Nội dung được dịch bởi AI, chỉ mang tính chất tham khảo
Cách Tiếp Cận Tuyển Dụng và Tham Gia của Người bản địa trong Nghiên Cứu Y Tế Liên Quan đến Não
Tóm tắt
Để mô tả các phương pháp tuyển dụng cho nghiên cứu về não và tâm trí liên quan đến các dân tộc bản địa, chúng tôi đã thực hiện phân tích phụ của một nghiên cứu tổng quan của Harding et al. (2021). Các nhà đánh giá đã sàng lọc các nghiên cứu (n = 66) về phương pháp lấy mẫu, tuyển dụng và tham gia, các tuyên bố về vị trí, và chi tiết về việc phê duyệt đạo đức. Chúng tôi đã xác định được hai mươi chín (29) bài báo bằng tiếng Anh có liên quan đến phân tích. Trong số đó, 52% (n = 15/29) báo cáo một hỗn hợp các phương pháp lấy mẫu; 45% (n = 13/29) chứa các tuyên bố hoặc thông tin về vị trí của tác giả. Mặc dù, tổng thể, 24% (n = 7/29) của các nghiên cứu thiếu thông tin về các quy trình đạo đức, chúng tôi nhận thấy có sự cải thiện theo thời gian về việc báo cáo các phê duyệt và sử dụng các phương pháp tuyển dụng có sự tham gia của cộng đồng. Các nghiên cứu hiện tại về não bộ chứng tỏ các cách hợp tác với các cộng đồng bản địa đáp ứng các hướng dẫn đạo đức hiện có. Tuy nhiên, để hoàn toàn đáp ứng nhu cầu của các dân tộc bản địa, các nhà nghiên cứu có thể cần vượt qua các tiêu chuẩn đạo đức hiện tại. Các tuyên bố về vị trí đã mô tả chi tiết mối quan hệ của các nhóm nghiên cứu với các cộng đồng mà họ làm việc và đặt các phương pháp tuyển dụng vào ngữ cảnh. Chất lượng và ý nghĩa được cải thiện của nghiên cứu não với người bản địa và niềm tin vào quy trình nghiên cứu và sức khỏe cộng đồng sẽ được nâng cao khi các khoảng trống còn lại trong việc bảo vệ và báo cáo các phương pháp tuyển dụng người tham gia được lấp đầy.
Từ khóa
#Người bản địa #nghiên cứu não #sức khỏe cộng đồng #phương pháp tuyển dụng #đạo đức nghiên cứuTài liệu tham khảo
Gaudry, A.J.P. 2011. Insurgent research. Wicazo Sa Review 26 (1): 113–137. https://doi.org/10.5749/wicazosareview.26.1.0113.
Hayward, A., E. Sjoblom, S. Sinclair, and J. Cidro. 2021. A new era of Indigenous research: Community-based Indigenous research ethics protocols in Canada. Journal of Empirical Research on Human Research Ethics 16 (4): 403–417. https://doi.org/10.1177/15562646211023705.
MacDonald, N.E., R. Stanwick, and A. Lynk. 2014. Canada’s shameful history of nutrition research on residential school children: The need for strong medical ethics in Aboriginal health research. Paediatrics & Child Health 19 (2): 64–64. https://doi.org/10.1093/pch/19.2.64.
Marsden, N., L. Star, and J. Smylie. 2020. Nothing about us without us in writing: aligning the editorial policies of the Canadian Journal of Public Health with the inherent rights of Indigenous Peoples. Canadian Journal of Public Health 111 (6): 822–825. https://doi.org/10.17269/s41997-020-00452-w.
Hyett, S., S. Marjerrison, and C. Gabel. 2018. Improving health research among Indigenous peoples in Canada. CMAJ 190 (20): E616–E621. https://doi.org/10.1503/cmaj.171538.
