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Recruitment and Engagement of Indigenous Peoples in Brain-Related Health Research

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Abstract

Objectives

To characterize recruitment approaches to research on the brain and mind that involves Indigenous peoples.

Methods

We conducted a secondary analysis of a Harding et al. (2021) scoping review. Reviewers screened studies (n = 66) for sampling methods, recruitment and engagement, positionality statements, and details on ethics approvals.

Synthesis

We identified twenty-nine (29) English-language articles relevant to the analysis. Of these, 52% (n = 15/29) reported a mix of sampling methods; 45% (n = 13/29) contained statements or information about author positionalities. While, overall, 24% (n = 7/29) of the studies were missing information about ethics protocols, we observe an improvement over time in the reporting of approvals and use of community-engaged participant recruitment methods. Current brain research studies demonstrate ways of collaborating with Indigenous communities that meet existing ethics guidelines. To be wholly responsive to the needs of Indigenous peoples, however, researchers may need to exceed existing ethical benchmarks.. Positionality statements successfully detailed the relationships of the research teams with the communities with which they work, and contextualized recruitment methods.

Conclusion

Improved quality and meaningfulness of brain research with Indigenous peoples and trust in the research process and public health will be enhanced when remaining gaps in protecting and reporting of participant recruitment methods are closed.

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Data Availability

Available upon request.

Code Availability

Not applicable.

Notes

  1. OCAP® is a registered trademark of the First Nations Information Governance Centre [12].

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Acknowledgements

Neuroethics Canada is located on the traditional, ancestral, and unceded territory of the xʷməθkʷəỳəm (Musqueam people). JI is a Distinguished University Scholar, UBC Distinguished Scholar in Neuroethics, and co-lead of the Canadian Brain Research Strategy (CBRS). MLP is a member of the Indigenous Knowledge Holders Group of the CBRS.

Funding

No funding was received for  conducting this study. JI is UBC Distinguished University Scholar and the UBC Distinguished Scholar in Neuroethics (North Family Foundation).

Author information

Authors and Affiliations

  1. Division of Neurology, Department of Medicine, Neuroethics Canada, University of BritishColumbia, Vancouver, BC, V6T 2B5, Canada

    Miles Schaffrick, Louise Harding & Judy Illes

  2. Department of Biomedical Sciences, Ontario Veterinary College, University of Guelph, Guelph, ON, N1G 2W1, Canada

    Melissa L. Perreault

Authors
  1. Miles Schaffrick
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  2. Melissa L. Perreault
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  3. Louise Harding
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  4. Judy Illes
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Contributions

Miles Schaffrick: Conceptualization, Methodology, Investigation, Visualization, Writing—Original draft preparation. Melissa L. Perreault: Writing—Review & Editing. Louise Harding: Investigation, Writing—Review & Editing Judy Illes: Conceptualization, Methodology, Supervision, Writing—Review & Editing.

Corresponding author

Correspondence to Judy Illes.

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Appendices

Appendix 1

Papers Included in Review

Arkles, R., Jankelson, C., Radford, K., & Jackson Pulver, L. 2020. Family caregiving for older Aboriginal people in urban Australia: Disclosing worlds of meaning in the dementia experience. Dementia, 19(2), 397–415.

Armstrong, E., Coffin, J., Hersh, D., Katzenellenbogen, J., Thompson, S., Ciccone, N., & Mcallister, M. 2019. You felt like a prisoner in your own self, trapped”: The experiences of Aboriginal people with acquired communication disorders. Disability and Rehabilitation, 1–14.

Carr, J., Lalara, J., Lalara, G., O’hare, G., Massey, L., Kenny, N., Pope, K. E., Clough, A. R., Lowell, A., & Barker, R. N. 2019. “Staying strong on the inside and outside” to keep walking and moving around: Perspectives from Aboriginal people with Machado Joseph Disease and their families from the Groote Eylandt Archipelago, Australia. PloS One, 14(3), 1–17. 10.1371/journal.pone.0212953

Cawte, J. 1964. Australian ethnopsychiatry in the field: A sampling in North Kimberly. Medical Journal of Australia, 1(13), 467–472. 10.5694/j.1326-5377.1964.tb134273.x

Choudhry, F., Khan, T., Park, M., & Golden, L. 2018. Mental health conceptualization and resilience factors in the Kalasha youth: An Indigenous ethnic and religious minority community in Pakistan. Frontiers in Public Health, 6, 187.

