Grant: Project Grant

This is a 5-year Indigenous driven patient-oriented research project that creates a First Nations and Métis lived experience database focused on end-stage organ failure (ESOF) and organ donation and transplantation (ODT) in Saskatchewan, Alberta and British Columbia. Our team is comprised of Indigenous leaders, persons with lived experience, healthcare providers, Canadian and international researchers, ODT decision-makers and advocacy organizations. In Canada, First Nations, Métis, and Inuit (FNMI) are overrepresented in patient populations living with ESOF. Unfortunately, healthcare decision-makers and FNMI leaders hold limited knowledge about the specific challenges FNMI patients face when accessing ODT treatment. This lack of awareness results in FNMI patients, particularly those living in rural, remote, reserve and northern regions, experiencing inequities and gaps in healthcare that go undocumented and unaddressed. Research questions include: 1. What is the lived experience of FNM patients and their caregivers when faced with a diagnosis of ESOF (e.g. kidney, liver, lung)? 2. How do the experiences of patient or caregivers differ depending on variables such as FNM identity and culture, geographic location, age, gender, socioeconomic status, and healthcare jurisdictions? 3. What barriers and gaps in healthcare access do FNM patients and caregivers experience as they seek treatment? 4. What Indigenous or distinctions-based services and supports currently exist that support FNM patients, caregivers, and families to overcome barriers and gaps in healthcare services at local, regional and provincial/territorial levels? 5. How are patients and caregivers supported by their respective Indigenous healthcare leaders and communities during their illness and recovery journeys? 6. What changes do FNM patients, caregivers and healthcare providers identify that will lead to meaningful positive outcomes for patient treatment and recovery journeys?