Principles Of Participatory Research Research Articles

Producing health information in consultation with health workers and the hepatitis B-affected communities is worthwhile.

Globally, approximately 257 million people are living with chronic hepatitis B. Many people are undiagnosed, have low health literacy and experience barriers to engaging in care. In Australia, there is a lack of culturally and linguistically appropriate resources to support people living with the infection to increase their understanding and build their capacity. This innovative practice paper describes the process of developing a culturally and linguistically appropriate resource using the principles of participatory action research. The hepatitis B story was designed to facilitate discussion between healthcare workers and consumers, and to increase the knowledge and understanding of both. Consultation with consumers and a broad range of health services contributed to the quality of and demand for the resource. A case study tells the story of 'Thuy'. This case study demonstrates the practical application of the resource and describes the positive affect its use had on Thuy and her family. Increasing our understandings of how people experience chronic hepatitis B is crucial to improving health information, testing and engagement in care. Producing health information with consumers is a worthwhile process to increase consumers' health literacy and improve service delivery.

Assessing 5-Year Outcomes of an Academic Pediatrics-Community Partnership Focused on Rural Child Health.

The Resident Education in Advocacy and Child Health (REACH) pathway at a large academic pediatric residency program in the Northwest includes an academic-community partnership in a rural community. Few academic-community partnership evaluations have focused on community values. REACH trainees conducted a 5-year evaluation of the partnership using community-generated outcomes measures. We sought to 1) apply community-based participatory research (CBPR) principles to engage community stakeholders, 2) mutually develop program evaluation measures, and 3) describe core projects and the community's perceptions of the REACH program. A secondary objective was to evaluate REACH pathway influence on trainee alumni. We used a community-informed design to determine outcomes and indicators, 2) gathered data through iterative review of materials, stakeholder interviews, and alumni surveys, and 3) conducted a quantitative and qualitative analysis and synthesis. Four short-term outcomes measures were identified for a logic model: 1) project sustainability, 2) direct engagement with youth, 3) Community partnerships, and 4) "ripple effects." Of non-foundational projects, 50% were sustained at the time of the evaluation. Fourteen projects (70%) engaged youth. At least five ongoing community partnerships were identified. Four stakeholders (24%) noted a ripple effect. Trainee alumni reported increased confidence in research skills, cultural competence, and appreciation of community perspectives. Key themes of the partnership's value were relationships, outsider perspective and professional expertise, trainees as catalyst, and balance of research with action. Our evaluation demonstrated the partnership's value to community and trainees and yielded suggestions for increasing the program's impact. We believe that key elements of this evaluation could be used in other academic-community partnership programs.

The East Side Table Make-at-Home Meal-Kit Program is feasible and acceptable: A pilot study

Drawing from marketing literature, shopper solutions and food bundles (that group items to be used together) can promote purchase intention, efficacy, and related outcomes. Similarly, meal kits boxes (food bundles with step-by-step instructions to prepare home-cooked meals) have potential to be an accessible intervention to facilitate healthy, at-home food preparation and intake. This manuscript describes the feasibility, acceptability, and preliminary outcomes of a community-designed and -led program promoting healthy food skills, accessibility, and intake through meal kits. This pilot study was designed using community-based participatory research principles and 60 participants enrolled in the study. Participating families received a free meal kit weekly during the 10-week program. Meal-kit boxes also included language-appropriate recipe cards, step-by-step instructions, and supplemental educational material including links to videos with related food preparation tips and fact sheets about the meal. Data were collected at baseline, post-program, and follow-up (3 months post-program). Specifically, validated measures were used to assess food insecurity, food availability, cooking preparation techniques, self-efficacy, and fruit/vegetable intake. Process data were also collected. Descriptive statistics, paired t-tests, and Wilcoxon sign-ranked tests were used to describe data and evaluate outcomes. Content analysis was used to code open-ended survey responses into categories. Study findings indicated retention rates were high (≥90%); 83% made eight or more meal kits. At post-program, significant increases were observed in cooking/meal preparation self-efficacy, cooking techniques, and healthy food availability. At follow-up, only healthy food availability remained significantly higher. Findings suggest that meal-kit programs are feasible and acceptable, and there is a potential for these programs to influence factors important to increasing healthy home-cooked meals and dietary intake. Future research should use more rigorous designs and explore meal-kit dosage.

