Community-based Participatory Research Research Articles

The Promise and Challenges of Integrating Biological and Prevention Sciences: A Community-Engaged Model for the Next Generation of Translational Research.

Beginning with the successful sequencing of the human genome two decades ago, the possibility of developing personalized health interventions based on one's biology has captured the imagination of researchers, medical providers, and individuals seeking health care services. However, the application of a personalized medicine approach to emotional and behavioral health has lagged behind the development of personalized approaches for physical health conditions. There is potential value in developing improved methods for integrating biological science with prevention science to identify risk and protective mechanisms that have biological underpinnings, and then applying that knowledge to inform prevention and intervention services for emotional and behavioral health. This report represents the work of a task force appointed by the Board of the Society for Prevention Research to explore challenges and recommendations for the integration of biological and prevention sciences. We present the state of the science and barriers to progress in integrating the two approaches, followed by recommended strategies that would promote the responsible integration of biological and prevention sciences. Recommendations are grounded in Community-Based Participatory Research approaches, with the goal of centering equity in future research aimed at integrating the two disciplines to ultimately improve the well-being of those who have disproportionately experienced or are at risk for experiencing emotional and behavioral problems.

Expanding community-based participatory action research practices to clubhouses through sustainable research activities.

There is growing utilization and acknowledgement of the benefits of community-based participatory action research (CBPAR) in advancing health practices and equity. However, the sustainability and full impact of CBPAR in health care settings faces many obstacles and limitations. The present article examines the synergies between CBPAR and Clubhouse programs, presents the demonstration and ongoing implementation of sustainable CBPAR practices at Fountain House in New York City, and offers lessons learned for other Clubhouses and similar programs seeking to integrate CBPAR. Alignment in practice and principles between CBPAR and Clubhouse programs are presented. The innovation and ongoing sustainable CBPAR practices in the Fountain House Clubhouse program are examined with a contribution of practice guidance for other Clubhouse and similar programs in further adopting and learning CBPAR into participatory health practices. Clubhouse psychosocial rehabilitation programs present structurally conducive settings for the success and sustainability of CBPAR activities and projects. The Fountain House examination and demonstration of integrating CBPAR sustainably into core Clubhouse programming presents opportunities for further integration, research, and practice guidance in uniquely leveraging features of the Clubhouse model to advance health equity and rehabilitative outcomes through CBPAR. The opportunity for incorporating structural CBPAR activities within Clubhouse programs can be informed by the experience, processes, and lessons applied in the Fountain House example. Further research into the rehabilitation, program, and equity benefits of Clubhouse and CBPAR integration could uniquely contribute to the advancement of sustainable participatory research practices across the mental health field generally. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Preserving cultural heritage: A community-centric approach to safeguarding the Khulubvi Traditional Temple Malawi

The study investigates cultural heritage conservation through community-based participatory research, focusing on preserving the Khulubvi Traditional Temple. It addresses challenges from religious, societal, and economic changes and the importance of integrating heritage into education. It emphasizes technology's role in maintaining sacred narratives. Qualitative methods, such as interviews and thematic analysis, reveal community efforts and modern challenges. The study concludes with a call to embed heritage in formal education and highlights the community's crucial role in cultural legacy, contributing to the discourse on heritage preservation.

Pregnancy and Postpartum Experiences in Chicago Neighborhoods With Increased Adverse Maternal Outcomes: A Qualitative Study

