Abstract
There is substantial literature on fetal alcohol spectrum disorder (FASD) research involving Aboriginal children, but little related literature on other common neurodevelopmental conditions such as autism spectrum disorder (ASD) or cerebral palsy (CP) for this population. As part of our work in cross-cultural neuroethics, we examined this phenomenon as a case study in Canada. We conducted semi-structured interviews with health researchers working on the frontline with First Nation communities to obtain perspectives about: (1) reasons for the lack of ASD and CP research within the Aboriginal context, (2) the potential ethical and social implications of this disparity, and (3) recommendations for change. Participants reported that the major barriers to engage in ASD or CP research are under-reporting and under-diagnosis of these conditions in Aboriginal communities, difficulties in establishing trust between community members and researchers, challenges in accessing children living under the care of child welfare services, and lack of support from universities and funding agencies to encourage community partnerships. They further perceived threats to justice as the population is denied the benefits of ASD and CP research, and stigma related to the possible over-representation of FASD in the population. The adoption of strength- and community-based practices to improve engagement and address disparities, and to create health databases with prevalence rates that are representative of all forms of disability in both Aboriginal and non-Aboriginal populations are critical steps to close these gaps.
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References
Assembly of First Nations. 2007. First nations regional longitudinal health survey (RHS) 2002. First Nations Information Governance Centre Web site. http://fnigc.ca/sites/default/files/ENpdf/RHS_2002/rhs2002-03-the_peoples_report_afn.pdf. Accessed 13 July 2015.
Tincani, M., J. Travers, and A. Boutot. 2009. Race, culture, and autism spectrum disorder: understanding the role of diversity in successful educational interventions. Res Pract Persons Severe Disabl. 34: 81–90.
Roy, M., and S. Balaratnasingam. 2010. Missed diagnosis of autism in an Australian aboriginal psychiatric population. Australasian Psychiatry 18: 534–537.
UNICEF. 2009. Canadian supplement to the state of the world’s children 2009 Aboriginal children’s health: leaving no child Behind. Toronto: UNICEF Canada.
Ball, Jim, et al. 2004. Reducing health disparities–roles of the health sector: Discussion Paper. Public Health Agency of Canada Website. http://www.phac-aspc.gc.ca/ph-sp/disparities/pdf06/disparities_discussion_paper_e.pdf. Accessed 13 July 2015.
Canadian UNICEF Committee. 2009. Canadian supplement to the state of the world’s children. Aboriginal children’s health: leaving no child behind. Report no. 0–921564038-4. Toronto, ON: UNICEF Canada.
Ring, Ian T., and Ngaire Brown. 2002. Indigenous health: chronically inadequate responses to damning statistics. Medical Journal of Australia 177(11/12): 629–632.
Ring, Ian, and David Firman. 1998. Reducing indigenous mortality in Australia: lessons from other countries. Medical Journal of Australia 169(10): 528–533.
Pietro, Di, C. Nina, and Judy Illes. 2014. Disparities in Canadian indigenous health research on neurodevelopmental disorders. Journal of Developmental and Behavioral Pediatrics 35(1): 74–81.
Canadian Institute of Health Research. 2010. Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada. Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. 2nd ed. Canada.
Dove, Edward S., et al. 2016. Ethics review for international data-intensive research. Science 351(6280): 1399–1400.
Tait, Caroline L., Robert Henry, and Rachel Loewen Walker. 2013. Child welfare: a social determinant of health for Canadian First Nations and Métis children. Pimatisiwin: Journal for Aboriginal and Indigenous Community Health 11(1): 39–53.
Werk, Christine M., Xinjie Cui, and Suzanne Tough. 2013. Fetal alcohol spectrum disorder among Aboriginal children under six years of age and living off reserve. First Peoples Child & Family Review 8(1): 7–16.
Sinha, Vandna, and Anna Kozlowski. 2013. The structure of aboriginal child welfare in Canada. The International Indigenous Policy Journal 4(2): 2.