Rural Community Engagement for Health Disparities Research: The Unique Role of Historically Black Colleges and Universities (HBCUs).

Reducing health disparities in rural communities of color remains a national concern. Efforts to reduce health disparities often center on community engagement, which is historically the strategy used to provide rural minority populations with support to access and utilize health information and services. Historically Black Colleges and Universities (HBCUs), with their origins derived from social injustices and discrimination, are uniquely positioned to conduct this type of engagement. We present the “Research with Care” project, a long-standing positive working relationship between North Carolina Central University (NCCU) and rural Halifax County, North Carolina, demonstrating an effective campus–community partnership. The importance of readiness to implement Community-based Participatory Research (CBPR) principles is underscored. As demonstrated by the NCCU–Halifax partnership, we recommend leveraging the positive associations of the HBCU brand identity as a method of building and sustaining meaningful relationships with rural Black communities. This underscores the role and value of HBCUs in the health disparities research arena and should be communicated and embraced.

Using attendance data for social network analysis of a community-engaged research partnership.

The Rockefeller University Center for Clinical and Translational Science (RU-CCTS) and Clinical Directors Network (CDN), a Practice-Based Research Network (PBRN), fostered a community-academic research partnership involving Community Health Center (CHCs) clinicians, laboratory scientists, clinical researchers, community, and patient partners. From 2011 to 2018, the partnership designed and completed Community-Associated Methicillin-Resistant Staphylococcus Aureus Project (CAMP1), an observational study funded by the National Center for Advancing Translational Sciences (NCATS), and CAMP2, a Comparative Effectiveness Research Study funded by the Patient-Centered Outcomes Research Institute (PCORI). We conducted a social network analysis (SNA) to characterize this Community-Engaged Research (CEnR) partnership. Projects incorporated principles of Community-Based Participatory Research (CAMP1/2) and PCORI engagement rubrics (CAMP2). Meetings were designed to be highly interactive, facilitate co-learning, share governance, and incentivize ongoing engagement. Meeting attendance formed the raw dataset enriched by stakeholder roles and affiliations. We used SNA software (Gephi) to form networks for four project periods, characterize network attributes (density, degree, centrality, vulnerability), and create sociograms. Polynomial regression models were used to study stakeholder interactions. Forty-seven progress meetings engaged 141 stakeholders, fulfilling 7 roles, and affiliated with 28 organizations (6 types). Network size, density, and interactions across organizations increased over time. Interactions between Community Members or Recruiters/Community Health Workers and almost every other role increased significantly across CAMP2 (P < 0.005); Community Members' centrality to the network increased over time. In a partnership with a highly interactive meeting model, SNA using operational attendance data afforded a view of stakeholder interactions that realized the engagement goals of the partnership.

Ação pedagógica híbrida em programa internacional finlandês de formação de professores

Objetiva-se apresentar um arranjo pedagógico híbrido adaptado para o formato online e analisar os princípios do alinhamento construtivo representado na prática pedagógica de educadores finlandeses. O contexto de investigação é o programa Internacional de Formação de Professores (IPTE) da HAMK, na Finlândia. A situação provocada pela pandemia do COVID-19 desafiou docentes de diferentes partes do mundo a construir estratégias pedagógicas mediadas pela internet para garantir o distanciamento social da comunidade escolar, e a grande dificuldade foi fazer a transposição do ensino presencial ou híbrido para o ensino online. Cientes disso, a relevância deste estudo está no fato de exemplificar práticas pedagógicas híbridas adaptadas de espaços físico para o digital, desenhadas a partir dos princípios teóricos do alinhamento construtivo. Trata de uma pesquisa qualitativa, de cunho descritiva. Utiliza-se os princípios da pesquisa participativa, pois os colaboradores da pesquisa são professores em posições distintas no programa IPTE, sendo: professor-formador, professor-estudante e professor-pesquisador. Os dados foram coletados de documentos institucionais, que guiavam diretamente a ação pedagógica junto aos estudantes do IPTE. A seleção e categorização dos dados foram realizadas pelo método de análise de conteúdo. A investigação embasa-se nos princípios do ensino híbrido e do alinhamento construtivo. Os resultados da pesquisa revelam que as atividades de ensino, aprendizagem e avaliação híbridas são alinhadas a quatro dos cinco objetivos de aprendizagem estabelecidos para o tema Diálogo e Interação do IPTE.

