NWT RESEARCH DATABASE

Regions: North Slave Region

Tags: Breathing close to home

Objective(s): This study aims to conduct an environmental scan and research priority-setting exercise to identify and address healthcare disparities impacting children using HMV in rural and underserved areas of Western and Northern Canada.

Project Description: This licence has been issued for the scientific research application No. 6186. This study aims to conduct an environmental scan and research priority-setting exercise to identify and address healthcare disparities impacting children using HMV in rural and underserved areas of Western and Northern Canada. The specific objectives are: 1. To understand the lived experiences of family caregivers regarding healthcare inequities and access barriers. 2. To assess the perspectives of healthcare providers, administrators, and rural case managers on systemic barriers to care. 3. To compile findings into a comprehensive report that will inform future research priorities and policy recommendations for improving care accessibility and delivery. This environmental scan (ES) and priority setting exercise aim to identify current healthcare inequities impacting children and families across jurisdictions in West/North Canada, focusing on family-caregiver identified needs to inform research priorities. To undertake this ES, we have used an integrated knowledge translation approach to engage key stakeholders: (1) family- caregivers who care for a child using HMV in rural/underserved areas, (2) HCPs, administrators and rural case managers in two regional/territorial hospitals, and (3) members of the Western Canada HMV (WC-HMV) group integrated by 12 pediatric respirologists from all children’s hospitals in Western Canada with HMV programs. We will undertake the following activities: 1) Establishment of Patient/Family Advisory group. We will convene a multiprovincial advisory group of approximate 12 family-caregivers with lived experiences of having a child using HMV (includes tracheostomy, and/or home invasive or non-invasive ventilation) who live in a rural/underserved area of Western/Northern Canada. Through two 2-hour virtual group meetings, we will seek to (1) understand how healthcare inequities have affected the lives of their child using HMV, themselves, and their families, as well as the intersections with structural healthcare disparities associated to belonging to other marginalized groups such as a racialized group, indigenous background, gender or sexual orientation, life with disabilities; and (2) identify care needs and priorities to improve care and access to care for low-medium acuity situations. We will identify eligible participants by requesting members of the WC-HMV group to identify diverse family-caregivers in their HMV programs or existing parent advisors, and using printed materials to advertise this opportunity in participating centers. We will proactively use recruitment strategies targeting diversity with regards to family-caregiver gender, race, cultural background, and socioeconomic status. This work will be led by Kristen Gibson (co-A) and assisted by Elise Kammerer, a research team member with expertise in patient-oriented research and health equity, to facilitate meaningful engagement with participants. 2) Study visits to two hospitals in rural/underserved areas in West/North Canada: Grande Prairie Regional Hospital (Grande Prairie, AB) and Stanton Territorial Hospital (Yellowknife, NT). We will conduct in- person meetings with key HCPs, administrators, and rural case managers to gather information about their perspectives of the current barriers to care for children using HMV in their hospitals (see provisional agenda). We will also gather information about their current infrastructure and resource availability, including existing digital health tools that could facilitate future innovative implementation projects and communication between HCPs across centers. We have selected these sites based on the large underserved catchment areas covered by these sites; research related to child health initiatives based on health performance indicators developed by the Canadian Institute for Health Information in 18 northern communities across Canada found those communities in Nunavut, Northwest Territories and Yukon, as well as western areas of northern BC, Alberta, Saskatchewan and Manitoba to be significantly disadvantaged compared to Canada as a whole. These communities served higher indigenous and aboriginal communities compared with other northern regions in Ontario and Quebec. Maria Castro (PI) and Kristen Gibson (co-PI) will travel to these hospitals to facilitate stakeholder engagement and relationship building. During the in-person visits, we will follow established standards for knowledge sharing and cultural competence. Other members of the study team will join the meetings virtually for participation and note taking. 3) Information synthesis and research priority setting. We will compile our findings from the two virtual meetings with the family-caregiver advisory group and the study visits to the two selected hospitals in rural/underserved areas in a final report that will be circulated to all members of the family-caregiver advisory group and the WC-HMV group, highlighting family-caregiver identified barriers to care and priorities to improve care for children using HMV in rural/underserved areas. We will organize an in-person half-day meeting to gather the members of WC-HMV group, two interested family-caregivers and the study team during the Annual Conference of the Canadian Thoracic Society in 2026 to present the findings of this environmental scan and plan for next research steps. This meeting will be chaired by Marie Wright (Co-PI). During the meeting, family-caregiver partners will present key challenges to care and access to care as well as need priorities identified by the family-caregiver advisory group. Kristen Gibson will present a summary of main barriers to care identified by local healthcare providers during the study visits and proposed potential solutions, followed by group discussion. Led by Marie Wright and facilitated by members of the research team, we will perform a priority setting exercise based on the REPRISE reporting standards9 to: (1) define broad research topics based on the results of ES and prioritize specific research questions for future research; (2) establish a priority framework to develop criteria and methods to organize and prioritize identified research questions based on relevance, feasibility and potential impact in each province; and (3) create a knowledge mobilization plan for dissemination of findings and recommendations and engagement key local stakeholders in rural/underserved areas across provinces. Project outputs: (1) A final report detailing study findings including family-caregivers identified care needs and stakeholder prioritized research questions; (2) A proposal for a family-caregiver-driven symposia to discuss engagement strategies and family-caregiver led advocacy work to be submitted to the Canadian Thoracic Society; (3) Family-caregiver-driven Grand Rounds to present study findings at all participating sites; and (4) An academic manuscript in an internationally recognized medical journal detailing family-caregiver engagement strategies and main study findings. This study will provide critical insights into healthcare disparities and lay the groundwork for future research and policy interventions aimed at improving care for children using HMV in rural and underserved regions. We have engaged stakeholders at the Stanton Territorial Hospital, Yellowknife, NT from the conception of this study and will continue to engage them throughout the study period. Attached is the letter of support we have receive from the leadership of the hospital. The fieldwork for this study will be conducted from: May 26 - December 31, 2025