Edmonton's Race-based Data Table: A municipal approach to addressing systemic racism through the collection and use of disaggregated, race-based data.

Recent events, such as the COVID-19 pandemic, have drawn nationwide attention to systemic racism as a serious threat to public health in Canada. One promising approach to address such racism is through developing and implementing standardized procedures for collecting and using disaggregated, race-based data. In this commentary, we summarize why this approach is necessary to address systemic racism in Canada, and highlight municipal actions being taken in Edmonton, Alberta, to move this approach forward. In 2021, a Race-based Data Table, comprising 24 institutions and organizations affiliated with health, education, and policing systems, was formed in Edmonton. It aimed to engage practitioners, systems representatives, academics, and community members in collective advocacy around accessing race-based data to better understand and address disparate health outcomes associated with COVID-19 for racialized communities. Further, the Table intends to co-create a charter and toolkit outlining best practices for ethical, race-based data collection and use with local stakeholders and knowledge users. In documenting the beginning stages of the Table, and in evaluating its ongoing progress, we contribute to national conversations regarding the need for government institutions and other organizations to consistently collect and use race-based data as a means of increasing transparency and accountability in their actions.

RéSUMé: De récents événements, comme la pandémie de COVID-19, ont attiré l'attention du pays sur la grave menace que pose le racisme systémique pour la santé publique au Canada. Une approche prometteuse pour aborder ce racisme consiste à élaborer et à appliquer des méthodes standardisées pour la collecte et l'utilisation de données désagrégées fondées sur la race. Dans ce commentaire, nous résumons les raisons pour lesquelles cette approche est nécessaire pour aborder le racisme systémique au Canada et nous présentons des actions posées au palier municipal à Edmonton, en Alberta, pour faire avancer les choses. En 2021, une « table des données fondées sur la race ¼ composée de 24 établissements et organismes affiliés aux systèmes de santé, d'éducation et de maintien de l'ordre a été créée à Edmonton. Elle veut favoriser une action collective des praticiens, des représentants des systèmes, des universitaires et des résidents, articulée autour de l'accès aux données fondées sur la race, afin de mieux comprendre et de mieux aborder les résultats cliniques disparates associés à la COVID-19 dans les communautés racisées. Cette table veut aussi cocréer une charte et une trousse d'outils définissant des pratiques exemplaires de collecte et d'utilisation de données éthiques, fondées sur la race, avec les parties prenantes et les utilisateurs de connaissances locaux. En documentant les débuts de cette table et en évaluant ses progrès au fil du temps, nous contribuons aux conversations nationales sur la nécessité, pour les institutions gouvernementales et d'autres organismes, de collecter et d'utiliser systématiquement des données fondées sur la race pour accroître la transparence et la responsabilisation dans leurs actions.

Nurturing maternal health in the midst of difficult life circumstances: a qualitative study of women and providers connected to a community-based perinatal program.

BACKGROUND: Many socioecological and structural factors affect women's diets, physical activity, and her access and receptivity to perinatal care. We sought to explore women's and providers' perceptions and experiences of health in the pre- and post-natal period while facing difficult life circumstances, and accessing a community-based program partially funded by Canada Prenatal Nutrition Program (CPNP) in Alberta, Canada. METHODS: Following the principles of community-based participatory research, we conducted a focused ethnography that involved five focus groups with women (28 in total), eight one-on-one interviews with program providers, and observations of program activities. Data were analyzed through qualitative content analysis to inductively derive codes and categories. RESULTS: Women perceived eating healthy foods, taking prenatal vitamins, and being physically active as key health behaviours during pregnancy and postpartum. However, they were commonly coping with many difficult life circumstances, and faced health barriers for themselves and their babies. These barriers included pregnancy or birth complications, family and spousal issues, financial difficulties, and living rurally. On the other hand, women and providers identified many aspects of the community-based program that addressed the burden of adversities as enablers to better health during pregnancy and postpartum. CONCLUSION: Community-based programs have an important role in alleviating some of the burden of coping with difficult life circumstances for women. With such potential, community-based programs need to be well supported through policies. Policies supporting these programs, and ensuring adequate funding, can enable more equitable services to rural women and truly promote maternal health during pregnancy and postpartum.