Implications and Recommendations for Research, Education, and Practice

Throughout this symposium, we have advocated for increased attention to how the chronicity and complexity of older adults’ health might impact their ability to maintain health behaviors over time. This final presentation will explore some implications of this chronicity and complexity on research study designs, formal education and professional training, and routine clinical practice. For example, existing research designs and funding mechanisms such as tightly controlled randomized controlled trials within a five-year grant may not permit researchers to study behaviors over an extended period of time and to do so within the real-world environments and social contexts in which older adults live. In contrast, integrating principles of community-engaged and participatory research, adaptive designs, pragmatic trials, and implementation science may encourage researchers to design for widespread dissemination. This session will close with recommendations to enhance educational initiatives and professional development to promote cross-disciplinary teams.

Parents Matter: Empowering Parents to Inform Other Parents of Post-Year 10 Pathway Options in Disadvantaged Communities

The research, focused on parents with children in years 5-10 in three low-socioeconomic rural and regional communities, drew on an understanding of educational aspiration as culturally and socio-spatially embedded to develop practical strategies for parents to engage with their children as they made education and career pathways choices. It draws from principles of community-based participatory research to address the gap between parental aspirations for their children and parental knowledge by linking parents to expert knowledge and quality resources, building their confidence to discuss post-year 10 options and support their children's choices. This paper reports results from the evaluation of a successful 'initiative' to support parents and families in rural/regional Tasmania to access information about their children's options for post school education and contribute to their aspirations for further study. This research highlights the challenges in engaging parents in disadvantaged communities around education. Establishing trust takes time. Parents are well placed to deliver parent information programs that engage other parents in their children's education and career journeys. Programs must understand the community they are operating in and walk alongside its parents to design programs. Those aiming to increase parents' ability to support children's education should deliver targeted programs in community settings that respond to the context and needs of that community. Facilitators should act as bridges between community, industry, schools and parents to address the gap between parental aspirations and parental knowledge.

\u201cIs there anything good about a water advisory?\u201d: an exploration of the consequences of drinking water advisories in an indigenous community

BackgroundIn Ontario, Canada, Indigenous communities experience some of the province’s worst drinking water, with issues ranging from deteriorating water quality to regulatory problems and lack of support. When water is known, or suspected, to be unsafe for human consumption, communities are placed under a Drinking Water Advisory. Between 2004 and 2013, approximately 70% of all on-reserve communities in Ontario were under at least one Drinking Water Advisory. Despite the widespread impact of Drinking Water Advisories on health and wellbeing, little is known about First Nation individuals’ perceptions and experiences living with a Drinking Water Advisory. This study presents information shared by members of a community who have lived with Boil Water Advisories on and off for many years, and a long-term Boil Water Advisory since 2017. The goal of this paper is to unpack and explore the Boil Water Advisories from the perspective of community members and provide considerations for current and future Boil Water Advisory management.MethodsMethodological choices were driven by the principles of community-based participatory research. Two data collection methodologies were employed: hard copy surveys and interviews.ResultsForty-four individuals (19.5%) completed a survey. Eight Elders and 16 key informants participated in 20 interviews. Respondents expressed varying degrees of uncertainty regarding protective actions to take while under a Boil Water Advisory. Further, 79% of men but only 46% of women indicated they always adhere to the Boil Water Advisory. Knowledge gaps that could lead to risky behaviours were also identified. Finally, Boil Water Advisories were demonstrated to have physical, financial, and time impacts on the majority of respondents.ConclusionsA direct outcome was the identification of a critical need to reinforce best practices for health protection through community education and outreach. More broadly, Chief and Council were able to use the findings to successfully advocate for improved drinking water for the community. Additionally, benefits of participatory research and community ownership include enhanced local research capacity, and increased awareness of, and desire for, research to inform decisions.

Using Community-Based Participatory Research to Design, Conduct, and Evaluate Randomized Controlled Trials with American Indian Communities.

