Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Systematic Review
  • Published:

Indigenous participation in pediatric Indigenous health research in Canada: a systematic review

Abstract

For health inequities to be successfully addressed through health research, it is necessary for researchers to strive for genuine engagement with stakeholders. Indigenous people provide critical perspectives in Indigenous health research. The objective of this review was to systematically review the existing pediatric Indigenous health research in Canada to determine the prevalence of Indigenous participation. Embase, MEDLINE, Cochrane Library were searched on April 15, 2017 and updated on July 16, 2020. A total of 798 studies focused on the health of Indigenous children ≤18 in Canada were included, of 17,752 abstracts screened in English and French. A total of 46.1% of articles indicated Indigenous participation, increasing over time. Organization/government was the most common form of Indigenous participation (62.8%) and Indigenous researcher as author was least common (10.9%). Participation by child age, geography and topic area varied. The most common category of topic researched was nutrition, lifestyle and anthropometrics. Indigeneity of researchers was determined by self-identification in the papers and may be an underestimate. Although improving over time, less than half of studies about Indigenous children in Canada included Indigenous participation in their execution. Journals and funding bodies must ensure fulsome participation of Indigenous people in research focused on Indigenous children.

Impact

  • Indigenous participation in pediatric Indigenous health research is critical to producing ethical relevant and actionable results.

  • This review describes the status of Indigenous participation in this body of work in Canada.

  • This review highlights areas of concern and strength to improve the practices and ethics of medical researchers in this area, thereby increasing relevance of pediatric Indigenous health research to communities.

This is a preview of subscription content, access via your institution

Access options

Buy this article

Prices may be subject to local taxes which are calculated during checkout

Fig. 1: PRISMA 2020 flow diagram.
Fig. 2: Indigenous participation in Canadian pediatric Indigenous health research by decade.
Fig. 3: Neurological, behavior, mental health subcategory participation (n = 155).
Fig. 4: Nutrition, lifestyle and anthropometrics subcategory participation (n = 183).
Fig. 5: Distribution of health topics within decade categories.

Similar content being viewed by others

Data availability

All data generated or analyzed during this study are included in this published article and its Supplementary information files.

References

  1. Hay, T., Blackstock, C. & Kirlew, M. Dr. Peter Bryce (1853-1932): whistleblower on residential schools. Can. Med. Assoc. J. 192, E223–E224 (2020).

    Article  Google Scholar 

  2. Truth and Reconciliation Commission of Canada. Honouring the Truth, Reconciling for the Future Summary of the Final Report of the Truth and Reconciliation Commission of Canada. https://ehprnh2mwo3.exactdn.com/wp-content/uploads/2021/01/Executive_Summary_English_Web.pdf (2015).

  3. Mosby, I. Administering colonial science: nutrition research and human biomedical experimentation in aboriginal communities and residential schools, 1942–1952. Hist. Soc. Soc. Hist. 46, 145–172 (2013).

    Article  Google Scholar 

  4. Hamilton, S. Where are the children buried? Lakehead University, Anthropology Do (2015).

  5. Wilk, P., Maltby, A. & Cooke, M. Residential schools and the effects on Indigenous health and well-being in Canada—a scoping review. Public Health Rev. 38, 8 (2017).

  6. Lux, M. Separate Beds: A History of Indian Hospitals in Canada, 1920s–1980s (University of Toronto Press, Toronto, 2016).

  7. Government of Canada. Reducing the number of Indigenous children in care. https://www.sac-isc.gc.ca/eng/1541187352297/1541187392851 (2022).

  8. Barker, B. et al. Intergenerational trauma: the relationship between residential schools and the child welfare system among young people who use drugs in Vancouver, Canada. J. Adolesc. Health 65, 248–254 (2019).

    Article  PubMed  PubMed Central  Google Scholar 

  9. First Nations Child and Family Caring Society et al. V. Canada. https://www.amnesty.ca/legal-brief/first-nations-child-and-family-caring-society-et-al-v-canada/ (2016).

  10. Volume 5: Renewal: a twenty-year commitment. Report of the Royal Commission on Aboriginal Peoples. Appendix E: Ethical guidelines for research. Ottawa [updated 1996]. https://data2.archives.ca/e/e448/e011188230-05.pdf.

