Case Study in Chamorro Community and Academic Engagement for a Community-Partnered Research Approach

Objective: We describe the development of a community and academic research partnership, share reflections on processes for collaborations, and identify key factors for establishing strong and effective relationships to foster high-quality research. Background: A community-based participatory research (CBPR) effort evaluating a community-based patient navigation program assisting Chamorro women to access breast cancer services in Southern California served as the foundation for the development of the community-academic partnership. Methods: Using a CBPR approach focusing on active involvement of community members, organizational representatives, and academic researchers in all aspects of research process, faculty from a research university and a local community-based organization were brought together to build a partnership. Community and academic partners engaged in a series of meetings where dialogue focused on developing and nurturing trust and shared values, respect for community knowledge, and establishing community-defined and prioritized needs and goals. Partners have also focused on defining and developing explicit structures and policies to implement an equal partnership. Results: Experiences and lessons learned are shared, reflecting the processes of relationship building, and planning and implementing preliminary research steps. Lessons Learned: Adequate time for relationship-building, open and honest communication, flexibility, and ongoing examination of assumptions are keys to developing successful CBPR partnerships.

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A Socially Just Leadership Approach to Community-Partnered Research for Reducing Health Disparities

The Counseling Psychologist ◽

10.1177/0011000017722213 ◽

2017 ◽

Vol 45 (6) ◽

pp. 781-809 ◽

Cited By ~ 8

Author(s):

Carolyn M. Tucker ◽

Jaime L. Williams ◽

Julia Roncoroni ◽

Martin Heesacker

Keyword(s):

Health Disparities ◽

Community Based Participatory Research ◽

Lessons Learned ◽

Research Approach ◽

Community Based ◽

Guiding Principles ◽

University Partnership ◽

Partnership Approach ◽

Leadership Approaches ◽

Counseling Psychologists

Significant health disparities continue to plague many groups of people who have been systematically oppressed and largely unrepresented in health research. Community-based participatory research (CBPR) is a collaborative research approach that has been shown to be effective in addressing health disparities; a community–university partnership approach can be used to conduct this research. Counseling psychologists are well suited to establish and lead CBPR partnerships, yet there is a paucity of research to guide them in utilizing effective leadership approaches when conducting CBPR for reducing health disparities. Therefore, the aims of the present study were to (a) review existing leadership models applicable to conducting CBPR; (b) identify guiding principles of socially just leadership that emerged from the aforementioned review; (c) offer an example of how the guiding principles were used in a community–university partnership, highlighting challenges, solutions, and lessons learned; and (d) discuss the benefits of socially just leadership for counseling psychologists.

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Prioritizing Community in Research Decision-Making Through Partnership

Innovation in Aging ◽

10.1093/geroni/igab046.1824 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 473-474

Author(s):

Maia Ingram ◽

Aileen Wong ◽

Rosie Piper ◽

Sonia Colina ◽

Scott Carvajal ◽

...

Keyword(s):

Health Workers ◽

Critical Role ◽

Community Based Participatory Research ◽

Research Process ◽

Lessons Learned ◽

Cultural Humility ◽

Research Approach ◽

Recruitment And Retention ◽

Southwest Borderlands ◽

Research Decision

Abstract In behavioral intervention research, taking a community-based participatory research approach enhances recruitment and retention while facilitating the transfer of research findings into social change. Successes with recruitment and retention are secondary to enacting fundamental principles of trust, reciprocity, cultural humility, empowerment, and respect. This presentation will describe a longitudinal clinical trial in a Southwest borderlands community, Oyendo Bien. The study was co-developed and implemented with community partnership throughout the research process. Dyads were recruited to participate in a community-delivered group education and support program addressing hearing loss for Spanish-speakers age 50+ years (n=132 participants randomized). We highlight the critical role that community health workers (promotoras) held as members of the research team. Furthermore, we describe an innovative approach for language mediation that integrates and empowers community participation. This presentation will include examples of lessons learned from the community in collaborating to conduct research in a way that truly serves.

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Innovating for Transformation in First Nations Health Using Community-Based Participatory Research

Qualitative Health Research ◽

10.1177/1049732318756056 ◽

2018 ◽

Vol 28 (7) ◽

pp. 1036-1049 ◽

Cited By ~ 11

Author(s):

Grace Kyoon-Achan ◽

Josée Lavoie ◽

Kathi Avery Kinew ◽

Wanda Phillips-Beck ◽

Naser Ibrahim ◽

...

