Ethical Challenges in Community-Based Participatory Research: A Scoping Review

2017 ◽  
Vol 28 (2) ◽  
pp. 189-199 ◽  
Author(s):  
Elena Wilson ◽  
Amanda Kenny ◽  
Virginia Dickson-Swift
Keyword(s):  
Participatory Research ◽  
Scoping Review ◽  
Community Based Participatory Research ◽  
Ethical Challenges ◽  
Community Based

scholarly journals A scoping review on the key elements and effects of cardiovascular disease management programmes based on community-based participatory research

2021 ◽  
Author(s):  
Bohyun Park ◽  
Juhyeon Yang
Keyword(s):  
Participatory Research ◽  
Scoping Review ◽  
Research Question ◽  
Community Based Participatory Research ◽  
Management Programme ◽  
Community Based ◽  
High Quality Research ◽  
Positive Effects ◽  
Leading Role ◽  
Cardio Vascular

Abstract Background. This scoping review aims to analyse the literature on community based participatory research (CBPR) -based cardio vascular disease (CVD) management programmes, examining the key elements of their development and implementation and exploring their effectiveness. Methods. This study is based on the scoping review methodology, consisted of six stages: 1) identifying the research question; 2) identifying relevant studies—search strategy; 3) study selection; 4) charting the data; 5) collating, summarising, and reporting the results; and 6) consultation exercise. The electronic databases used for the literature search were PubMed, Cochrane, and CINAHL. The search period was from 4 March to 3 April 2020. We selected studies that: 1) were published after 2000; 2) targeted community residents over the age of 18; and 3) proposed a CBPR-based CVD management programme, described its development process, or evaluated its effects based on its application. The data were extracted independently by two researchers according to the standardised form. Results. Among the key elements of such programmes, there were many cases in which community organisations played the leading role in establishing partnerships and cases in which a decision-making committee was formed. Regarding the application of the CBPR principles, community partners participated only in executing the research and not in the process of analyzing and interpreting research results. In addition, In all six RCT studies, the experimental groups showed significantly positive effects compared to the control groups. Conclusion. It is necessary to develop strategies to improve the criteria based on which CBPR principles cannot be implemented during the development and implementation of a CBPR-based CVD management programme. In addition, more attempts to verify the effectiveness of high-quality research methodology should be made when evaluating the effectiveness of programmes.

scholarly journals Key Elements and Effects of Cardiovascular Disease Management Programs based on Community-Based Participatory Research: Protocol for a Scoping Review

2020 ◽  
Author(s):  
Juhyeon Yang ◽  
Eunsim Kim ◽  
Bohyun Park
Keyword(s):  
Cardiovascular Disease ◽  
Disease Management ◽  
Participatory Research ◽  
Scoping Review ◽  
Data Extraction ◽  
Economic Status ◽  
Community Based Participatory Research ◽  
Research Protocol ◽  
Community Based ◽  
Disease Management Programs

Abstract Background: Cardiovascular diseases (CVDs) are health problems that demonstrate high death and prevalence rates, and exhibit large health inequalities across different socio-economic status. Although interest in community-based participatory research (CBPR) is increasing because of the efforts to improve health equity, not enough literature review has been conducted on CBPR-based CVD management programs. The objective of this scoping review is to identify the key elements that should be considered when developing CBPR-based CVD management programs, and explore the effects of CBPR-based CVD management programs. Methods: This study will use the databases of PubMed, Cochrane, and Cumulative Index to Nursing and Allied Health Literature (CINAHL). The criteria for selecting literature will be research that was published in or after 2000, applied CBPR, and either developed or implemented CVD management programs. No limit will be placed on the research design or method. Data extraction will be conducted independently by two researchers, and in the case of data mismatch, a consensus will be reached through discussion. The extracted data will be combined through narrative synthesis. Discussion: This scoping review will identify specific methods in the development and implementation process of CBPR-based CVD management programs, as well as the characteristics of the programs that were shown to be effective. Therefore, it will be able to provide specific guidelines to researchers, government agencies, and local organizations to design and implement participatory health promotion programs related to CVDs.Scoping review registration: This protocol has been registered to the OSF registries. 0000000204460911. “Key Elements and Effects of Cardiovascular Disease Management Programs Based on Community-based Participatory Research: Protocol for a Scoping Review.” OSF, 4 Sept. 2020. Web.

scholarly journals Best practices for community-engaged participatory research with Pacific Islander communities in the USA and USAPI: protocol for a scoping review

BMJ Open ◽  
2018 ◽  
Vol 8 (1) ◽  
pp. e019653 ◽  
Author(s):  
Pearl Anna McElfish ◽  
Britni L Ayers ◽  
Rachel S Purvis ◽  
Christopher R Long ◽  
Ka’imi Sinclair ◽  
...  
Keyword(s):  
Best Practices ◽  
Participatory Research ◽  
Scoping Review ◽  
Data Extraction ◽  
Community Based Participatory Research ◽  
Research Process ◽  
Study Data ◽  
Pacific Islanders ◽  
Community Based ◽  
The Usa

