Indigenous identity identification in administrative health care data globally: A scoping review.

OBJECTIVE: Both Indigenous and non-Indigenous governments and organizations have increasingly called for improved Indigenous health data in order to improve health equity among Indigenous peoples. This scoping review identifies best practices, potential consequences and barriers for advancing Indigenous health data and Indigenous data sovereignty globally. METHODS: A scoping review was conducted to capture the breadth and nature of the academic and grey literature. We searched academic databases for academic records published between 2000 and 2021. We used Google to conduct a review of the grey literature. We applied Harfield's Aboriginal and Torres Strait Islander Quality Appraisal Tool (QAT) to all original research articles included in the review to assess the quality of health information from an Indigenous perspective. RESULTS: In total, 77 academic articles and 49 grey literature records were included. Much of the academic literature was published in the last 12 years, demonstrating a more recent interest in Indigenous health data. Overall, we identified two ways for Indigenous health data to be retrieved. The first approach is health care organizations asking clients to voluntarily self-identify as Indigenous. The other approach is through data linkage. Both approaches to improving Indigenous health data require awareness of the intergenerational consequences of settler colonialism along with a general mistrust in health care systems among Indigenous peoples. This context also presents special considerations for health care systems that wish to engage with Indigenous communities around the intention, purpose, and uses of the identification of Indigenous status in administrative databases and in health care settings. Partnerships with local Indigenous nations should be developed prior to the systematic collection of Indigenous identifiers in health administrative data. The QAT revealed that many research articles do not include adequate information to describe how Indigenous communities and stakeholders have been involved in this research. CONCLUSION: There is consensus within the academic literature that improving Indigenous health should be of high priority for health care systems globally. To address data disparities, governments and health organizations are encouraged to work in collaboration with local Indigenous nations and stakeholders at every step from conceptualization, data collection, analysis, to ownership. This finding highlights the need for future research to provide transparent explanation of how meaningful Indigenous collaboration is achieved in their research.

Indigenous Autism in Canada: A Scoping Review.

Currently there is a severe lack of research on autism and Indigenous people in Canada. This scoping review explores this literature gap and assesses the same literature from an Indigenous perspective. Scoping reviews are an effective means to explore the literature in a specific area, in this case, autism and Indigenous people in Canada. We explored existing literature as it pertains to Indigenous populations and autism in Canada. To support this review, the Indigenous Quality Assessment Tool (QAT) was adapted to appraise the quality of literature. In total, there were a total of 212 articles identified of which 24 met the inclusion criteria: (1) some focus on autism, (2) a component specific to Indigenous people, and (3) specific to Canada. Of the 24 articles and reports, 15 were peer-reviewed and the rest considered grey literature. Most articles focused on program delivery with some literature using primary data (quantitative and/or qualitative). Overall, the quality of the research was appraised as poor, as determined by the QAT. Findings reaffirm the critical need for research that addresses autism in Indigenous communities within Canada and show the importance of having research done in full partnership with, or led by, Indigenous people.

Mâmawihitowin (bringing the camps together): Perinatal healthcare provider and staff participation in an Indigenous-led experiential intervention for enhancing culturally informed care-a mixed methods study.

BACKGROUND: In partnership with a Nehiyawak (Plains Cree) community of Maskwacîs,central Alberta (Canada), we implemented an Indigenous-led intervention to provide experiential learning opportunities for perinatal health care providers (HCPs) and staff. Our objective was to capture the impact of participating in cultural safety learning opportunities on perceived self-awareness for HCPs and staff to provide enhanced culturally informed care. METHODS: Perinatal HCPs and staff who work regularly with Indigenous women from our partnering community took part in a series of experiential learning activities designed by a Community Advisory Committee. We used an explanatory sequential mixed methods approach informed by community-based participatory research. We compared Cultural Intelligence Scale (CQS) and Maskwacîs-Specific Cultural Scale (MSCS) scores pre- and post-intervention using non-parametrical statistical analysis (Wilcoxon signed rank test). Post-intervention, we conducted a qualitative description study using semi-structured interviews. Qualitative data was analyzed using thematic analysis. RESULTS: A total of 17 participants completed pre- and post-intervention questionnaires. Responses indicated a shift in perceived cultural and community knowledge and comfort levels, with positive gains in overall mean scores for both the CQS (p = 0.01) and MSCS (p = 0.01). Nine participants completed qualitative interviews. Overall, participants felt better equipped to provide more culturally informed care to their patients post-intervention. CONCLUSION: An Indigenous-led experiential learning intervention was effective in enhancing overall perceived cultural awareness and preparedness to provide culturally informed care for perinatal HCPs and staff. This study provides evidence for fostering relationships between Indigenous communities and health systems toward enhanced perinatal care.