  11. CIHR guidelines for health research involving aboriginal people (2007–2010) Ottawa. https://cihr-irsc.gc.ca/e/29134.html (2007).

  12. Research involving the First Nations, Inuit and Métis peoples of Canada Tri- Council policy statement: ethical conduct for research involving humans. Ottawa. https://ethics.gc.ca/eng/tcps2-eptc2_2018_chapter9-chapitre9.html (2018).

  13. Principles of Ethical Métis Research. https://achh.ca/wp-content/uploads/2018/07/Guide_Ethics_NAHOMetisCentre.pdf (2011).

  14. The First Nations Principles of OCAP Akwesasne (ON). https://fnigc.ca/ocap-training/ (2022).

  15. First Nations ethics guide on research and Aboriginal traditional knowledge. Ottawa. https://www.afn.ca/uploads/files/fn_ethics_guide_on_research_and_atk.pdf (2009).

  16. First Nations regional longitudinal health survey (RHS): code of research ethics. Ottawa (revised 22 February 2007). https://www.afn.ca/uploads/files/fn_ethics_guide_on_research_and_atk.pdf (1997).

  17. National Inuit Strategy on Research. Ottawa. https://www.itk.ca/national-strategy-on-research-launched/ (2018).

  18. University of Manitoba Faculty of Health Sciences. Framework for research engagement with First Nation, Metis, and Inuit Peoples. https://umanitoba.ca/faculties/health_sciences/medicine/media/UofM_Framework_Report_web.pdf (2014).

  19. Castellano, B. & Reading, J. Policy writing as dialogue: drafting an aboriginal chapter for Canada’s Tri-Council Policy Statement: ethical conduct for research involving humans. Int. Indig. Policy J. 1 (2010).

  20. Hyett, S. L., Gabel, C., Marjerrison, S. & Schwartz, L. Deficit-based Indigenous health research and the stereotyping of indigenous people. Can. J. Bioeth. 2, 102–109 (2019).

    Article  Google Scholar 

  21. Aboriginal Health Research Review Committee. Guidelines for ethical aboriginal research (GEAR). Ontario. http://www.noojmowin-teg.ca/images/GEAR_-_FINAL.pdf (2003).

  22. Six Nations Council. Six Nations (ON). https://achh.ca/wp-content/uploads/2018/07/Protocol_Ethics_Six-Nations.pdf (2014).

  23. Maar, M. S. M. & McGregor, L. A regional model for ethical engagement: The First Nations research ethics committee on Manitoulin Island. Aboriginal Policy Research Consortium International (APRCi) 12 (2007).

  24. Hyett, S., Marjerrison, S. & Gabel, C. Improving health research among Indigenous Peoples in Canada. Can. Med. Assoc. J. 190, E616 (2018).

    Article  Google Scholar 

  25. Sheppard, A. J. & Hetherington, R. A decade of research in Inuit children, youth, and maternal health in Canada: areas of concentrations and scarcities. Int. J. Circumpolar Health 71, 18383 (2012).

    Article  PubMed  Google Scholar 

  26. Di Pietro, N. C. & Illes, J. Disparities in Canadian indigenous health research on neurodevelopmental disorders. J. Dev. Behav. Pediatr. 35, 74–81 (2014).

    Article  PubMed  Google Scholar 

  27. Williams, R. J., Odaibo, F. S. & McGee, J. M. Incidence of fetal alcohol syndrome in northeastern Manitoba. Can. J. Public Health 90, 192–194 (1999).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  28. Young, T. K. Review of research on aboriginal populations in Canada: relevance to their health needs. BMJ 327, 419–422 (2003).

    Article  PubMed  PubMed Central  Google Scholar 

  29. Anderson, M. Indigenous health research and reconciliation. Can. Med. Assoc. J. 191, E930 (2019).

    Article  Google Scholar 

  30. Sylliboy, J. R., Latimer, M., Marshall, E. A. & MacLeod, E. Communities take the lead: exploring Indigenous health research practices through Two-Eyed Seeing & kinship. Int. J. Circumpolar Health 80, 1929755 (2021).

    Article  PubMed  PubMed Central  Google Scholar 

  31. University of Alberta Library. Health Sciences Search Filters (Indigenous Peoples (Canada)) 2013–2016. https://guides.library.ualberta.ca/health-sciences-search-filters/indigenous-peoples (2022).

