Opportunities, challenges and ethical issues associated with conducting community-based participatory research in a hospital setting

2016 ◽  
Vol 12 (3) ◽  
pp. 149-157 ◽  
Author(s):  
C Strike ◽  
A Guta ◽  
K. de Prinse ◽  
S Switzer ◽  
S Chan Carusone
Keyword(s):  
Social Services ◽  
Participatory Research ◽  
Ethical Issues ◽  
Care Delivery ◽  
Clinical Care ◽  
Hospital Setting ◽  
Community Based Participatory Research ◽  
Original Research ◽  
People Living With Hiv ◽  
Community Based

Community-based participatory research (CBPR) is growing in popularity as a research strategy to engage communities affected by health issues. Although much has been written about the benefits of using CBPR with diverse groups, this research has usually taken place in community-based organizations which offer social services and programs. The purpose of this article is to explore the opportunities and challenges encountered during a CBPR project conducted in a small hospital serving people living with HIV and addictions issues. The structure of hospital-based care delivery required the team to account for participants’ health-related limitations, including adopting recruitment strategies built on clinical care, and modifying the original research design to better protect participant confidentiality in a small space. Although CBPR offers an important strategy for researching with members of hospitalized communities, it requires research teams to develop context-relevant approaches to ethically engaging community members that recognize the ways clinical space mediates the research process.

scholarly journals Ethical Issues in Conducting Community-Based Participatory Research: A Narrative Review of the Literature

2018 ◽  
Author(s):  
Crystal Kwan ◽  
Christine Walsh
Keyword(s):  
Action Research ◽  
Participatory Research ◽  
Social Action ◽  
Ethical Issues ◽  
Community Based Participatory Research ◽  
Research Process ◽  
Narrative Review ◽  
Institutional Review Boards ◽  
Review Of The Literature ◽  
Community Based

Community-based participatory research (CBPR) is a methodology increasingly used within the social sciences. CBPR is an umbrella term that encompasses a variety of research methodologies, including participatory research, participatory action research, feminist participatory research, action research, and collaborative inquiry. At its core, they share five key attributes: (i) community as a unit of identity; (ii) an approach for the vulnerable and marginalized; (iii) collaboration and equal partnership throughout the entire research process; (iv) an emergent, flexible, and iterative process; and (v) the research process is geared toward social action. While there is no shortage of literature that highlights the benefits and potential of CBPR, relatively little discussion exists on the ethical issues associated with the methodology. In particular, current gaps within the literature include ethical guidance in (i) balancing community values, needs, and identity with those of the individual; (ii) negotiating power dynamics and relationships; (iii) working with stigmatized populations; (iv) negotiating conflicting ethical requirements and expectations from Institutional Review Boards (IRBs); and (v) facilitating social action emerging from the findings. For CBPR’s commendable goals and potential to be realized, it is necessary to have a more fulsome discussion of the ethical issues encountered while implementing a CBPR study. Further, a lack of awareness and critical reflection on such ethical considerations may perpetuate the very same problems this methodology seeks to address, namely, inequality, oppression, and marginalization. The purpose of this article is to provide a narrative review of the literature that identifies ethical issues that may arise from conducting CBPR studies, and the recommendations by researchers to mitigate such challenges.

scholarly journals Ethics of Biological Sampling Research with Aboriginal Communities in Canada

2016 ◽  
Vol 9 (4) ◽  
pp. 20 ◽  
Author(s):  
Behdin Nowrouzi ◽  
Lorrilee McGregor ◽  
Alicia McDougall ◽  
Donna Debassige ◽  
Jennifer Casole ◽  
...  
Keyword(s):  
Participatory Research ◽  
Ethical Issues ◽  
Community Based Participatory Research ◽  
Ethical Considerations ◽  
Community Based ◽  
Aboriginal Communities ◽  
Inappropriate Use ◽  
Sampling Protocols ◽  
Aboriginal Populations ◽  
Biological Sampling

