Assessing Breast Cancer Screening and Outcomes Among First Nations Women in Alberta.

BACKGROUND: Breast cancer (BC) incidence rates for First Nations (FN) women in Canada have been steadily increasing and are often diagnosed at a later stage. Despite efforts to expand the reach of BC screening programs for FN populations in Alberta (AB), gaps in screening and outcomes exist. METHODS: Existing population-based administrative databases including the AB BC Screening Program, the AB Cancer Registry, and an AB-specific FN registry data were linked to evaluate BC screening participation, detection, and timeliness of outcomes in this retrospective study. Tests of proportions and trends compared the findings between FN and non-FN women, aged 50-74 years, beginning in 2008. Incorporation of FN principles of ownership, control, access, and possession (OCAP®) managed respectful sharing and utilization of FN data and findings. RESULTS: The average age-standardized participation (2013-8) and retention rates (2015-6) for FN women compared to non-FN women in AB were 23.8% (P < .0001) and 10.3% (P = .059) lower per year, respectively. FN women were diagnosed with an invasive cancer more often in Stage II (P-value = .02). Following 90% completion of diagnostic assessments, it took 2-4 weeks longer for FN women to receive their first diagnosis as well as definitive diagnoses than non-FN women. CONCLUSION: Collectively, these findings suggest that access to and provision of screening services for FN women may not be equitable and may contribute to higher BC incidence and mortality rates. Collaborations between FN groups and screening programs are needed to eliminate these inequities to prevent more cancers in FN women.

Creation of a Métis-Specific Instrument for Cancer Screening: A Scoping Review of Cancer-Screening Programs and Instruments.

Understanding the barriers to and facilitators of cancer screening programs among Indigenous populations remains limited. In the spirit of mutual respect, this co-led, collaborative project was carried out between the Métis Nation of Alberta and Screening Programs from Alberta Health Services (AHS). This scoping review assessed the cancer screening literature for available questionnaires and then identified themes and suitable questions for a Métis-specific cancer screening questionnaire. Literature searches on cervical, breast, and colorectal cancer screening programs and related concepts were conducted in electronic databases, including the Native Health Database, MEDLINE (Ovid), PsycINFO, PubMed, PubMed Central, CINAHL, MEDLINE (Ebsco), Psychology & Behavioral Sciences Collection, and Web of Science. Grey literature was collected from AHS Insite, Open Archives Initiative repository, American Society of Clinical Oncology, European Society of Medical Oncology, Google, and Google Scholar. 135 articles were screened based on the eligibility criteria with 114 articles selected, including 14 Indigenous-specific ones. Knowledge, attitude, belief, behaviour, barrier, and facilitator themes emerged from the review, but no Métis-specific cancer screening instruments were found. Thus, one was developed using existing cancer screening instruments, with additional questions created by the project team. A survey of the Métis population in Alberta will use this questionnaire and provide data to address the burden of cancer among Métis people.

Disparities in prostate cancer screening, diagnoses, management, and outcomes between Indigenous and non-Indigenous men in a universal health care system.

