NDLI: Experiences of Inuit in Canada who travel from remote settings for cancer care and impacts on decision making

Content Provider	Springer Nature : BioMed Central
Author	Jull, Janet Sheppard, Amanda J. Hizaka, Alex Barton, Gwen Doering, Paula Dorschner, Danielle Edgecombe, Nancy Ellis, Megan Graham, Ian D. Habash, Mara Jodouin, Gabrielle Kilabuk, Lynn Koonoo, Theresa Roberts, Carolyn
Abstract	Background Inuit experience the highest cancer mortality rates from lung cancer in the world with increasing rates of other cancers in addition to other significant health burdens. Inuit who live in remote areas must often travel thousands of kilometers to large urban centres in southern Canada and negotiate complex and sometimes unwelcoming health care systems. There is an urgent need to improve Inuit access to and use of health care. Our study objective was to understand the experiences of Inuit in Canada who travel from a remote to an urban setting for cancer care, and the impacts on their opportunities to participate in decisions during their journey to receive cancer care. Methods We are an interdisciplinary team of Steering Committee and researcher partners (“the team”) from Inuit-led and/or -specific organizations that span Nunavut and the Ontario cancer health systems. Guided by Inuit societal values, we used an integrated knowledge translation (KT) approach with qualitative methods. We conducted semi-structured interviews with Inuit participants and used process mapping and thematic analysis. Results We mapped the journey to receive cancer care and related the findings of client (n = 8) and medical escort (n = 6) (“participant”) interviews in four themes: 1) It is hard to take part in decisions about getting health care; 2) No one explains the decisions you will need to make; 3) There is a duty to make decisions that support family and community; 4) The lack of knowledge impacts opportunities to engage in decision making. Participants described themselves as directed, with little or no support, and seeking opportunities to collaborate with others on the journey to receive cancer care. Conclusions We describe the journey to receive cancer care as a “decision chain” which can be described as a series of events that lead to receiving cancer care. We identify points in the decision chain that could better prepare Inuit to participate in decisions related to their cancer care. We propose that there are opportunities to build further health care system capacity to support Inuit and enable their participation in decisions related to their cancer care while upholding and incorporating Inuit knowledge.
Related Links	https://bmchealthservres.biomedcentral.com/counter/pdf/10.1186/s12913-021-06303-9.pdf
Ending Page	11
Page Count	11
Starting Page	1
File Format	HTM / HTML
ISSN	14726963
DOI	10.1186/s12913-021-06303-9
Journal	BMC Health Services Research
Issue Number	1
Volume Number	21
Language	English
Publisher	BioMed Central
Publisher Date	2021-04-13
Access Restriction	Open
Subject Keyword	Public Health Health Administration Health Informatics Nursing Research Shared decision making Cancer care Rural and remote Urban Inuit Indigenous Research Co-production Ethics Engagement Integrated knowledge translation
Content Type	Text
Resource Type	Article
Subject	Health Policy

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1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
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9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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