Health-Related Participatory Research in American Indian and Alaska Native Communities: A Scoping Review

Abstract

A scoping review was conducted to assess the state of the literature on health-related participatory research involving American Indian and Alaska Native communities. Online databases were searched for relevant articles published between 1/1/2000 and 5/31/2017. 10,000+ data points relevant to community-level engagement in and regulation of research, community research capacity and cultural adaptation were extracted from 178 articles. Community engagement varied across study components: 136 (76%) articles reported community participation in research-related meetings and other events and 49 (27%) articles reported community involvement in initiation of research. 156 (88%) articles reported use of community-level tools to guide or regulate research. 93 (52%) articles reported that community members received research-related training. 147 (82%) articles described some type of cultural adaptation. Across all articles, data points on community engagement were not reported in 3061 (40%) out of 7740 cases. Findings suggest a need for increased community engagement in early stages of the research process and for reporting guidelines for participatory research involving American Indian and Alaska Native communities. There is also need to further existing research on the impact of different components of participatory research on process and outcome measures and to develop funding mechanisms that account for the time and resource intensive nature of participatory research.

What do you mean by engagement? – evaluating the use of community engagement in the design and implementation of chronic disease-based interventions for Indigenous populations – scoping review

“…This includes but is not limited to the following study designs; participatory action research (PAR), community-based participatory research (CPBR), and community research (CR) [ 9 , 10 ]. PAR is characterized by a cycle of reflective inquiry undertaken by communities and researchers to create action for positive social change [ 11 , 12 ]. True PAR allows the community to lead all stages of the research from identifying the issue of concern to the resultant mode of action, in addition to following the First Nations principles of OCAP (Ownership, Control, Access, Possession) and Inuit Qaujimajatuqangit (IQ) [ 12 ].…”

“…PAR is characterized by a cycle of reflective inquiry undertaken by communities and researchers to create action for positive social change [ 11 , 12 ]. True PAR allows the community to lead all stages of the research from identifying the issue of concern to the resultant mode of action, in addition to following the First Nations principles of OCAP (Ownership, Control, Access, Possession) and Inuit Qaujimajatuqangit (IQ) [ 12 ]. Similarly, CBPR is guided by principles that call for equitable relations and co-learning among researchers and communities to integrate both Western and traditional Indigenous knowledges.…”

“…Similarly, CBPR is guided by principles that call for equitable relations and co-learning among researchers and communities to integrate both Western and traditional Indigenous knowledges. Active community engagement in all stages of the research process is encouraged, but the key goal is to develop interventions that are beneficial, sustainable, and locally relevant [ 12 ]. CR follows the same principles as PAR and CPBR, however there are less defined guidelines on its research procedures.…”

Data Management in Health-Related Research Involving Indigenous Communities in the United States and Canada: A Scoping Review

“…A detailed data extraction form was developed through an iterative process and with input from all authors. RW developed an initial draft, drawing on a preliminary review of the search results and lessons learned from an earlier scoping review (Woodbury et al, 2019). This draft was piloted using two articles from the search results and subsequently revised over the course of several team meetings.…”

Guidance for Genuine Collaboration: Insights from Academic, Tribal, and Community Partner Interviews on a New Research Partnership

“…Funding agencies could play a role by emphasizing the value and necessity of relationship building, and funding the time and resources required for both community and academic partners [7,30]. A review of health-related participatory research with Native communities found that meaningful relationship building was challenged by time and funding allotted in grants [31]. The National Institutes of Health-funded Center for American Indian Resilience and the Southwest Health Equity Research Collaborative has a unique funding mechanism to financially support relationship building for both academic and community partners [32].…”