Purpose and ObjectivesAcademic literature indicates a need for more integration of Indigenous and colonial research systems in the design, implementation, and evaluation of randomized controlled trials (RCTs) with American Indian communities. In this article, we describe ways to implement RCTs with Tribal Nations using community-based participatory research (CBPR) principles and practices.Intervention ApproachWe used a multiple case study research design to examine how Tribal Nations and researchers collaborated to develop, implement, and evaluate CBPR RCTs.Evaluation MethodsDiscussion questions within existing tribal–academic partnerships were developed to identify the epistemologic, methodologic, and analytic strengths and challenges of 3 case studies.ResultsWe identified commonalities that were foundational to the success of CBPR RCTs with Tribal Nations. Long-standing community–researcher relationships were critical to development, implementation, and evaluation of RCTs, although what constituted success in the 3 CBPR RCTs was diverse and dependent on the context of each trial. Respect for the importance of diverse knowledge systems that account for both Indigenous knowledge and colonial science also contributed to the success of the RCTs.Implications for Public HealthTribal–academic partnerships using CBPR RCTs must include 1) establishing trusted CBPR partnerships and receiving tribal approval before embarking on RCTs with Tribal Nations; 2) balancing tribal community interests and desires with the colonial scientific rigor of RCTs; and 3) using outcomes that include tribal community concepts of success as well as outcomes found in standard colonial scientific research practices to measure the success of the CBPR RCTs.

A structured collaborative approach to intervention design using a modified intervention mapping approach: a case study using the Management and Interventions for Asthma (MIA) project for South Asian children

BackgroundTo describe how using a combined approach of community-based participatory research and intervention mapping principles could inform the development of a tailored complex intervention to improve management of asthma for South Asian (SA) children; Management and Interventions for Asthma (MIA) study.MethodsA qualitative study using interviews, focus groups, workshops, and modified intervention mapping procedures to develop an intervention planning framework in an urban community setting in Leicester, UK. The modified form of intervention mapping (IM) included: systematic evidence synthesis; community study; families and healthcare professionals study; and development of potential collaborative intervention strategies. Participants in the community study were 63 SA community members and 12 key informants; in-depth semi-structured interviews involved 30 SA families, 14 White British (WB) families and 37 Healthcare Professionals (HCPs) treating SA children living with asthma; prioritisation workshops involved 145 SA, 6 WB and 37 HCP participants; 30 participants in finalisation workshops.ResultsTwo key principles were utilised throughout the development of the intervention; community-based participatory research (CBPR) principles and intervention mapping (IM) procedures. The CBPR approach allowed close engagement with stakeholders and generated valuable knowledge to inform intervention development. It accounted for diverse perceptions and experiences with regard to asthma and recognised the priorities of patients and their families/caregivers for service improvement. The ‘ACT on Asthma’ programme was devised, comprising four arms of an intervention strategy: education and training, clinical support, advice centre and raising awareness, to be co-ordinated by a central team.ConclusionsThe modified IM principles utilised in this study were systematic and informed by theory. The combined IM and participatory approach could be considered when tailoring interventions for other clinical problems within diverse communities. The IM approach to intervention development was however resource intensive. Working in meaningful collaboration with minority communities requires specific resources and a culturally competent methodology.

Acceptability and Feasibility of a Nurse-Led, Community Health Worker Partnered Latent Tuberculosis Medication Adherence Model for Homeless Adults.

Homeless adults are at increased risk of latent tuberculosis infection (LTBI), which can lead to active tuberculosis (TB) disease. The purpose of this study was to assess acceptability and feasibility of a six-month, nurse-led, community health worker-partnered short-course treatment (3HP) LTBI adherence model for a high risk, LTBI positive, homeless population. Informed by our community advisory board (CAB) and community-based participatory research principles (CBPR), a qualitative study was undertaken and used focus group discussions to identify perspectives of homeless men and women who had undergone LTBI treatment (N = 11, Mage = 51.2, SD 8.60, range 35–60). Three themes formed, which were engaging and recruiting LTBI intervention participants, delivering an LTBI intervention, and retaining LTBI intervention participants. Within those themes, barriers (e.g., lack of LTBI treatment readiness, substance use, etc.), and facilitators (e.g., LTBI and TB health education, familiarity with homeless population, etc.) were discussed to facilitate program recruitment, program delivery and program retention. These findings provide a greater understanding of how to effectively utilize a nurse-led, Community Health Worker (CHW) intervention delivery method to not only improve 3HP LTBI medication adherence, but also decrease substance use, improve mental health, and decrease unstable housing among this vulnerable population at high risk for active tuberculosis.