<p><strong>BACKGROUND:</strong> The objective of this paper is to identify key ethical issues associated with biological sampling in Aboriginal populations in Canada and to recommend approaches that can be taken to address these issues.</p><p><strong>METHODS:</strong> Our work included the review of notable biological sampling cases and issues. We examined several significant cases (Nuu-chah-nult people of British Columbia, Hagahai peoples of Papua New Guinea and the Havasupai tribe of Arizona) on the inappropriate use of biological samples and secondary research in Aboriginal populations by researchers.</p><p><strong>RESULTS:</strong> Considerations for biological sampling in Aboriginal communities with a focus on community-based participatory research involving Aboriginal communities and partners are discussed. Recommendations are provided on issues of researcher reflexivity, ethical considerations, establishing authentic research relationships, ownership of biological material and the use of community-based participatory research involving Aboriginal communities.</p><p><strong>CONCLUSIONS:</strong> Despite specific guidelines for Aboriginal research, there remains a need for biological sampling protocols in Aboriginal communities. This will help protect Aboriginal communities from unethical use of their biological materials while advancing biomedical research that could improve health outcomes.</p>

Navigating Ethical Issues in Photovoice: Balancing the Principles of Community-Based Participatory Research Ethics with Institutional Review Board Requirements

2021 ◽  
pp. 155626462110327
Author(s):  
Lauren E. McDonald ◽  
Moshoula Capous-Desyllas
Keyword(s):  
Participatory Research ◽  
Cultural Context ◽  
Ethical Issues ◽  
Community Based Participatory Research ◽  
Research Process ◽  
Critical Discussion ◽  
Institutional Review Boards ◽  
Collaborative Relationships ◽  
Community Based ◽  
Institutional Review

This article reflects on ethical issues that arose during the course of two different evaluation projects that used photovoice method to engage with marginalized populations. The evaluations serve as case studies for a critical discussion about potential barriers that researchers may face when employing photovoice method while trying to balance the principles of community-based participatory research with the requirements of Institutional Review Boards. We reflect on ethical dilemmas related to the meaning of photography within the cultural context of participants’ lives, the compensation of participants as collaborators, and the representation and dissemination of participant photos. We conclude by examining how researchers may approach ethical requirements without compromising the important collaborative relationships central to photovoice method. We additionally call on researchers to engage with ethics review committees to create a new “participant–researcher” category with its own set of protocols that recognizes the nuanced role members of disenfranchised communities play in the research process.

scholarly journals COMMUNITY-BASED PARTICIPATORY RESEARCH FILMMAKING WITH FORMERLY HOMELESS OLDER ADULTS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S562-S562
Author(s):  
Victoria F Burns
Keyword(s):  
Older Adults ◽  
Participatory Research ◽  
Documentary Film ◽  
Ethical Issues ◽  
Community Building ◽  
Community Based Participatory Research ◽  
Community Based ◽  
Formerly Homeless ◽  
Privacy And Anonymity ◽  
Methodological Paper

Abstract This methodological paper discusses the process of co-creating a documentary film with seven formerly homeless older adults, highlighting some of the tensions carrying out community-based participatory research (CBPR). This paper is part of a larger study that explored ‘finding home’ through a series of individual and group audio and video-recorded interviews (including walk and drive alongs) with seven adults (aged 50+) with diverse homeless histories. In addition to the main findings, participants shared their experience of filmmaking and CBPR. Findings revealed four main tensions: 1) openness of sharing stories versus privacy and anonymity; 2) balancing participation/engagement and over-burdening; 3) negotiating interpersonal conflict and community building; and 4) ethical issues surrounding copyright and ownership of the film. Ultimately, we advocate for more CBPR film projects, as they not only provide a rich contextualized window into people’s everyday lives but serve to advance the voices of marginalized populations beyond traditional academic circles.