Informing care pathways and policies for children and youth with Indigenous perspectives to advance Canada's National Autism Strategy.

In Canada, most services for Autistic people are provided by provincial and territorial governments. However, support for Indigenous Peoples (First Nations, Inuit, and Métis) are under federal responsibility and are outlined by a set of treaties and agreements with the Crown and a few regional governments. This patchwork results in barriers in service access and navigation challenges in many under-resourced communities, including under-diagnosis and potentially life-threatening outcomes. Designing equitable policy structures and processes would reduce harms and meaningfully interface with Indigenous and other racialized communities. The objective of this Policy Practice Review is to provide a framework for the discovery of appropriate care strategies addressing the conceptualization of autism in Indigenous Peoples and to understand the interactions between racialized Autistic peoples and the Criminal Justice System. First, we conducted environmental scans of publicly-accessible government services available in Canada pertaining to autism in Indigenous communities and the justice system, and explored the dissonance with beliefs and perceptions of autism in Northern Indigenous communities. Second, we focused on the interactions of Indigenous and other racialized populations, with an emphasis on Autistic children and youth with the justice system, an interaction that is often life-altering, downstream, and detrimental to health and wellbeing. The implications of this work include identifying the need for Indigenous-led knowledge and policy recommendations for Canada's upcoming National Autism Strategy, informing the need for culturally appropriate multidisciplinary care and facilitating the coordination between health and social services for these communities.

Peyakohewamak-Needs of Involved Nehiyaw (Cree) Fathers Supporting Their Partners During Pregnancy: Findings From the ENRICH Study.

We sought to understand the needs of involved Nehiyaw (Cree) fathers who supported their partners during pregnancy. We used qualitative description and a community-based participatory research approach. We carried out in-depth semi-structured interviews with six Nehiyaw fathers. Four also participated in photovoice and follow-up interviews. All data were content analyzed qualitatively. Fathers felt they had to support their partners and overcome challenges resulting from intergenerational colonial impacts (residential schools particularly) by reclaiming their roles and acknowledging the pregnancy as a positive change. Providing support was possible through their own strong support system stemming from family, faith, culture, and a stable upbringing with positive male role models and intact Nehiyaw kinships. Perinatal programming did little to include fathers. Attempts to improve perinatal care and outcomes should allow more inclusion of and support for Indigenous fathers through genuinely incorporating into care traditional culture and Elders, families, flexibility, cultural understanding, and reconciliation.

Kikiskawâwasow - prenatal healthcare provider perceptions of effective care for First Nations women: an ethnographic community-based participatory research study.

BACKGROUND: Pregnant Indigenous women suffer a disproportionate burden of risk and adverse outcomes relative to non-Indigenous women. Although there has been a call for improved prenatal care, examples are scarce. Therefore, we explored the characteristics of effective care with First Nations women from the perspective of prenatal healthcare providers (HCPs). METHODS: We conducted an ethnographic community-based participatory research study in collaboration with a large Cree First Nations community in Alberta, Canada. We carried out semi-structured interviews with 12 prenatal healthcare providers (HCPs) that were recorded, transcribed, and subjected to qualitative content analysis. RESULTS: According to the participants, relationships and trust, cultural understanding, and context-specific care were key features of effective prenatal care and challenge the typical healthcare model. HCPs that are able to foster sincere, non-judgmental, and enjoyable interactions with patients may be more effective in treating pregnant First Nations women, and better able to express empathy and understanding. Ongoing HCP cultural understanding specific to the community served is crucial to trusting relationships, and arises from real experiences and learning from patients over and above relying only on formal cultural sensitivity training. Consequently, HCPs report being better able to adapt a more flexible, all-inclusive, and accessible approach that meets specific needs of patients. CONCLUSIONS: Aligned with the recommendations of the Truth and Reconciliation Commission of Canada, improving prenatal care for First Nations women needs to allow for genuine relationship building with patients, with enhanced and authentic cultural understanding by HCPs, and care approaches tailored to women's needs, culture, and context.