Participatory Research Partnership Research Articles

Ohpikihâwasowin (grounding and guiding on the path to be a healthy parent): virtual adaptation of an Elders mentoring program to support maternal and child wellbeing during the COVID-19 pandemic

BackgroundThe Elders Mentoring Program (EMP) is part of a strengths-based community-based participatory research partnership with the Cree communities of Maskwacîs, Alberta, Canada. The EMP objective is to promote maternal and child health through traditional Cree teachings and support from community Elders to pregnant women and their partners. During the COVID-19 pandemic, the Elders decided to shift the program to an online format in early 2021. The Elders continued to offer mentorship to program participants virtually by Zoom and telephone, and online workshops. The objective of this study was to qualitatively explore the experiences of women that took part in the virtual EMP.MethodsWe utilized qualitative description as our method, informed by our overarching community-led research partnership. Semi-structured phone interviews were conducted by Maskwacîs research assistants (RAs) with 11 women who participated in the virtual program. Interviews were conducted between December 2021 and June 2022. The participants were asked about their perceptions of the program and its benefits. The interviews were recorded, transcribed, and coded by four RAs using thematic analysis.ResultsAlthough cultural teachings are traditionally offered in person, the shift to the virtual platform was greatly appreciated by all the women. Technology can be a useful tool for cultural teachings and language to be shared among community members when they cannot be physically together. Four main themes emerged from the data, representing the participants’ experiences, and learning through their interactions with the Elders from the EMP. The themes are: Ohpikihâwasowin (grounding and guiding on the path to be a healthy parent); Indigenous ways of healing; On the path of cultural learning; and Identity for self and baby.ConclusionThe virtual adaptation of the EMP allowed a space for Elders to offer support to women living in and out of the community to provide guidance with their pregnancies and into motherhood. The workshops and one-on-one calls allowed for cultural revitalization which is critical for Indigenous well-being. All the participants found that the teachings and interactions positively impacted their pregnancy and parenthood. Overall, the virtual program demonstrated a venue for intergenerational healing and resilience.

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

Community-based participatory research partnership to identify and address climate change health effects in climate-sensitive subpopulations in San Francisco

Community-based participatory research partnership to identify and address climate change health effects in climate-sensitive subpopulations in San Francisco

Risk factors associated with loneliness among mexican-origin adults in southern Arizona

This study examines factors associated with symptoms of loneliness among a sample (n = 213) of mostly Mexican-origin adults at risk of chronic diseases in Southern Arizona’s Pima, Yuma, and Santa Cruz counties. It uses baseline data from a community-based participatory research partnership and multinominal logistic regression models. Controlling for chronic diseases and sociodemographic characteristics, perceived social support and hope exhibit negative main effects on loneliness when comparing individuals who experienced loneliness for 5–7 days in the preceding week with those who did not encounter such feelings during the same period (adjusted odds ratio, AOR = 0.49 and 0.47; 95% confidence interval, CI = 0.34–0.73 and 0.29–0.75, respectively). However, when considered together, perceived social support and hope display a positive and statistically significant combined effect on loneliness (AOR = 1.03; 95% CI = 1.01–1.06). Holding all covariates constant, individuals reporting loneliness for 5–7 days exhibit a relative risk ratio of 1.24 (95% CI = 1.06–1.46) for a one-unit increase in physical problem severity compared to those who do not experience loneliness. Moreover, being 65 years old or older (AOR = 0.16, 95% CI = 0.03–0.84), and having been born in Mexico and lived in the US for less than 30 years (AOR = 0.12, 95% CI = 0.02–0.74) are associated with negative main effects on loneliness when comparing individuals who experienced loneliness 1–2, and 5–7 days in the preceding week with those who did not feel loneliness during the same timeframe, respectively. Recognizing the crucial role of loneliness in shaping health outcomes for Mexican-origin adults, our findings underscore the significance of fostering supportive environments that not only enhance well-being but also cultivate robust community bonds within the US-Mexico border region.