  32. Murphy, K. et al. Are we walking the talk of participatory Indigenous health research? A scoping review of the literature in Atlantic Canada. PLoS One 16, e0255265 (2021).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  33. Ball, J. & Janyst, P. Enacting research ethics in partnerships with Indigenous communities in Canada: “Do it in a Good Way”. J. Empir. Res. Hum. Res. Ethics 3, 33–51 (2008).

    Article  PubMed  Google Scholar 

  34. Assembly, U. G. United Nations Declaration on the Rights of Indigenous Peoples: resolution/adopted by the General Assembly (2007).

  35. Shi, C. et al. Ethnic disparities in children’s oral health: findings from a population-based survey of grade 1 and 2 schoolchildren in Alberta, Canada. BMC Oral. Health 18, 1 (2018).

    Article  PubMed  PubMed Central  Google Scholar 

  36. Irvine, J., Holve, S., Krol, D. & Schroth, R. Early childhood caries in Indigenous communities: a joint statement with the American Academy of Pediatrics. Paediatr. Child Health 16, 351–357 (2011).

    Article  PubMed  PubMed Central  Google Scholar 

  37. Graham-Cumming, G. Infant care in Canadian Indian homes. Can. J. Public Health Rev. 58, 391–394 (1967).

    CAS  Google Scholar 

  38. Cunningham, J., Solomon, T. & Muramoto, M. Alcohol use among Native Americans compared to whites: examining the veracity of the ‘Native American elevated alcohol consumption’ belief. Drug Alcohol Depend. 160, 65–75 (2016).

    Article  PubMed  Google Scholar 

  39. Allan, B. & Smylie, J. First Peoples, second class treatment: the role of racism in the health and well-being of Indigenous peoples in Canada (The Wellesley Institute, Toronto, ON, 2015).

  40. Leckey, R., Schmieder-Gropen, R., Nnebe, C. & Clouthier, M. Indigenous parents and child welfare: Mistrust, epistemic injustice, and training. Soc. Leg. Stud. 31, 559–579 (2021).

    Article  Google Scholar 

  41. Government of Canada. Setting new directions to support Indigenous research and research training in Canada 2019–2022 (2019).

  42. Canadian Institutes of Health Research. CIHR Institute of Indigenous Peoples’ Health. https://cihr-irsc.gc.ca/e/49453.html (2022).

  43. McMaster University Indigenous Research Institute. Indigenous Undergraduate Summer Research Scholars. http://miri.mcmaster.ca/iusrs/ (2022).

  44. Kumar, M., Wesche, S. & McGuire, C. Tends in Métis-related health research (1980-2009): identification of research gaps. Can. J. Public Health 103, 23–28 (2012).

    Article  PubMed  PubMed Central  Google Scholar 

  45. Bartlett, J. G., Iwasaki, Y., Gottlieb, B., Hall, D. & Mannell, R. Framework for Aboriginal-guided decolonizing research involving Métis and First Nations persons with diabetes. Soc. Sci. Med. 65, 2371–2382 (2007).

    Article  PubMed  Google Scholar 

  46. Métis Centre of the National Aboriginal Health Organization. Paucity of Métis-Specific health and Well-being Data and Information: Underlying Factors (Prince George, BC, 2011).

  47. Government of Canada. Annual Report to Parliament 2020. https://www.sac-isc.gc.ca/eng/1602010609492/1602010631711 (2020).

  48. Banerji, A. Preventing unintentional injuries in Indigenous children and youth in Canada. Paediatr. Child Health 17, 393 (2012).

    Article  PubMed  PubMed Central  Google Scholar 

  49. Lefebvre, C. et al. Chapter 4: Searching for and selecting studies. In: Cochrane Handbook for Systematic Reviews of Interventions version 6.3 (eds Higgins, J. P. T. et al.) (updated February 2022) (Cochrane); www.training.cochrane.org/handbook (2022).

Download references

Funding

This project has no funding to declare. S.M.’s research work is supported by a Hamilton Health Sciences Early Career Award and the McMaster University Ronald Barr Professorship in Pediatric Oncology.

