Dataset Information

Barriers to Accessing Kidney Transplantation Among Populations Marginalized by Race and Ethnicity in Canada: A Scoping Review Part 1-Indigenous Communities in Canada.

ABSTRACT:

Background

Kidney transplantation (KT), a treatment option for end-stage kidney disease (ESKD), is associated with longer survival and improved quality of life compared with dialysis. Inequities in access to KT, and specifically, living donor kidney transplantation (LDKT), have been documented in Canada along various demographic dimensions. In this article, we review existing evidence about inequitable access and barriers to KT and LDKT for patients from Indigenous communities in Canada.

Objective

To characterize the current state of literature on access to KT and LDKT among Indigenous communities in Canada and to answer the research question, "what factors may influence inequitable access to KT among Indigenous communities in Canada."

Eligibility criteria

Databases and gray literature were searched in June and November 2020 for full-text original research articles or gray literature resources addressing KT access or barriers in Indigenous communities in Canada. A total of 26 articles were analyzed thematically.

Sources of evidence

Gray literature and CINAHL, OVID Medline, OVID Embase, and Cochrane databases.

Charting methods

Literature characteristics were recorded and findings which described rates of and factors that influence access to KT were summarized in a narrative account. Key themes were subsequently identified and synthesized thematically in the review.

Results

Indigenous communities in Canada experience various barriers in accessing culturally safe medical information and care, resulting in inequitable access to KT. Barriers include insufficient incorporation of Indigenous ways of knowing and being in information dissemination and care for ESKD and KT, spiritual concerns, health beliefs, logistical hurdles to accessing care, and systemic mistrust resulting from colonialism and systemic racism.

Limitations

This review included studies that used various methodologies and did not assess study quality. Data on Indigenous status were not reported or defined in a standardized manner. Indigenous communities are not homogeneous and views on organ donation and KT vary by individual.

Conclusions

Our scoping review has identified potential barriers that Indigenous communities may face in accessing KT and LDKT. Further research is urgently needed to better understand barriers and support needs and to develop strategies to improve equitable access to KT and LDKT for Indigenous populations in Canada.

SUBMITTER: El-Dassouki N

PROVIDER: S-EPMC7934025 | biostudies-literature | 2021

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Barriers to Accessing Kidney Transplantation Among Populations Marginalized by Race and Ethnicity in Canada: A Scoping Review Part 1-Indigenous Communities in Canada.

El-Dassouki Noor N Wong Dorothy D Toews Deanna M DM Gill Jagbir J Edwards Beth B Orchanian-Cheff Ani A Smith Mary M Neves Paula P Marshall Lydia-Joi LJ Mucsi Istvan I

Canadian journal of kidney health and disease 20210303

<h4>Background</h4>Kidney transplantation (KT), a treatment option for end-stage kidney disease (ESKD), is associated with longer survival and improved quality of life compared with dialysis. Inequities in access to KT, and specifically, living donor kidney transplantation (LDKT), have been documented in Canada along various demographic dimensions. In this article, we review existing evidence about inequitable access and barriers to KT and LDKT for patients from Indigenous communities in Canada. ...[more]

PMID: 33738107

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Project description:BackgroundKidney transplantation (KT), a treatment option for end-stage kidney disease (ESKD), is associated with longer survival and improved quality of life compared with dialysis. Inequities in access to KT, and specifically, living donor kidney transplantation (LDKT), have been documented in Canada, along various demographic dimensions. In this article, we review existing evidence about inequitable access to KT and LDKT for patients from communities marginalized by race and ethnicity in Canada.ObjectiveTo characterize the currently published data on rates of KT and LDKT among East Asian, South Asian, and African, Caribbean, and Black (ACB) Canadian communities and to answer the research question, "what factors may influence inequitable access to KT among East Asian, South Asian, and ACB Canadian communities?."Eligibility criteriaDatabases and gray literature were searched in June and November 2020 for full-text original research articles or gray literature resources addressing KT access or barriers in East Asian, South Asian, and ACB Canadian communities. A total of 25 articles were analyzed thematically.Sources of evidenceGray literature and CINAHL, OVID Medline, OVID Embase, and Cochrane databases.Charting methodsLiterature characteristics were recorded and findings which described rates of and factors that influence access to KT were summarized in a narrative account. Key themes were subsequently identified and synthesized thematically in the review.ResultsEast Asian, South Asian, and ACB communities in Canada face barriers in accessing culturally appropriate medical knowledge and care and experience inequitable access to KT. Potential barriers include gaps in knowledge about ESKD and KT, religious and spiritual concerns, stigma of ESKD and KT, health beliefs, social determinants of health, and experiences of systemic racism in health care.LimitationsThis review included literature that used various methodologies and did not assess study quality. Data on ethnicity and race were not reported or defined in a standardized manner. The communities examined in this review are not homogeneous and views on organ donation and KT vary by individual.ConclusionsOur review has identified potential barriers for communities marginalized by race and ethnicity in accessing KT and LDKT. Further research is urgently needed to better understand the barriers and support needs of these communities, and to develop strategies to improve equitable access to LDKT for the growingly diverse population in Canada.

