Chronic kidney disease among indigenous populations: Considerations for effective and ethical research

Journal of Nephrology

Volumn 22, Issue 5, 2009, Pages 571-579

  Kolewaski, Carrie D ^a   Yeates, Karen ^a  

^a QUEEN S UNIVERSITY   (Canada)

Author keywords

Indigenous; Research ethics; Research knowledge

Indexed keywords

CHRONIC KIDNEY DISEASE; CULTURAL FACTOR; HEMODIALYSIS; HUMAN; INDIGENOUS PEOPLE; KIDNEY TRANSPLANTATION; KNOWLEDGE; MEDICAL RESEARCH; METHODOLOGY; QUALITY OF LIFE; RESEARCH ETHICS; REVIEW;

AUSTRALIA; BIOMEDICAL RESEARCH; CHRONIC DISEASE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; KIDNEY DISEASES; NEW ZEALAND; NORTH AMERICA; POPULATION GROUPS;

EID: 70649112335     PISSN: 11218428     EISSN: 17246059     Source Type: Journal    
DOI: None     Document Type: Review

References (57)

1. Narva AS. The spectrum of kidney disease in American Indians. Kidney Int Suppl. 2003;63:S3-S7.
2. McDonald SP, Russ GR. Burden of end-stage renal disease among Indigenous peoples in Australia and New Zealand. Kidney Int Suppl. 2003;63:S123-S127.
3. Bramley D, Hebert P, Jackson R, Chassin M. Indigenous disparities in disease-specific mortality, a cross-country comparison. NZ Med J. 2004;117:U1215. Available at: http://www.nzma.org.nz/jpurnal/117-1207/ 1215 Accessed July 27, 2009.
4. Dyck RF. Mechanisms of renal disease in Indigenous populations: influences at work in Canadian Indigenous peoples. Nephrology. 2001;6:3-7.
5. Canadian Institute of Health Research. CIHR guidelines for health research involving Aboriginal People. Ottawa, Canada: Canadian Institute of Health Research; 2007.
6. Interagency Secretariat on Research Ethics. Tri-Council Policy Statement: ethical conduct for research involving humans. Canada: Public Works and Government Services Canada; 2005. Available at: http://www.pre.ethics.gc.ca/english/pdf/TCPS%20October%202005_E.pdf. Accessed February 14, 2009.
7. National Health and Medical Research Council. Values and ethics: guidelines for ethical conduct in Aboriginal and Torres Strait Islander health research. 148th session, June 5, 2003. Available at: http://www.nhmrc.gov.au/publications/reports/ess148.htm. Accessed February 18, 2008.
8. Alaska Native Science Commission. Bringing together research and science in partnership with the native community. Available at: http://www.nativescience.org/. Accessed February 15, 2009.
9. Brant-Casstellano M. Ethics of Aboriginal research. Journal of Aboriginal Health. 2004;103:98-114.
10. Eckermann AK, Dowd T, Chong E, Nixon L, Gray R, Johnson S. Binan Goonj: bridging cultures in Aboriginal health. 2nd ed. Marrickville, Australia: Elsevier Australia; 2006.
11. Throne S. Health belief systems in perspective. J Adv Nurs. 1993;18:1931-1941.
12. Christie M. The Aboriginal worldview: a white person's ideas. The Aboriginal Child at School. 1984;12:3-7.
13. Patton MQ. Qualitative research & evaluation methods. 3rd ed. Thousand Oaks, USA: Sage Publications; 2002.
14. Fletcher C. Community-based participatory research relationships with Aboriginal communities in Canada. Pimatisiwin: A Journal of Aboriginal and Indigenous Community Health. 2003;1:27-62.
15. Buetow, SA. New Zealand Maori quality improvement in health care: lessons from an ideal type. Int J Qual Health Care. 2004;16:417-422.
16. Durie M. Understanding health and illness: research at the interface between science and indigenous knowledge. Int J Epidemiol. 2004;33:1138-1143.
17. Dei G. Sustainable development in the African context: revisiting some theoretical and methodological issues. African Development. 1993;18:97-110.
18. Ortiz LM. Towards authentic participatory research in health: a critical review. Pimatisiwin: A Journal of Aboriginal and Indigenous Community Health. 2003;1:1-26.