The role of community health advisors in community-based participatory research

2010 ◽  
Vol 17 (1) ◽  
pp. 117-126 ◽  
Author(s):  
Lachel Story ◽  
Agnes Hinton ◽  
Sharon B Wyatt
Keyword(s):  
Community Health ◽  
Participatory Research ◽  
Health Care Providers ◽  
Ethical Issues ◽  
Research Participation ◽  
Community Based Participatory Research ◽  
Care Providers ◽  
Minority Communities ◽  
Community Based ◽  
Community Health Advisors

Mistrust and fear of research often exist in minority communities because of assumptions, preconceived ideas, and historical abuse and racism that continue to influence research participation. The research establishment is full of well-meaning ‘outsider’ investigators who recognize discrimination, health disparities, and insufficient health care providers in minority communities, but struggle in breaking through this history of mistrust. This article provides ethical insights from one such ‘insider-outsider’, community-based participatory research project implemented via community health advisors in the Mississippi Delta. Both community-based participatory research and community health advisors provide opportunities to address the ethical issues of trust, non-maleficence, and justice in minority communities. Implications for ethics-driven nursing research are discussed.

scholarly journals Ethical Reflections on the Conduct of HIV Research with Community Members: A Case Study

2020 ◽  
pp. 155626462097080
Author(s):  
Brandon Brown ◽  
Jeff Taylor ◽  
Karine Dubé ◽  
Dario Kuzmanović ◽  
Yasmeen Long ◽  
...  
Keyword(s):  
Participatory Research ◽  
Community Involvement ◽  
Ethical Issues ◽  
Community Based Participatory Research ◽  
Research Process ◽  
People Living With Hiv ◽  
Research Practices ◽  
Hiv Research ◽  
Ethical Reflections

Some researchers continue to engage in “helicopter” or “parachute” research and do not ethically engage or collaborate with communities from which data are collected. This paper uses a case study to discuss the ethical issues arising from these research practices and the importance of increasing meaningful community involvement in research. Set in the context of research among older people living with HIV, the case study is followed by the perspectives of four research stakeholders. Through these perspectives, this paper demonstrates the ethical perils and harms that stem from research practices exemplified in the case. We argue instead for researchers to practice participatory research methods in line with community-based participatory research approaches (CBPR), good participatory practices (GPP), the Denver Principles, and CIOMS guidelines. Towards this end, we describe tools developed in collaboration with stakeholders in the research process to help researchers incorporate community participation and reduce unethical research conduct.

Social support and postpartum adherence to HIV treatment: a community-based participatory research study in Russia

2020 ◽  
Author(s):  
Elizabeth J King ◽  
Anna Yakovleva ◽  
Shelbi R Lisecki ◽  
Elena Shastina ◽  
Natalia Sukhova ◽  
...  
Keyword(s):  
Social Support ◽  
Participatory Research ◽  
Research Study ◽  
Multivariable Analysis ◽  
Community Based Participatory Research ◽  
Hiv Treatment ◽  
Hiv Care ◽  
People Living With Hiv ◽  
Community Based ◽  
Living With Hiv

Abstract Background There are over 1 million people living with HIV in Russia, and less than half of them are on antiretroviral treatment (ART). Earlier in the epidemic, Russia was successful in implementing prevention of mother-to-child transmission programmes; however, there is a gap in knowledge about postpartum adherence to ART among women living with HIV (WLHIV). The objective of our research study was to identify which factors are associated with postpartum engagement in HIV care and treatment in Russia. Methods We conducted a community-based participatory research study in five Russian cities. We surveyed 200 WLHIV who had given birth within the previous 24 months about their use of ART. We used multivariable logistic regression to determine which types of social support are associated with adherence to ART in the postpartum period. Results Less than half (40%) of mothers reported being adherent to ART. Multivariable analysis showed that having a supportive family environment [aOR = 2.64, 95% CI (1.91–5.83)], and active engagement with other HIV-positive mothers [aOR = 2.20, 95% CI (1.04–4.66)] were positively associated with postpartum adherence to ART. WLHIV who had more than one child were less likely to be adherent then WLHIV with just one child [aOR = 0.44, 95% CI (0.22–0.91)]. Conclusion The support that new mothers have or do not have can play an important role in WLHIV adherence to ART. The findings from our study provide ideas for improving the likelihood that women will continue to engage in HIV treatment and care after pregnancy.

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