Health-Related Participatory Research in American Indian and Alaska Native Communities: A Scoping Review
Abstract
:1. Introduction
2. Materials and Methods
2.1. Overview of Scoping Review Methodology
2.2. Research Team
2.3. Research Question and Purpose
- RQ1: What is the character and extent of community engagement in research in health-related PR involving AIAN communities?
- RQ2: What tools for guiding and regulating research at the community level are employed in health-related PR involving AIAN communities?
- RQ3: How is cultural adaptation employed in health-related PR involving AIAN communities?
- RQ4: What activities related to development of community research capacity are undertaken in health-related PR involving AIAN communities?
2.4. Search Strategy
2.5. Article Selection
2.6. Data Extraction
2.7. Consultation
3. Results
3.1. Overview of Health-Related PR in AIAN Communities
3.2. Community Engagement in the Research Process
3.2.1. Initiation
3.2.2. Funding
3.2.3. Research Question and Study Aims
3.2.4. Administration
3.2.5. Design, Methods, and Approach
3.2.6. Protocols
3.2.7. Meetings and Events
3.2.8. Data Collection and Analysis
3.2.9. Intervention
3.2.10. Dissemination
3.3. Community Guidance and Tribal Regulation of Research
3.3.1. Community Advisory Groups
3.3.2. Tribal Mechanisms for Regulating Research
3.4. Cultural Adaptation
3.4.1. Study Design
3.4.2. Study Protocols
3.4.3. Interventions
3.4.4. Dissemination Methods and Products
3.5. Capacity Building and Co-learning
3.5.1. Developing Community Capacity to Regulate Research
3.5.2. Developing Community Capacity to Conduct Research
3.5.3. Paid Employment
3.5.4. Researcher Co-learning
4. Discussion
4.1. Research Recommendations
- How do community values and norms, as well as community resources and infrastructure, affect the acceptability and feasibility of different study designs and objectives?
- Do various PR approaches differentially affect project timelines and costs, participation and retention rates, or the effectiveness of an intervention?
- How do different strategies for adapting PR approaches and evidence-based interventions to the needs of individual communities compare to one another in terms of ease of application and impact on outcomes?
- What is the perspective of community stakeholders on the costs and benefits of different PR approaches and the relative importance of the various components of those approaches?
4.2. Practice Recommendations
4.3. Policy Recommendations
4.4. Strengths and Limitations
5. Conclusions
Author Contributions
Funding
Acknowledgments
Conflicts of Interest
References
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Health Conditions/Issues or Topics of Interest | Articles n (%) |
---|---|
Any Cancer | 33 (18) |
Breast Cancer 1 | 13 (7) |
Cervical Cancer 2 | 6 (3) |
Colorectal Cancer | 2 (1) |
Cancer (General/Other) 3 | 15 (8) |
Any Mental/Behavioral Health | 24 (13) |
Historical Trauma | 3 (2) |
Suicide | 13 (7) |
Mental/Behavioral Health (General) | 9 (5) |
Any Substance Use/Misuse | 34 (19) |
Alcohol Misuse | 13 (7) |
Tobacco Use 4 | 8 (4) |
Substance Misuse (General/Other) | 16 (9) |
CVD | 4 (2) |
Diabetes/Obesity | 18 (10) |
Elder Care | 6 (3) |
Environmental Health | 8 (4) |
Exercise/Diet | 14 (8) |
Family Wellness | 9 (5) |
Sexual Health 5 | 14 (8) |
Evaluating/Developing Health Research Systems and Approaches | 23 (13) |
Evaluating/Developing Health Care and Public Health Systems | 18 (10) |
Other | 21 (12) |
Study Component | Example Activity | Y (%) | N (%) | NR (%) | NA (%) |
---|---|---|---|---|---|
Initiation | Ft. Peck Tribes invited Montana State University Staff to Ft. Peck Reservation to discuss potential research project on the community’s sexual and reproductive health needs [23]. | 49 (27) | 20 (11) | 110 (61) | 1 (1) |
Funding | Community members helped review and provide feedback on grant proposals and assisted in drafting grant proposals [24]. | 46 (26) | 11 (6) | 120 (67) | 3 (2) |
Research Question, Study Aims | Community elders, oral historian, and Lakota linguist involved in discussion that determined study goals [25]. | 118 (66) | 6 (3) | 55 (31) | 1 (1) |
Administration | Community researchers participated in selection, interview, and hiring of community organizers [26]. | 96 (53) | 2 (1) | 81 (45) | 1 (1) |