Abstract: Background: Black birthing people are three to four times more likely to die from pregnancy-related causes than White birthing people. Objective: We aimed to better understand the pregnancy and postpartum experiences with health care, support, and maternal morbidity and mortality (MMM) of Black pregnant and parenting people living in neighborhoods with increased rates of MMM in Chicago, Illinois. Methods: This was a rapid qualitative analysis in Chicago, Illinois based on principles of community-based participa-tory research. Community partners recruited Black pregnant and parenting individuals living in neighborhoods with higher rates of MMM. Four focus groups from February 2021 to October 2021 were led by community health workers and covered pregnancy and postpartum experiences. Transcripts were deductively and inductively coded by paired-analyst teams and thematically analyzed. Results: This study included 31 participants from eight neighborhoods. Key themes related to pregnancy and the postpartum period included the: (1) a need for social and mental health support during and after pregnancy, (2) a preference for multiple sources of health information, (3) a need for strengthened connection with medical providers and health care systems, (4) a lack of clarity regarding MMM and the postpartum period, and (5) a difference in language between patients and health care providers. Conclusions: Further research and interventions are needed to evaluate how to best support pregnant and postpartum people, to implement patient-centered language when communicating about pregnancy and postpartum complications, and to demonstrate investment by health care workers in Black birthing people. Crucial to further research and interventions is communication with and input from communities most affected by MMM.

Development of a sexual consent intervention for adolescents with intellectual and developmental disabilities.

Tailored sexuality education for adolescents with intellectual and developmental disabilities is a crucial, yet unmet, need as this population is particularly at risk for sexual abuse and victimisation. However, there are no evidence-based interventions to specifically address this need. This paper presents the development of an intervention framework to address equity in sexuality education and support adolescents with intellectual and developmental disabilities to understand and provide sexual consent, a foundational aspect of sexuality education and sexual health. The Sexual Health Equity Project team used a Community-Based Participatory Research approach to develop a four-module sexual consent intervention for adolescents with intellectual and developmental disabilities. We leveraged a diverse, interdisciplinary team in a suburban Midwestern school district, and used Backward Design to create objectives and assessments which were rooted in findings from qualitative data by special education teachers. The resulting sexual consent intervention, Ask Me First-Choices, is comprised of four modules covering topics including definition of sexual consent; decision-making strategies and practice; communicating consent and refusal, identifying situations of consent and non-consent; and legal issues surrounding consent. Each module is divided into five components for content delivery: (1) introduction, (2) lecture, (3) supplemental activity, (4) assessment, and (5) conclusion. We detail the intervention's unique aspects, emphasising areas where we used Universal Design for Learning principles to support teachers' instruction and students' learning. Our efforts to create a sexual consent intervention directly address sexuality education equity issues. We offer commentary on our design process and decisions, as well as recommendations for future groups who want to develop sexual health interventions in similar contexts for students with intellectual and developmental disabilities. Next steps include further testing and validation of the sexual consent intervention to build the evidence-base of sexuality education for adolescents with intellectual and developmental disabilities.

Co-designing the Family Wellbeing Program to Address Mental Health Disparities in a Latino Community: Lessons Learned

Abstract: Background: Latino caregivers caring for children under 5 years old who are under resourced, and underserved may be most vulnerable for experiencing mental health problems. Furthermore, Latino families with young children—during the COVID-19 pandemic—were at particular risk for multiple and concurrent stressors and acute adversities. Objectives: The Family Wellbeing Program (FWP) was designed to strengthen Latino caregivers’ mental health and mental well-being, and facilitate their access to mental health supports and service providers. Methods: Using the principles of community-based participatory research, a university research team and staff from a federally qualified health care center co-developed and implemented the FWP. Pre- and post-implementation focus groups with six staff were conducted and data analysis was guided by the RE-AIM framework. Results: Staff identified implementation challenges related to the pandemic and socioenvironmental factors affecting the reach and participation of Latino families. Staff perceived the program improved caregivers’ help-seeking behaviors, yet suggestions for improving the FWP for Latino caregivers were noted. Staff also discussed implementation strategies to sustain future programming. Conclusions: Implementation strategies along the RE-AIM dimensions were identified to improve the participation of Latino caregivers in future adaptations of the FWP. The implications of this work could show promise for sustaining programs designed to address disparities in mental health among Latino caregivers.

The Use of Social Marketing in Community-Wide Physical Activity Programs: A Scoping Review.