Waechter, Randall, et al. 2009. Child Protective Services and University-Based Partnerships: A Participatory Action-Based Model for Creating and Sharing Knowledge. First Peoples Child & Family Review 4(2): 118–128.
Blackstock, Cindy, et al. 2006. Touchstones of Hope for Indigenous Children, Youth, and Families. First Nations Child & Family Caring Society of Canada Website. http://cwrp.ca/sites/default/files/publications/en/Touchstones_of_Hope.pdf. Accessed 15 July 2015.
Aslam, Abid. 2013. The state of the world’s children 2013: children with disabilities. UNICEF Website. http://www.unicef.org/sowc2013/files/SWCR2013_ENG_Lo_res_24_Apr_2013.pdf. Accessed on 13 July 2015.
Ball, Jessica, and Pauline Janyst. 2008. Enacting research ethics in partnerships with indigenous communities in Canada: “Do it in a good way.”. Journal of Empirical Research on Human Research Ethics 3(2): 33–51.
Battiste, Marie, and James Youngblood. 2000. Protecting Indigenous knowledge and heritage: A global challenge. Saskatoon, Purich Publishing Ltd.
Castellano, Marline Brant. 2004. Ethics of Aboriginal research. Journal of Aboriginal Health. 1(1): 98.
Castleden, Heather, Vanessa Sloan Morgan, and Christopher Lamb. 2012. “I spent the first year drinking tea”: Exploring Canadian university researchers’ perspectives on community-based participatory research involving Indigenous peoples. The Canadian Geographer/Le Géographe canadien 56(2): 160–179.
Glass, Kathleen Cranley, and Joseph Kaufert. 2007. Research ethics review and aboriginal community values: can the two be reconciled? Journal of Empirical Research on Human Research Ethics 2(2): 25–40.
Svalastog, Anna-Lydia, and Stefan Eriksson. 2010. You can use my name; You don’t have to steal my story—A critique of anonymity in Indigenous studies. Developing World Bioethics 10: 104–110.
Maar, Marion, M. McGregor Sutherland, and Lorrilee McGregor. 2007. First Nations taking charge of health research: The development of a community-based ethics review process on Manitoulin Island. In Aboriginal policy research, moving forward, making a difference, ed. Jerry P. White, Susan Wingert, Dan Peavon, and Paul Maxim, 55–68. Toronto: Thompson Education Publishing.
Reading, Jeff, and Earl Mowgesic. 2002. Improving the health of future generations: The Canadian Institutes of Health Research, Institute of Aboriginal Peoples’ Health. American Journal of Public Health Research 92: 1396–1400.
Illes, Judy. 2006. Neuroethics: Defining the Issues in Theory, Practice, and Policy. USA: Oxford University Press.
Tesluk, Jordan, Ralph Matthews, and Judy Illes. 2016. First Nations and environmental neuroethics: Perspectives on brain health from a world of change. In Neuroethics: Looking to the Future, ed. Judy Illes. Oxford, Oxford University Press (forthcoming).
Acknowledgments
We wish to thank NeuroDevNet collaborators and other colleagues at the National Core for Neuroethics for discussions and assistance during the preparation of this manuscript. JI is Canada Research Chair in Neuroethics.
Author’s Contribution
Both authors conceptualized the study and wrote the manuscript. First author conducted the interviews, analyzed the transcripts. All authors read and approved the final manuscript.
Funding
This work was supported by NeuroDevNet Inc., a network of Canada’s Networks of Centres of Excellence (NCE). Support for this work also generously enabled by CIHR CNE #85117, the British Columbia Knowledge Development Fund, the Canadian Foundation for Innovation (JI) and the Vancouver Coastal Health Research Initiative.
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Di Pietro, N., Illes, J. Closing Gaps: Strength-Based Approaches to Research with Aboriginal Children with Neurodevelopmental Disorders. Neuroethics 9, 243–252 (2016). https://doi.org/10.1007/s12152-016-9281-8
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DOI: https://doi.org/10.1007/s12152-016-9281-8