Scanlon, J., L. Wofford, A. Fair, and D. Philippi. 2021. Predictors of participation in clinical research. Nursing Research 70 (4): 289–297. https://doi.org/10.1097/NNR.0000000000000513.
Dadich, A., L. Gordon Moore, & Eapen, V. (2019). What does it mean to conduct participatory research with Indigenous peoples? A lexical review. BMC Public Health, 19(1). https://doi.org/10.1186/s12889-019-7494-6
Guillemin, M., Gillam, L., Barnard, E., Stewart, P., Walker, H., & Rosenthal, D. (2016). “We’re checking them out”: Indigenous and non-Indigenous research participants’ accounts of deciding to be involved in research. International Journal for Equity in Health, 15(1). https://doi.org/10.1186/s12939-016-0301-4
Kovach, M. 2021. Indigenous methodologies: Characteristics, conversations, and contexts, 2nd ed. Toronto: University of Toronto Press.
Wilson, S. 2006. Research is ceremony: Indigenous research methods. Black Point, Nova Scotia: Fernwood Publishing.
Smith, L.T. 2021. Decolonizing methodologies: Research and Indigenous peoples, 3rd ed. London: Zed Books.
First Nations Information Governance Centre. 2020. The First Nations principles of OCAP. https://fnigc.ca/ocap-training/. Accessed 11 Aug 2023.
Government of Canada. 2018. Tri-council policy statement: Ethical conduct for research involving humans – TCPS 2 (2018). https://ethics.gc.ca/eng/policy-politique_tcps2-eptc2_2018.html. Accessed 11 Aug 2023.
Cowichan Tribes. 2021. Bringing ethics review home to Cowichan: Indigenizing ethics review in British Columbia, Canada. International Journal of Indigenous Health, 16(2). https://doi.org/10.32799/ijih.v16i2.33099
Ermine, W, Sinclair, R, & Jeffery, B. 2004. The ethics of research involving Indigenous peoples. Report of the Indigenous Peoples Health Research Centre to the Interagency Advisory Panel on Research Ethics. https://canadacommons-ca.eu1.proxy.openathens.net/artifacts/1220507/the-ethics-of-research-involving-indigenous-peoples/1773584/. Accessed 11 Aug 2023.
Harding, L. 2022. Bringing together Indigenous and Western approaches to brain wellness and mental health: not only the what but the way. University of British Columbia. [Master’s thesis, University of British Columbia]. UBC Theses and Dissertations. https://hdl.handle.net/2429/82635. Accessed 11 Aug 2023.
International Brain Initiative. 2020. International Brain Initiative: An innovative framework for coordinated global brain research efforts. Neuron 105 (2): 212–216. https://doi.org/10.1016/j.neuron.2020.01.002.
Perreault, M.L., M. King, C. Gabel, C.J. Mushquash, Y.D. Koninck, A. Lawson, et al. 2022. An Indigenous lens on priorities for the Canadian Brain Research Strategy. Canadian Journal of Neurological Sciences 50 (1): 96–98. https://doi.org/10.1017/cjn.2021.501.
Ngai, J. 2022. BRAIN 2.0: Transforming neuroscience. Cell 185 (1): 4–8. https://doi.org/10.1016/j.cell.2021.11.037.
Illes, J., and S.J. Bird. 2006. Neuroethics: A modern context for ethics in neuroscience. Trends in Neurosciences 29 (9): 511–517. https://doi.org/10.1016/j.tins.2006.07.002.
Harding, L., C.J. Marra, and J. Illes. 2021. Establishing a comprehensive search strategy for Indigenous health literature reviews. Systematic Reviews 10 (1): 115. https://doi.org/10.1186/s13643-021-01664-y.
US Agency for Healthcare Research and Quality. n.d. Participant recruitment for research. Digital Healthcare Research Archive. https://digital.ahrq.gov/participant-recruitment-research. Accessed 11 Aug 2023.