Keyword(s):

First Nations ◽

Participatory Research ◽

Qualitative Interviews ◽

Community Based Participatory Research ◽

Study Data ◽

Lessons Learned ◽

Research Approach ◽

Sustainable Change ◽

Community Based ◽

Participatory Research Approach

Community-based participatory research (CBPR) provides the opportunity to engage communities for sustainable change. We share a journey to transformation in our work with eight Manitoba First Nations seeking to improve the health of their communities and discuss lessons learned. The study used community-based participatory research approach for the conceptualization of the study, data collection, analysis, and knowledge translation. It was accomplished through a variety of methods, including qualitative interviews, administrative health data analyses, surveys, and case studies. Research relationships built on strong ethics and protocols to enhance mutual commitment to support community-driven transformation. Collaborative and respectful relationships are platforms for defining and strengthening community health care priorities. We further discuss how partnerships were forged to own and sustain innovations. This article contributes a blueprint for respectful CBPR. The outcome is a community-owned, widely recognized process that is sustainable while fulfilling researcher and funding obligations.

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

Action Research ◽

10.1177/1476750318818875 ◽

2018 ◽

Vol 17 (2) ◽

pp. 186-207 ◽

Cited By ~ 2

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.

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Cocreating an Evaluation Approach for a Healthy Relationships Program With Community Partners: Lessons Learned and Recommendations

American Journal of Evaluation ◽

10.1177/1098214021997574 ◽

2021 ◽

pp. 109821402199757

Author(s):

Maisha M. Syeda ◽

Meghan Fournie ◽

Maria C. Ibanez ◽

Claire V. Crooks

Keyword(s):

Community Based Participatory Research ◽

Research Process ◽

Lessons Learned ◽

Community Based ◽

Community Partners ◽

Healthy Relationships ◽

Vulnerable Youth ◽

Evaluation Approach ◽

Trauma Informed ◽

Health Programming

Community-based partnerships are integral to mental health programming and research. However, there are limited published guidelines that apply the principles of community-based participatory research (CBPR), especially within the context of supporting vulnerable youth populations. This article demonstrates the application of the CBPR principles in cocreating an evaluation approach for a healthy relationships program for vulnerable youths with community partners. We present our research procedures and activities and highlight the importance of having a trauma-informed lens and flexibility with the research process and outcomes. We conclude the article by sharing our lessons learned and providing recommendations for future CBPR with vulnerable youths.

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The Cultural and Methodological Factors Challenging the Success of the Community-Based Participatory Research Approach When Designing a Study on Adolescents Sexuality in Traditional Society

Qualitative Health Research ◽

10.1177/1049732320985536 ◽

2021 ◽

pp. 104973232098553

Author(s):

Raifa Jabareen ◽

Cheryl Zlotnick

Keyword(s):

Participatory Research ◽

Community Based Participatory Research ◽

Lessons Learned ◽

Adolescent Sexuality ◽

Community Advisory Board ◽

Research Approach ◽

Traditional Society ◽

Linguistic Minority ◽

Community Based ◽

Community Activists

Youth growing up in traditional cultures are split between the messages that they receive on sexuality from their families and those they receive via the internet depicting values of Western culture. The Palestinian-Israeli community, a national, ethnic, and linguistic minority, is an example of this situation. The purpose of this community-based participatory research study is to describe the challenges and lessons learned about launching a community advisory board (CAB) in studies on the taboo topic of adolescent sexuality. Using content analysis, we identified two necessary conditions to convene a CAB on adolescent sexuality in a traditional community: (a) an insider academic researcher, fluent in the native language, able to discuss the linguistic difficulties of sexual terminology and (c) the recruitment of motivated, community activists who were knowledgeable on the topic. The mostly traditional society of Palestinian-Israelis shuns discussions on sexuality; but with these two conditions, the study was a success.

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2315

Journal of Clinical and Translational Science ◽

10.1017/cts.2017.172 ◽

2017 ◽

Vol 1 (S1) ◽

pp. 47-48

Author(s):

Amy LeClair ◽

Carolyn Rubin ◽

Keyword(s):