BACKGROUND: Indigenous Peoples have higher morbidity rates and lower life expectancies than non-Indigenous Canadians. Identification of disparities between Indigenous and non-Indigenous men regarding prostate cancer (PCa) screening, diagnoses, management, and outcomes was sought. METHODS: An observational cohort of men diagnosed with PCa between June 2014 and October 2022 was studied. Men were prospectively enrolled in the province-wide Alberta Prostate Cancer Research Initiative. The primary outcomes were tumor characteristics (stage, grade, and prostate-specific antigen [PSA]) at diagnosis. Secondary outcomes were PSA testing rates, time from diagnosis to treatment, treatment modality, and metastasis-free, cancer-specific, and overall survivals. RESULTS: Examination of 1,444,974 men for whom aggregate PSA testing data were available was performed. Men in Indigenous communities were less likely to have PSA testing performed than men outside of Indigenous communities (32 vs. 46 PSA tests per 100 men [aged 50-70 years] within 1 year; p < .001). Among 6049 men diagnosed with PCa, Indigenous men had higher risk disease characteristics: a higher proportion of Indigenous men had PSA ≥ 10 ng/mL (48% vs. 30%; p < .01), TNM stage ≥ T2 (65% vs. 47%; p < .01), and Gleason grade group ≥ 2 (79% vs. 64%; p < .01) compared to non-Indigenous men. With a median follow-up of 40 months (interquartile range, 25-65 months), Indigenous men were at higher risk of developing PCa metastases (hazard ratio, 2.3; 95% CI, 1.2-4.2; p < .01) than non-Indigenous men. CONCLUSIONS: Despite receiving care in a universal health care system, Indigenous men were less likely to receive PSA testing and more likely to be diagnosed with aggressive tumors and develop PCa metastases than non-Indigenous men.

Barriers and supports for uptake of human papillomavirus vaccination in Indigenous people globally: A systematic review.

Despite the availability of effective and safe human papillomavirus (HPV) vaccines that reduce the incidence and impact of cervical cancer and other cancers, HPV vaccine coverage rates remain persistently low and the cervical cancer burden disproportionately high among Indigenous people globally. This study aimed to systematically identify, appraise, and summarize the literature on documented barriers and supports to HPV vaccination in Indigenous populations internationally. Forty-three studies were included and an inductive, qualitative, thematic synthesis was applied. We report on 10 barrier themes and 7 support themes to vaccine uptake, and provide a quantitative summary of metrics. Focusing on Indigenous perspectives reported in the literature, we propose recommendations on community-research collaboration, culturally safe intergenerational and gender-equitable community HPV vaccine education, as well as multi-level transparency to ensure informed consent is secured in the context of reciprocal relationships. Although the voices of key informant groups (e.g., HPV-vaccine eligible youth and community Elders) are underrepresented in the literature, the identification of barriers and supports to HPV vaccination in a global Indigenous context might help inform researchers and health policy makers who aim to improve HPV vaccine uptake in Indigenous populations.

Aspects of Wellbeing for Indigenous Youth in CANZUS Countries: A Systematic Review.

Indigenous children and young people (hereafter youth) across CANZUS nations embody a rich diversity of cultures and traditions. Despite the immense challenges facing these youth, many harness cultural and personal strengths to protect and promote their wellbeing. To support this for all youth, it is critical to understand what contributes to their wellbeing. This review aims to identify components contributing to wellbeing for Indigenous youth in CANZUS nations. Five databases were searched from inception to August 2022. Papers were eligible if they: focused on Indigenous youth in CANZUS nations; included views of youth or proxies; and focused on at least one aspect of wellbeing. We identified 105 articles for inclusion (Canada n = 42, Australia n = 27, Aotearoa New Zealand n = 8, USA n = 28) and our analysis revealed a range of thematic areas within each nation that impact wellbeing for Indigenous youth. Findings highlight the unique challenges facing Indigenous youth, as well as their immense capacity to harness cultural and personal strengths to navigate into an uncertain future. The commonalities of Indigenous youth wellbeing across these nations provide valuable insights into how information and approaches can be shared across borders to the benefit of all Indigenous youth and future generations.

Cancer Screening Interventions in Indigenous Populations: A Rapid Review.

Cancer screening is an important component of a cancer control strategy. Indigenous people in Canada have higher incidence rates for many types of cancer, including those that can be detected early or prevented through organized screening programs. Increased participation and retention in cancer screening is critical to improved population health outcomes amongst Indigenous people. This rapid review evaluates cancer screening interventions published in the last six years. Included studies demonstrated increased participation in breast, colorectal, or cervical cancer screening programs in Indigenous populations or showed promise of increased participation based on the factors that influence people's screening practices, such as knowledge, attitude, or intent to screen. The Preferred Reporting Items for Systematic Reviews guided the search strategy. The review identified 85 articles with 12 meeting the specified criteria: seven studies reported an increase in cancer screening participation and five studies reported improved knowledge, attitude, or intent to screen. The use of multiple culturally appropriate strategies in co-designed studies were the most effective. This review will be used to inform First Nations (FN) populations and Screening Programs in Alberta of potential strategies to address disparities identified through a recent data analysis comparing cancer screening and outcomes between FN and non-FN people.

