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The conceptual, historical and practical roots of community based participatory research and related participatory traditions
... As a relational approach to doing research "with" rather than "on" communities, CBPR draws on several principles to facilitate equitable partnership and co-learning (see Israel et al., 2008) and aligns with a transformative paradigm. For example, addressing power disparities between the researcher and the community, utilizing each partner's unique strengths, and a commitment to mobilizing knowledge for action (Israel et al., 2008;Wallerstein and Duran, 2008) were instrumental in our project. These principles are critical when developing research partnerships with immigrant and refugee communities, which require ethical navigation of linguistic and cultural differences rooted in social power differentials (Georgis et al., 2018). ...
... Understanding the research approach as a collaborative effort reassured team members, especially the community leaders and cultural brokers that all decisions regarding the research would be made in consultation and accordance with the CBPR principles. Throughout the project, the academic members of the research team were conscious of our position of power and leadership with the backing of an academic institution, which inherently conveys privilege (Wallerstein and Duran, 2008). We also recognized that we were the "knowledge holders" during the training components that focused on understanding trauma and potential impacts on refugees' mental health and wellbeing within the context of the ADAPT and Social Integration frameworks. ...
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 action research implies horizontal cooperation. In the WohL Study, the collaborative search by the municipalities of the district and the researchers follows the principle of Community-based Participatory Research (CbPR) (Duran & Wallerstein, 2003;Fine et al., 2021;Israel et al., 1998;Minkler & Wallerstein, 2008;von Unger, 2012;2014;von Unger et al., 2007;Zuber-Skerritt, 2015). According to CbPR, horizontal cooperation starts with an agreement on a common research question. ...
Rising housing prices, associated supply gaps and displacement processes have revived the "housing issue" in Germany. This is particularly true for certain social groups socially marginalized by high competition in the housing market. The participatory action research study "Wohnungsleerstand wandeln!"(WohL)-"Worthy places from unused spaces" examines the coexistence of housing scarcity and housing abundance in a district of the Munich metropolitan area. The goal is to use a participatory multi-method design, including a two-stage qualitative Delphi Survey, to find tailored solutions for the housing situation in each community. The Delphi method was used to reflect the diversity of perspectives in housing as well as the principles of participatory action research such as participation in research, proximity to the field, and capacity building through mutual learning. In the case of sustainable housing solutions, a group discussion process, in which facts are listed by participants (who remain anonymous) without taking into account local social structures, can lead to conclusions that are not accepted by the community. Hence, this paper explains how a Delphi Survey can be designed as a qualitative element of participatory action research. Therefore, the WohL Study and its qualitative Delphi Survey are presented, followed by a methodological reflection on the findings. It becomes clear that consensus and anonymity have to be balanced with solution sustainability. Criteria like the selection of participants, the process of group discussion as well as data collection and analysis have to be adapted to the specific field to be explored. New, diversity-sensitive and method-based approaches to decision making pave the way for a transformation of housing that must imply "vacancies" are to be (re)used, but also that collective decision-making brings "overlooked" groups "back into play." Ultimately, the essential prerequisite for managing the transformation is the participation of the people of the community.
... It has become clear that many heritable factors and social and structural determinants of health as part of an obesogenic environment contribute more to weight and BMI than do individual choices about nutrition and physical activity [15,[52][53][54][55][56]. Some of these factors are depicted in Fig. 1, adapted from the socioecological model [57][58][59]. As shown, the weight of an individual is influenced by variables at an individual, interpersonal (most often family), organizational (frequently school and in some cases clinic), community, and societal/policy level-most of these variables are outside of a particular adolescent or family's control. ...
Purpose of Review
This review aims to elucidate the limitations of diagnosing metabolic syndrome in adolescents as well as challenges and opportunities in the identification and reduction of cardiometabolic risk in this population.
