Are we walking the talk of participatory Indigenous health research? A scoping review of the literature in Atlantic Canada.

Publisher: Public Library of Science Country of Publication: United States NLM ID: 101285081 Publication Model: eCollection Cited Medium: Internet ISSN: 1932-6203 (Electronic) Linking ISSN: 19326203 NLM ISO Abbreviation: PLoS One Subsets: MEDLINE

Original Publication: San Francisco, CA : Public Library of Science

Research*; Canada ; Databases, Factual ; Delivery of Health Care ; Indigenous Peoples

Introduction: Participatory research involving community engagement is considered the gold standard in Indigenous health research. However, it is sometimes unclear whether and how Indigenous communities are engaged in research that impacts them, and whether and how engagement is reported. Indigenous health research varies in its degree of community engagement from minimal involvement to being community-directed and led. Research led and directed by Indigenous communities can support reconciliation and reclamation in Canada and globally, however clearer reporting and understandings of community-led research is needed. This scoping review assesses (a) how and to what extent researchers are reporting community engagement in Indigenous health research in Atlantic Canada, and (b) what recommendations exist in the literature regarding participatory and community-led research.
Methods: Eleven databases were searched using keywords for Indigeneity, geographic regions, health, and Indigenous communities in Atlantic Canada between 2001-June 2020. Records were independently screened by two reviewers and were included if they were: peer-reviewed; written in English; health-related; and focused on Atlantic Canada. Data were extracted using a piloted data charting form, and a descriptive and thematic analysis was performed. 211 articles were retained for inclusion.
Results: Few empirical articles reported community engagement in all aspects of the research process. Most described incorporating community engagement at the project's onset and/or during data collection; only a few articles explicitly identified as entirely community-directed or led. Results revealed a gap in reported capacity-building for both Indigenous communities and researchers, necessary for holistic community engagement. Also revealed was the need for funding bodies, ethics boards, and peer review processes to better facilitate participatory and community-led Indigenous health research.
Conclusion: As Indigenous communities continue reclaiming sovereignty over identities and territories, participatory research must involve substantive, agreed-upon involvement of Indigenous communities, with community-directed and led research as the ultimate goal.
Competing Interests: The authors have declared that no competing interests exist.

