Community-based Research Partnership Research Articles

Development of a Refugee Health Research Agenda in North America.

The lack of a cohesive, stakeholder-informed refugee health research agenda has been a barrier to promoting, funding, and conducting health research with refugee populations in North America. A cross-sectional study was conducted among individuals working in refugee health in North America (N = 93) to describe major domains within the field of refugee health research and to develop refugee health research priorities. Open-ended survey questions included: (1) What research topics specific to refugee research would you like to see in an international research agenda? (2) Please describe current and important gaps that you believe exist in refugee research and why? Overarching themes focused on the need for the development of research partnerships with refugee communities that are intentional, effective, and driven by the needs of refugee communities. The survey also identified a need for best practices in creating sustainable, community-based research partnerships (effective models and evidence-based strategies) that translate across 12 domains. The refugee health research priorities for North America described in this manuscript should continue to be modified over time as political, economic, social, and medical contexts change.

Civic Education for Civic Leadership

Civic education and civic leadership are at the forefront of renewing faith in democracy on our campuses and communities. There is an urgent need for higher education to return to its historical foundation to fulfill the mission of democracy by educating students for democratic citizenship (Harkavy, 2006). Effectively integrating curricular and co-curricular civic engagement involves a balanced approach that is “both political and non-political” (Ehrlich, 2000, p. vi) to guide students to identify core values, develop civic knowledge, and build civic leadership skills (Finley, 2011; Hurtado, 2019). Civic leadership is an integral student learning outcome embedded within civic engagement praxis, but few frameworks have been developed to integrate leadership growth into their programming and curricula (Kniffin & Sapra, 2021). To renew faith in democracy, a reorientation to engagement with the local community through civic leadership is the pathway to achieve measurable impact by guiding students from the classroom into the community. If higher education is to fulfill the mission of democracy, educators and campus leaders must become the guides who invite students into a story bigger than themselves. Building on King’s (1963) civic legacy and Musil’s (2009) Civic Learning Spiral, the author outlines a Strategic Leadership Impact Model that has resulted in student-led civic engagement capstone projects, community-based research, and sustainable civic partnerships. Whether in the classroom or in the community, undergraduate students must be equipped through civic curriculum, co-curriculum, and service-learning programming to engage diverse perspectives and political viewpoints with civic curiosity to become effective civic leaders.

Developing Methodologies for Co-Production of Knowledge: Data Production and Analysis in Community-Based Research Partnerships

This article reports on the development of a local methodological innovation that supports the co-production of knowledge side-by-side with community-based research partners. In addition to conducting critical ethnography, Shea reports on how educators within an after-school community science program and a researcher developed practices to surface community educators’ values, demystify the data analysis process, conduct collective analysis, and produce critical layers of data through storytelling. The discussion offers scholars interested in co-producing knowledge an imagination for how to revise existing and taken-for-granted research practices to shift knowledge production.

Autism and sleep across development: Advancing research and treatment through co-production

Sleep difficulties are highly prevalent in autistic individuals throughout their lifespan and are a substantial concern for these individuals, as well as parents/caregivers. These difficulties have been exacerbated by the COVID-19 pandemic, and the long-term effects are unclear and should be monitored. Despite considerable progress, sleep disorders continue to be underdiagnosed and left untreated in autistic youth. The sleep issues faced by autistic youth often differ from those experienced by neurotypical groups in presentation and treatment approaches, underscoring the urgent need for autism-specific validated diagnostic pathways as well as personalized treatments tailored to their age group. A step towards progress entails incorporating sleep screenings as a routine part of healthcare for autistic individuals at various developmental stages as sleep issues during childhood may differ from those in adolescence and adulthood. Future research in this area should aim to engage in community-based research partnerships with autistic individuals and parent-caregivers to maximize the benefits of future research for the community. A collaborative effort is necessary to address their distinct sleep hygiene practices and unique needs, which appear to differ from the general population. Through this co-produced commentary, we aim to contribute to the ongoing dialogue surrounding sleep difficulties in autistic youth, fostering a collaborative approach to improve understanding of these disturbances, their diagnosis, and how tailored treatments may be available. Lay Abstract Autistic individuals often face sleep difficulties that persist across their lives, causing concern for those experiencing them and their families/caregivers. The COVID-19 pandemic has heightened these challenges, with unclear long-term effects. Despite progress, sleep disorders in autistic youth are still underdiagnosed and untreated. Their sleep problems may differ from neurotypical peers, emphasizing the need for tailored solutions. Regular sleep screenings and collaborative research partnerships are essential steps in understanding and addressing their unique sleep needs.