Author information

Authors and Affiliations

Authors

Contributions

This work was a collaboration between Indigenous and non-Indigenous researchers. Both Indigenous and non-Indigenous authors were included in the process of evaluating articles, writing, and high-level expertise. The initial idea for the work was proposed by two non-Indigenous authors, one junior (S.H.) one senior (S.M.). A junior Indigenous researcher was invited to join the review team (R.M.), as well as a senior Indigenous researcher (B.D.) who provided high-level feedback on what datapoints would be helpful and realistic to collect. This same author contributed to appropriate interpretation of the data and review of the manuscript. Later, two additional junior Indigenous researchers (E.L. and J.R.) joined the review team. One of these junior researchers (J.R.) participated extensively in decision making around methodological issues. S.H. conceptualized and designed the study, lead the acquisition, analysis and interpretation of the data, drafted the initial manuscript, and reviewed and revised the manuscript. Self-location statement: I approach this work from a white settler lens. I grew up in Brantford, Ontario on the Haldimand Tract, which is currently only 5% of the original land promised to Six Nations as part of the Haldimand Treaty. In my professional and personal life, I have had the privilege of working with and learning from Indigenous community members and scholars from many nations, in many different contexts, and I work to stay accountable in all aspects of my life to these personal and professional ties. I understand that as a settler I am not an expert on what Indigenous communities want or need, and I will make mistakes regardless of my intentions. As such, I continually work to partner with those who are experts and recommend all other settler-researchers do the same. I hope to continue developing into a researcher deserving of the trust of the partners I am accountable to and can act as a resource to support my Indigenous colleagues in this work. J.R. conceptualized and designed the study, contributed to acquisition, analysis and interpretation of the data, and reviewed and revised the manuscript critically for important intellectual content. Self-location statement: I am a nêhiyaw iskwêw (Cree woman) and my community is Saddle Lake Cree Nation. I grew up primarily in Vancouver, BC and would spend time visiting my father, brothers and sisters, nieces and nephews, aunts, uncles, and cousins in Saddle Lake. Exploitive research of Indigenous peoples has been taking place for decades. My community, and particularly my step-father who went to residential school and was a victim of nutritional experimentation, have not been exempt. My background and my desire to ensure that research with the most vulnerable populations is connected to the communities it is working with propelled me to engage in this research. B.D. contributed to the conceptualization of the study, interpretation of the data and reviewed and revised the manuscript critically for important intellectual content. R.M. contributed to acquisition and analysis of the data and reviewed and revised the manuscript critically for important intellectual content. E.L. contributed to acquisition and analysis of the data and reviewed and revised the manuscript critically for important intellectual content. Self-location statement: I am an Indigenous man with a mixed background, including Mohawk, Seneca, and British ancestry. I grew up In Brantford, Ontario which is where the Mohawk institute was located that some of my family members attended as a residential school and later as a day school. I completed my Master of Social Work degree at Wilfrid Laurier University in the Indigenous Field of Study program to reclaim knowledge of Indigenous concepts of wellness and methods of healing. I use this framework in my current job as a social worker in the education sector. S.M. conceptualized and designed the study, guided and supervised the acquisition and analysis of the data, interpreted the data, and reviewed and revised the manuscript critically for important intellectual content. Self-location statement: I am a pediatric oncologist and researcher, of white settler background. I grew up in Eastern Ontario, in close proximity to Akwesanse, and presently make my home in Hamilton, in the region bound by the Dish with One Spoon Wampum Agreement. My research work is fueled by the inequities I observe in my clinical practice, including the disparate outcomes for Indigenous children with cancer in Canada. I have been fortunate to learn from and collaborate with many First Nations, Inuit and Métis scholars and neighbors through my research work, as well as through creating welcoming clinical spaces at the McMaster Children’s Hospital, developing opportunities for learners through the McMaster University Post-Graduate Medical Education Indigenous Health Council, and the Pediatric Oncology Group of Ontario Indigenous Children with Cancer Initiative. I aspire to continuing to work alongside Indigenous partners, for so long as I can contribute in a good way.

Corresponding author

Correspondence to Stacey Marjerrison.

Ethics declarations

Competing interests

The authors declare no competing interests.

Additional information

Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary information

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Hyett, S., Rafael, J., Downey, B. et al. Indigenous participation in pediatric Indigenous health research in Canada: a systematic review. Pediatr Res 93, 1800–1809 (2023). https://doi.org/10.1038/s41390-022-02361-9

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/s41390-022-02361-9

Search

Quick links