Local Community ◽

Medical Center ◽

Qualitative Interviews ◽

Community Based Participatory Research ◽

Community Organizations ◽

Lessons Learned ◽

Community Research ◽

Community Based ◽

Academic Researchers ◽

The Impact

OBJECTIVES/SPECIFIC AIMS: Addressing Disparities in Asian Populations through Translation research (ADAPT) is a community-research partnership funded by the Tufts Clinical Translational Sciences Institute (CTSI). Founded in 2011, this collaborative brings together 7 Chinatown-serving community-based organizations and academic researchers with the goal of improving health for the local Chinatown community and beyond. The goal of this research project was to document the best practices, lessons learned, and process through which ADAPT has developed and grown. The aim of this project is to disseminate the model to other CTSAs who are currently engaged in METHODS/STUDY POPULATION: We used a combination of qualitative interviews and content analysis to gather data on the evolution of ADAPT over the last 5 years. Current members from both community organizations and the university/medical center were interviewed about their experiences participating in ADAPT. When possible, interviews were recorded and transcribed verbatim. Deidentified transcripts and administrative documents including meeting minutes, conference summaries, bylaws, and mission statements were coded using Dedoose analytic software. RESULTS/ANTICIPATED RESULTS: Established community-based participatory research (CBPR) principles, including mutual respect, transparency, and commitment, are viewed as necessary, but not sufficient. Patience—both with other members and with the group as a work in progress—is highlighted as being a necessary characteristic of participants. Time and funding are 2 of the most important resources, and the majority of members agree that there is no substitute for “skin in the game.” Attempts at last minute, opportunistic engagement were provided as examples of what had not worked. One ongoing tension is the balance between process and product. Individual members are beholden to organizations to different degrees, and the need to produce something in the form of publications or grant money can limit the amount of time members can commit to the collaborative. At the same time, these products are unlikely to materialize if members are not invested in the process of growing and sustaining the collective. DISCUSSION/SIGNIFICANCE OF IMPACT: Out of the 7 community organizations who currently participate in ADAPT, only 1 is explicitly focused on health in the traditional sense. The others are primary service organizations, but because they understand the impact of the social determinants of health on the local community—including housing, employment, education, nutrition, among other factors—the research collaborative is able to leverage the knowledge and expertise of the academic researchers and the community partners to focus on health topics most salient to the local Chinatown community.

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Lessons Learned from Community-Based Participatory Research in Indian Country

Cancer Control ◽

10.1177/1073274805012004s10 ◽

2005 ◽

Vol 12 (4_suppl) ◽

pp. 70-76 ◽

Cited By ~ 94

Author(s):

Linda Burhansstipano ◽

Suzanne Christopher ◽

Ann Schumacher

Keyword(s):

Participatory Research ◽

Academic Research ◽

Community Based Participatory Research ◽

Lessons Learned ◽

Medically Underserved ◽

Community Based ◽

Research Institutes ◽

Indian Country ◽

Traditional Research ◽

Control And Prevention

The purpose of this article is to share lessons learned from implementing community-based participatory research (CBPR) in Indian Country that may be generalizable to other medically underserved communities. CBPR is currently included in multiple grant announcements by the National Institute of Health and Centers for Disease Control and Prevention, but information about this methodology vs traditional research methodology is often misleading. This article addresses some common mistakes made by academic research institutes by sharing what we have learned about how CBPR can be implemented in a respectful manner. The majority of tribal Nations prefer, if not mandate, that CBPR be used in most proposed studies involving their communities today.

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Enhancing racial equity in LIS research by increasing representation of BIPOC

Education for Information ◽

10.3233/efi-211530 ◽

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.

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A Community-Engaged Project Discovering the Sexuality Questions of Adults With Intellectual and Developmental Disabilities

Inclusion ◽

10.1352/2326-6988-9.1.2 ◽

2021 ◽

Vol 9 (1) ◽

pp. 2-16

Author(s):

Rebecca R. Kammes ◽

Rhonda S. Black ◽

Trisha Easley

Keyword(s):

Developmental Disabilities ◽

Sexuality Education ◽

Developmentally Appropriate ◽

Community Based Participatory Research ◽

Research Approach ◽

Intellectual And Developmental Disabilities ◽

Community Based ◽

Sexual Health Information ◽

Education Group ◽

Participatory Research Approach

Abstract This study used a community-based participatory research approach to examine what adults with intellectual and developmental disabilities (IDD) view as important topics in sexuality education. A thematic analysis was conducted on questions written by adults with IDD regarding sexuality after attending a sexuality education group. Results were checked for accuracy using a community focus group. Findings provide direct implications for community-based sexuality education programs for adults with IDD, demonstrating the need for mentoring regarding authentic relationship experiences as well as developmentally appropriate sexual health information. Programs need to focus on helping adults with IDD navigate these interpersonal experiences. This study also demonstrates the importance of including the voices of adults with IDD in research in order to ensure its applicability and acceptability.

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