Interrogation, Negotiation, and Subversion of Power Differentials in Community-Based Participatory Research: A Scoping Review

Abstract: Objectives: To review empirical and peer-reviewed scholarly articles incorporating community-based participatory research approaches and examining discourses of how power differentials are interrogated, negotiated, and redressed within the partnerships using scoping review methodology following The Joanna Briggs Institute framework and Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). Data Sources: Articles were identified across five online databases: Embase, ERIC, PsycINFO, PubMed, and Web of Science. Review Methods: Keywords used in the search strategy were (“Community-Based Participatory Research” OR “Participa-tory Action Research”). Peer-reviewed scholarly articles discussing in-depth power differentials within the partnership published in English between 2010 and 2020 were included. Results: Findings indicate scholars use critical reflexive qualitative methodologies to recognize and raise relevant questions of power issues between researchers and community stakeholders. Examination of individual biases, assumptions, and exertion of hierarchical top–down power is identified extensively. There is limited analysis on institutional and interdependent power. As a result of raising questions regarding power issues, individual actions to address emerging tensions and conflicts were reported. However, discussions on researchers’ efforts to effect institutional and structural changes to redress power imbalances were limited. Conclusions: Building strong and equitable participatory action research collaborations between researchers and community stakeholders remains an arena of continuous struggle. This review offers some insights and relevant implications to better address power issues within participatory action research partnerships and inform the work of professionals engaged in the development, implementation, and evaluation of health promotion initiatives and policies.

Understanding uptake of COVID-19 testing, vaccination, and boosters among Spanish-speaking Latines in the United States: Qualitative insights from Spanish speakers and key informants.

Latine communities in the United States have been disproportionately affected by COVID-19. It is critical to gain a better understanding of the sociocultural determinants that challenge and facilitate COVID-19 testing, vaccination, and booster uptake within these vulnerable communities to inform culturally congruent strategies and interventions. In summer 2022, our community-based participatory research partnership conducted 30 key informant interviews and 7 focus groups with 64 Spanish-speaking Latine participants in North Carolina. Interviewees consisted of representatives from health and service organizations, most of whom were engaged with direct service to Spanish speakers. Interviews were conducted in either English or Spanish, depending on the preference of the participant; all focus groups were conducted in Spanish. Interviews and focus groups were conducted in person or by videoconference. Twenty themes emerged that we organize into four domains: general perceptions about COVID-19; barriers to COVID-19 testing, vaccination, and booster uptake; facilitators to COVID-19 testing, vaccination, and booster uptake; and recommendations to promote testing, vaccination, and booster uptake. Results underscore important sociocultural determinants of ongoing COVID-19 testing, vaccination, and booster uptake to consider in developing interventions for Spanish-speaking Latines in the United States. Based on this formative work, our partnership developed Nuestra Comunidad Saludable (Our Healthy Community). We are implementing the intervention to test whether trained peer navigators can increase COVID-19 testing, vaccination, and booster uptake among Spanish-speaking Latines through blending in-person interactions and mHealth (mobile health) strategies using social media.

A Community-Based Participatory Approach in Applying the Sociocultural Resilience Model in U.S–Mexico Border Communities

Abstract: Background: Behavioral models play a key role in identifying pathways to better health and provide a foundation for health promotion interventions. However, behavioral models based in epidemiological research may be limited in relevance and utility in practice. Objectives: We describe a participatory approach within a community-based participatory research partnership for integrating epidemiological and community perspectives into the application of the sociocultural resilience model (SRM). The SRM posits that cultural processes have a symbiotic relationship with health-promoting social processes, which contribute to the health advantages among Mexicanorigin and other Latinx populations. Methods: Community action board members engaged with academic partners to interpret and apply the SRM to a community-clinical linkages intervention implemented in the context of three U.S.–Mexico border communities. In a two-day workshop, partners engaged in a series of iterative discussions to reach common definitions and measures for SRM constructs. Results: Partners described daily cultural processes as the food they eat, how they communicate, and a collectivist approach to getting things done. For intervention activities, the partners opted for intergenerational storytelling, sharing of food, and artistic forms of expression. Partners included measures of cultural nuances such as border identity and the complexities that often arise from navigating bicultural norms. Conclusions: Collaborative approaches within community-based participatory research partnerships can facilitate the adaptation and measurement of conceptual health behavior models in community practice.