What Is Ethical Enfranchisement?

Epistemic injustice occurs when people are harmed as knowers, especially when we lack the conceptual and interpretive resources to recognize people as knowers of their own experience. This essay addresses the ways in which concerns about epistemic injustice create a positive obligation to include diverse knowers of ethics within the academy and models a community-based alternative. This is ethical enfranchisement, by which we mean expanding the range of people included within ways of knowing ethical concepts, reflecting on the way people’s experiences are represented in ethical discourse, and allowing priority ethical conversations to be identified by community research. The goal of teaching ethics through enfranchisement is the creation of social infrastructure and exchange between community and classroom. We describe our Re-envisioning Ethics Access and Community Humanities (REACH) Initiative at Salisbury University as an example; a community-based research partnership between public philosophy and community psychology in descriptive ethics. We also explore the obligation held by ethics professionals and academics to enfranchise community members in their conceptualization of ethical concepts, priorities, and knowledge.

Creating community learning for empowerment groups: an innovative model for participatory research partnerships with refugee communities

Empowering communities to respond to humanitarian crises is one of the core principles of the United Nations High Commission for Refugees. In response to large numbers of refugees resettling in Canada from Syria as they fled its civil war, a community-based research partnership was initiated to examine the psychosocial needs and adaptation processes of Syrian individuals and families. In this article, we introduce Community Learning for Empowerment Groups (CLEGs) as a methodological innovation in participatory research partnerships and demonstrate how they can be used to harvest local knowledge and create critical spaces for transformative learning. We describe the process of co-creating CLEGs with seven recently resettled Syrian community leaders, examples of their implementation, and lessons learned in our community-based participatory research (CBPR). Grounded in a transformative paradigm, our CBPR project occurred over three phases of implementation. Activities undertaken by the research team in phase one aimed at empowering the leaders through a “train-the trainer” and collaborative learning approach to lead CLEGs in phase two. Focus groups were held with leaders in phase two to explore their experiences leading CLEGs. Discussions in focus groups revealed that leaders were empowered to adapt their learning from phase one according to their group dynamics and personal leadership style. Deepened insights and new facilitation approaches were evidence of leaders’ growth, as exemplified in the focus groups. Leaders were able to support their groups to generate and, in some cases, implement community-based solutions to their groups’ psychosocial challenges. Community Learning for Empowerment Groups are a promising model for supporting power sharing and knowledge co-construction in participatory research partnerships.

Exploring Social Determinants of Health in Healthy Aging Among Older Adults: A Qualitative Study.

The U.S. population is aging and diversifying. Older Black Americans comprise the largest racial minority group and experience greater disability than White Americans. Within a long-standing, community-based research partnership, we explored the determinants of healthy aging in Flint Michigan, a low-income, predominantly Black American community recovering from a water crisis. Focus groups were conducted among older adults residing in Flint, Michigan. A grounded theory approach and constant comparison method was utilized for data analysis. Five focus groups were conducted with 49 total participants. We identified four themes that impacted healthy aging: economic instability, health care access and quality, neighborhood and built environment, and social and community context. Economic instability heavily influenced the other themes. Economic instability is a barrier to healthy aging. As a result, we are testing an innovative cross-sector partnership combining older adult affordable housing and health care.

Planting Seeds of Change: Voices of Indigenous Youth on Wholistic Health

Indigenous youth are key partners in improving our understanding of holistic health and identifying solutions to address health-related issues. The Urban Gardens Project was a community-based research partnership involving Indigenous youth co-researchers, Brandon University, Indigenous Knowledge Users, Elders, and Indigenous organizations in Winnipeg and Brandon, Manitoba. Using the Medicine Wheel as an analytic framework, the study identified key indicators of spiritual, mental, physical, and emotional wellbeing that Indigenous youth attributed to gardening. Findings illuminate the need for policies to foster Indigenous youth engagement, leadership, and urban gardening programs that advance Indigenous cultural practices to contribute to Indigenous health and wellbeing. The research was funded by the Canadian Institutes for Health Research (CIHR).

Community-Based Research with Immigrant Families: Sustaining an Intellectual Commons of Care, Resistance, and Solidarity in an Urban Intensive Context

This article draws from a decade-long community-based research partnership oriented toward learning from and supporting immigrant youth and families as they advocate for themselves in the face of educational inequity. In particular, we focus on examining the trajectory and insights of the partnership in light of ongoing educational, health, and sociopolitical crises during the pandemic and the racial uprisings against police violence. We sought to understand how the work shifted in response to these global crises and also what sustained our collaboration during these times. As we showcase through representative examples of our inquiries, members of different immigrant communities in our partnership drew on their individual and collective experiences to engage in research as an act of care, to address pragmatic and immediate needs in their schooling, and to contend with traumatic legacies of oppression. Expanding networks of care and the intellectual legacy of the collaboration itself–what we refer to as an intellectual commons–created the foundation to sustain and amplify our work together during a time of social transformation.

