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Régions: Inuvialuit Settlement Region, Gwich'in Settlement Area

étiquettes: health, participatory research, cancer, Inuvialuit Settlement Region, Culturally Safe Care

Objectif(s): To implement the Inuit Cancer Resources to enable nurses, Community Health Representatives (CHRs), and other health service providers to deliver culturally safe cancer care and improve the quality of healthcare delivery and quality of life for Inuit cancer survivors and their families.

Description du projet: This licence has been issued for the scientific research application No.5504. The purpose of this study is to implement the Inuit Cancer Resources to enable nurses, Community Health Representatives (CHRs), and other health service providers to deliver culturally safe cancer care and improve the quality of healthcare delivery and quality of life for Inuit cancer survivors and their families. NOTE: All research will be conducted in strict accordance with the principles set by Inuit Tapiriit Kanatami. This research is a participatory intervention study that uses a mixed methods approach. It will be guided by Inuvialuit societal values rooted in traditional Inuvialuit knowledge, cultural identity, and collective purpose and belonging, and are central to the beliefs and values governing health and wellness for Inuit in Canada. While difficult to define or summarize —as it has, until very recently, only been passed through oral tradition and language— Inuvialuit culture is shaped by their collective past and intimately related to their long history of living with and caring for their land. According to the Inuvialuit Regional Corporation (IRC), Inuvialuit value patience, kindness, curiosity, resourcefulness, and environmental knowledge. Although Inuvialuit have demonstrated resilience in the face of colonization and assimilation of Inuit, decades of such policies have interrupted their traditional ways of learning and sharing, resulting in a systematic erasure of Inuit societal values and the Inuvialuktun language. Furthermore, government systems and institutions (e.g., residential schools, tuberculosis hospitals) actively opposed Inuit worldviews and, subsequently, disregarded or entirely ignored their beliefs and values. Through our collaborative partnership, we will foster an atmosphere of trust and cultural safety that encourages Elders to share their knowledge. Indigenous culture, beliefs, traditional knowledge, and worldviews will be integrated into our research approach, including oral teachings, the Inuvialuktun language, and time on the land. Implementation will be tailored to the unique cultural, spiritual, and community needs of each community and focus on creating and ethical safe space where Inuit societal values are uplifted and prioritized throughout our partnership. Implementation will occur in two communities in the Inuvialuit Settlement Region (ISR) — a regional community (Inuvik) in Phase One and a rural community (Tuktoyaktuk) in Phase Two. Phase 1 We will implement the Inuit Cancer Resources and evaluate the barriers and facilitators to the implementation in Inuvik (regional community) with a Community Project Liaison (CPL) hired to assist the research team. Data collection in this phase will involve two focus groups that aim to explore barriers, facilitators, community strengths, and strategies for implementing the Inuit Cancer Resources. The focus group discussion guides will be structured around factors that may prevent or enable improvements in healthcare practices; be consistent with Inuvialuit values; and acknowledge Inuit beliefs, values, and worldviews towards cancer. In these discussions, we will facilitate an atmosphere of trust, and support ethical safe spaces for community members and Elders to share their knowledge so we can understand the requirements for tailoring the implementation strategy to the community’s strengths. Following the implementation of the Inuit Cancer Resources in the first community, the CPL and research team will keep field notes to capture the fidelity, dose, reach, adaptations, and resources and costs associated with implementation. To assess contextual factors impacting implementation, we will conduct semi-structured individual interviews to explore how nurses, community health representatives (CHRs), other healthcare providers and community members used the Inuit Cancer Resources, and their perceptions of any unanticipated consequences. Phase 2 Data collection in this phase will involve two focus groups. These focus groups will include health service providers, community leaders, Inuit cancer survivors, and families. We will revise the focus group guides developed for Phase One as necessary, aiming to explore barriers, facilitators, and community strengths to understand how to further tailor the implementation strategy to each community’s strengths and context. Throughout the 6-month intervention period, the research team will conduct up to two visits to collect structured observational data on the implementation process. Data analysis (both phases) All focus group discussions and interviews will be audiotaped, transcribed, de-identified, and entered into QSR-NVIVO 12 qualitative software, to facilitate data management and analysis. We will conduct an inductive content analysis for themes related to each outcome being evaluated. Content analysis will involve an iterative process of data reduction, data display, and verifying descriptive codes and themes. The research team will be involved in all stages of data analysis and regular group meetings will be held to facilitate accurate interpretation of the data and reflection of community beliefs. All aspects of the process log, including structured observations, field notes, and individual interviews, will be narratively described and their frequencies and percentages will be calculated. To determine the cost of the implementation strategy, we will use a micro-costing technique by identifying, measuring, and valuing resources used. Total costs will be categorized into i) Operating costs (production of implementation materials); ii) healthcare provider participation (based on time spent and NTHSSA mean hourly wages for health professionals); and iii) miscellaneous/incidentals. We will multiply the quantity of each type of resource consumed by unit costs (the value of those resources) to obtain total component-specific costs and overall costs for the implementation. Total and component-specific cost data will be presented as mean (standard deviation) and median (interquartile