Planned Parenthood as a Public Health Imperative: A Participatory Research Exploring the Use of Contraception by Indigenous Women of Chilcapamba, Ecuador

<strong>Background:</strong> Government policies have led to an increase in modern contraception use. Rural indigenous populations in countries like Ecuador, however, have relatively lower rates of utilization. Our objectives were to work with the community to identify perceived barriers for contraception use and determine solutions for an indigenous Ecuadorian community. <strong>Methods:</strong> Using a qualitative descriptive study design based on participatory research principles, focus groups and individual semi-structured interviews were conducted with women in the community as well as semi-structured interviews with physicians working at the regional hospital. All sessions were taped, transcribed, translated and analyzed using descriptive thematic analysis. <strong>Results:</strong> Women had basic knowledge about contraception, but also had many fears related to false beliefs about side effects. Women using modern contraception spoke of difficulties getting to a doctor to get a prescription. They had a relationship of trust with their partners although men were perceived to have preponderant decisional powers. Physicians suggested creating a mobile team to provide information about maternal health and to distribute contraceptives directly in the communities. <strong>Conclusions:</strong> There is need for rural communities to have better information and access to contraception. While the Ecuador national contraception policy has made an impact, several practical barriers prevented optimal implementation.

Social-ecological considerations for the sleep health of rural mothers.

Using a social-ecological framework, we identify social determinants that interact to influence sleep health, identify gaps in the literature, and make recommendations for targeting sleep health in rural mothers. Rural mothers experience unique challenges and protective factors in maintaining adequate sleep health during the postpartum and early maternal years. Geographic isolation, barriers to comprehensive behavioral medicine services, and intra-rural ethno-racial disparities are discussed at the societal (e.g., public policy), social (e.g., community) and individual levels (e.g., stress) of the social-ecological model. Research on sleep health would benefit from attention to methodological considerations of factors affecting rural mothers such as including parity in population-level analyses or applying community-based participatory research principles. Future sleep health programs would benefit from using existing social support networks to disseminate sleep health information, integrating behavioral health services into clinical care frameworks, and tailoring culturally-appropriate Telehealth/mHealth programs to enhance the sleep health of rural mothers.

Lessons from a rural housing crisis: grounded insights for intersectoral action on health inequities

Local communities are struggling with persistent health inequities driven by income disparity, housing inadequacy, and other intersecting factors that constrain individual and community well-being. Increasingly, intersectoral approaches are recognized as essential to tackle such challenges, given their intersecting nature. This paper describes Equity-focused Intersectoral Practice (EquIP), a novel methodology that merges participatory research principles with the purposeful positioning of grounded expertise (lived experience) to shift the gaze of intersectoral actors towards the contextual factors that contribute to health inequities. The EquIP methodology creates uncommon spaces for intersectoral encounter that support critical reflexivity and relationship-building among institutional and community-based intersectoral actors. A case example of the EquIP methodology, implemented in a small, rural Canadian city in the context of a regional housing crisis, illustrates how investment in reflexivity and relational praxis among diverse intersectoral actors supports the identification of existing structures, beliefs, and practices within institutional settings that constrain effective intersectoral response to health inequities.

Adapting Digital Storytelling Methods to African Contexts: Insights from the Utaifa Project

ABSTRACT This article is drawn from a larger action research study that seeks to explore the extent to which “ordinary” citizens, on the margins, can actively access and use digital platforms for self-expression and self-representation. This paper, in particular, discusses insights gleaned from a collaborative participatory research project, with a focus group from the Abakuria community in Kenya, on adapting digital storytelling as a research method for an African context. Two overarching strands inform this work. The first is epistemic, guided by critical discourses on African folklore and African ontologies on personhood. Here, works by Bukenya, Finnegan, Courlander, Mbiti, Menkiti, Nyamnjoh and Wiredu, among others, provide a launching pad for the engagement. The argument is that an iteration of digital storytelling that is relevant and effective in an African context needs anchoring on an episteme that is intrinsically African. The second strand focuses on the process that this adaptation takes. Here, Participatory Action Research principles and processes are a central cog. The assertion is that an iteration of digital storytelling that is appropriate and effective for an African context needs to be participatory, emancipatory, transformative, self-critical and empowering, tenets encapsulated in Participatory Action Research.