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.

The determinants of meaning of pain following an acute traumatic injury.

RATIONALE AND AIMS: Meaning is an integral aspect of life that drives behaviours, actions and emotions. Perception of pain is believed to be affected by the meaning of pain. Our primary aim was to investigate and discuss the determinants of meaning in acute pain following a traumatic injury. METHODOLOGICAL DESIGN: Using the Interpretive Description approach, a method of qualitative inquiry, 13 adults hospitalised due to their accidental injuries were recruited. Semi-structured interviews that were digitally recorded were used to collect the data. Ethical approval was received by our local Health Research Ethics Board, and all relevant ethical standards were followed as outlined in the approved ethics proposal. FINDINGS: The three primary determinants of meaning during an acute pain event, or the experience of acute pain include permanence of injuries, incongruence of care quality, and personal responses to the injury and care received. Although the permanence of an injury is lasting, we did not find any emotional response to this fact while the participants were hospitalised. The emotion characterising the personal response to the perceived poor quality of hospital care received was anxiety. CONCLUSION: Both the technical and personal components of healthcare quality have the potential to increase the perception of pain. Meanings in an acute pain event are primarily related to the determinants of incongruent care and the personal response to that determinant: anxiety.

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.

Contrasting "back home" and "here": how Northeast African migrant women perceive and experience health during pregnancy and postpartum in Canada.

BACKGROUND: International migration and the number of migrant women who experience pregnancy and childbirth in receiving countries have significantly increased in the last two decades. Migrant women often have unmet social and economic needs during pregnancy, and are more likely to have problems unaddressed by health care systems. In this qualitative study, we explored migrant women's perceptions and experiences of health during pregnancy and postpartum, while participating in a perinatal program offered through a community-based organization. Additionally, we examined sociocultural factors that might have shaped women's health upon migration to the Canadian city of Edmonton, Alberta. METHODS: A community-based participatory research approach was used to engage migrant women connected to a community-based perinatal program in Edmonton. A focused ethnography was conducted with four Northeast African communities (Eritrean, Ethiopian, Oromo and Somali), and involved 10 focus groups with women (n = 8, per group) and direct observations of weekly perinatal program activities. Data generation and analysis occurred concurrently, and all generated data were analyzed using qualitative content analysis to inductively derive codes and categories. RESULTS: Women expressed their perceptions and experiences of health during pregnancy and postpartum by contrasting their countries of origin with Canada, respectively identified as "back home" and "here". Differences in social support and the physical environment (both natural and built) between "back home" and "here" were commonly described as factors that shaped their opportunities to eat healthy, be physically active and emotionally well before and after having a baby "here". Overall, women described that in Canada they lacked the social and environmental factors perceived as key enablers of healthy pregnancies and postpartum. CONCLUSION: A complex network of factors seem to influence Northeast African women's health during pregnancy and postpartum upon migration to Canada. It is of the utmost importance to provide these women with the immediate sociocultural and environmental factors they need to successfully thrive during pregnancy and postpartum, especially while establishing social and support networks "here".

Worth the Risk? Muddled Relationships in Community-Based Participatory Research.

Community-based participatory research (CBPR) is a collaborative research approach that has two purposes: (a) to generate knowledge about and (b) to take action to improve the lives of people facing health, social, economic, political, and environmental inequities. The foundation of all CBPR projects is its partnership--its cooperative relationship between community members, service providers, program planners, policy makers, and academics. It is with people--and through relationships--that partnerships are built and sustained. Although relationships between academics and community members are critical to creating knowledge and change, they are overlooked in the literature. We often hear about CBPR "gone wrong," when tensions and conflicts arise because relationship boundaries become blurred. Our purpose is to expose the muddled relationships that can be created between academics and community members in CBPR projects. Drawing upon our experiences presented in a series of vignettes, we consider the nature of these relationships. We explore whether we conduct, in CBPR, good research at the expense of muddling relationships. Despite the potential for muddled relationships, we believe that CBPR is the best approach for research aimed at achieving a more equitable and just society.