Project description:IntroductionIn 2001, 50%-55% of French-speaking minority communities did not have access to health services in French in Canada. Although Canada is officially a bilingual country, reports indicate that many healthcare services offered in French in Anglophone provinces are insufficient or substandard, leading to healthcare discrepancies among Canada's minority Francophone communities.ObjectivesThe primary aim of this scoping systematic review was to identify existing gaps in HIV-care delivery to Francophone minorities living with HIV in Canada.Study designScoping systematic review.Data sourcesSearch for studies published between 1990 and November 2019 reporting on health and healthcare in Francophone populations in Canada. Nine databases were searched, including Medline, Cumulative Index to Nursing and Allied Health Literature, the Cochrane Library, the National Health Service Economic Development Database, Global Health, PsychInfo, PubMed, Scopus and Web of Science.Study selectionEnglish or French language studies that include data on French-speaking people with HIV in an Anglophone majority Canadian province.ResultsThe literature search resulted in 294 studies. A total of 230 studies were excluded after duplicates were removed. The full texts of 43 potentially relevant papers were retrieved for evaluation and data extraction. Forty-one studies were further excluded based on failure to meet the inclusion criteria leaving two qualitative studies that met our inclusion criteria. These two studies reported on barriers on access to specialised care by Francophone and highlighted difficulties experienced by healthcare professionals in providing quality healthcare to Francophone patients in Ontario and Manitoba.ConclusionThe findings of this scoping systematic review highlight the need for more HIV research on linguistic minority communities and should inform health policymaking and HIV/AIDS community organisations in providing HIV care to Francophone immigrants and Canadians.

Project description:Background: Multiple factors, including experiences with unethical research practices, have made some Indigenous groups in the United States and Canada reticent to participate in potentially beneficial health-related research. Yet, Indigenous peoples have also expressed a willingness to participate in research when certain conditions related to the components of data management-including data collection, analysis, security and storage, sharing, dissemination, and withdrawal-are met. A scoping review was conducted to better understand the terms of data management employed in health-related research involving Indigenous communities in the United States and Canada. Methods: PubMed, Embase, PsychINFO, and Web of Science were searched using terms related to the populations and topics of interest. Results were screened and articles deemed eligible for inclusion were extracted for content on data management, community engagement, and community-level research governance. Results: The search strategy returned 734 articles. 31 total articles were extracted, of which nine contained in-depth information on data management and underwent detailed extraction. All nine articles reported the development and implementation of data management tools, including research ethics codes, data-sharing agreements, and biobank access policies. These articles reported that communities were involved in activities and decisions related to data collection (n=7), data analysis (n=5), data-sharing (n=9), dissemination (n=7), withdrawal (n=4), and development of data management tools (n=9). The articles also reported that communities had full or shared ownership of (n=5), control over (n=9), access to (n=1), and possession of data (n=5). All nine articles discussed the role of community engagement in research and community-level research governance as means for aligning the terms of data management with the values, needs, and interests of communities. Conclusions: There is need for more research and improved reporting on data management in health-related research involving Indigenous peoples in the United States and Canada. Findings from this review can provide guidance for the identification of data management terms and practices that may be acceptable to Indigenous communities considering participation in health-related research.