Working with and engaging in recreation and sport research with youth who live on the margins

ABSTRACT Working collaboratively with youth who live on the margins in recreation and sport research provides unique opportunities and challenges for both participants and researchers. This paper aims to highlight methodological challenges from a recent collaborative sport and recreation research project with youth in a Western Canadian city. Guided by key principles of youth-led participatory action research (YPAR), we discuss challenges with (a) power-sharing and mutual respect, (b) development of meaningful connections, and (c) facilitating space for youth voice. Our intent is not to offer simple, all-encompassing solutions to such challenges, but to outline the processes of how our team negotiated such challenges. The insights gained through our work may provide practical tools for researchers and community members interested in working with and engaging in research with youth at risk to address social injustices.

Resident identified strengths and challenges of project-based permanent supportive housing program implementation in a small metropolitan county

ABSTRACT : Permanent supportive housing (PSH) programs modeled in the Housing First approach have been widely implemented in the United States for housing individuals who have experienced chronic homelessness. Yet within the evidence base, resident experiences and perceptions of Project-Based PSH program implementation are less understood, and there is no research on resident experiences of project-based program implementation within small metropolitan communities in the United States. Utilizing a collaborative approach founded in the principles of participatory action research (PAR) to orientate research processes, we critically examine resident-identified strengths and challenges of living at St. Mary’s House, a Project-Based PSH program in Whatcom County, Washington. Data analysis of participant observation and semi-structured interviews explore the positive and negative dimensions of program surveillance measures and living together in PSH, as well as how program “exits” undermine residents’ expectations of permanency. The implications from our findings highlight the importance of both listening directly to residents, and developing resident-driven programming expressly designed for meaningful and inclusive participation.

Samen veranderen is samen leren

Changing together is learning together. A participatory action research project on the role of the internist in promoting a healthy lifestyle This article describes the first three stages of an action research project. Following eight methodological principles of participatory action research, this article aims to give insight in the nature of the challenges and dilemmas involving internists, patients and patient representatives in the research process mention. Dilemmas included giving space versus limiting participation together with operating efficiently versus being flexible and honoring the input of all participants equally. It was a challenge to reflect not only on the content and procedures but also on everybody’s role in the learning process. In conclusion, action research offers a critical base for a participative and reflective method but it is also a challenge for busy healthcare practices that focus on content and concrete action and less on the learning process. Because reflection on the learning process is important for scientific standards, we suggest to give monitoring and reflection a central place in the action research cycle.

Community-Based Referential Music Making with Limited-Resource Adolescents: A Pilot Study

Abstract Black/African American adolescents from limited-resource communities face challenges and circumstances that are unique to their racialization and socioeconomic status; this merits community-engaged resources, such as community music therapy, that are equally unique in creating culturally responsive opportunities for limited-resource adolescents to engage socially with peers and experience meaningful success in a safe, supportive environment. The purpose of this study was to pilot and explore the feasibility of and behavioral processes in a community-based referential music-making intervention for limited-resource adolescents labeled as “at-risk.” The methods consisted of a concurrent nested (embedded) mixed methods design based on the principles of participatory actions research (PAR), during which qualitative data were collected during 8 focus group style music-making sessions. Quantitative data assessing self-efficacy were collected prior to first and following the 8th music-making session. The validity of quantitative results was challenged by the lowered reading level of participants and a high amount of mis-labeled (and thus unusable) data. Qualitative data suggest 3 themes, including creating community, artistic prioritization, and pride. All results were impacted by issues, such as inconsistent attendance and malfunctioning recording equipment. Nevertheless, participants expressed a collective desire to share their work with their community group. Discussion points are raised including how participants in this community music therapy-based approach were able to create and direct their own stories. The implementation of community music therapy approaches seems a valuable way to bring authentic representations of limited-resource adolescent participants into clinical practice.