Indigenous Studies Programming in Academia: Reflections on Community-Responsive Philosophy & Practice

The IGP Program is a uniquely positioned research and teaching unit---. This article describes the philosophy, principles, pedagogy, and practices of the IGP Program, its fourteen-year history, and its most recent contributions in the subject area of Indigenous governance. The IGP governance framework and the IGP research method emerge from community responsive research and custom programming partnerships. These models and related learnings are introduced to provide academics with a set of tools to teach Indigenous governance, establish community-based research partnerships that are enduring and respectful, and provide holistic and transformational public education to a myriad of organizations and change oriented leaders.

Preparing Extension Educators for Community-Based Research and Grant Partnerships

Two trainings to prepare Extension educators for research and grant partnerships were designed, implemented, and evaluated. These trainings further national goals to address health disparities, gain partnerships in the health care sector, and support health extension. The workshop Are You Research Ready? prepares Extension educators to participate in community-based human health research. Evaluations indicated that attendees gained a self-assessment of research readiness and felt more confident to position themselves for grants. Program evaluations also showed that educators needed additional training on how to create partnerships. A second workshop, Are You Partnership Ready?, addresses this need, increasing participants' confidence and skills for engaging in research projects and building partnerships.

Culturally disruptive research: a critical (re)engagement with research processes and teaching practices

PurposeAs scholars, educators and policymakers recognize the impact of partnership-based research, there is a growing need for more in-depth understanding of how to conduct this work, especially with and in diverse project teams. The purpose of this paper is to provide a critical examination of adopting a culturally disruptive approach in a research–practice partnership (RPP) that includes Indigenous and non-Indigenous researchers, designers and educators who worked together to collaboratively design culturally situated experiences for sixth graders.Design/methodology/approachFollowing a design-based implementation research methodology, data from design and implementation are presented as two case studies to illustrate key findings.FindingsLeveraging the frame of culturally disruptive pedagogy, key tensions, disruptions, self-discoveries and resulting pedagogical innovations are outlined. While the authors experienced multiple forms of disruptions as researchers, designers and educators, they focused on tracing two powerful cases of how culturally disruptive research directly and immediately resulted in pedagogical innovations. Together the cases illustrate a broader shift toward interdependence that the team experienced over the course of the school year.Research limitations/implicationsA new frame for conducting culturally disruptive research is presented. Both the theoretical application and practical implementation of this frame demonstrate its usefulness in conceptualizing culturally situated research through cultivating an uncomfortable yet generative interdependence.Practical implicationsFindings include examples and strategies for how to practically conduct multi-sector, interdisciplinary research and teaching. Scholars and educators share their stories which illustrate the practical impact of this work.Originality/valueCritical insights presented in this paper build on and contribute to the growing body of work around RPPs, community-based research and other critical partnership methods.

Reflections on ‘doing’ participatory data analysis with women experiencing long-term homelessness

This paper draws on the lessons learned from the [in]visible project, a community-based research partnership that aimed to learn more about the experiences of women, without children in their care, who experience chronic homelessness in Hamilton, Ontario. Through involving 70 women as participants, we used narrative and arts-based research methods to learn about the experiences and housing needs of this population. The purpose of the [in]visible project was to involve women in identifying gaps in housing services and generate recommendations on how permanent housing for women should be developed. This paper demonstrates how the participation of the women in three distinct data analysis activities including arts-based think tanks, participatory theorizing, and the creation of a conference workshop supported the participation of women at all stages of the data analysis process. This paper contributes to limited scholarship on participatory data analysis by presenting pragmatic and low-barrier ways of ensuring the findings and the direction of advocacy efforts reflect the social justice and change priorities of the women involved.

Evaluating community-based research: Hearing the views of student research partners

Despite the increasing popularity in the academy of collaborative approaches to research, evaluating the impacts of Students-as-Partners (SaP) initiatives has thus far received less systematic attention. This paper presents an evaluation of a participatory community-based research project where academics partnered with 15 mature students in a socio-economically disadvantaged estate in the south of Ireland to co-construct a household survey and conduct field research to gather the views of fellow residents on the regeneration of their area. The paper reports the findings of a subsequent qualitative, participatory evaluation of the student’s experience of this partnership with academics and its impacts. The findings illuminate some of the benefits and challenges of community-based staff-student research partnerships and points to the imperatives of aligning institutional, funder, and community participants’ capacities and objectives throughout the research cycle and the importance of evaluation to inform good practice in community-based research.