Recent Findings
There are multiple criticisms of how we define and approach obesity in clinical practice and scientific research, and weight stigma further complicates the process of making and communicating weight-related diagnoses. While the goal of diagnosing and managing metabolic syndrome in adolescents would be to identify individuals at elevated future cardiometabolic risk and intervene to reduce the modifiable component of this risk, there is evidence that identifying cardiometabolic risk factor clustering may be more useful in adolescents than establishing a cutoff-based diagnosis of metabolic syndrome. It has also become clear that many heritable factors and social and structural determinants of health contribute more to weight and body mass index than do individual behavioral choices about nutrition and physical activity. Promoting cardiometabolic health equity requires that we intervene on the obesogenic environment and mitigate the compounding effects of weight stigma and systemic racism.
Summary
The existing options to diagnose and manage future cardiometabolic risk in children and adolescents are flawed and limited. While striving to improve population health through policy and societal interventions, there are opportunities to intervene at all levels of the socioecological model in order to decrease future morbidity and mortality from the chronic cardiometabolic diseases associated with central adiposity in both children and adults. More research is needed to identify the most effective interventions.
... CBPR has become an established methodological framework for partnering with Indigenous communities to conduct research, but has been sparsely applied to understanding and addressing Indigenous sexual and reproductive health (SRH) [13,14]. CBPR also has the potential to facilitate the implementation of complex trials conducted in AI communities, particularly given its amenability to multisectoral stakeholder involvement in the research process [14][15][16][17]. The nexus of NE's trial design, grounded in a fusion of tribal requirements, local beliefs, and Western science, has an overarching framework of CBPR to address SRH disparities. ...
Background
Nen ŨnkUmbi/EdaHiYedo (“We Are Here Now,” or NE) is an intervention to prevent STIs, HIV, HCV, and teen pregnancy among Assiniboine and Sioux youth of the Fort Peck Reservation in the state of Montana in the USA. A cluster-randomized stepped-wedge design (SWD) trial is used to evaluate NE, where clusters are schools. The purpose of this study is to evaluate whether there is evidence of a secular trend associated with the COVID-19 pandemic.
Methods
The original study design is a cluster-randomized stepped-wedge design (SWD), in which five schools that youth from Fort Peck attend are the clusters to be randomized into the intervention one at a time, with all schools eventually being randomized to the intervention across three steps. N/E is a 5-year study involving 456 15- to 18-year-old youth. For this study, we use a mixed quantitative and qualitative methods approach to understand how the COVID-19 pandemic may have been associated with the study’s primary outcome variables. Data were drawn from the first cluster exposed to the intervention and one control cluster that did not yet receive the intervention during the period in which COVID-19 mitigation efforts were being implemented. A pre-post COVID questionnaire was added to core measures administered, and semistructured qualitative interviews were conducted with youths regarding their perceptions of how the pandemic altered their sexual behaviors.
Results
One hundred eighteen youth responded to the questionnaire and 31 youth participated in semistructured qualitative interviews. Youth reporting having sex with less people due to COVID-19 reported more sex acts (incident rate ratio (IRR)=3.6, 95% CI 1.6–8.1) in comparison to those who did not report having sex with less people, and youth who reported having sex with the same amount of people due to COVID-19 reported less sex acts (IRR=0.31, 95% CI 0.14–0.7) in comparison to those who did not report having sex with the same amount of people. Youth reporting having sex less times due to COVID-19 experienced a greater number of sex acts in comparison to those who did not report having sex less times (IRR=2.7, 1.2–6.4). Results suggest that more sexually active individuals reported perceiving having sex with less people and less frequent engagement in sex during the pandemic. It is possible that the COVID-19 pandemic period was associated with a truncation in the distribution of sexual activity that would bias an estimate of the intervention’s effect.
Conclusion
Findings suggest evidence of a secular trend. This trend must be accounted for at trial end, and sensitivity analyses are recommended. Documenting and reporting on these findings encourages transparent reporting during the implementation of a SWD trial during a global pandemic, and informs endline analyses.
Trial registration
This trial is registered with the Clinical trials registry of the US National Library of Medicine at the National Institutes of Health (NIH). It was registered on October 1, 2018. The study presented in this manuscript is funded by NIH National Institute on Minority Health and Health Disparities (NIMHD), Award # R01MD012761-01, Elizabeth Rink (Principal Investigator). The study’s ClinicalTrials.gov number is NCT03694418.