19. Viergever M. Indigenous knowledge: an interpretation of views from indigenous peoples. In: Semali LM, Kincheloe JL, eds. What is Indigenous knowledge? Voices from the Academy. New York: Palmer Press; 1999:333-343.
20. Hampden-Turner C, Trompenaars A. Building cross-cultural competence: how to create wealth from conflicting values. New Haven, CT: Yale University Press; 2000.
21. Ellerby JH, McKenzie J, McKay S, Gariepy GJ, Kaufert JM. Bioethics for clinicians: Aboriginal cultures. CMAJ. 2000;163:845-850.
22. Cochran PAL, Marshall CA, Garcia-Dowing C. et al. Indigenous ways of knowing: implications for participatory research and community. Health Policy and Ethics. 2008;98:22-27.
23. Edwards K, Lund C, Gibson N. Ethical validity: expecting the unexpected in community-based research. Pimatisiwin: A Journal of Aboriginal and Indigenous Community Health. 6;2008:17-30.
24. Freeman, WL, Romero F. Community consultation to evaluate group risk. In: Bankert EA, Arndur RJ, eds. Institutional review board: management and function. Boston, USA: Jones and Bartless Publishers; 2002.
25. Kundtson P, Suzuki D. Wisdom of the elders. Toronto, Canada: Stoddart; 1992:63-65.
26. Glass K, Kaufert J. Research ethics review and Aboriginal community values: can the two be reconciled? Journal of Empirical Research on Human Research Ethics. 2007;2:25-40.
27. Nickels S, Shirley J, Laidler G, eds. Negotiating research relationships with Inuit communities: a guide for researchers. Ottawa and Iqualuit, Canada: Inuit Tapiriit Kanatami and Nunavut Research Institute; 2007.
28. Canadian Medical Association. Bridging the gap: promoting health and healing for Aboriginal people in Canada. Ottawa, Canada: Canadian Medical Association;1994.
29. Hurst S, Nader P. Building community involvement in crosscultural Indigenous health programs. Int J Qual Health Care. 2006;18:294-298.
30. Gruba EG, Lincoln YS. Do inquiry paradigms imply inquiry methodologies? In Fetterman D, ed. Qualitative approaches to evaluation in education: the silent scientific revolution. New York: Praeger; 1988:89-115.
31. Creswell JW, ed. Research design: qualitative, quantitative and mixed method approaches. Thousand Oaks, USA: Sage Publications; 2009.
32. Israel BA, Schulz AJ, Parker EA, Becker AB. Review of community-based research: assessing partnership approaches to improve public health. Annu Rev Public Health. 1998;19:173-202.
33. Macaulay A, Commanada L, Freeman WL, et al. Responsible research with communities: participatory research in primary care. BMJ. 1999;319:774-778.
34. Rains JW, Wiles R. Participatory action research for community health promotion. Public Health Nurs. 1995;12:256-261.
35. Fletcher F, McKennitt D, Baydala L. Community capacity building: an Aboriginal exploratory case study. Pimatisiwin: A Journal of Aboriginal and Indigenous Community Health. 2008;5:9-32.
36. Christopher S, Watts V, McCormick A, Young S. Building and maintaining trust in a community-based participatory research partnership. Am J Public Health. 2008;98:1398-1406.
37. Found WC. Evaluating participatory research supported by the International Development Research Center. Knowledge and Policy. 1997;10:109-122.
38. National Health and Medical Research Council. Keeping research on track: a guide for Aboriginal and Torres Strait Islander peoples about health research ethics. 2006. Available at: http://www.nhmrc.gov.au/ publications/synopses/_files/e65.pdf. Accessed May 14, 2009.
39. Green LW, George MA, Daniel M, et al. Study of participatory research in health promotion: review and recommendations for the development of participatory research in health promotion in Canada. Vancouver, Canada: University of British Columbia, The Royal Society of Canada; 1995.
