease risk are lacking. This study explored participant perceptions of a culturally tailored, cardiovascular disease prevention program developed using a community-based participatory research process. Research participation perceptions, program benefits, and program satisfaction/acceptability were analyzed using a mixed-methods approach. Overall, acceptability was high. Findings highlight the favorable inclusion of African-Americans (research perception), knowledge gained about healthy lifestyle practices (benefits), and quality of the curriculum/speakers (satisfaction). Community-based participatory research may be useful in fostering the acceptability of behavior change interventions among marginalized African-American communities.

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