Previous community-wide physical activity trials have been criticized for methodological limitations, lack of population-level changes, and insufficient reach among underserved communities. Social marketing is an effective technique for community-wide behavior change and can coincide with principles of community-based participatory research (CBPR). A systematic scoping review of community-wide interventions (system-level) targeting physical activity and/or weight loss was conducted to (i) describe and critically discuss how social marketing strategies are implemented; (ii) identify which populations have been targeted, including underserved communities; (iii) evaluate the use of CBPR frameworks; (iv) assess retention rates; and (v) identify gaps in the literature and formulate future recommendations. Eligible studies included those that: aimed to improve physical activity and/or weight loss on a community-wide level, used social marketing strategies, and were published between 2007 and 2022. Approximately 56% of the studies reported a positive impact on physical activity. All studies described social marketing details in alignment with the five principles of social marketing (product, promotion, place, price, and people). Only two studies explicitly identified CBPR as a guiding framework, but most studies used one (k = 8, 32%) or two (k = 12, 48%) community engagement strategies. Few studies included at least 50% representation of African American (k = 2) or Hispanic (k = 3) participants. This review highlights key gaps in the literature (e.g., lack of fully-developed CBPR frameworks, reach among underserved communities, randomized designs, use of theory), highlights examples of successful interventions, and opportunities for refining community-wide interventions using social marketing strategies.

Finding the beat: A partnership to address the relationship between a music program and health among youth who have experienced trauma.

Expertise on treating trauma and traumatic stress sequelae has been siloed in the mental health professions, although somatic psychotherapies and adjuncts to treatment are gaining attention. Alternative and accessible interventions are needed, especially for youth who have experienced trauma. Lost Voices is a community-based group providing trauma-informed music therapy to youth who have experienced trauma in southern Michigan. The purpose of this program evaluation was to use a community-based participatory research approach to create a thoughtful partnership between an academic partner and a nonprofit organization in order to evaluate the outcomes of a music therapy intervention currently being delivered by professional musicians to youth who have experienced trauma. This program evaluation used semistructured interviews with 19 key stakeholders (e.g., youth participants, facility staff, musicians) from two residential youth programs in southern Michigan. A total of four themes were identified from the interviews, including (a) processing emotion, (b) building trust, (c) self-expression, and (d) future orientation. Subthemes included individual story and coping within the theme processing emotion, a focus on outside role models and peer connection within the theme building trust, the fun aspect of the intervention and confidence as part of the theme self-expression, and future orientation encompassed the motivation that youth participants gained as well as forward thinking. This program evaluation provides data to help build the evidence for alternative mental health treatments that specifically reach those impacted by a lack of access and availability of treatments due to social determinants of health. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Linking affected community and academic knowledge: a community-based participatory research framework based on a Shichigahama project

Earthquakes that cause extensive damage occur frequently in Japan, the most recent being the Noto Peninsula earthquake on January 1, 2024. To facilitate such a recovery, we introduce a community-based participatory research program implemented through cooperation between universities and local communities after the 2011 Great East Japan Earthquake. In this project, the university and the town of Shichigahama, one of the affected areas, collaborated to hold annual workshops in the target area, which evolved into a climate monitoring survey. Even in Japan, where disaster prevention planning is widespread, various problems arise in the process of emergency response, recovery and reconstruction, and building back better when disasters occur. As is difficult for residents and local governments to solve these problems alone, it is helpful when experts participate in the response process. In this study, we interviewed town hall and university officials as representatives of local residents regarding this project and discussed their mutual concerns. The community-based participatory research framework developed in the Shichigahama project could be used in the recovery from the Noto Peninsula Earthquake as well as in future reconstruction and disaster management projects.