range). The total cost of the implementation will be further categorized as fixed (do not vary with increase in program coverage) and variable (changes with the number of participants in the program). We will estimate the marginal cost of increasing program coverage by one participant and assess whether the marginal costs would be reduced if the program coverage is increased. Finally, we will estimate the point of productive efficiency with respect to program coverage, i.e., coverage where the total cost per patient is the lowest possible. As collaborative research partners, Pauktuutit and the Advisory Group will advise on each stage of the research process, including determining the communities invited to participate (Inuvik and Tuktoyaktuk), developing the implementation strategy, analyzing results, and revising the strategy for scaling up implementation throughout Inuit Nunangat. Pauktuutit and the Advisory Group will be full members of the research team; together with the researchers (nominated PI and co-I’s), they will hereafter be referred to as the “research team.” Pre-Study activities. Pending ever-changing travel restrictions and feedback from our community partners, the primary investigator (WG) and two members from the Pauktuutit team (Chelsea Giesel and Reyna Uriarte), and the Community Project Liaison (Tapisa Kilabuk) will conduct a preliminary site visit to both the regional (Inuvik) and rural (Tuktoyaktuk) communities in Summer 2023 to consult with community leaders (e.g., Elders, nurses, community members) about the interest, acceptability, and feasibility of conducting the study in their community. Participant recruitment. 1) Health Service Providers At the beginning of Phase One, a recruitment email will be sent to all employees at the Inuvik Public Health Centre (through internal email) as well as Pauktuutit’s listserv for health service providers in Inuvik. The recipients will be given a brief description of the study and invited to participate in an FG to inform the study implementation. The recipients will be encouraged to contact the CPL to learn more about the study and to pass the information along to anyone else they think might interested. People who agree to participate will receive a reminder phone call a week before the FG and provided with an information sheet about the study and an electronic copy of the consent form, so they can prepare questions ahead of time. During the FGs, participants will be invited to take part in individual interviews after 6 months to share their opinions about the implementation and the Inuit Cancer Resources in a private setting. A month before the completion of the field test, similar recruitment emails with an information sheet about the interviews will be sent to previous FG participants, other health centre employees, and Pauktuutit’s listserv. To avoid social or professional pressure that might lead people from this group to feel obligated to participate in this study, potential participants will be given reassurances that participation is completely voluntary, that they have a right to refrain from participating or to withdraw from the study at any point, and that this will not affect their jobs or their access to health and social services. This is also emphasized in the consent forms. 2) Inuit Cancer Survivors and Families/Community Members Research team members will conduct a site visit at the beginning of the study to hold a series of meetings and community engagement activities (e.g., Bingo night). Attendees will receive information sheets about the FGs with an invitation to contact the CPL for further information and to pass the information along to anyone else they think might be interested. The CPL will be available to answer questions and take down potential participants’ contact information. People not yet ready to give an answer will be contacted a week later. Moreover, a poster containing the same information will be placed in the waiting rooms of the health centre and in community centres. The CPL will also approach local businesses (e.g., coffee shops) to ask for permission to hang this poster up in their premises. People who agree to participate in the FGs will receive a reminder phone call the week before and, if possible, give an electronic/paper copy of the consent form, so they can read it ahead of time and prepare questions. Cancer survivors and family caregivers who are given the Cancer Glossary and/or My Journey Booklet at the beginning of the intervention will receive a recruitment brochure for the individual interviews at the same time. They will be invited to participate in a follow-up interview that will take place at the end of the intervention to provide feedback about the resources. Those who provide their names will be contacted by the CPL, given a description of the interview session, and encouraged to ask questions about the study and what participation entails. They will be invited to undergo an individual interview. People who are not yet ready to give an answer will be contacted a week later. More potential participants will be identified through a snowballing technique by previous interview participants. Potential participants will be contacted by the participant who identified them to ask for permission to share their contact information with the study team. If permission is obtained, potential participants will be contacted by the CPL, as described above. Dissemination. Study results will be disseminated to our partner communities using dissemination venues and formats consistent with their preferences, such as community sharing sessions. We will prepare one-page infographic executive summaries for posting in health centers and on their website and social media, as appropriate. In agreement with the leadership of our community partners, scientific papers will be prepared for publishing in open-access journals, such as the International Journal of Indigenous Health, International Journal of Circumpolar Health, and AlterNative: An International Journal of Indigenous Peoples. Posters and presentations will be prepared for submission to peer-reviewed conferences/workshops/symposiums, such as University of Toronto Indigenous Health Conference, International Union for Circumpolar Health (planned in Canada for 2023 or 2024), and World Indigenous Cancer Conference. We will prioritize the participation of Indigenous partners in preparing scientific papers and presentations, supporting them to be first authors, as applicable. The fieldwork for this study will be conducted from: June 5 - December 31, 2023