Socio-Demographic and Behavioral Predictors of Admission for Kidney Disease in an Urban Hospital in Northwest Indiana

Background: The CDC estimates more than 1 in 7 American adults have Chronic Kidney Disease (CKD) and nearly 800,000 live with End-Stage Renal Disease (ESRD); the majority of whom require dialysis. Current literature demands further exploration on how social determinants of health (SDOH) influence inpatient and emergency services utilization for CKD/ESRD-related exacerbations. This study examined socio-demographic and behavioral factors associated with hospital admission for CKD/ESRD. It is part of a three-phased Community-Based Participatory Research (CBPR) partnership between IUSM-NW and St. Mary Medical Center (SMMC) to examine and address relationships between SDOH, patient demographics, health behaviors, and health outcomes from January 2022-January 2025.
 Methods: This retrospective study analyzed a limited dataset generated by SMMC from EPIC™ with SDOH, demographic, health behavior, and health outcomes data obtained from adult inpatients between January 2021 and March 2023. CKD/ESRD was determined by admission diagnosis ICD-10 Code N18. Data analysis utilized SPSS 29.0 to produce frequencies, Chi-Square tests (p<0.05), and a binary logistic regression (p<0.05). This study was exempted by Indiana University Human Research Protection Program (IRB # 14040).
 Results: This study included 10,953 inpatient admissions involving predominantly white (78.4%) and older adult (68 ± 21) patients. CKD/ESRD represented 96 admissions. The bivariate analysis found a significant association between CKD/ESRD admissions and age (p<0.001), race (p<0.001), sex (p=0.008), insurance type (p=0.030), and smoking tobacco use (p=0.004). After adjusting for all factors, being Asian (OR=12.172, p<0.001), Black (OR=3.702; p<0.001), female (OR=0.518; p=0.003), publicly insured (OR=2.76; p=0.014), and former smoking (OR=1.606; p=0.045) were significantly associated with CKD/ESRD admission.
 Conclusions: This study revealed several demographics, SDOH, and health behaviors associated with CKD/ESRD admission in an urban hospital. Uncovering predictors of CKD/ESRD admission enables focused interventions to decrease admissions. The next CBPR phases will apply advanced statistical analyses to further explore these relationships and codevelop interventions.

Neurovascular Conditions and Associated Socio-Demographic and Behavioral Factors in an Urban Hospital in Northwest Indiana

Background: Brain health equity remains an underexplored research area despite high prevalence of neurovascular conditions and related health impacts. This study examined the associations between socio-demographic, behavioral factors, and hospital admissions for neurovascular-related morbidity in an urban underserved community. It is part of a multi-phased Community-Based Participatory Research (CBPR) partnership between Indiana University School of Medicine-Northwest and St. Mary Medical Center (SMMC) to examine the prevalence, distribution, and relationships between social determinants of health (SDOH), demographics, health behaviors, and health outcomes in Northwest Indiana.
 Methods: This retrospective study analyzed a limited dataset generated by SMMC from EPIC™ with SDOH, demographic, behavioral and health outcomes data for adult inpatient visits from January 2021 to March 2023. Neurovascular admission was determined by ICD-10 Codes I67-69. Data analysis was conducted in SPSS 29.0 using descriptive statistics (i.e., frequencies and central tendency), bivariate analysis (Chi-square; p<0.05), and multivariate analysis (binary logistic regression; p<0.05). This study received exemption from Indiana University Human Research Protection Program (IRB #14040).
 Results: There were 1,489 participants included in this study. The majority were white (77.7%), older adults (67 ± 21.5) and publicly insured (77.8%). The bivariate analysis demonstrated significant relationships between admission for neurovascular conditions and age group (p<0.001), veteran status (p<0.001), insurance type (p<0.037), and physical activity (p<0.001). After adjusting for these factors in multivariate analysis, age group (p< 0.003) and physical inactivity (p<0.008) were significantly associated with admission for neurovascular conditions.
 Conclusion: Understanding how SDOH and behavioral factors influence neurovascular admissions and inequities in urban settings will enhance collaborative efforts to develop, implement, and evaluate evidence-based interventions. The subsequent CBPR phases will utilize these findings to explore how socioeconomic status affects these patients’ ability to seek emergent and/or surgical care. This will enable implementation of strategies that better account for SDOH in patient care.