Partnerships that effectively engage in certain key structural and process functions are more likely to meet their research goals and contribute to longer-term health equity outcomes. Ongoing evaluation of partnerships’ level of achievement of these key functions, along with their fidelity to the guiding principles of community-based participatory research (CBPR), is therefore essential to understand how they can achieve desired partnership outcomes. This article describes the validated Measurement Approaches to Partnership Success (MAPS) Questionnaire and the use of an accompanying Facilitation Guide in helping members of CBPR partnerships evaluate their partnership’s state of development and interpret findings to improve its structure, processes, and outcomes. We describe the conceptual framework guiding the development of the MAPS Questionnaire and its 81-item across seven key outcome dimensions, along with 28 items measuring precursor characteristics of CBPR partnership outcomes. The Facilitation Guide provides general guidelines for sharing, interpreting, and applying results within partnerships using a participatory process, definitions and items for each dimension, an example of presenting summary means, and dimension-specific reflective questions for discussion. We offer recommendations for practical uses of the MAPS Questionnaire and Facilitation Guide. Whether used as a comprehensive tool or by dimension, the MAPS Questionnaire is conceptually sound and empirically validated for evaluating how CBPR partnerships can achieve long-standing success. CBPR partnerships at any stage of development will find the MAPS Questionnaire and Facilitation Guide useful in measuring and interpreting indicators of partnership success, sharing results, and improving their ability to contribute to achieving health equity goals.
In the UK there has been a marked increase in children from minority ethnic families receiving an autism diagnosis but there continues to be a dearth in research that has explored the diversity of families’ lived experiences. The research sought to address this under-representation by using a transcultural approach to understand how families are drawing on multiple cultural influences in response to having an autistic child. Combining transculturalism with a narrative interview approach made it possible to pay attention to the ways in which families’ lives are transformed when they have an autistic child, how parents develop multiple identities in their interactions with professionals and family members across different social and cultural contexts and the impact this has on their sense of belonging to the community and networks of support. A thematic analysis of the families’ transcultural experiences showed that there were commonalities in their experiences of parenting children with autism as well as distinct and relevant cultural values and resources which influenced their individual responses to having an autistic child. The families wanted teachers in mainstream schools and those in their community to have more understanding and knowledge about how autism affected their lives and positive recognition of the solution-focused strategies that they were using to advocate for their autistic child’s healthcare and education. The findings from this research supported the development of a transcultural model that will be of value in developing culturally responsive pedagogical practice in autism education. The recommendations are that there is a need to further address culture and ethnicity in research on autism and special education, encouraging teachers to think about how they work with autistic children and the social and cultural realities that are an essential aspect of families’ transcultural lives.
Evaluators have become increasingly aware of the influence of culture in evaluation, leading to new evaluation approaches that account for the cultural considerations in which evaluations are situated. This scoping review sought to explore how evaluators understand culturally responsive evaluation and identify promising practices. A search of nine evaluation journals yielded 52 articles that were included in this review. Nearly two-thirds of the articles stated that community involvement was essential to culturally responsive evaluation. Power differentials were discussed in almost half of the articles, and the majority used participatory or collaborative approaches to community engagement. Findings from this review suggest that in culturally responsive evaluation, evaluators prioritize community involvement and have an awareness and attentiveness to power differentials. Yet, gaps exist in how culture and evaluation are defined and interpreted, and consequently, inconsistency in how culturally responsive evaluation is practiced.
This article aims to provide a record of how the use of the method of photovoice facilitated an enriched teaching and learning experience for graduate students in a Theories of Social Justice in Health class. The course required students from multiple disciplines to learn about social justice theories and then apply them to a health issue/concern. For their final project, students chose a topic of interest and choose to complete a traditional paper or a photovoice project using one (or more) of the social justice theories examined in the course. Our manuscript describes four students’ and the professor’s experiences to document the positive impact the photovoice project had on their learning of social justice theory. Through this process, the students found the qualitative research method of photovoice to be a successful pedagogical tool for engagement and provided an experiential learning opportunity for co-creating and sharing knowledge.
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