Holmes, A.G.D. 2020. Researcher positionality - A consideration of its influence and place in qualitative eesearch - A new researcher guide. Shanlax International Journal of Education. https://doi.org/10.34293/ education.v8i4.3232
Moffat, M. 2016. Exploring positionality in an Aboriginal research paradigm: a unique perspective. International Journal of Technology and Inclusive Education 5 (1): 750–755. https://doi.org/10.20533/ijtie.2047.0533.2016.0096.
Harding, L., Marra, C., Manohara, V., & Illes, J. 2021. Ways of knowing of the brain and mind: A scoping review of the literature about global Indigenous perspectives. Journal Of Neurology Research. https://doi.org/10.14740/jnr708
Secretariat of the Permanent Forum on Indigenous Issues. 2004. The concept of Indigenous peoples. United Nations. https://www.un.org/esa/socdev/unpfii/documents/workshop_data_background.doc. Accessed 11 Aug 2023.
Cabrera, L.Y., B.L. Beattie, E. Dwosh, and J. Illes. 2015. Converging approaches to understanding early onset familial Alzheimer disease: A First Nation study. SAGE Open Medicine. https://doi.org/10.1177/2050312115621766.
Erlingsson, C., and P. Brysiewicz. 2017. A hands-on guide to doing content analysis. African Journal of Emergency Medicine 7 (3): 93–99. https://doi.org/10.1016/j.afjem.2017.08.001.
Cawte, J. 1964. Australian ethnopsychiatry in the field: A sampling in North Kimberly. Medical Journal of Australia 1 (13): 467–472. https://doi.org/10.5694/j.1326-5377.1964.tb134273.x.
Dobkin de Rios, M. 1984. The vidente phenomenon in third world traditional healing: An Amazonian example. Medical Anthropology 8 (1): 60–70. https://doi.org/10.1080/01459740.1984.9965889.
Torsch, V.L., and G.X. Ma. 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. https://doi.org/10.1177/104973200129118589.
United Nations Department of Economic and Social Affairs: Indigenous Peoples. 2007. United Nations Declaration on the Rights of Indigenous Peoples. United Nations. https://www.un.org/development/desa/indigenouspeoples/declaration-on-the-rights-of-indigenous-peoples.html. Accessed 11 Aug 2023.
Hammerschlag, C.A. 2009. The Huichol offering: A shamanic healing journey. Journal of Religion and Health 48 (2): 246–258. https://doi.org/10.1007/s10943-008-9210-1.
Mark, G., and A. Lyons. 2010. Maori healers’ views on wellbeing: The importance of mind, body, spirit, family and land. Social Science & Medicine 70 (11): 1756–1764. https://doi.org/10.1016/J.Socscimed.2010.02.001.
Laditka, S.B., J.N. Laditka, R. Liu, A.E. Price, D.B. Friedman, B. Wu, and S.L. Ivey. 2013. How do older people describe others with cognitive impairment? A multiethnic study in the United States. Ageing and Society 33 (3): 369–392. https://doi.org/10.1017/s0144686x11001255.
McNamara, R.A., A.K. Willard, A. Norenzayan, and J. Henrich. 2019. Weighing outcome vs. intent across societies: How cultural models of mind shape moral reasoning. Cognition 182: 95–108. https://doi.org/10.1016/j.cognition.2018.09.008.
Armstrong, E., J. Coffin, D. Hersh, J.M. Katzenellenbogen, S.C. Thompson, N. Ciccone, L. Flicker, D. Woods, C. Hayward, C. Dowell, and M. McAllister. 2021. “You felt like a prisoner in your own self, trapped”: the experiences of Aboriginal people with acquired communication disorders. Disability and rehabilitation 43 (13): 1903–1916. https://doi.org/10.1080/09638288.2019.1686073.
Arkles, R., C. Jankelson, K. Radford, and L. Jackson Pulver. 2020. Family caregiving for older Aboriginal people in urban Australia: Disclosing worlds of meaning in the dementia experience. Dementia 19 (2): 397–415.