Social Determinants of Health and 30-Day Readmissions in an Urban Community Hospital in Northwest Indiana

Background: Hospital readmission within 30 days of discharge is a quality of care indicator with implications for healthcare systems, payers, and patients. The Hospital Readmission Reduction Program enacted in 2012 aimed to reduce preventable readmissions. Yet in 2018, there were 3.8 million adult 30-day readmissions with an average rate of 14% and estimated cost of $15,200 per readmission. This study examined the influence of social determinants of health (SDOH), demographics, and health behaviors on 30-day readmissions at an urban hospital in Northwest Indiana. This is part of a Community-Based Participatory Research (CBPR) partnership between Indiana University School of Medicine-Northwest and St. Mary Medical Center (SMMC) to address SDOH.
 Methods: This retrospective study analyzed a limited dataset generated by SMMC in EPIC™ with SDOH, demographics, health behaviors, and health outcomes measures from inpatient admissions between January 2021 to March 2023. Data analysis consisted of descriptive, bivariate (Chi-Square; p<0.05), and multivariate (binary logistic regression; p<0.05) analyses in SPSS 29.0. This study was exempted by the Indiana University Human Research Protection Program (IRB #14040).
 Results: The sample consisted of 7445 patients, majority 65 years and above (56.5%), white (77.47%), and publicly insured (76.83%). 30-day readmissions represented 10.5% of admissions. The bivariate analysis revealed statistically significant associations between 30-dayreadmissions and age (p<0.001), language (p=0.008), insurance type (p<0.001), veteran status (p=0.017), and smoking (p<0.001). The multivariate analysis found that age (OR=1.008; p=0.004), being a non-English speaker (OR=1.866; p=0.009), public insurance (OR=2.096; p<0.001), and former smoking (OR=1.243; p=0.011) remained significantly associated with 30-day readmission.
 Conclusions: Social and behavioral factors were associated with 30-day readmissions in an urban community hospital. Incorporating SDOH and behavioral interventions into hospital readmission reduction programs may reinforce these programs. The upcoming CBPR phase will conduct advanced analysis on these findings to uncover new relationships relevant to SMMC’s objectives.

Social Determinants of Health Associated with Inpatient Admissions for Congestive Heart Failure, Diabetes, Chronic Obstructive Pulmonary Disease, and Asthma

Introduction: The CDC and American Lung Association estimate that congestive heart failure (CHF), diabetes, chronic obstructive pulmonary disorder (COPD), and asthma (COPD/asthma) cost Americans $30.7 billion, $327 billion, and $50 billion respectively each year. They account for most inpatient readmissions at St. Mary Medical Center (SMMC), an urban hospital in Northwest Indiana. There is need for further research on the social, behavioral, and demographic determinants associated with these conditions. This study examined the social, behavioral, and demographic determinants associated with inpatient admission for CHF, diabetes, COPD/asthma in SMMC’s service area.
 Methods: This retrospective study was part of a multi-phased Community-Based Participatory Research partnership between SMMC and Indiana University School of Medicine Northwest. SMMC implemented a pilot screening and referral program to assess social determinants of health in their service area as part of their Hospital Readmission Reduction Program. This study included data from 10,953 inpatient admissions between January 2021 to March 2023, majority of whom were transferred from the emergency department. Data analysis consisted ofunivariate, bivariate (Chi-square), and multivariate (binary logistic regression) analysis in SPSS 29.0.
 Results: Bivariate analysis revealed a statistically significant association between CHF and smoking, age, insurance type, and income. Diabetes was significantly associated with smoking, smokeless tobacco use, age group, race, income, and sex. COPD/asthma was significantly associated with smoking, age group, transportation needs, stress, insurance, ethnicity, and sex. Multivariate analysis found the following significant associations: age group with both CHF (p<0.001) and diabetes (p<0.001), former smoking with both CHF (p = 0.007) and COPD/asthma (p = 0.049), current smoking with COPD/asthma (p = 0.016), and sex with diabetes (p <0.001).
 Conclusions: These findings indicate significant associations between multiple sociobehavioral factors and admission for CHF, diabetes, COPD/asthma. Multi-risk-factor interventions may address these interactions and contribute to reducing readmission.