Design, Methods, Approach | Community input guided selection of screening methods and processes and targets related to adaptation of screening methods [27]. | 114 (63) | 3 (2) | 62 (34) | 1 (1) |
Protocols | CAG 1, community-based project staff, and researchers co-developed telephone scripts and surveys with community member input [28]. | 129 (72) | 1 (1) | 47 (26) | 3 (2) |
Meetings and Events | CAG meetings, open community meetings, executive board meetings, and monthly meetings between lay health advisors and project staff [29]. | 136 (76) | 0 (0) | 16 (9) | 28 (16) |
Data Collection | Community health representatives moderated focus groups and took notes [30]. | 115 (64) | 7 (4) | 56 (31) | 2 (1) |
Data Analysis | Community members helped develop codebook and were involved in coding and review of themes developed from codes [31]. | 83 (46) | 14 (8) | 77 (43) | 6 (3) |
Intervention | CAG suggested cultural adaptations to educational materials to promote organ donation, including addition of storytelling components, emphasis on community values of generosity, and local photography [32]. | 111 (62) | 1 (1) | 29 (16) | 39 (22) |
Dissemination | CAG members reviewed manuscripts draft and their comments were incorporated into final draft; CAG members also represented the project at national forums [33]. | 93 (52) | 1 (1) | 77 (43) | 9 (5) |
Regulatory/Guidance Mechanism | Articles n (%) |
---|---|
Regulatory/Guidance Group CAG 1 | 125 (69) |
Tribal Leader | 11 (6) |
Tribal Liaison/Facilitator | 64 (36) |
Community Leader | 4 (2) |
Tribal Council | 45 (25) |
Tribal Research Committee/Board | 14 (8) |
Tribal Health Committee/Board | 18 (10) |
Other Tribal Committee/Board | 26 (14) |
Tribal IRB 2 | 18 (10) |
Regulatory/Guidance Document | |
Research Code/Agreement | 5 (3) |
Memorandum of Agreement | 10 (6) |
Tribal Resolution | 17 (9) |
Data Sharing Agreement | 4 (2) |
Total Regulatory/Guidance Groups and Documents per Study | |
0 Groups and Documents | 21 (12) |
1 Groups and Documents | 44 (24) |
2 Groups and Documents | 56 (31) |
3 Groups and Documents | 38 (21) |
4 Groups and Documents | 12 (7) |
>4 Groups and Documents | 7 (4) |
Cultural Adaptation | Articles n (%) |
---|---|
Type of Cultural Adaptation | |
Culturally Adapted Study Design | 72 (40) |
Culturally Adapted Study Protocols | 109 (61) |
Culturally Adapted Interventions | 80 (44) |
Dissemination Products and Methods | 35 (19) |
Number of Culturally Adapted Study Components | |
0 Culturally Adapted Components | 32 (18) |
1 Culturally Adapted Components | 55 (31) |
2 Culturally Adapted Components | 50 (28) |
3 Culturally Adapted Components | 23 (13) |
4 Culturally Adapted Components | 18 (10) |
Measures of Research Capacity or Co-learning | Y (%) | N (%) | NR (%) | NA (%) |
---|---|---|---|---|
Community members received research training | 93 (52) | 10 (6) | 76 (42) | 1 (1) |
Community members received academic credit for research training | 4 (2) | 2 (1) | 87 (48) | 0 (0) |
Community members were employed by researchers | 50 (28) | 7 (4) | 120 (67) | 3 (2) |
Community had prior experience with research | 82 (46) | 1 (1) | 96 (53) | 1 (1) |
Community members received training in PR | 43 (24) | 1 (1) | 135 (75) | 1 (1) |
Researchers Received Training in Community Culture/History | 60 (33) | 0 (0) | 117 (65) | 3 (2) |
Researchers had Prior Experience with Community | 89 (49) | 4 (2) | 85 (47) | 2 (1) |
Researchers had or Received Training in PR | 47 (26) | 1 (1) | 131 (73) | 1 (1) |
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Woodbury, R.B.; Ketchum, S.; Hiratsuka, V.Y.; Spicer, P. Health-Related Participatory Research in American Indian and Alaska Native Communities: A Scoping Review. Int. J. Environ. Res. Public Health 2019, 16, 2969. https://doi.org/10.3390/ijerph16162969
Woodbury RB, Ketchum S, Hiratsuka VY, Spicer P. Health-Related Participatory Research in American Indian and Alaska Native Communities: A Scoping Review. International Journal of Environmental Research and Public Health. 2019; 16(16):2969. https://doi.org/10.3390/ijerph16162969
Chicago/Turabian StyleWoodbury, R. Brian, Scott Ketchum, Vanessa Y. Hiratsuka, and Paul Spicer. 2019. "Health-Related Participatory Research in American Indian and Alaska Native Communities: A Scoping Review" International Journal of Environmental Research and Public Health 16, no. 16: 2969. https://doi.org/10.3390/ijerph16162969