IntroductionCommunity-based participatory research is a partnership approach to research that seeks to equally involve community members, organisational representatives and academic partners throughout the research process in a coequal and mutually beneficial partnership. To date, no published article has synthesised the best practices for community-based participatory research practices with Pacific Islanders.Methods and analysisThe reviewers will examine studies’ titles, abstracts and full text, comparing eligibility to address discrepancies. For each eligible study, data extraction will be executed by two reviewers and one confirmation coder, comparing extracted data to address any discrepancies. Eligible data will be synthesised and reported in a narrative review assessing coverage and gaps in existing literature related to community-based participatory research with Pacific Islanders.Discussion and disseminationThe purpose of this review is to identify best practices used when conducting community-based participatory research with Pacific Islanders; it will also extrapolate where the gaps are in the existing literature. This will be the first scoping review on community-based participatory research with Pacific Islanders. To facilitate dissemination, the results of this scoping review will be submitted for publication to a peer-reviewed journal, presented at conferences and shared with community-based participatory research stakeholders.

scholarly journals A decade of community-based participatory research: from a tentative start to a fruitful approach in the field of mental health: a scoping review

BJPsych Open ◽  
2021 ◽  
Vol 7 (S1) ◽  
pp. S259-S259
Author(s):  
Aoife Janmohamed
Keyword(s):  
Mental Health ◽  
Participatory Research ◽  
Scoping Review ◽  
English Language ◽  
New Technologies ◽  
Stakeholder Involvement ◽  
Community Based Participatory Research ◽  
Community Based ◽  
Underserved Communities ◽  
Scoping Reviews

AimsThis scoping review aimed to identify and analyse studies utilising Community-Based Participatory Research (CBPR) to design and/or disseminate a mental health (MH) intervention with underserved communities around the globe. This was with the intention of updating the knowledge base on this area, and identifying both areas of promise in this field as well as any gaps for future work to fill.MethodThis scoping review was conducted using the Joanna Briggs Institute's Scoping Review Manual and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist. Three databases, Scopus, PubMed and Sage Journals, were searched to identify relevant studies, using the three terms ‘CBPR’, ‘underserved’ and ‘mental health’, and words to the equivalent.ResultThe search identified 607 English-language sources published between 1st January 2010 and 30th June 2020. Following duplicate removal, screening and bibliography scanning, 34 highly relevant studies remained. The studies were varied in their chosen context, MH gap, how they gave meaning to the participatory approach, how they defined their successes, and what strengths and challenges were encountered in CBPR's application to this field. Briefly, all bar one of the studies were focused on underserved communities within high-income countries (HICs); many focused solely on women and youth groups; and finally, the use of technology and talking therapies were noted to achieve particular success.ConclusionCBPR is commonly used to engage the underserved through long-term partnership building and equitable stakeholder involvement, shifting the dialogue from research on to research with communities. This unique, needs-oriented approach harbours mutual ownership of the research, empowering historically disenfranchised individuals to become actively involved in reducing identified health disparities. In the field of MH, this is of great importance and need in many underserved communities due to issues of access, heightened by a distrust in mainstream services as well as by the stigma attached to MH conditions.As compared to studies in this field ten years ago, CBPR has become much more established, with this review noting a remarkable increase in MH projects utilising this approach. Furthermore, the addition of new technologies to this field was shown to offer significant promise in overcoming access barriers, hoping to ultimately narrow identified MH gaps. Nonetheless, further work on the prevailing gender and HIC biases, and for a review including relevant Spanish-language studies, are still required in order to form a more global overview of this field.

scholarly journals A chair at the table: a scoping review of the participation of refugees in community-based participatory research in healthcare

2021 ◽  
Vol 17 (1) ◽  
Author(s):  
Tali Filler ◽  
Pardeep Kaur Benipal ◽  
Nazi Torabi ◽  
Ripudaman Singh Minhas
Keyword(s):  
Participatory Research ◽  
Scoping Review ◽  
Scale Up ◽  
Community Based Participatory Research ◽  
Final Analysis ◽  
Well Being ◽  
Research Process ◽  
Healthcare Research ◽  
Community Based ◽  
Healthcare Needs