Community-Based Participatory Research and System Dynamics Modeling for Improving Retention in Hypertension Care

The high prevalence of hypertension calls for broad, multisector responses that foster prevention and care services, with the goal of leveraging high-quality treatment as a means of reducing hypertension incidence. Health care system improvements require stakeholder input from across the care continuum to identify gaps and inform interventions that improve hypertension care service, delivery, and retention; system dynamics modeling offers a participatory research approach through which stakeholders learn about system complexity and ways to model sustainable system-level improvements. To assess the association of simulated interventions with hypertension care retention rates in the Nigerian primary health care system using system dynamics modeling. This decision analytical model used a participatory research approach involving stakeholder workshops conducted in July and October 2022 to gather insights and inform the development of a system dynamics model designed to simulate the association of various interventions with retention in hypertension care. The study focused on the primary health care system in Nigeria, engaging stakeholders from various sectors involved in hypertension care, including patients, community health extension workers, nurses, pharmacists, researchers, administrators, policymakers, and physicians. Simulated intervention packages. Retention rate in hypertension care at 12, 24, and 36 months, modeled to estimate the effectiveness of the interventions. A total of 16 stakeholders participated in the workshops (mean [SD] age, 46.5 [8.6] years; 9 [56.3%] male). Training of health care workers was estimated to be the most effective single implementation strategy for improving retention in hypertension care in Nigeria, with estimated retention rates of 29.7% (95% CI, 27.8%-31.2%) at 12 months and 27.1% (95% CI, 26.0%-28.3%) at 24 months. Integrated intervention packages were associated with the greatest improvements in hypertension care retention overall, with modeled retention rates of 72.4% (95% CI, 68.4%-76.4%), 68.1% (95% CI, 64.5%-71.7%), and 67.1% (95% CI, 64.5%-71.1%) at 12, 24, and 36 months, respectively. This decision analytical model study showed that community-based participatory research could be used to estimate the potential effectiveness of interventions for improving retention in hypertension care. Integrated intervention packages may be the most promising strategies.

Community‐based participatory research for urban regeneration: Bridging the dichotomies through the exp‐EIA method

AbstractUrban environment design profoundly influences citizens' health and well‐being. Despite the aim of urban regeneration initiatives to enhance community well‐being and social connections, they often struggle to ensure a balance of power among stakeholders, effectively involve citizens, and accurately assess subjective urban experiences. New methodological approaches in community‐based participatory research (CBPR) are advocated to facilitate interactions among social actors and overcome the digital versus real dichotomy. This article introduces the Experiential Environmental Impact Assessment (exp‐EIA) method as a novel research and intervention tool to address these challenges. Grounded in psychology, exp‐EIA aims to integrate emotional, cognitive, and community identity dimensions to capture the nuanced experiences of urban environments. Through digital data collection and visualization tools, exp‐EIA could facilitate participatory decision‐making processes across various stages of urban regeneration projects. Furthermore, its adaptability enables significant integration with existing participatory methods, fostering inclusive engagement and innovative design solutions. The theoretical framework of exp‐EIA, its application in CBPR, and its potential to bridge the gap between technological innovation and citizen engagement in urban regeneration processes are discussed. A blended case study conducted in the metropolitan area of Milan (Italy) is presented, highlighting a promising pathway towards more inclusive and effective approaches to community revitalization.

A stakeholder co-design approach to designing a dental service for adults experiencing homelessness.

The homeless population faces a "cliff edge of inequality" when trying to access essential dental services. There are several additional barriers to accessing dental care in comparison to the general population and the heterogeneous nature of patients presents a significant challenge when designing dental services to meet their needs. Following the Smile4Life report in 2009, there is limited up-to-date and population-specific evidence available for the optimal model of service delivery. This study aimed to co-design principles for a prospective dental service for adults experiencing homelessness. A qualitative methodology was used to incorporate experts-by-experience into elements of co-designing a dental service for adults experiencing homelessness. The study combined elements of an experienced-based co-design framework for healthcare innovation with community-based participatory research. Focus groups with people experiencing homelessness and healthcare practitioners were conducted to identify principles for any prospective dental service, as well as several barriers and enablers to establishing a homeless dental service. The findings were transcribed and analysed using thematic analysis on Nvivo software. From the qualitative analysis five key themes emerged: (1) Impact and expectations of oral health while experiencing homelessness, (2) Barriers to accessing dental care; (3) Practitioner's views about homelessness and access to care; (4) Barriers to designing a homeless service and (5) Enablers for co-designing a new model of dental care delivery for the homeless population.Five key principles for a new model of homeless dental service were identified: (i) Services designed to address the needs of patients; (ii) Services delivered in a safe and welcoming environment (iii) Training and consistency of staff; (iv) Focus on dental education (v) Developing peer mentoring and peer support. While the barriers to accessing dental care while homeless are well established and understood by healthcare practitioners, more work is required to gain consensus on the most effective way to deliver an innovative a sustainable dental service for patients experiencing homelessness. Previous negative experiences, lack of readily available information on services and barriers to access in the current system could be addressed by developing peer mentors within the homeless community, empowering individuals to share their knowledge and skills to support others in improving their oral health.