Identifying Socio-Demographic and Behavioral Predictors of Prolonged Hospital Stay in an Urban Hospital in Northwest Indiana

Background: Hospital length of stay (LOS) is a crucial metric that impacts patient outcomes, healthcare resource utilization, and financial burden. In 2019 the CDC reported the average LOS in community hospitals was 5.4 days. Prolonged LOS is associated with an increased risk of hospital-acquired infections, decreased hospital bed availability limiting patient access to care, and cognitive impairment, particularly among the elderly. This indicates the importance of addressing LOS as a healthcare priority. This study examined the relationship between LOS and social determinants of health (SDOH), patient demographics, health behaviors, and health outcomes as part of a long-term Community Based Participatory Research partnership between IUSM-NW and St. Mary Medical Center (SMMC).
 Methods: This retrospective study analyzed EPIC™-generated data for adult inpatient visits at an urban hospital in Northwest Indiana from January 2021 to March 2023. Data analysis was performed using SPSS 28.0, consisting of descriptive statistics, bivariate analysis (One-way ANOVA, Independent T-tests, Kruskal Wallis H; p<0.05), and Simple Linear Regression. This study was granted an exemption by the Indiana University Human Research Protection Program (IRB #14040).
 Results: The sample comprised of 10,916 predominantly white (77.7%) patients with a median age of 65 (IQR=22) and a median LOS of 4 days (IQR= 5). Bivariate analysis revealed LOS was significantly associated with age (p<0.001), race (p<0.033), sex (p<0.012), insurance type (p<0.001), physical inactivity (p<0.001), and smoking tobacco (p<0.001). After controlling for all factors in the multivariate analysis, age (p<0.020), physical inactivity (p<0.013), and insurance type (p<0.013) retained their significance.
 Conclusions: These findings highlight the significance of demographic, behavioral, and social factors in relation to hospital LOS. Understanding these factors holds immense potential to guide the development of targeted interventions and healthcare strategies to optimize patient care and reduce LOS.

Group Prenatal Care Models, Experiences, and Outcomes: An Integrative R

Background:The United States (US) has the highest maternal and infant mortality rates among developed countries. Indiana has the third highest maternal mortality rate in the US. Group Prenatal Care (GPC) was piloted in the early 1990s to improve perinatal experiences and outcomes through enhanced social support and education. Further research is needed as GPC is increasingly implemented in diverse contexts. This study critically synthesized current evidence on GPC models, experiences, and perinatal outcomes in the US to inform a Community Based Participatory Research Partnership between Indiana University School of Medicine-Northwest and Community HealthNet.
 Methods:This integrative review utilized PRISMA guidelines to conduct a systematic search in Embase, CINAHL, and PubMed. Two researchers screened articles for inclusion criteria and quality. Studies were included if they were empirical research or meta-analyses conducted in the US and published in English between January 2013 and June 2023. Data synthesis utilized a qualitative analytical approach that sorted findings thematically.
 Results:We retained 98 articles, including 8 meta-analyses, 4 randomized trials, 3 cluster randomized trials, 3 quasi-experimental studies, 4 prospective cohort studies, 12 observational studies, 19 qualitative studies, and 46 retrospective cohort studies. There were several GPC models adapted to high-risk groups such as persons living with HIV, gestational diabetes, pre-existing or pregnancy-induced hypertension, and substance use disorders. GPC was associated with decreased preterm births among low-income and minority women, with more significant reductions when attending 5 or more GPC sessions. GPC improved psychosocial outcomes including satisfaction with care, empowerment, and social connectedness. It was also associated with increased breastfeeding rates in adolescents and African Americans, and increased contraception use among adolescents.
 Conclusions:Engaging in GPC may have benefits for high-risk pregnancies, adolescents, low-income, and minority populations. More studies are needed to evaluate GPC’s impacts on perinatal experiences and outcomes among high-risk women.

Exploring power and power sharing in participatory health research partnerships: A scoping review protocol.