Novel Service Delivery Approach to Address Reproductive Health Disparities within Immigrant Latino Communities in Geographic Hot Spots: An Implementation Study.

Latinx youths continue to have the highest rates of teenage births in the United States and are at increased risk of acquiring sexually transmitted infections, including HIV/AIDS. A community-based research partnership piloted Families Talking Together, a brief, parent-based sexual risk reduction program using a novel and culturally relevant approach. This mixed-methods study examined the feasibility and acceptability of Spanish-speaking promotoras de salud (that is, community health workers) as implementers of an evidence-based intervention (EBI) to reach underserved immigrant communities. Findings suggest that promotoras are capable of implementing the EBI with positive organizational, client, and implementation outcomes. Furthermore, promotoras hold particular promise for addressing reproductive health disparities as they are indigenous and trusted members of the community who can reach members of marginalized Latino populations.

Realizing Yoga’s all-access pass: a social justice critique of westernized yoga and inclusive embodiment

ABSTRACT In the 21st century, the ancient mind–body practice of yoga has surged in popularity among western enthusiasts for its numerous health benefits. Particularly, a growing evidence base supports yoga for cultivating positive embodiment and reducing risk for disordered eating. Nevertheless, amidst its rise are concerns about yoga’s departure from its spiritual foundations and increasing assimilation into the appearance- and commercial-driven exercise and fitness culture. Consequently, an exclusionary identity has been perpetuated in shaping norms surrounding who can and does practice yoga, which contradicts earlier egalitarian visions of a yoga for all. Therefore, we adopt a social justice lens in offering a focused analysis of the intersection of yoga, embodiment, and inclusion for select marginalized social identities typically underrepresented among yoga practitioners and in yoga scholarship. Data are synthesized from both qualitative and quantitative sources and integrate an understanding of how confined media representations of “the yoga body” and other practical constraints may undermine the perceived access to the practice for members of diverse groups. We conclude with inviting future considerations towards fostering more interdisciplinary community-based research partnerships among the variety of stakeholders invested in advancing the accessibility and inclusion of yoga and positive embodiment for all bodies.

Impact of Community Respiratory Viral Infections in Urban Children With Asthma

To prospectively evaluate the influence of viral infection on respiratory symptoms, lung function, and nasal cytokines in children with asthma living in an urban environment.The study included 53 children with asthma living in Detroit, Michigan.Subjects were recruited with a screening questionnaire distributed through a community-based research partnership. Subjects participated in 4 2-week surveillance assessments, corresponding with fall, winter, spring, and summer seasons over the course of 1 year. During each 2-week surveillance period, spirometry, fraction of exhaled nitric oxide, symptom reports, and nasal lavage samples were obtained on 3 separate occasions. Respiratory symptoms were measured by using a previously published respiratory symptom score. “Sick periods” were defined when symptom scores were >2, and an additional assessment with previously stated measurements was completed over the 1-week sick period. Subjects were contacted weekly via telephone to monitor for illnesses and initiate sick period assessments. Nasal lavage samples were analyzed for the following: presence of respiratory viral nucleic acid, rhinovirus typing and viral copy numbers, and messenger RNA and protein expression analysis of select biomarkers previously shown to be elevated in rhinovirus infection.The investigators enrolled 53 subjects, who were predominantly African American, elementary school–aged, and had high prevalence of home smoke exposure. Approximately 75% of subjects had mild intermittent or mild persistent asthma. Six hundred fifty-eight nasal aspirates were obtained. Of the samples, 22.9% of surveillance samples and 33.7% of respiratory illness samples were virus positive, with rhinovirus accounting for 48.9% of infections. Comparing the presence of respiratory virus with high- and low-symptom illnesses, children with severe colds (symptom scores >5) had signs of airway inflammation on spirometry with a statistically significant decrease of ∼10% of predicted forced expiratory flow at 25% to 75% of pulmonary volume as well as higher biomarker elevations in both nasal messenger RNA of CXCL-10 and protein expression of CXCL8, CXCL10, CCL-2, and CCL-4 when compared with virus-negative asymptomatic conditions. Mild virus-positive colds (symptoms scores 1–4) and asymptomatic infections showed normal airway function by spirometry and fewer biomarker elevations. Viral-negative coldlike illnesses had increased nitric oxide with otherwise normal spirometry.Urban children with asthma have reduced forced expiratory flow at 25% to 75% of pulmonary volume and higher elevations of nasal biomarkers during high-symptom respiratory infections compared with low-symptom infections or symptomatic virus-negative illnesses.Researchers in this study prospectively evaluate the effect of viral infections on respiratory symptoms and lung function in urban children with asthma. High-symptom colds were associated with decreases in small airway function compared with lower-symptom illnesses. Interestingly, the nasal biomarkers elevated during symptomatic viral infections were related to neutrophil recruitment and not eosinophil or allergic response. Also, many upper respiratory tract illnesses in the study were virus negative, suggesting other triggers for symptoms.