Abstract Background Refugees often face psychosocial complexity and multi-dimensional healthcare needs. Community-Based Participatory Research (CBPR) methods have been previously employed in designing health programs for refugee communities and in building strong research partnerships in refugee communities. However, the extent to which these communities are involved remains unknown. Objective To review the evidence on the involvement of refugees in CBPR processes to inform healthcare research. Methods A scoping review was performed, using Arksey & O’Malley’s methodological framework. A literature search in Medline, PubMed, PsycINFO, CINAHL, Embase, Global Health, Scopus, and Policy File Index for articles published until August 2020 was conducted. Articles were included if they focused on CBPR, had refugee involvement, and discussed healthcare/health policy. Results 4125 articles were identified in the database searches. After removal of duplicates, 2077 articles underwent title and abstract review by two authors, yielding an inter-reviewer kappa-statistic of 0.85. 14 studies were included in the final analysis. The purpose of CBPR use for 6 (42.9%) of the articles was developing and implementing mental health/social support interventions, 5 (35.7%) focused on sexual and reproductive health interventions, 1 (7.1%) focused on domestic violence interventions, 1 (7.1%) focused on cardiovascular disease prevention and 1 (7.1%) focused on parenting interventions. In terms of refugee involvement in the various stages in the research process, 9 (64.3%) articles reported refugees having a role in the inception of the research, no articles reported including refugees in obtaining funding, all articles included refugees in the design of the research study, 10 (71.4%) articles reported having refugees involved in community engagement/recruitment, 8 (57.1%) articles reported involvement throughout the data collection process, 4 (28.6%) articles reported involvement in data analysis, 6 (42.9%) articles reported having refugees involved in knowledge translation/dissemination and 1 article (7.1%) reported having refugees contribute to scale up initiatives. Conclusions CBPR has been identified as a methodology with the potential to make substantial contributions to improving health and well-being in traditionally disenfranchised populations. As the needs of refugee communities are so diverse, efforts should be made to include refugees as partners in all stages of the research process.

scholarly journals Ethical challenges experienced by researchers in community-based participatory research

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
E Wilson ◽  
A Kenny ◽  
V Dickson-Swift
Keyword(s):  
Data Collection ◽  
Participatory Research ◽  
Health Research ◽  
Critical Time ◽  
Community Based Participatory Research ◽  
Ethical Review ◽  
Ethical Challenges ◽  
Community Based ◽  
Ethical Implications ◽  
The Future

Abstract Background Political, economic and climate events continue to bring the dismantling of communities and creation of new ones. Understanding successful models of adaptation and working with communities to address their health and wellbeing needs requires ethically sound public health research. Community-Based Participatory Research (CBPR) has been proposed as an equitable, empowering partnership approach to collaborative health research that encapsulates analysis, advocacy and action for the future wellbeing of communities. Meanwhile, a strong interest in ethical implications of CBPR continues in international literature, yet with a notable lack of research that captures the experience of researchers who had ethical challenges in their CBPR studies. The aim of this research was to address this lack of evidence by exploring those experiences of CBPR researchers internationally. Methods An innovative data collection method was designed utilising a purpose-built blog. This internet-based, qualitative online study enabled asynchronous international data collection on the blog. Participants were researchers with experience of CBPR and were recruited through social media platforms. Blog narratives of first-hand experiences of CBPR researchers were analysed using thematic analysis. Results The themes that emerged from blog data analysis were researchers' challenges with balancing participant protection and autonomy, dealing with partnership tensions, and the enduring impacts on the researchers. Conclusions This study enhances our understanding of ethical challenges in CBPR with evidence of enduring impacts on researchers of the 'tightrope' they walked in the interests of maintaining research integrity and ethical responsibility towards their partnering communities. Challenges arose largely from complexities of CBPR coupled with rigid regulatory structures of human research ethics review that struggles to respond adequately in the interests of communities and researchers. Key messages At this critical time for the future of humanity, communities can benefit from CBPR. A positive way forward for ethical review of CBPR exists for those with power to make a difference.

scholarly journals Key elements and effects of cardiovascular disease management programs based on community-based participatory research: protocol for a scoping review

2021 ◽  
Vol 10 (1) ◽  
Author(s):  
Juhyeon Yang ◽  
Eunsim Kim ◽  
Bohyun Park
Keyword(s):  
Participatory Research ◽  
Scoping Review ◽  
Data Extraction ◽  
Economic Status ◽  
Grey Literature ◽  
Implementation Process ◽  
Community Based Participatory Research ◽  
Open Science ◽  
Community Based ◽  
Science Framework

Abstract Background Cardiovascular diseases (CVDs) are health problems that demonstrate high death and prevalence rates, and exhibit large health inequalities across different socio-economic status. Although interest in community-based participatory research (CBPR) is increasing because of the efforts to improve health equity, not enough literature review has been conducted on CBPR-based CVD management programs. The objective of this scoping review is to identify the key elements that should be considered when developing CBPR-based CVD management programs, and explore the effects of CBPR-based CVD management programs. Methods This study will use the databases of PubMed, Cochrane, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) including grey literature. The criteria for selecting literature will be research that was published in or after 2000, applied CBPR, and either developed or implemented CVD management programs. No limit will be placed on the research design or method. Data extraction will be conducted independently by two researchers, and in the case of data mismatch, a consensus will be reached through discussion. The extracted data will be combined through narrative synthesis. Discussion This scoping review will identify specific methods in the development and implementation process of CBPR-based CVD management programs, as well as the characteristics of the programs that were shown to be effective. Therefore, it will be able to provide specific guidelines to researchers, government agencies, and local organizations to design and implement participatory health promotion programs related to CVDs. Systematic review registration Open Science Framework 10.17605/OSF.IO/ZW2UY

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