Participatory health research (PHR) as a research paradigm, guides the research process and strives to achieve positive change in society in the interest of people's health. In this scoping review, PHR will be used as an umbrella term considering a wide range of collaborative research approaches in the health context. PHR is conducted 'with' or 'by' those it intends to benefit, as opposed to 'on' and 'for' them. Their involvement throughout the research process seeks to shift power and decision-making from where they traditionally lay within academia toward community, patient and public end-users. Research cannot be truly participatory without concurrently addressing power dynamics within the partnership and power imbalances in decision making. Therefore, power sharing can be defined as a major factor in building effective academic-community collaborations. This scoping review aims to identify, clarify, and map existing literature on power and power sharing in PHR from both theoretical and practical perspectives. Specifically, we will explore how power is conceptualised throughout the literature, and how power and power sharing are applied and addressed in real-life PHR partnerships. This scoping review will be conducted in accordance with the guidelines outlined in the Joanna Briggs Institute (JBI) Reviewer's Manual. This scoping review will consider both empirical and non-empirical research that report on understanding power and power sharing in participatory health research partnerships. All appropriate studies will be retrieved from the following five electronic databases: PubMed, Scopus, Embase, PsycINFO, SocIndex. This review will be limited to articles published in English and from January 1998 to March 2024. As the scoping review aims to capture more than peer-reviewed and published literature, it will also include grey literature such as theses and dissertations, reports, conference proceedings, and editorials. Data from the included literature will be extracted based on the data extraction tool, defined in advance. As primary data will not be collected, ethical approval is not required to conduct the scoping review. The findings of this study will be disseminated through peer-reviewed publications.

BENEFITS AND BARRIERS OF COMMUNITY-ENGAGED RESEARCH AND STRATEGIES FOR STRENGTHENING PARTNERSHIP PRACTICE

Abstract The meaningful engagement of older people in research may help to address their lag behind other groups in health outcomes and low participation in studies. This symposium addresses the critical gap in the aging literature and advances knowledge about community engagement by offering insight from experts on the complexities of partnership and engagement processes that vary by context as well as tools and tactics for overcoming obstacles. The first speaker will present findings and lessons gained from evaluating the needs of a self-organizing community advisory board of Black older adults to increase enrollment in a participant research pool. The second will focus on the challenges of centering a diverse range of partners in the design of a health and wellness program tailored to the needs of formerly incarcerated mid and late-life adults. The third speaker will provide recommendations for researchers interested in working with Indigenous communities and strategies for working collaboratively, and how to overcome relational challenges. The fourth speaker will present findings from a reflective evaluation process of a community-based participatory research partnership that evolved over seven years and discuss how the partnership evaluation tool can enhance partner practice. This symposium concludes with reflections about meaningful and authentic academic-community partnerships in line with supporting and building bridges between aspiring and existing community engaged scholars and older people who are experts on aging.

Development of a Digital Storytelling Intervention to Increase Breast, Cervical, and Colorectal Cancer Screening in the Hispanic/Latino Community: a Qualitative Evaluation.

Digital storytelling (DST) interventions may be one way to address disparities in cancer screening experienced by the Hispanic/Latino population. Digital stories are short, first-person narratives that include voice-over narration and images. With storytellers' permission, researchers can screen digital stories as a health intervention. Digital stories can inspire viewers to adopt or change their behavior, such as completing cancer screening. Rochester Healthy Community Partnership (a 20-year community-based participatory research partnership) together with eight Hispanic/Latino, Spanish speaking cancer survivors, co-survivors, or recently screened individuals, developed digital stories about breast, cervical, and colorectal cancer screening. Here, we describe our qualitative evaluation of the DST workshop. To understand what the storytellers thought viewers would find relatable in their digital stories, we applied Narrative Theory. We also assessed workshop successes and opportunities for improvement. We used the constant comparative method for data analysis. We learned that the storytellers anticipated their stories would be engaging and that viewers would connect with Hispanic/Latino cultural values. During the workshop, the storytellers felt like they were making an important contribution. The storytellers highlighted specific opportunities for improvement including sharing the stories more quickly after the workshop. Future research is needed to test whether this intervention follows the Narrative Theory causal pathway by persuading viewers to complete recommended cancer screenings.

Understanding the evolution of trust in a participatory health research partnership: A qualitative study.