Research and knowledge transfer priorities in developmental coordination disorder: Results from consultations with multiple stakeholders.

BackgroundPriority‐setting is a way to focus research and knowledge translation (KT) efforts for community‐based research partnerships (CBRP).ObjectiveTo identify the developmental coordination disorder (DCD) research and KT priorities of stakeholders in Quebec, Canada, and their perceptions regarding the implementation of a CBRP.DesignAn advisory committee oversaw the research process including an online survey and four community forums.Setting and participantsThe survey was posted online and four community forums were organized. Participants included parents of children with DCD, adults with DCD, health professionals and school staff.Main variablesStakeholder generated research and KT priorities, and optimal CBPR conditions.Outcome measuresParticipants selected their top five priorities based on a predefined list of 16 research and 12 KT priorities determined in collaboration with the advisory committee. They also rated the importance of various CBRP conditions. Preliminary survey results were discussed during the forums.ResultsSurvey participants (n = 395) identified interwoven research and KT priorities where access to services was considered to be essential: supporting children at school; improving DCD identification and diagnosis; preventing secondary consequences; improving the organization of services and implementing effective services. Forum participants (n = 52) confirmed the relevance of these priorities and supported the establishment of a CBRP inclusive of all stakeholders to improve DCD services, research and KT.Discussion and conclusionsA general consensus emerged among all groups, but adults with DCD were more concerned with employment than were the other stakeholder groups. These findings are presently being used to shape an ongoing, online CBRP.

Imagining Indigenous and Archaeological Futures: Building Capacity with the Confederated Tribes of Grand Ronde

Collaborative archaeological research with indigenous communities, in addition to fostering culturally specific, community-centred research programmes, also encourages meaningful shifts in archaeological research on the ground. Field Methods in Indigenous Archaeology (FMIA), a community-based research partnership between the University of Washington and the Confederated Tribes of Grand Ronde, highlights these dual possibilities. The project seeks to strengthen the tribe’s capacity to care for cultural resources, to recover histories of survivance on the Grand Ronde Reservation, and to develop a low-impact, Grand Ronde archaeological methodology. These goals are realized through a summer field school, which joins comprehensive field instruction with overviews of tribal historic preservation and engagement with the Grand Ronde community. FMIA encapsulates the ethical imperative to work with, for, and by indigenous communities in archaeological research and the opportunities such work brings in transforming archaeological method, theory, and practice.

Predictors of CD4 health and viral suppression outcomes for formerly homeless people living with HIV/AIDS in scattered site supportive housing

ABSTRACTStable housing is key to improving health outcomes for people living with HIV/AIDS. Though many formerly homeless HIV positive individuals reside in supportive housing, little research has examined biometric HIV health outcomes for residents of these programs. Through a community-based research partnership, this study analyzed secondary data from a Shelter Plus Care supportive housing program in Cincinnati, Ohio to examine the likelihood of participants achieving a healthy CD4 count (>500 cells/mm3) and viral suppression (viral load <200 copies/mL) while in supportive housing and to identify participant characteristics associated with these outcomes. The study sample was 86 participants who entered the program between 2008 and 2016, including 50 current residents and 36 exited participants. Participants’ average length of stay in Shelter Plus Care was 35.2 months (range 3.2–108.1 months) during the study period. Bivariate analysis indicated statistically significant improvements on both outcome variables, with 45% of participants achieving a healthy CD4 count and 79% achieving viral suppression by program exit or most recent time point. Participants who had health insurance at intake and who had never been incarcerated were more likely to achieve viral suppression, and longer length of stay in the program was also positively associated with viral suppression. These results add to the literature on the relationship between housing conditions and HIV health outcomes by demonstrating that residence in supportive housing is associated with improvements in CD4 count and viral load for a sample of formerly homeless persons living with HIV/AIDS, two-thirds of whom had co-occurring physical health, mental health, or substance abuse problems. Further research collaborations should expand on these findings to examine the service packages that are associated with optimal HIV health outcomes for supportive housing residents.