Primary biliary cirrhosis occurs more frequently in women, and previous studies indicated that the average age of primary biliary cirrhosis (PBC) onset makes pregnancy in PBC patients uncommon. However, more recently, improved diagnostic testing has enabled detection of PBC in younger women, including those of childbearing age. This has led investigators to become increasingly interested in the relationship between the ontogeny of PBC and pregnancy. Published cases indicate that the typical age for pregnant women to be diagnosed with PBC is in the early 30s, and that during gestation, pruritus and jaundice are the most common symptoms. During gestation, susceptible women may experience onset of PBC resulting from the drastic changes in female hormones; this would include not only the mitochondrial damage due to accumulation of bile acids but also changes in the immune response during the different stages of pregnancy that might play an important role in the breakdown of self-tolerance. The mechanisms underlying the potential relationship between PBC and pregnancy warrant further investigation. For women first diagnosed with PBC during gestation, or those for whom first appearance of a flare up occurs during and postpartum, investigation of the immune response throughout gestation could provide new avenues for immunologic therapeutic intervention and the discovery of new treatment strategies for PBC.
Community-engaged research is understood as existing on a continuum from less to more community engagement, defined by participation and decision-making authority. It has been widely assumed that more is better than less engagement. However, we argue that what makes for good community engagement is not simply the extent but the fit or alignment between the intended approach and the various contexts shaping the research projects. This article draws on case studies from three Community Engagement Cores (CECs) of NIEHS-funded Environmental Health Science Core Centers (Harvard University, UC Davis and University of Arizona,) to illustrate the ways in which community engagement approaches have been fit to different contexts and the successes and challenges experienced in each case. We analyze the processes through which the CECs work with researchers and community leaders to develop place-based community engagement approaches and find that different strategies are called for to fit distinct contexts. We find that alignment of the scale and scope of the environmental health issue and related research project, the capacities and resources of the researchers and community leaders, and the influences of the sociopolitical environment are critical for understanding and designing effective and equitable engagement approaches. These cases demonstrate that the types and degrees of alignment in community-engaged research projects are dynamic and evolve over time. Based on this analysis, we recommend that CBPR scholars and practitioners select a range of project planning and management techniques for designing and implementing their collaborative research approaches and both expect and allow for the dynamic and changing nature of alignment.
The last few decades have seen growing acceptance and use of research approaches involving non-academic partners. As reflected in the two recent special issues/sections of this journal addressing community-based participatory research (CBPR; Suarez-Balcazar et al., 2020;Wallerstein, 2021), these approaches have moved fairly rapidly from the fringes of scholarly conversations to their current position in multiple disciplinary mainstreams, particularly in public health and community psychology. Termed variously (e.g., CBPR, participatory action research; PAR; and community-university partnerships), communityengaged approaches to research (CEnR approaches) now appear in wide range of academic funding mechanisms and research programs, many of which target conditions associated with health inequities.With the benefits and validity of CEnR becoming more established in the mainstream, we are seeing scholarly conversations focus increasingly on the training, funding, incentivization, and evaluation of these collaborative and partnership approaches. The Engage for Equity: Advancing Community Engaged Partnerships (E2) project, for example, has advanced a science of CBPR (Wallerstein et al., 2020), providing a conceptual foundation and model for linking partnership contexts and dynamics to intermediate and long-term health equity outcomes (Kastelic et al 2018;Wallerstein et al., 2008). Developed empirically from two large surveys of research partnerships and community consultations (Belone et al., 2016), their conceptual CBPR model identifies a range of factors including communities' and universities' capacity and readiness, historical context of collaboration, formal agreements, and congruence of partners' core values that may predict positive system and capacity outcomes. This framework provides a strong, unifying foundation for the growing field of CEnR, capturing much of what has been learned about effective partnerships in the last few decades.Surveying this special section (Wallerstein, 2021), the recent special issue on CBPR approaches to health equity (Suarez-Balcazar, et al., 2020) and the broader landscape of CEnR literature, however, we are struck by the breadth of collaborative structures, partner roles, group processes, research methodologies, and types of actions being employed in these projects. While rooted in the values that are often considered fundamental to CEnR (challenging dominant assumptions about who holds and creates knowledge; Wallerstein & Duran, 2018; involving actions that benefit all partners; Israel et al., 1998), these projects are otherwise remarkably diverse in their strategies. We question, therefore, whether unifying language and frameworks will continue to support this growing discourse.Over time, various terms have emerged to describe certain CEnR approaches. Some, such as Youth Participatory Action Research (YPAR), have provided a platform for researchers to discuss the specific assumptions, strategies, and challenges of engaging youth in research. Others, such as CBPR and CEnR, are w...
This study focused on the association between type of community health interventions and lay health educator variables. Lay health educators are volunteers from local faith communities who complete a healthcare training program, taught by physicians in-training. Lay health educators are instructed to implement health-related initiatives in their respective communities after graduation. Of the 72 graduates since 2011, we surveyed 55 lay health educators to gain insight into their involvement with their congregation and the type of health projects they have implemented. We dichotomized the health projects into "raising awareness" and "teaching new health skills." Using adjusted logistic regression models, variables associated with implementing health projects aimed at teaching health skills included length of time as a member of their congregation, current employment, and age. These results may help future programs prepare lay health community educators for the type of health interventions they intend to implement in their respective communities.
IntroductionCommunity organizing initiatives, which build power through cycles of listening, participatory research, collective action, and reflection, have demonstrated the capacity to intervene on, complicate, and resist dominant societal narratives while promoting alternative public narratives focused on shared values and hope for a better future.MethodsTo explore processes of public narrative change and their relationship to community and organizational empowerment, we interviewed 35 key leaders in community organizing initiatives in Detroit, MI and Cincinnati, OH about how narrative change takes place within community organizing practices.ResultsLeaders’ perspectives revealed crucial roles for narrative and storytelling in guiding individual and collective behavior, supporting the development of relationships of trust and accountability, and linking personal and collective experiences to pressing social issues.DiscussionFindings from this study indicate that systemic change is a labor-intensive process and one that requires the development of leaders (stories of self) and the cultivation of collective structures (stories of us) capable of enacting power to effect change with urgency (stories of now). We conclude by discussing implications of these findings for public narrative interventions and related health equity promotion efforts.
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