Am J Public Health. 2012 Jun;102(6):1195-203. (PMID: 22095340)
Int J Environ Res Public Health. 2014 Jan 28;11(2):1536-48. (PMID: 24477214)
CMAJ Open. 2014 Jul 29;2(3):E133-8. (PMID: 25114895)
CMAJ. 2018 May 22;190(20):E616-E621. (PMID: 29789286)
J Am Diet Assoc. 2007 Jun;107(6):951-5. (PMID: 17524715)
J Nutr. 2012 Mar;142(3):541-7. (PMID: 22323760)
PLoS One. 2018 May 16;13(5):e0196990. (PMID: 29768456)
Front Genet. 2019 Oct 10;10:942. (PMID: 31649725)
Can J Public Health. 2020 Feb;111(1):50-59. (PMID: 31025298)
Rural Remote Health. 2015 Oct-Dec;15(4):3354. (PMID: 26498673)
J Empir Res Hum Res Ethics. 2010 Dec;5(4):13-22. (PMID: 21133783)
Can J Nurs Res. 2001 Dec;33(3):87-105. (PMID: 11845626)
CANNT J. 2010 Jan-Mar;20(1):20-8. (PMID: 20426357)
Environ Int. 2013 Sep;59:33-40. (PMID: 23770579)
ANS Adv Nurs Sci. 2019 Apr/Jun;42(2):139-155. (PMID: 30531355)
Pimatisiwin. 2008 Summer;6(2):145-153. (PMID: 20835376)
Glob Health Promot. 2019 Apr;26(3_suppl):6-16. (PMID: 30964401)
Prog Community Health Partnersh. 2017;11(1):25-33. (PMID: 28603148)
Res Involv Engagem. 2020 Feb 12;6:5. (PMID: 32082614)
Int J Circumpolar Health. 2019 Jan-Dec;78(2):1556558. (PMID: 31066648)
Prog Community Health Partnersh. 2012 Fall;6(3):349-60. (PMID: 22982848)
BMJ. 2021 Mar 29;372:n71. (PMID: 33782057)
Health Place. 2014 Nov;30:251-9. (PMID: 25460908)
Can J Nurs Res. 2010 Mar;42(1):119-27. (PMID: 20420096)
Creat Nurs. 2019 Nov 1;25(4):316-321. (PMID: 31796620)
Early Interv Psychiatry. 2019 Jun;13 Suppl 1:42-47. (PMID: 31243913)
Epidemiol Infect. 2015 Oct;143(14):3048-63. (PMID: 25697261)
Annu Rev Public Health. 2008;29:325-50. (PMID: 18173388)
PLoS One. 2018 May 24;13(5):e0196090. (PMID: 29795554)
Open Med. 2009;3(3):e123-30. (PMID: 21603045)
J Empir Res Hum Res Ethics. 2015 Oct;10(4):368-79. (PMID: 26306509)
J Urban Health. 2005 Jun;82(2 Suppl 2):ii3-12. (PMID: 15888635)
Soc Sci Med. 2008 Mar;66(6):1393-405. (PMID: 18191883)
J Epidemiol Community Health. 2006 Oct;60(10):854-7. (PMID: 16973531)
JDR Clin Trans Res. 2018 Jul;3(3):256-263. (PMID: 30938603)
Int J Circumpolar Health. 2011;70(5):488-97. (PMID: 22005728)
Int J Circumpolar Health. 2016 Jul 05;75:31127. (PMID: 27388896)
Qual Health Res. 2016 Nov;26(13):1862-1877. (PMID: 27179021)
Am J Public Health. 2016 Jul;106(7):1309-15. (PMID: 27196659)
BMJ. 2021 Apr 29;373:n857. (PMID: 33926904)
Soc Sci Med. 2017 Mar;176:85-92. (PMID: 28135693)
Soc Sci Med. 2015 Feb;126:86-98. (PMID: 25528558)
BMJ Open. 2020 Nov 27;10(11):e039736. (PMID: 33247010)
Prev Chronic Dis. 2012;9:E139. (PMID: 22898237)
CMAJ. 2019 Aug 26;191(34):E930-E931. (PMID: 31451523)
J Transcult Nurs. 2010 Jan;21(1):5-14. (PMID: 19820173)
CMAJ. 2018 Dec 10;190(49):E1434-E1440. (PMID: 30530610)
CJC Open. 2019 Oct 05;1(6):282-288. (PMID: 32159122)
Implement Sci. 2010 Sep 20;5:69. (PMID: 20854677)
Soc Sci Med. 2021 Jun;279:113947. (PMID: 33991791)
Am J Prev Med. 2011 Mar;40(3):386-9. (PMID: 21335275)
Soc Sci Med. 2017 Jan;172:28-36. (PMID: 27883930)
Am J Public Health. 2015 Jun;105(6):1149-54. (PMID: 25880963)
Prog Community Health Partnersh. 2016 Summer;10(2):197-205. (PMID: 27346765)
Paediatr Neonatal Pain. 2020 May 22;2(4):104-112. (PMID: 35548261)
Can J Diet Pract Res. 2010 Fall;71(3):e41-9. (PMID: 20825693)
Ecohealth. 2011 Mar;8(1):93-108. (PMID: 21785890)
Ecohealth. 2012 Mar;9(1):89-101. (PMID: 22526749)
Nurs Inq. 2010 Dec;17(4):282-8. (PMID: 21059145)
Prev Chronic Dis. 2016 Jan 14;13:E06. (PMID: 26766847)
Can J Public Health. 2009 Nov-Dec;100(6):432-5. (PMID: 20209736)
ISRN Nurs. 2012;2012:196437. (PMID: 22778991)
J Empir Res Hum Res Ethics. 2008 Jun;3(2):33-51. (PMID: 19385744)
Pimatisiwin. 2008 Summer;6(2):129-143. (PMID: 20827395)
JAMA. 2007 Jan 24;297(4):407-10. (PMID: 17244838)
Soc Sci Med. 2012 Aug;75(3):538-47. (PMID: 22595069)
ANS Adv Nurs Sci. 2016 Apr-Jun;39(2):181-98. (PMID: 27149230)
BMC Public Health. 2019 Oct 29;19(1):1388. (PMID: 31660911)
Health Educ Behav. 2013 Jun;40(3):346-54. (PMID: 23041704)
Health Place. 2013 Nov;24:183-9. (PMID: 24140703)
Health Res Policy Syst. 2009 Feb 13;7:2. (PMID: 19216770)
Qual Health Res. 2007 Feb;17(2):276-84. (PMID: 17220397)
Acad Med. 2014 Sep;89(9):1245-51. (PMID: 24979285)
Int J Circumpolar Health. 2017;76(1):1343637. (PMID: 28691646)
Can J Nurs Res. 2015 Mar;47(1):72-96. (PMID: 29509451)
Soc Sci Med. 2015 Sep;141:133-41. (PMID: 26275362)
Am J Prev Med. 2009 Dec;37(6 Suppl 1):S192-4. (PMID: 19896018)
Environ Sci Pollut Res Int. 2018 Nov;25(33):32975-32987. (PMID: 28702908)
Soc Sci Med. 2015 Jul;136-137:17-26. (PMID: 25974138)

Canada CIHR

Date Created: 20210727 Date Completed: 20211109 Latest Revision: 20230920

20231215

PMC8315539

10.1371/journal.pone.0255265

34314455