Cornect-Benoit, A., K. Pitawanakwat, Wiikwemkoong Unceded Territory Collaborating First Nation Community, J. Walker, D. Manitowabi, and K. Jacklin. 2020. Nurturing meaningful intergenerational social engagements to support healthy brain aging for Anishinaabe older adults. Canadian Journal on Ageing 39 (2): 263–283. https://doi.org/10.1017/S0714980819000527.
Canadian Institutes of Health Research. (2023). Strategy for Patient-Oriented Research. CIHR. https://cihr-irsc.gc.ca/e/41204.html. Accessed 11 Aug 2023.
Corbett, A., K. Francis, and Y. Chapman. 2006. The experience of whanau caring for members disabled from the effects of a cerebro-vascular accident. Contemporary Nurse 22 (2): 255–263. https://doi.org/10.5172/conu.2006.22.2.255.
Taitimu, M., J. Read, and T. Mcintosh. 2018. Ngā whakāwhitinga (standing at the crossroads): How Māori understand what western psychiatry calls “schizophrenia.” Transcultural Psychiatry 55 (2): 153–177. https://doi.org/10.1177/1363461518757800.
Keightley, M.L., G.E. King, S. Jang, R.J. White, A. Colantonio, J.B. Minore, and C.H. Longboat-white. 2011. Brain injury from a First Nations’ perspective: Teachings from elders and traditional healers. Canadian Journal of Occupational Therapy 78 (4): 237–245. https://doi.org/10.2182/cjot.2011.78.4.5.
Carr, J., J. Lalara, G. Lalara, G. O’hare, L. Massey, N. Kenny, K.E. Pope, A.R. Clough, A. Lowell, and R.N. Barker. 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. https://doi.org/10.1371/journal.pone.0212953.
Mehl-Madrona, L. 2009. What traditional indigenous elders say about cross-cultural mental health training. Explore 5 (1): 20–29. https://doi.org/10.1016/J.Explore.2008.10.003.
Kang, H. 2013. The prevention and handling of the missing data. Korean Journal of Anesthesiology 64 (5): 402–406. https://doi.org/10.4097/kjae.2013.64.5.402.
Schroter, S., R. Plowman, A. Hutchings, and A. Gonzalez. 2006. Reporting ethics committee approval and patient consent by study design in five general medical journals. Journal of Medical Ethics 32 (12): 718–723. https://doi.org/10.1136/jme.2005.015115.
Wu, Y., Howarth, M., Zhou, C., Hu, M., & Cong, W. 2019. Reporting of ethical approval and informed consent in clinical research published in leading nursing journals: A retrospective observational study. BMC Medical Ethics, 20(1). https://doi.org/10.1186/s12910-019-0431-5
Eijkholt, M., J.A. Anderson, and J. Illes. 2012. Picturing neuroscience research through a human rights lens: Imaging first episode schizophrenic treatment-naïve individuals. International Journal of Law and Psychiatry 35 (2): 146–152. https://doi.org/10.1016/j.ijlp.2011.12.003.
Anderson, J.A., M. Eijkholt, and J. Illes. 2013. Ethical reproducibility: Towards transparent reporting in biomedical research. Nature Methods 10 (9): 843–845. https://doi.org/10.1038/nmeth.2564.
Bain, L. E. 2017. Ethics approval: responsibilities of journal editors, authors and research ethics committees. Pan African Medical Journal, 28. https://doi.org/10.11604/pamj.2017.28.200.14170
Newson, A.J., and W. Lipworth. 2015. Why should ethics approval be required prior to publication of health promotion research? Health Promotion Journal of Australia 26 (3): 170–175. https://doi.org/10.1071/he15034.
Grenz, J. 2023. University ethics boards are not ready for Indigenous scholars. Nature 616: 221. https://doi.org/10.1038/d41586-023-00974-6.