Cultural adaptation of a shared decision making tool with Aboriginal women: A qualitative study

BMC Medical Informatics and Decision Making

Volumn 15, Issue 1, 2015, Pages

  Jull, Janet ^a   Giles, Audrey ^a   Lodge, Minwaashin ^b   Boyer, Yvonne ^b   Stacey, Dawn ^a  

^a UNIVERSITY OF OTTAWA   (Canada)

^b NONE   (Canada)

Author keywords

Aboriginal; Cultural adaptation; Equity; Health literacy; Indigenous; Shared decision making; Usability testing; Women

Indexed keywords

ADULT; AMERICAN INDIAN; DECISION MAKING; DECISION SUPPORT SYSTEM; ETHNOLOGY; FEMALE; HEALTH LITERACY; HUMAN; INUIT; MIDDLE AGED; QUALITATIVE RESEARCH; TRANSCULTURAL CARE; YOUNG ADULT;

ADULT; CULTURALLY COMPETENT CARE; DECISION MAKING; DECISION SUPPORT TECHNIQUES; FEMALE; HEALTH LITERACY; HUMANS; INDIANS, NORTH AMERICAN; INUITS; MIDDLE AGED; QUALITATIVE RESEARCH; YOUNG ADULT;

EID: 84924099632     PISSN: None     EISSN: 14726947     Source Type: Journal    
DOI: 10.1186/s12911-015-0129-7     Document Type: Article

References (51)