Corbett, A., Francis, K., & Chapman, Y. 2006. The experience of whanau caring for members disabled from the effects of a cerebro-vascular accident. Contemporary Nurse, 22(2), 255–263. 10.5172/conu.2006.22.2.255

Cornect-Benoit, A., Pitawanakwat, K., Wiikwemkoong Unceded Territory Collaborating First Nation Community, Walker, J., Manitowabi, D., & Jacklin, K. 2020. Nurturing meaningful intergenerational social engagements to support healthy brain aging for Anishinaabe older adults. Canadian Journal on Ageing, 39(2), 263–283.

Dobkin de Rios, M. 1984. The vidente phenomenon in third world traditional healing: An Amazonian example. Medical Anthropology, 8(1), 60–70. https://go.exlibris.link/78rDN7Cn

Friedman, D. B., Laditka, S. B., Laditka, J. N., Wu, B., Liu, R., Price, A. E., & Sharkey, J. R. 2011. Ethnically diverse older adults’ beliefs about staying mentally sharp. The International Journal of Ageing and Human Development, 73(1), 27–52.

Hamilton, S. L., Maslen, S., Watkins, R., Conigrave, K., Freeman, J., O’donnell, M., & Bower, C. 2020. “That thing in his head”: Aboriginal and non-Aboriginal Australian caregiver responses to neurodevelopmental disability diagnoses. Sociology of Health & Illness, 42(7), 1581–1596.

Hammerschlag, C. A. 2009. The Huichol offering: A shamanic healing journey. Journal of Religion and Health, 48(2), 246–258.

Haozous, E. A., Doorenbos, A. Z., & Stoner, S. 2016. Pain management experiences and the acceptability of cognitive behavioral strategies among American Indians and Alaska Natives. Journal of Transcultural Nursing, 27(3), 233–240. 10.1177/1043659614558454

Haozous, E. A., Knobf, M. T., & Brant, J. M. 2011. Understanding the cancer pain experience in American Indians of the Northern Plains. Psycho-Oncology, 20(4), 404–410. 10.1002/pon.1741

Hatala, A. R., Waldram, J. B., & Caal, T. 2015. Narrative structures of Maya mental disorders. Culture, Medicine, and Psychiatry, 39(3), 449–486. 10.1007/s11013-015-9436-9

Hunt, C., Michalak, A., Lefkimmiatis, C., Johnston, E., Macumber, L., Jocko, T., & Ouchterlony, D. 2018. Exploring concussion awareness in hockey with a First Nations community in Canada. Public Health Nursing, 35(3), 202–210. 10.1111/phn.12407

Keightley, M. L., King, G. E., Jang, S., White, R. J., Colantonio, A., Minore, J. B., & Longboat-White, C. H. 2011. Brain injury from a First Nations’ perspective: Teachings from elders and traditional healers. Canadian Journal of Occupational Therapy, 78(4), 237–245. 10.2182/cjot.2011.78.4.5

Laditka, S. B., Laditka, J. N., Liu, R., Price, A. E., Friedman, D. B., Wu, B., & Ivey, S. L. 2013. How do older people describe others with cognitive impairment? A multiethnic study in the United States. Ageing and Society, 33(3), 369–392. 10.1017/s0144686x11001255

Lanting, S., Crossley, M., Morgan, D., & Cammer, A. 2011. Aboriginal experiences of ageing and dementia in a context of sociocultural change: Qualitative analysis of key informant group interviews with Aboriginal seniors. Journal of Cross-Cultural Gerontology, 26(1), 103–117. 10.1007/s10823-010-9136-4

Loizaga-Velder, A., & Verres, R. 2014. Therapeutic effects of ritual ayahuasca use in the treatment of substance dependence—Qualitative results. Journal of Psychoactive Drugs, 46(1), 63–72. 10.1080/02791072.2013.873157

Mark, G., & Lyons, A. 2010. Maori healers’ views on wellbeing: The importance of mind, body, spirit, family and land. Social Science & Medicine, 70(11), 1756–1764. 10.1016/J.Socscimed.2010.02.001

McNamara, R. A., Willard, A. K., Norenzayan, A., & Henrich, J. 2019. Weighing outcome vs. intent across societies: How cultural models of mind shape moral reasoning. Cognition, 182, 95–108. 10.1016/j.cognition.2018.09.008

Mehl-Madrona, L. 2009. What traditional indigenous elders say about cross-cultural mental health training. Explore, 5(1), 20–29. 10.1016/J.Explore.2008.10.003