Project description:ImportanceRace-based discrimination represents an ongoing public health crisis in the US, manifested by wide-ranging disparities in youth health, mental health, and violence exposure. However, studies of racial discrimination often neglect experiences of identity-based bullying (IBB) stemming from other marginalized identities, such as gender identity and sexual orientation.ObjectiveTo examine associations between experiences of IBB based on race/ethnicity/national origin and other social identities and youth health, mental health, and violence outcomes.Design, setting, and participantsThis cross-sectional study analyzed responses from an anonymous survey conducted at 13 public high schools in Pittsburgh, Pennsylvania, between October 15, 2018, and October 19, 2018. Participants included in the study were in the 9th through 12th grades. Data were analyzed from October 15, 2020, to February 14, 2021.ExposuresExperiences of bullying and bullying perpetration based on race/ethnicity/national origin and other social identities (ie, gender identity, sexual orientation, religion, physical or mental disability, immigration status, other unspecified reason).Main outcomes and measuresYouth health (delayed well care; forgone medical care; physical, mental, or emotional limitations), mental health (nonsuicidal self-injury, suicidal ideation), and violence involvement (weapon perpetration or survivorship, fighting, sexual assault, adolescent relationship abuse, experiencing homicide of friend or family member) were assessed using self-reported items modeled on the Centers for Disease Control and Prevention Youth Risk Behavior Survey.ResultsAmong 3939 participants, the mean (SD) age was 15.7 (1.3) years; 1380 students (36.3%) identified as Black/African American, 2086 (53.7%) as assigned female at birth, 1021 (32.6%) as belonging to a sexual minority group, and 313 (10.0%) as gender diverse. Among reported social identities, race/ethnicity-based experiences of bullying (375 students [9.5%]) and bullying perpetration (209 students [5.8%]) were the most common. Youth with multiple stigmatized identities experienced even higher rates of experiences of IBB and IBB perpetration. Specifically, the highest rates of IBB were reported by gender diverse Black and Hispanic youth. Experiencing IBB based on multiple stigmatized identities was associated with all outcomes, including delayed well care (aOR, 1.41; 95% CI, 1.20-1.65), forgone medical care (aOR, 1.64; 95% CI, 1.44-1.87), nonsuicidal self-injury (aOR, 2.86; 95% CI, 2.53-3.24), suicidal ideation (aOR, 2.49; 95% CI, 2.20-2.83), and greater violence involvement (experiencing violence: aOR, 2.90; 95% CI, 2.45-3.43; homicide survivorship: aOR, 1.19; 95% CI, 1.06-1.33).Conclusions and relevanceThese results further encourage the development of youth health, mental health, and violence prevention programs that address experiences of bullying based on multiple marginalized identities.

Project description:BackgroundA growing amount of health research uses social media data. Those critical of social media research often cite that it may be unrepresentative of the population; however, the suitability of social media data in digital epidemiology is more nuanced. Identifying the demographics of social media users can help establish representativeness.ObjectiveThis study aims to identify the different approaches or combination of approaches to extract race or ethnicity from social media and report on the challenges of using these methods.MethodsWe present a scoping review to identify methods used to extract the race or ethnicity of Twitter users from Twitter data sets. We searched 17 electronic databases from the date of inception to May 15, 2021, and carried out reference checking and hand searching to identify relevant studies. Sifting of each record was performed independently by at least two researchers, with any disagreement discussed. Studies were required to extract the race or ethnicity of Twitter users using either manual or computational methods or a combination of both.ResultsOf the 1249 records sifted, we identified 67 (5.36%) that met our inclusion criteria. Most studies (51/67, 76%) have focused on US-based users and English language tweets (52/67, 78%). A range of data was used, including Twitter profile metadata, such as names, pictures, information from bios (including self-declarations), or location or content of the tweets. A range of methodologies was used, including manual inference, linkage to census data, commercial software, language or dialect recognition, or machine learning or natural language processing. However, not all studies have evaluated these methods. Those that evaluated these methods found accuracy to vary from 45% to 93% with significantly lower accuracy in identifying categories of people of color. The inference of race or ethnicity raises important ethical questions, which can be exacerbated by the data and methods used. The comparative accuracies of the different methods are also largely unknown.ConclusionsThere is no standard accepted approach or current guidelines for extracting or inferring the race or ethnicity of Twitter users. Social media researchers must carefully interpret race or ethnicity and not overpromise what can be achieved, as even manual screening is a subjective, imperfect method. Future research should establish the accuracy of methods to inform evidence-based best practice guidelines for social media researchers and be guided by concerns of equity and social justice.