1. Browne AJ, Fiske J. First Nations women's encounters with mainstream health care services. West J Nurs Res. 2001;23(2):126-47.
2. Jull JE, Giles AR. Health equity, aboriginal peoples and occupational therapy. Can J Occup Ther. 2012;79:70-6.
3. Browne AJ. Discourses influencing nurses' perceptions of First Nations patients. Can J Nur Res. 2005;37(4):62-87.
4. Boyer Y. Discussion paper series in aboriginal health: legal issues. First Nations, Métis and Inuit Health Care: The Crown's Fiduciary Obligation, 2004. Retrieved from http://www.naho.ca/documents/naho/english/publications/DP-crowns-obligation.pdf.
5. Smith D, Edwards N, Varcoe C, Martens P, Davies B. Bringing safety and responsiveness into the foreground of care for pregnant and parenting Aboriginal people. Adv Nur Sci. 2006;29(2):E27-44.
6. Makoul G, Clayman ML. An integrative model of shared decision making in clinical encounters. Patient Educ Couns. 2006;60(3):301-12.
7. Hibbard J, Greene J. What the evidence shows about patient activation: better health outcomes and care experiences. Fewer Data on Costs Health Affairs. 2013;32(2):207-14. Retrieved from http://content.healthaffairs.org/content/32/2/207.abstract.
8. Kiesler DJ, Auerbach AM. Optimal matches of patient preferences for information, decision-making and interpersonal behavior: Evidence, models and interventions. Patient Educ Couns. 2006;61(3):319-41.
9. Weston WW. Informed and shared decision-making: the crux of patient centred care. Can Med Assoc J. 2001;165(4):438-40.
10. Jull J, Crispo J, Welch V, MacDonald H, Brascoupe S, Boyer Y, et al. Interventions for Indigenous Peoples making health decisions: a systematic review. Pimatisiwin. 2013;11(3):539-54. Retrieved from http://www.pimatisiwin.com/online/wpcontent/uploads/2014/02/16JullCrispo.pdf.
11. Légaré F, Moumjid-Ferdjaoui N, Drolet R, Stacey D, Härter M, Bastian H, et al. Core competencies for shared decision-making training programs: insights from an international, interdisciplinary working group. J Cont Educ Health 2013. 2013;33(4):267-73.
12. Jull J, Minwaashin Lodge, Stacey D, Boyer Y, Giles A. Health decision-making with Aboriginal women: A qualitative study identifying needs, supports and barriers to shared decision-Making. www.csih.org/wp-content/uploads/2014/10/abstract-book-nov.pdf (2014). Accessed 7 November 2014.
13. Elwyn G, Edwards A, Kinnersley P, Grol R. Shared decision making and the concept of equipoise: the competences of involving patients in healthcare choices. Brit J Gen Pract. 2000;50(460):892-9.
14. Stacey D, Légaré F, Col NF, Bennett CL, Barry MJ, Eden KB, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database of Syst Rev, Issue 1, 2014. Art. No.: CD001431. doi:10.1002/14651858. CD001431.pub4
15. O'Connor AM, Stacey D, Légaré F. Coaching to support patients in making decisions. BMJ. 2008;336(7638):228-9. Retrieved from http://www.ncbi.nlm. nih.gov/pmc/articles/PMC2223006/.
16. Stacey D, Kryworuchko J, Bennett C, Murray MA, Mullan S, Légaré F. Decision coaching to help prepare patients for making health decisions: a systematic review of decision coaching in trials of patient decision aids. Med Decis Making. 2012;32(3):E22-33.
17. World Health Organization: Health Promotion. Track 2. Health literacy and health behavior; 2014. Retrieved from http://www.who.int/healthpromotion/conferences/7gchp/track2/en/.
18. Institute of Medicine. Health Literacy: a prescription to end confusion. Washington DC: National Academics Press; 2004. Retrieved from http://books.nap.edu/openbook.php?record-id=10883.
19. Rootman I, Gordon-El-Bihbety D. A vision for a health literate Canada: report of the expert panel on health literacy. Canadian Public Health Agency; 2008. Retrieved from www.cpha.ca/uploads/portals/h-l/report-e.pdf
20. Public Health Agency of Canada. Health Literacy; 2014. Retrieved from http://www.phacaspc.gc.ca/cd-mc/hl-ls/index-eng.php.
21. Battiste M. Introduction: unfolding the lessons of colonization. In: Battiste M, editor. Reclaiming indigenous voice and vision. Vancouver: University of British Columbia Press; 2000. p. xvi-xxix.
22. Smylie J. Achieving Strength Through Numbers: First Nations, Inuit and Métis Health Information. National Collaborating Centre for Aboriginal Health, Publications; 2010. Retrieved from http://www.nccah-ccnsa.ca/en/publications.aspx?sortcode=2.8.10&publication=1.
23. Jull J, Stacey D, Giles A, Boyer Y. Minwaashin Lodge the Aboriginal Women's Support Centre: Shared-decision making and health for First Nations, Métis and Inuit women: a study protocol. BMC Med Inform Decis Mak. 2012;12:146. doi:10.1186/1472-6947-12-146. Retrieved from http://www.biomedcentral.com/1472-6947/12/146.
24. Beaton DE, Bomardier C, Guillemin F, Ferraz MB. Guidelines for the process of cross-cultural adaptation of self-report measures. Spine. 2000;25(24):3186-91.