Places of death and places of care for Indigenous Peoples in Ontario: a retrospective cohort study.

OBJECTIVES: Most people, including Indigenous people in Ontario, wish to die in their communities. How often Indigenous people in Ontario die in their preferred settings is unknown. This study aims to describe the places of care and death for Indigenous people in Ontario who received provincially funded home care services. METHODS: We conducted a retrospective cohort study using linked health administrative databases housed at ICES. We used a population-based cohort of Indigenous and non-Indigenous people in Ontario who died between April 1, 2010 and March 31, 2015 to describe characteristics of people, places of death, and places of care. RESULTS: Indigenous decedents were on average 8.8 years younger, had more chronic diseases, and lived in lower income neighbourhoods compared with their non-Indigenous counterparts. Indigenous decedents spent nearly 8 more days in acute care in the last year of life and more died in acute care (56.1% versus 46.1%). When controlling for covariates, Indigenous decedents received 1.9 fewer home care nursing hours and 5 fewer personal support worker hours and showed decreased odds (OR 0.72) of receiving a palliative physician visit in the last 90 days of life. Among Indigenous decedents, a palliative physician visit lowered odds of dying in acute care by 50% and total days in acute care by 18%. CONCLUSION: Our study identified a gap in end-of-life care for Indigenous Peoples in Ontario receiving provincially funded home care. Without continued efforts to address challenges that perpetuate health inequalities, we expect many Indigenous people will continue to die in acute care away from their people, families, and culturally relevant supports.

RéSUMé: OBJECTIFS: La plupart des gens, y compris les personnes autochtones en Ontario, souhaitent mourir dans leur milieu. On ignore à quelle fréquence les personnes autochtones de l'Ontario meurent dans le milieu de leur choix. Notre étude vise à décrire les lieux de soins et de décès des personnes autochtones en Ontario ayant reçu des services de soins à domicile financés par la province. MéTHODE: Nous avons mené une étude de cohorte rétrospective à l'aide de bases de données administratives sur la santé reliées entre elles hébergées à l'ICES. Nous avons utilisé une cohorte populationnelle des personnes autochtones et non autochtones en Ontario décédées entre le 1er avril 2010 et le 31 mars 2015 pour décrire les caractéristiques de ces personnes, leurs lieux de décès et leurs lieux de soins. RéSULTATS: Les défunts autochtones étaient en moyenne 8,8 ans plus jeunes, avaient davantage de maladies chroniques et vivaient dans des quartiers à plus faible revenu que les défunts non autochtones. Les défunts autochtones avaient passé près de 8 jours de plus dans des milieux de soins de courte durée au cours de leur dernière année de vie et ont été plus nombreux à mourir dans des milieux de soins de courte durée (56,1 % c. 46,1 %). Après avoir apporté des ajustements pour tenir compte des effets de covariables, nous avons constaté que les défunts autochtones ont reçu 1,9 fois moins d'heures de soins infirmiers à domicile et 5 fois moins d'heures de préposés aux services de soutien à la personne et qu'ils ont présenté une probabilité plus faible (RC 0,72) de recevoir la visite d'un médecin en soins palliatifs au cours de leurs 90 derniers jours de vie. Chez les défunts autochtones, la visite d'un médecin en soins palliatifs réduisait de 50 % la probabilité de mourir dans un milieu de soins de courte durée et de 18 % le nombre total de jours passés dans un milieu de soins de courte durée. CONCLUSION: Notre étude a décelé une lacune dans les soins de fin de vie aux personnes autochtones de l'Ontario qui reçoivent des soins à domicile financés par la province. Si l'on ne fait pas continuellement des efforts pour aborder les difficultés qui perpétuent les inégalités en santé, on peut s'attendre à ce que de nombreuses personnes autochtones continuent de mourir dans des milieux de soins de courte durée, loin de leurs peuples, de leurs familles et sans recevoir de soins culturellement appropriés.