Pace, J. 2020. “Place-ing” dementia prevention and care in Nunatukavut, Labrador. Canadian Journal on Ageing, 39(2), 247–262. 10.1017/S0714980819000576

Taitimu, M., Read, J., & Mcintosh, T. 2018. Ngā whakāwhitinga (standing at the crossroads): How Māori understand what western psychiatry calls “schizophrenia.” Transcultural Psychiatry, 55(2), 153–177. 10.1177/1363461518757800

Torsch, V. L., & Ma, G. X. 2000. Cross-cultural comparison of health perceptions, concerns, and coping strategies among Asian and Pacific Islander American elders. Qualitative Health Research, 10(4), 471–489. 10.1177/104973200129118589

Webkamigad, S., Cote-meek, S., Pianosi, B., & Jacklin, K. 2020. Exploring the appropriateness of culturally safe dementia information with Indigenous people in an urban Northern Ontario community. Canadian Journal on Ageing, 39(2), 1–12. 10.1017/S0714980819000606

Whealin, J. M., Yoneda, A. C., Nelson, D., Hilmes, T. S., Kawasaki, M. M., & Yan, O. H. 2017. A culturally adapted family intervention for rural Pacific Island veterans with PTSD. Psychological Services, 14(3), 295–306. 10.1037/ser0000186

Wilson, J., Sabo, S., Chief, C., Clark, H., Yazzie, A., Nahee, J., Leischow, S., & Henderson, P. N. 2019. Diné (Navajo) healer perspectives on commercial tobacco use in ceremonial settings: An oral story project to promote smoke-free life. American Indian and Alaska Native Mental Health Research, 26(1), 63–78. 10.5820/Aian.2601.2019.63

Yurkovich, E. E., & Lattergrass, I. 2008. Defining health and unhealthiness: Perceptions held by Native American Indians with persistent mental illness. Mental Health, Religion & Culture, 11(5), 437–459. 10.1080/13674670701473751

Appendix 2

Papers in Primary Source (Harding et al., 2021)

Arkles, R., Jankelson, C., Radford, K., & Jackson Pulver, L. 2020. Family caregiving for older Aboriginal people in urban Australia: Disclosing worlds of meaning in the dementia experience. Dementia, 19(2), 397–415.

Armstrong, E., Coffin, J., Hersh, D., Katzenellenbogen, J., Thompson, S., Ciccone, N., & Mcallister, M. 2019. You felt like a prisoner in your own self, trapped”: The experiences of Aboriginal people with acquired communication disorders. Disability and Rehabilitation, 1–14.

BigFoot, D. S., & Schmidt, S. R. 2010. Honoring children, mending the circle: Cultural adaptation of trauma-focused cognitive-behavioral therapy for American Indian and Alaska Native children. Journal of Clinical Psychology, 66(8), 847–856. 10.1002/jclp.20707

Cabrera, L., Beattie, L., Dwosh, E., & Illes, J. 2015. Converging approaches to understanding early onset familial Alzheimer disease: A First Nation study. SAGE Open Medicine, 3(Journal Article), 2050312115621766–2050312115621766. 10.1177/2050312115621766

Carod, F., & Vázquez-Cabrera, C. 1996. A transcultural view of neurological and mental pathology in a Tzeltal Maya community of the Altos Chiapas [A transcultural view of neurological and mental pathology in a Tzeltal Maya community of the Altos Chiapas]. Revista De Neurologiá, 24(131), 848–854.

Carod-Artal, F., & Vázquez Cabrera, C. 2008. Tratamiento de las cefaleas entre los aborígenes de Tierra de Fuego. Comparación con otros estudios antropológicos [Treatment of headaches among the Aborigines of Tierra de Fuego. A comparison with other anthropological studies]. Revista de Neurología, 47(07), 374. 10.33588/rn.4707.2008481

Carod-Artal, F., & Vázquez-Cabrera, C. 2001. Antropología neurológica entre los indios Kamayurá del Alto Xingú [Neurological anthropology among the Kamayura Indians of the Alto Xingu]. Revista de Neurología, 32(7), 688–695.

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Schaffrick, M., Perreault, M.L., Harding, L. et al. Recruitment and Engagement of Indigenous Peoples in Brain-Related Health Research. Neuroethics 16, 19 (2023). https://doi.org/10.1007/s12152-023-09528-z

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