Initial development of the Sugar-Sweetened Fruit Drink Questionnaire for examining beliefs, knowledge, and behaviors in an intervention to reduce sugar-sweetened fruit drink intake in Alaska Native children.

Alaska Native children may be at increased risk for dental caries because of added sugar intake from sugar-sweetened fruit drinks. This study describes development of a questionnaire to (a) assess Alaska Native caregivers' beliefs, knowledge, and behaviors regarding sugar-sweetened fruit drinks, and (b) describe behavior changes within a community-based intervention. Questionnaire development was conducted in three phases with Yup'ik Alaska Native caregivers in Southwest Alaska: (1) initial selection and adaptation of questionnaire items; (2) cognitive testing; and (3) data collection. The Sugar-Sweetened Fruit Drink Questionnaire (SFDQ) contains 31 culturally-tailored items across six areas: beliefs/values, environment/skills, knowledge, motivation, self-efficacy, and behaviors. Eighty-one percent of caregivers gave their children sugar-sweetened fruit drinks. Motivations included: what they grew up with (52%), few other options (46%), makes child happy (46%), healthier than soda (45%), and others in community drink them (42%). On average, 93% of caregivers believed drinking a lot of sugar-sweetened fruit drinks leads to cavities in children and caregivers agreed (mean 4.1 on 5-point scale, 5 = strongly agree) it is important to limit sugar-sweetened fruit drinks. Among a sub-sample of respondents (n = 20), we found low to moderate temporal stability in some SFDQ items over a 10-14 day period, indicating respondent ambivalence and/or uncertainty. Using community-based participatory research methods, we developed a culturally tailored exploratory questionnaire that will be used to describe changes in caregiver knowledge, beliefs, attitudes, self-efficacy, and behavior within a planned intervention to reduce sugar-sweetened fruit drink intake in Alaska Native children.

"It's Not Love, Baby Doll. It's Science": Experiences of Trauma Bonding Among Survivors of Sex Trafficking.

Trauma bonds between sex trafficking survivors and their traffickers or other perpetrators are one of the most complex and least understood concerns facing survivors. This community-based participatory research phenomenological study sought to understand how survivors have experienced trauma bonding. The sample consisted of 19 female survivors who were all participants in or graduates of a human trafficking specialty docket. Two themes emerged from the data. The first theme is the source of the trauma bond, namely who survivors had trauma bonds with. The second theme is features of trauma bonds, which included three subthemes: survivors have experienced trauma bonds (a) as involuntary, (b) as having lingering power, and (c) as consisting of both love and hate. These findings contain significant implications for practice, policy, and future research.

Intersectionality in Housing Research: Early Reflections from a Community-based Participatory Research Partnership

Intersectionality in Housing Research: Early Reflections from a Community-based Participatory Research Partnership

Blood and Bone: Ancestors, Power, and Sacred Identity Among Nonbinary Black Womxn

This community-based participatory action research project led by the C.I.R.C.L.E. (Collective Infiltrating Research to Center Community, Liberation, and Embodiment) employed interpretative phenomenological analysis via eco-womxnist and Afro-Indigenous cosmological frameworks to examine the connection between gendered-racial identity and sacredness among 11 nonbinary Black womxn (NBBW) from the US. Using semi-structured qualitative interviews, we elicited participants’ responses to the following inquiry: Would you we describe being a nonbinary Black womxn as sacred? Why or why not? Data analysis resulted in two themes: (a) Origins of Sacred Powers and (b) Manifestations of Sacred Powers. Four subthemes informed Manifestations of Sacred Powers: Sight/Seers, Osmosis, Intergenerational Healing/Curse Breaking, and Immortality. Participants described these four interconnected manifestations of sacred powers in service of collective and individual liberation, rooted in African spirituality, ancestral power, and the gendered-racial identity. We conclude with implications for future research and clinical practice with NBBW regarding spiritual beliefs, practices, and identities.