Psychosocial Aspects of Delivering Cancer Care to Indigenous People: An Overview.

Globally, a growing body of evidence has reported significant disparities in cancer outcomes between indigenous and nonindigenous people. Although some effort is being made to address these disparities, relatively little attention has been directed toward identifying and focusing on the psychosocial aspects of cancer care for indigenous patients, which are critical components in improving cancer care and outcomes. The purpose of this article is to describe the results of a scoping review of the psychosocial aspects of cancer care for indigenous people. We highlight considerations in undertaking research in this field with indigenous people and the implications for clinical practice.

Creating a Canadian Indigenous Research Network Against Cancer to Address Indigenous Cancer Disparities.

PURPOSE: In Canada, indigenous peoples' cancer rates have increased, but cancer screening rates tend to be lower. When coupled with poor cancer prognosis, treatment barriers, and inaccessible health care, indigenous patients with cancer experience many unmet needs. Further complicating their journey is a multijurisdictional system that complicates cancer control services, treatments, patient supports, and cancer surveillance. To address these issues, the Canadian Indigenous Research Network Against Cancer (CIRNAC) was developed. This article describes the forerunners and consultative process that created the network and the consensus model developed to ground this network with, by, and for indigenous peoples. METHODS: A consultative workshop was held to (1) establish and increase network membership, (2) enhance partnerships with indigenous communities and other researchers, and (3) develop an indigenous-led research program, new funding, and related initiatives. RESULTS: Participants viewed the CIRNAC as a reflective parallel network led by indigenous peoples that would identify research priorities within Canada, assess how these priorities align with indigenous patients' cancer care and research needs, and cross-check to see if these priorities align with each other. The network would also advocate for indigenous elders/knowledge holders and community grassroot processes to drive research and training, thus demonstrating the power of the community voice and lived experience in research. In addition, the network would foster research partnerships to investigate alternative indigenous models for cancer prevention, care, treatment, and support. CONCLUSION: The CIRNAC evolved as a viable vehicle to address cancer with, for, and by indigenous peoples. The network is guided by a preamble, a set of aims, and an inclusion engagement circle model. It is evolving through major world initiatives, with the aim of formally becoming an internationally linked national network.

"Nothing About Us, without Us." How Community-Based Participatory Research Methods Were Adapted in an Indigenous End-of-Life Study Using Previously Collected Data.

