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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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Little is known about shared decision-making (SDM) with Métis, First Nations and Inuit women ("Aboriginal women"). SDM is a collaborative process that engages health care professional(s) and the client in making health decisions and is fundamental for informed consent and patient-centred care. The objective of this study is to explore Aboriginal women's health and social decision-making needs and to engage Aboriginal women in culturally adapting an SDM approach.Methods: Using participatory research principles and guided by a postcolonial theoretical lens, the proposed mixed methods research will involve three phases. Phase I is an international systematic review of the effectiveness of interventions for Aboriginal peoples' health decision-making. Developed following dialogue with key stakeholders, proposed methods are guided by the Cochrane handbook and include a comprehensive search, screening by two independent researchers, and synthesis of findings. Phases II and III will be conducted in collaboration with Minwaashin Lodge and engage an urban Aboriginal community of women in an interpretive descriptive qualitative study. In Phase II, 10 to 13 Aboriginal women will be interviewed to explore their health/social decision-making experiences. The interview guide is based on the Ottawa Decision Support Framework and previous decisional needs assessments, and as appropriate may be adapted to findings from the systematic review. Digitally-recorded interviews will be transcribed verbatim and analyzed inductively to identify participant decision-making approaches and needs when making health/social decisions. In Phase III, there will be cultural adaptation of an SDM facilitation tool, the Ottawa Personal Decision Guide, by two focus groups consisting of five to seven Aboriginal women. The culturally adapted guide will undergo usability testing through individual interviews with five to six women who are about to make a health/social decision. Focus groups and individual interviews will be digitally-recorded, transcribed verbatim, and analyzed inductively to identify the adaptation required and usability of the adapted decision guide.Discussion: Findings from this research will produce a culturally sensitive intervention to facilitate SDM within a population of urban Aboriginal women, which can subsequently be evaluated to determine impacts on narrowing health/social decision-making inequities. [ABSTRACT FROM AUTHOR]