ABSTRACT
The nature of community-based participatory research [CBPR] poses distinctive ethical challenges. In the absence of organized guidelines, a remarkable amount of researchers' time and energy will be spent tackling these ethical challenges. The study aimed to explore ethical issues and principles potentially arising when conducting CBPR. This qualitative study conducted in CBPR Center of Tehran University of Medical Sciences. Required data were gathered through systematic literature review and semi-structured interviews. Representatives of community, academia, and nongovernmental organizations [NGOs] participated in our study. Ten interviews with representatives of partner organizations, four group interviews with academic staff, and four with representatives of community were conducted. Repeated thematic analysis was used to elicit ethics-related overarching themes from transcribed interviews. As recommendations, these themes were then organized into a set of CBPR-related ethical issues and principles. Four CBPR ethical guidelines [including 173 articles] were selected from a systematic review. Overarching themes relating to ethical principles which emerged from interviews were as follows: Trust, transparency and accountability, equity and inclusion, power imbalance, tolerance and conflict management, and attention to cultural sensitivity. Practical principles that emerged included: Consensus rather than informed consent, ownership of data and research achievements, and sustainability and maintenance of relationships. According to findings and in comparison to international guidelines, the present study put more emphasis on cultural sensitivity and sustainability as CBPR ethical tangles. Community-based participatory research ethical challenges are of the same kind in most parts of the world. However, some discrepancies exist that calls for local scrutiny. Future use and critic of current explored ethical issues and principles are highly encouraged
Subject(s)
Ethics , Evaluation Studies as TopicABSTRACT
Community-based participatory research [CBPR] has been applied by health researchers and practitioners to address health disparities and community empowerment for health promotion. Despite the growing popularity of CBPR projects, there has been little effort to synthesize the literature to evaluate CBPR projects. The present review attempts to identify appropriate elements that may contribute to the successful or unsuccessful interventions. A systematic review was undertaken using evidence identified through searching electronic databases, web sites, and reference list checks. Predefined inclusion and exclusion criteria were assessed by reviewers. Levels of evidence, accounting for methodologic quality, were assessed for 3 types of CBPR approaches, including interventional, observational, and qualitative research design as well as CBPR elements through separate abstraction forms. Each included study was appraised with 2 quality grades, one for the elements of CBPR and one for research design. Of 14,222 identified articles, 403 included in the abstract review. Of these, 70 CBPR studies, that 56 intervention studies had different designs, and finally 8 studies met the inclusion criteria. The findings show that collaboration among community partners, researchers, and organizations led to community-level action to improve the health and wellbeing and to minimize health disparities. It enhanced the capacity of the community in terms of research and leadership skills. The result provided examples of effective CBPR that took place in a variety of communities. However, little has been written about the organizational capacities required to make these efforts successful. Some evidences were found for potentially effective strategies to increase the participant's levels of CBPR activities. Interventions that included community involvement have the potential to make important differences to levels of activities and should be promoted