La recherche en santé autochtone au Canada a été négligée dans le passé et qualifiée de problématique, notamment en raison du manque de collaboration avec les peuples autochtones. L'Énoncé de politique des trois Conseils sur l'éthique de la recherche avec des êtres humains décrit au chapitre 9 la conduite éthique de la recherche axée sur les Premières nations, les Inuits et les Métis. Les principes PCAP® des Premières nations (propriété, contrôle, accès et possession) soulignent l'importance majeure de l'engagement et de la gouvernance autochtones. En vue d'assurer que les buts et les activités de la recherche développée soient réalisés en partenariat complet et significatif avec les peuples et les communautés autochtones, il est possible de faire appel à des méthodes de recherche participative communautaire (RPC) intégrant leur plein engagement. Les recherches utilisant des ensembles de données secondaires, telles que les données administratives sur la santé recueillies en routine, ne devraient plus être exclues de cette approche. Notre objectif était de décrire comment notre équipe de chercheurs universitaires, alliée à un organisme national de santé autochtone, a adapté les méthodes de RPC dans le cadre d'un projet de recherche utilisant des données recueillies antérieurement pour examiner les lacunes dans la prestation de soins de fin de vie aux peuples autochtones en Ontario. Nous décrivons le processus d'élaboration de ce partenariat de recherche et expliquons comment l'intégration des principes de base et des processus de formation du savoir autochtones ont guidé cette collaboration. Notre partenariat de recherche, qui implique l'adaptation de méthodes de RPC, illustre un processus d'engagement qui pourrait guider d'autres chercheurs désirant mener des recherches en santé autochtone à l'aide de données déjà recueillies. Nous faisons aussi état d'une entente de recherche transparente, négociée équitablement entre un organisme national de santé autochtone et des chercheurs, qui pourrait servir de cadre pour des collaborations de recherche similaires. Il est essentiel de s'assurer que les perspectives autochtones soient au cœur des processus de recherche et qu'elles soient reflétées dans ceux-ci lorsque des données administratives sur la santé sont utilisées.Indigenous health research in Canada has a chequered past and has been identified as problematic and lacking in appropriate collaboration with Indigenous people. The Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans, Chapter 9 describes ethical conduct of research regarding First Nations, Inuit, and Métis Peoples. First Nations Ownership, Control, Access, and Possession (OCAP®) Principles highlight the necessity of Indigenous engagement and governance. To ensure that the aims and activities of the research being developed are in full and meaningful partnership with Indigenous peoples and communities, community-based participatory research (CBPR) methods provide a process in which full engagement is possible. Research utilizing secondary data sets, such as routinely collected health administrative data, should no longer be excluded from this approach. Our aim was to describe how our research team of academic researchers and a national Indigenous health organization adapted CBPR methods in a research project using previously collected data to examine end-of-life health care service delivery gaps for Indigenous people in Ontario. We describe the process of how we developed our research partnership and how grounding principles and Indigenous ways of knowing guided our work together. Through the adaptation of CBPR methods, our research partnership illustrates a process of engagement that can guide others hoping to conduct Indigenous health research using previously collected data. We also present a transparent research agreement negotiated equally by a national Indigenous health organization and research scientists, which can also be used as a framework for others wishing to establish similar research partnerships. Ensuring that Indigenous perspectives are central to and reflected in the research process is essential when using health administrative data.

Barriers, supports, and effective interventions for uptake of human papillomavirus- and other vaccines within global and Canadian Indigenous peoples: a systematic review protocol.

BACKGROUND: Despite the existence of human papilloma virus (HPV) vaccines with demonstrated safety and effectiveness and funded HPV vaccination programs, coverage rates are persistently lower and cervical cancer burden higher among Canadian Indigenous peoples. Barriers and supports to HPV vaccination in Indigenous peoples have not been systematically documented, nor have interventions to increase uptake in this population. This protocol aims to appraise the literature in Canadian and global Indigenous peoples, relating to documented barriers and supports to vaccination and interventions to increase acceptability/uptake or reduce hesitancy of vaccination. Although HPV vaccination is the primary focus, we anticipate only a small number of relevant studies to emerge from the search and will, therefore, employ a broad search strategy to capture literature related to both HPV vaccination and vaccination in general in global Indigenous peoples. METHODS: Eligible studies will include global Indigenous peoples and discuss barriers or supports and/or interventions to improve uptake or to reduce hesitancy, for the HPV vaccine and/or other vaccines. Primary outcomes are documented barriers or supports or interventions. All study designs meeting inclusion criteria will be considered, without restricting by language, location, or data type. We will use an a priori search strategy, comprised of key words and controlled vocabulary terms, developed in consultation with an academic librarian, and reviewed by a second academic librarian using the PRESS checklist. We will search several electronic databases from date of inception, without restrictions. A pre-defined group of global Indigenous websites will be reviewed for relevant gray literature. Bibliographic searches will be conducted for all included studies to identify relevant reviews. Data analysis will include an inductive, qualitative, thematic synthesis and a quantitative analysis of measured barriers and supports, as well as a descriptive synthesis and quantitative summary of measures for interventions. DISCUSSION: To our knowledge, this study will contribute the first systematic review of documented barriers, supports, and interventions for vaccination in general and for HPV vaccination. The results of this study are expected to inform future research, policies, programs, and community-driven initiatives to enhance acceptability and uptake of HPV vaccination among Indigenous peoples. SYSTEMATIC REVIEW REGISTRATION: PROSPERO Registration Number: CRD42017048844.