Cultural continuity, traditional Indigenous language, and diabetes in Alberta First Nations: a mixed methods study.

INTRODUCTION: We used an exploratory sequential mixed methods approach to study the association between cultural continuity, self-determination, and diabetes prevalence in First Nations in Alberta, Canada. METHODS: We conducted a qualitative description where we interviewed 10 Cree and Blackfoot leaders (members of Chief and Council) from across the province to understand cultural continuity, self-determination, and their relationship to health and diabetes, in the Alberta First Nations context. Based on the qualitative findings, we then conducted a cross-sectional analysis using provincial administrative data and publically available data for 31 First Nations communities to quantitatively examine any relationship between cultural continuity and diabetes prevalence. RESULTS: Cultural continuity, or "being who we are", is foundational to health in successful First Nations. Self-determination, or "being a self-sufficient Nation", stems from cultural continuity and is seriously compromised in today's Alberta Cree and Blackfoot Nations. Unfortunately, First Nations are in a continuous struggle with government policy. The intergenerational effects of colonization continue to impact the culture, which undermines the sense of self-determination, and contributes to diabetes and ill health. Crude diabetes prevalence varied dramatically among First Nations with values as low as 1.2% and as high as 18.3%. Those First Nations that appeared to have more cultural continuity (measured by traditional Indigenous language knowledge) had significantly lower diabetes prevalence after adjustment for socio-economic factors (p =0.007). CONCLUSIONS: First Nations that have been better able to preserve their culture may be relatively protected from diabetes.

Diabetes in pregnancy among First Nations women.

We conducted a focused ethnography with 12 First Nations women who had had diabetes in pregnancy to understand their real-life experiences and find ways to improve care for those with diabetes in pregnancy. We carried out unstructured interviews that were recorded, transcribed, and subject to qualitative content analysis. The experience of diabetes in pregnancy is one wrought with difficulties but balanced to some degree by positive lifestyle changes. Having a strong support system (family, health care, cultural/community, and internal support) and the necessary resources (primarily awareness/education) allows women to take some control of their health. Efforts to improve pregnancy care for First Nations women should take a more patient-centered care approach and strive to enhance the support systems of these women, increase their sense of autonomy, and raise awareness of diabetes in pregnancy and its accompanying challenges.

Diabetes in pregnancy among First Nations women in Alberta, Canada: a retrospective analysis.

BACKGROUND: In addition to increasing the risk of adverse birth outcomes, diabetes in pregnancy is thought to be an important driver of the epidemic of type 2 diabetes affecting Canada's First Nations population. The relative contributions of gestational diabetes mellitus (GDM) and pre-existing diabetes are not well understood. We generated a comprehensive epidemiological profile of diabetes in pregnancy over a 10-year period among the First Nations population of Alberta, Canada. METHODS: De-identified administrative data for 427,058 delivery records were obtained for the years 2000-2009. Pregnancy risk factors and delivery outcomes were described and compared by ethnicity (First Nations vs. non-First Nations) and diabetes status. Age-adjusted prevalence values for GDM and pre-existing diabetes were calculated and were compared by ethnicity. Longitudinal changes over time were also examined. Predictors were explored using logistic regression analysis. RESULTS: First Nations women had more antenatal risk factors and adverse infant outcomes that were compounded by diabetes. First Nations descent was an independent predictor of diabetes in pregnancy (p < 0.001). GDM prevalence was significantly higher among First Nations (6.1%) compared to non-First Nations women (3.8%; p < 0.001), but prevalence values increased significantly over time only in non-First Nations women (4.5 average annual percent change; p < 0.05). The prevalence of pre-existing diabetes was stable over time in both groups, but First Nations women experienced a 2.5-fold higher overall prevalence compared with non-First Nations women (1.5% vs. 0.6%, respectively; p < 0.001). CONCLUSIONS: Although First Nations women experience a higher overall prevalence of diabetes in pregnancy, the lack of increase in the prevalence over time is encouraging. However, because high-risk pregnancies and poor outcomes are more common among First Nations women, particularly those with diabetes, strategies to improve perinatal care must be implemented.