40. Henderson R, Simmons DS, Bourke L, Muir J. Development of guidelines for non-Indigenous people undertaking research among the Indigenous population of north-east Victoria. Med J Aust. 2002;176:482-485.
41. Public Health Agency of Canada. Community Capacity Building Tool. Available at: http://www.phac-aspc.gc.ca/canada/regions/ab-nwt-tno/ downloads-eng.php. Accessed May 11, 2009.
42. Maclellan-Wright MD, Anderson S, Barber H, et al. The development of measures of community capacity for community based-funding programs in Canada. Health Promotion International. 2007;22:299-306.
43. Cass A, Cunningham J, Snelling P, Wang Z, Hoy W. Exploring the pathways leading from disadvantage to end-stage renal disease for Indigenous Australians. Soc Sci Med. 2004;58:767-785.
44. Bennett E, Manderson L, Kelly B, Hardie I. Cultural factors in dialysis and renal transplantation among Aborigines and Torres Strait Islanders in North Queensland. Australian J Public Health. 1995;19:610-615.
45. Devitt J, McMaster A. Living on medicine: a cultural study of end-stage renal disease among Aboriginal People. Alice Spring, Australia: IAD Press; 1998.
46. Salvalaggio G, Kelly L, Minore B. Perspective on health: experiences of First Nations dialysis patients relocated from remote communities for treatment. Can J Rural Med. 2003;8:19-24.
47. Wilson R, Krefting LH, Stufcliffe P, VanBussel L. Native Canadians relocating for renal dialysis; psychological and cultural issues. Can Fam Physician. 1994;40:1934-1941.
48. Kolewaski CD, Yeates KY, King-VanVlack C, Paterson M. Relocation to an urban center for hemodialysis by Cree from the Muskgowuk Territory: the impact upon illness experience and perceived quality of life [abstract]. JASN. 18;2007:737A.
49. Cass A, Cunningham J, Snelling P, Wang Z, Hoy W. Renal transplantation for Indigenous Australians: identifying the barriers to equitable access. Ethnic Health 2003; 8:111-119.
50. Tonelli M, Hemmelgarn B, Manns BJ, et al. Death and renal transplantation among Aboriginal people undergoing dialysis. CMAJ. 2004;17:577-582.
51. McDonald SP, Russ GR. Current incidence, treatment patterns and outcome of end-stage renal disease among indigenous groups in Australia and New Zealand. Nephrology. 2003;8:42-48.
52. Cass A, Lowell A, Christie M, et al. Sharing the true stories: improving communication between Aboriginal patients and healthcare workers. Med J Aust. 2002;176:466-470.
53. Devitt J, Cass A, Cunningham J, Preece C, Anderson K, Snelling P. Study protocol - Improving Access to Kidney Transplants (IMPAKT): a detailed account of a qualitative study investigating barriers to transplant for Australian Indigenous people with end-stage kidney disease. BMC Health Services Research. 2008;8:31.Available at: http://www.biomedcentral.com/ 1472-6963/8/31/. Accessed May 14, 2009.
54. Tonelli M, Hemmelgarn B, Gill JS, et al; Alberta Kidney Disease Network. Wait-listing for kidney transplantation among Aboriginal hemodialysis patients. Am J Kidney Dis. 2005;46:1117-1123.
55. Cunningham J, Cass A, Anderson K, et al. Australian nephrologists' attitudes to living kidney donation. Nephrol Dial Transplant. 2006;21:1178-1183.
56. Cass A, Cunningham J, Anderson K, et al. Decision making about suitability for kidney transplantation: results of a national survey of Australian nephrologists. Nephrology. 2007;12:299-304.
57. Anderson K, Cass A, Cunningham J, et al. Psychosocial criteria in Australian practice guidelines for determining patient suitability for kidney transplantation. Soc Sci Med. 2007;12:299-304.