Advancements in evaluating the impact of participatory health research (PHR) have been made through comprehensive models like the community-based participatory research (CBPR) conceptual model, which provides a useful framework for exploring how context and partnership processes can influence health research design and interventions. However, challenges in operationalising aspects of the model limit our understanding and evaluation of the PHR process. Trust is frequently identified as an important component of the CBPR model, which supports the development of key partnership outcomes, such as partnership synergy. However, trust continues to be limited to a binary view (as present or absent), which is problematic given its inherently dynamic and temporal nature. The aim of this qualitative study is to understand the evolution of trust in the national public and patient involvement (PPI) network in Ireland. Participants from the PPI network (n = 15/21) completed a semistructured interview discussing the evolution of trust by reviewing four social network maps derived from a previous longitudinal study. Following Braun and Clarke, we used reflexive thematic analysis, to iteratively develop, analyse and interpret our mediated reflection of the data. Participants described the evolution of trust as a function of three contextual factors: (1) the set-up and organisation of the network, (2) how people work togetherand (3) reflection on the process and outcomes. Their descriptions across these themes seemed to vary depending on partnership type with National Partners and Site Leads having more opportunities to demonstrate trust (e.g., via leadership roles or more resources), compared to Local. Thus, visibility and the opportunity to be visible, depending on the set-up and organisation of the network and how people work together, seemingly play an important role in the evolution of trust over time. Based on these findings, we provide important questions for reflection across themes that could be considered for future PHR partnerships. Given that the opportunity and visibility to build and maintain trust over time may not be equally available to all partners, it is important to find ways to invest in and commit to equitable relationships as the key to the success (i.e., longevity) of partnerships. We reflect on/offer important implications for those engaging in PHR partnerships and those who fund such research. A Research Advisory Group comprising four research partners (representing academic, serviceand community organisations) from the PPI Ignite Network provided input and approval for the research objectives of this study as well as previously published work informing this study. Informal consultation occurred with members of this group to discuss findings from this study, assisting with the way findings are presented and described, to be accessible for diverse audiences. Two Research Advisory Group members were involved in the interpretation of the results, and one is a co-author of this manuscript (Zoe Hughes).

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.

Participatory Research Partnership in Rehabilitation—Co-Development of a Model for Collaboration Process

Purpose: Collaboration that engages diverse stakeholders to actively participate in the rehabilitation research process is becoming a crucially important approach when the purpose is to promote well-being in everyday life. The aim of this study was to co-develop a partnership-based participation model for research with stakeholders such as researchers, rehabilitees, close ones, rehabilitation professionals and experts by experience. Methods: We applied an action research approach. The Participatory Research Partnership (PaRe) model was co-developed in a multi-phase process including a literature review, workshops and focus group discussions (64 participants). The model was tested, evaluated and further developed in a developmental training process with 50 experts in rehabilitation. Results: The PaRe model consists of five phases: (1) starting the research partnership; (2) building a research team; (3) reciprocal co-planning of research; (4) co-production of new research data; and (5) utilization of research data in everyday life. The model comprises examples and templates including developmental and ethical evaluation. Conclusions: The PaRe model enhances co-agency, interaction and co-learning in rehabilitation research and practices. Active participation of users and providers of rehabilitation services in scientific research promotes everyday accessibility and relevance of research-based knowledge. The model ensures that the research process and results are meaningful and empowering for the participants.

Cultivating an Ecosystem: A Qualitative Exploration of Sustainability in Long-Standing Community-Based Participatory Research Partnerships

Abstract: Background: While sustainability is crucial to the success of community-based participatory research (CBPR) partnerships, there is a lack of conceptual clarity on what defines sustainability and what characterizes sustainability-promoting practices in long-standing (in existence 6 years or longer) CBPR partnerships. Objectives: The aim of this article is to explore the definition of sustainability, as well as practices that influence sustainability from the perspectives of academic and community experts in long-standing CBPR partnerships. Methods: This qualitative analysis is part of Measurement Approaches to Partnership Success, a participatory mixed methods validity study that examined "success" and its contributing factors in long-standing CBPR partnerships. Thematic analysis of 21 semistructured interviews was conducted, including 10 academic and 11 community experts of long-standing CBPR partnerships. Results: The key defining components of sustainability we identified include: distinguishing between sustaining the work of the partnership and ongoing relationships among partners; working towards a common goal over time; and enduring changes that impact the partnership. We further identified strengthening and capacity building practices at multiple levels of the partnership that served to promote the sustainability of the partnership's work and of ongoing relationships among partners. Conclusions: Sustainability can be understood as supporting an ecosystem that surrounds the beneficial relationships between academic and community partners. Ongoing evaluation and application of practices that promote the sustainability of partnership activities and relationships may strengthen the long-term effectiveness of CBPR partnerships in advancing health equity.