Indigenous people's experiences at the end of life.

OBJECTIVE: The primary purpose of this metasynthesis study was to explore the end-of-life experiences of Indigenous peoples by synthesizing the findings of qualitative research. METHOD: Sandelowski and Barroso's methodology for synthesizing qualitative research was used and included (a) a comprehensive search, (b) appraising reports of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. Research team members guided this process. This team was multidisciplinary and included Indigenous and non-Indigenous researchers from Canada, Australia, New Zealand, and the United States. Following a comprehensive search, 2255 studies were reviewed and assessed against five inclusion criteria: (a) studies on the experiences of Indigenous populations (all genders, 18 + years of age) at the end of life, (b) studies published in English from any country, (c) studies using qualitative and mixed-methods designs, and (d) studies published between 1993 and 2013. RESULTS: Some 18 studies met the inclusion criteria, and their findings were synthesized. "Preparing the spirit" for transition to the next life was the overarching theme. "Preparing the spirit" occurred within the context of "where we come from." Processes involved in "preparing the spirit" were healing, connecting, and protecting; through these processes, "what I want at the end of life" was realized. Although not the focus of the metasynthesis, a significant finding was that the studies reviewed identified very clear barriers within healthcare systems and current healthcare provider practices to "preparing the spirit." SIGNIFICANCE OF RESULTS: The findings provide a beginning understanding of the end-of-life experiences of Indigenous peoples and a foundation for future research. More interpretive qualitative research is critical if palliative care services, the healthcare system, and healthcare providers are to reduce current barriers to "preparing the spirit" for the journey at the end of life.

Parents' experiences of midwife-managed care following the loss of a baby in a previous pregnancy.

AIMS OF THE STUDY: This article reports on research that explored the impact of the Special Delivery Service, a midwife-managed intervention, developed as an addition to routine care to support and educate high-risk pregnant women and their partners subsequent to the death of a baby in a previous pregnancy. BACKGROUND: Approximately 40,000 families suffer the trauma of a neonatal death* annually in the USA, while statistics for Canada and Australia give similar numbers relative to population. Since many more babies die than those accounted for in these statistics, through stillbirth, miscarriage and Sudden Infant Death Syndrome, more than the above-cited 2% of childbearing couples will face the trauma of the loss of a baby. RATIONALE: The resultant threat that this situation may pose to the health of the mother has been extensively documented in the literature. However, despite the recent growth in knowledge about the impact of perinatal loss and bereavement, few interventions are specifically designed to support Australian and Canadian women and their partners during a pregnancy following the loss of a baby. METHODOLOGY: This phenomenological study explored women's and their partners' experiences of grief and loss and the support offered to them through the Special Delivery Service programme. RESULTS & DISCUSSION: In the face of funding and organizational changes to both the Australian and Canadian health care systems that have eliminated or reduced some services, this research reinforced the need for individualized, compassionate midwifery care and the urgent need for genuinely empathic and supportive health care services for these women and their partners. It also emphasized the need for couples to be informed and supported so that gender differences in grieving do not become a divisive element in the relationship. CONCLUSIONS: The findings have implications for both nurses and midwives in their practice in countries where optimum care of this vulnerable population is not routinely available. The research supports midwife-managed models of care to ensure women and their families are appropriately supported in crisis. The findings provide insight also into the diverse grief response among couples and the difficulties experienced in a pregnancy following the loss of a baby.