Closing Gaps: Strength-Based Approaches to Research with Aboriginal Children with Neurodevelopmental Disorders

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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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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Correspondence to Judy Illes.

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The authors declare that they have no conflict of interest.

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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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Keywords

  • Fetal alcohol spectrum disorder
  • Neuroethics
  • Health disparities
  • Indigenous peoples