Background:The aim of the study was to build understanding about the lived urban Indigenous experiences of early-onset dementia (EOD) to inform health services planning. Methods:A phenomenological qualitative pilot study completed with a total of five participants recruited and interviewed for 30 -60 min. Interviews were transcribed using NVivo12 software and thematically coded with a multi-step process.Results: Four overarching themes were identified: urban Indigenous understandings of living with EOD, Indigenous family experiences of adjusting to EOD, western approaches to healing and thriving with EOD, and Indigenous ways of healing and thriving with EOD. Conclusions:The findings of this project provide better understandings of urban Indigenous experiences of EOD and also dementia more broadly. Through a better understanding of the Indigenous experiences of dementia, urban healthcare providers can be more aware of the needs of urban Indigenous people living with dementia, and specifically EOD, and may face and plan to co-design health services accordingly.
BackgroundAmong Indigenous peoples in Canada, access to high-quality healthcare remains an important determinant of health. The shift to virtual and remote-based approaches, expedited during the COVID-19 pandemic, influenced the ways in which individuals accessed care and the quality of care received. This study sought to determine which elements are required for effective and sustainable virtual care approaches for delivery of primary care to Indigenous patients and develop quality indicators grounded in Indigenous community and experience. We share a conceptual framework to understand how Indigenous patients access and define high-quality virtual care, grounded in Indigenous patient experiences and worldviews.MethodsUsing principles of patient-oriented research, we grounded this work in social justice and participatory action research. We sought to gain an in-depth understanding of the Indigenous experiences of virtual care and specifically of primary care. This was developed through semistructured interviews with Indigenous patients and Indigenous virtual primary care providers.ResultsThirteen participants were interviewed between 5 August 2021 and 25 October 2021. Using Framework Analysis, we constructed four domains including access, relationships, quality and safety as being primary facets of defining high-quality Indigenous virtual primary care.DiscussionThe results presented here indicate that the shift to virtual care, largely seen in response to the COVID-19 pandemic, does not compromise quality of care, nor does it lead to negative patient experiences. Optimal care is possible in virtual settings for some care needs and types of appointments and has the potential to decrease barriers to access and improve patient experiences of safety and quality while facilitating patient/provider relationships.ConclusionIn summary, high-quality Indigenous virtual care benefits from attention to patients’ experiences of access, relationships, safety and quality with their service providers and healthcare teams.
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