25. O'Connor AM, Stacey D, Jacobsen MJ. Ottawa Decision Support Tutorial: Improving Practitioners' Decision Support Skills Ottawa Hospital Research Institute: Patient Decision Aids; 2011. Retrieved from https://decisionaid.ohri. ca/ODST/pdfs/ODST.pdf.
26. Murray MA, Miller T, Fiset V, O'Connor AM, Jacobsen MJ. Decision support: helping patients and families to find a balance at the end of life. Int J Palliat Nurs. 2004;10(6):270-7.
27. O'Connor AM, Tugwell P, Wells G, Elmslie T, Jolly E, Hollingworth G. A decision aid for women considering hormone therapy after menopause: Decision support framework and evaluation. Patient Educ Couns. 1998;33(3):267-79.
28. McEwan C. Postcolonialism and development. 270 Madison Avenue, New York, NY 10016: Routledge; 2009.
29. Young JC. Postcolonialism: an historical introduction. Oxford: Blackwell; 2001.
30. Anderson JM. Towards a post-colonial feminist methodology in nursing research exploring the convergence of post-colonial and feminist scholarship. Nurse Res. 2002;9(3):7-20.
31. Reimer-Kirkham S, Anderson J. Postcolonial nursing scholarship: from epistemology to method. Adv Nurs Sci. 2002;25(1):1-17.
32. Thorne S, Riemer Kirkham S, O'Flynn-Magee K. The analytic challenge in interpretive description. Int J Qual Method 2004, 3 (1). Retrieved from http://www.ualberta.ca/~iiqm/backissues/3-1/pdf/thorneetal.pdf.
33. First Nations Centre. OCAP: ownership, control, access and possession. Sanctioned by the first nations information governance committee, assembly of first nations. Ottawa: National Aboriginal Health Organization; 2007.
34. Panel on Research Ethics. Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS). http://pre.ethics.gc.ca/eng/index webcite.
35. O'Connor AM, Stacey D, Jacobson MJ. The Ottawa Personal Decision Guide (OPDG) 2004. Retrieved from http://decisionaid.ohri.ca/decguide.html.
36. Arimori N. Randomized controlled trial of decision aids for women considering prenatal testing: the effect of the Ottawa personal decision guide on decisional conflict. Jpn J Nurs Sci. 2006;3(2):119-30.
37. Solberg LI, Asche SE, Sepucha K, Thygeson NM, Madden JE, Morrissey L, et al. Informed choice assistance for women making uterine fibroid treatment decisions: A practical clinical trial. Med Decis Making. 2010;30:444-52.
38. Cote-Arsenault D, Morrison-Beedy D. Practical advice for planning and conducting focus groups. Nurs Res. 1999;48:280-3.
39. Van Den Haak MJ, De Jong MDT, Schellens PJ. Retrospective vs.concurrent think-aloud protocols: testing the usability of an online library catalogue. Behav Inf Technol. 2003;22:339-51.
40. Robinson, DT. Role Playing. In MS Lewis-Beck, MS Bryman & TF Liao (Eds.), The SAGE Encyclopedia of Social Science Research Methods. Oaks, California, United States of America: SAGE Publications. pp. 977-978.
41. Skaner Y, Backlund L, Montgomery H, Bring J, Strender L. General practitioners' reasoning when considering the diagnosis heart failure: a think aloud study. BMC Fam Pract. 2005;6:4.
42. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77-101. Retrieved from eprints. uwe.ac.uk/11735/2/thematic-analysis-revised-final.pdf.
43. Clarke J. How to peer review a qualitative manuscript. In: Godlee FJT, editor. Peer review in health sciences. 2nd ed. London: BMJ Books; 2003. p. 219-35.
44. Nutbeam D. Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. Health Promot Int. 2000;15:259-67. Retrieved from http://heapro. oxfordjournals.org/content/15/3/259.full.
45. Smylie J, Wiliams L, Cooper N. Culture-based Literacy and Aboriginal Health. Can J Public Health. 2006;97:S21-5.
46. Joseph-Williams N, Elwyn G, Edwards A. Knowledge is not power for patients: A systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient Educ Couns. 2014;94(2014):291-309.
47. Légaré F, Ratte S, Stacey D, Kryworuchko J, Gravel K, Graham ID, Turcotte S. Interventions for improving the adoption of shared decision making by healthcare professionals. Cochrane Database of Syst Rev, Issue 5, 2010. Art. No. CD006732. doi:10.1002/14651858. CD006732.pub2.
48. Politi MC, Dizon DS, Frosch DL, Kuzemchak MD, Stigglebout AM. Importance of clarifying patients' desired role in shared decision making to match their level of engagement with their preferences. BMJ. 2013;2:347. doi:10.1136/bmj.f7066.
49. Doull M, O'Connor A, Jacobsen MJ, Robinson V, Cook L, Nyami-Kisia C, et al. Investigating the decision making needs of HIV-positive women in Africa using the Ottawa Decision-Support Framework: knowledge gaps and opportunities for intervention. Patient Educ Couns. 2006;63:279-91.
50. George NP. The rainbow/holistic approach to aboriginal literacy. Can J Native Educ. 2003;1:29-40.
51. Willis G, Zahnid E. Questionnaire designs from a cross-cultural perspective: an empirical investigation of Koreans and non-Koreans. J Health Care Poor U. 2007;18(Suppl4):197-217.