Exploring community-based participatory research for household and ambient air pollution projects: insights from key informants

BackgroundDespite the extensive use of community-based participatory research (CBPR) in health-related projects, there is limited work on how CBPR processes result in outcomes, especially in household and ambient air pollution (HAAP) research. This study explores the reflections of key informants on factors that shape the implementation and outcomes of CBPR in HAAP projects.MethodsWe conducted semi-structured interviews with 13 key stakeholders, including academic researchers, non-governmental organisation administrators, a policymaker, and community members. All interviewees have experience in CBPR projects. Interviews were analysed using framework analysis, and findings were mapped to Wallerstein et al.’s CBPR conceptual model, which consists of four constructs: context, partnership processes, intervention and research, and outcomes.ResultsThe findings are described under two main categories: ‘barriers to participation’ and ‘good practices for effective CBPR design and implementation’. Relevant sub-categories were barriers at the structural, research, community, and individual levels. Suggestions for good practices included respect, cultural humility, trust, effective communication, suitable and affordable interventions such as improved cookstoves, appropriate participatory research tools, and gratuity for the community’s time.ConclusionKey informants’ perspectives identified factors supported by the CBPR model to inform the design and implementation of the CBPR approach. The add-ons to some of the model’s factors, such as intra-community dynamics, give value to the informants’ knowledge to support community-research partnerships and improve outcomes in HAAP intervention projects. Addressing these factors at the design stage and reporting CBPR evaluation could deepen the understanding of community-research partnerships.

Engaging oncology and occupational medicine to inform design of a Total Worker Health® intervention to address employment, financial, and well-being outcomes in cancer survivors.

Few Total Worker Health® studies, and fewer interventions, examine well-being in the work context of cancer survivorship. We investigated the possibility of occupation and oncology professionals working together to address employed survivors' work-associated needs. We employed a community-based participatory research (CBPR) approach to examine the educational, contextual, and workflow needs of oncology care team members to inform intervention design. Focus groups were conducted with oncology care team members and occupational medicine physicians. Key themes from each group were then examined. Themes included oncology care team's role in helping patients navigate resources, providing psychosocial support, and educating patients. Major themes for ways to better provide employment-related support during treatment included referring patients to employment experts and providing education on employment support. Occupational health professionals in collaboration with oncology clinics could play an important role in assisting cancer survivors' ability to navigate employment challenges.

Overcoming Barriers to Latino Participation in Alzheimer's Disease Research.

There is a critical need to increase Latino participation in research on Alzheimer's disease and related disorders (ADRD). Applying principles of community-based participatory research, we convened a community advisory board (CAB) to identify barriers and recommend strategies to increase participation of older Latinos in a longitudinal observational research study of ADRD at the Shiley-Marcos Alzheimer's Disease Research Center. Six major barriers were identified and programmatic changes to overcome them were implemented. Changes resulted in a nearly three-fold increase in the number of Latino individuals recruited, with the proportion of all newly recruited participants who were Latino increasing from 12.2% to 57.4%. Newer Latino recruits were more representative of the elderly Latino population in San Diego County than those recruited pre-CAB and remained highly agreeable to blood draw and neuroimaging, though less so to lumbar puncture and autopsy. Results demonstrate the value of CAB involvement in enhancing diversity in ADRD research.

Assessing Drought Impacts on Water Resources and Metal Exposure in a Rural Community: A Community-Based Participatory Research Approach.

Assessing Drought Impacts on Water Resources and Metal Exposure in a Rural Community: A Community-Based Participatory Research Approach.