ABSTRACT
The history of health research in Inuit communities in Canada recounts unethical and colonizing research practices. Recent decades have witnessed profound changes that have advanced ethical and community-driven research, yet much work remains. Inuit have called for research reform in Inuit Nunangat, most recently creating the National Inuit Strategy on Research (NISR) as a framework to support this work. The present study details the process undertaken to create a research program guided by the NISR to address food security, nutrition, and climate change in Inuit Nunangat. Four main elements were identified as critical to supporting the development of a meaningful and authentic community-led program of research: developing Inuit-identified research questions that are relevant and important to Inuit communities; identifying Inuit expertise to answer these questions; re-envisioning and innovating research methodologies that are meaningful to Inuit and reflect Inuit knowledge and societal values; and identifying approaches to mobilizing knowledge that can be applied to support food security and climate change adaptation. We also identify considerations for funding agencies to support the meaningful development of Inuit-led research proposals, including aligning funding with community priorities, reconsidering who the researchers are, and investing in community infrastructure. Our critical reflection on the research program development process provides insight into community-led research that can support Inuit self-determination in research, enhance local ethical conduct of research, privilege Inuit knowledge systems, and align Inuit-identified research priorities with research funding opportunities in health research. While we focus on Inuit-led research in Nunavut, Canada, these insights may be of interest more broadly to Indigenous health research.
Subject(s)
Climate Change , Inuit , Canada , Food Security , Humans , NunavutABSTRACT
Background: Nunavut, part of Inuit Nunangat, is a geographically vast territory in northern Canada, with a population of over 38,000 people. Most (85%) of the population identify as Inuit. Nunavut has experienced a significant rise in heterosexual infectious syphilis cases since 2012. Management of communicable diseases, including syphilis, is challenging due to high staff turnover and long delays in specimen transport times. Social determinants of health are also an important contributor. The aim of this study is to describe the epidemiology and program elements for infectious syphilis from 2012-2020 and to highlight beneficial interventions. Methods: Syphilis is a notifiable disease in Nunavut with all cases reported to the Territorial Department of Health. Cases were staged by a medical consultant. Data were analyzed and released in public reports as part of the public health program. Results: From 2012 to 2020, 655 infectious syphilis cases were reported, with 53% of reported cases among females. Infection rates were highest in 20 to 39-year-olds. There was significant variability in reported cases over this time period by geographic region, with the majority of infectious cases reported from the Kivalliq region. Despite 48 reported cases in pregnancy, no confirmed congenital syphilis cases were identified. Program staff identified strengths of the response as well as ongoing needs, such as plain language resources available in multiple languages. Conclusion: Despite the logistical challenges with syphilis management in the territory, the overall outcomes have been positive, with no confirmed congenital cases identified. We attribute this to a coordinated effort by multiple partners including key actions by public health nurses and community health representatives.
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.