Project description:BackgroundMany Indigenous communities across the USA and Canada experience a disproportionate burden of health disparities. Effective programs and interventions are essential to build protective skills for different age groups to improve health outcomes. Understanding the relevant barriers and facilitators to the successful dissemination, implementation, and retention of evidence-based interventions and/or evidence-informed programs in Indigenous communities can help guide their dissemination.PurposeTo identify common barriers to dissemination and implementation (D&I) and effective mitigating frameworks and strategies used to successfully disseminate and implement evidence-based interventions and/or evidence-informed programs in American Indian/Alaska Native (AI/AN), Native Hawaiian/Pacific Islander (NH/PI), and Canadian Indigenous communities.MethodsA scoping review, informed by the York methodology, comprised five steps: (1) identification of the research questions; (2) searching for relevant studies; (3) selection of studies relevant to the research questions; (4) data charting; and (5) collation, summarization, and reporting of results. The established D&I SISTER strategy taxonomy provided criteria for categorizing reported strategies.ResultsCandidate studies that met inclusion/exclusion criteria were extracted from PubMed (n = 19), Embase (n = 18), and Scopus (n = 1). Seventeen studies were excluded following full review resulting in 21 included studies. The most frequently cited category of barriers was "Social Determinants of Health in Communities." Forty-three percent of barriers were categorized in this community/society-policy level of the SEM and most studies (n = 12, 57%) cited this category. Sixteen studies (76%) used a D&I framework or model (mainly CBPR) to disseminate and implement health promotion evidence-based programs in Indigenous communities. Most highly ranked strategies (80%) corresponded with those previously identified as "important" and "feasible" for D&I The most commonly reported SISTER strategy was "Build partnerships (i.e., coalitions) to support implementation" (86%).ConclusionD&I frameworks and strategies are increasingly cited as informing the adoption, implementation, and sustainability of evidence-based programs within Indigenous communities. This study contributes towards identifying barriers and effective D&I frameworks and strategies critical to improving reach and sustainability of evidence-based programs in Indigenous communities.Registration numberN/A (scoping review).

Project description:BackgroundGlobally, there are disparities in access to maternal health care services and equity in maternal health outcomes between Indigenous and non-Indigenous populations. While the literature is growing, it has not been systematically synthesized. This review addresses this gap by synthesizing the existing literature on the organizational structure of maternity care, accessibility and delivery of services, and clinical disparities impacting Indigenous maternal health within Canada. It also identifies current knowledge gaps in research on these topics.MethodsA scoping review was completed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement guidelines and the extension for scoping reviews. The search for relevant papers was performed in PubMed, CINAHL, and SCOPUS electronic databases and included any empirical literature written in English and published during 2006 - 2021. The research team inductively coded 5 articles to develop a coding scheme, which was then applied to the remaining articles.ResultsA total of 89 articles were included in the review, of which 32 were qualitative papers, 40 quantitative, 8 were mixed-methods publications, and 9 were review papers. The analysis of the articles resulted in identifying a range of overarching themes pertaining to the maternal health of Indigenous women within Canada including provision of services, clinical issues, education, health disparities, organization, spatial context, and impact of informal support. The results suggest that physical, psychological, organizational, and systemic barriers inhibit the quality-of-care pregnant Indigenous women receive, and that maternal health services are not consistently provided in a culturally safe manner. Results also suggest that, compared to non-Indigenous pregnant women, Indigenous women are more likely to develop clinical complications during pregnancy, reflecting the structural impacts of colonization that continue to negatively influence Indigenous maternal health and well-being.ConclusionsThere are many complex barriers that prevent Indigenous women from receiving high quality and culturally appropriate maternal care. Possible areas that could address the service gaps illuminated through this review include the implementation of cultural considerations across health care jurisdictions within Canada.

Dataset Information

Barriers to Accessing Kidney Transplantation Among Populations Marginalized by Race and Ethnicity in Canada: A Scoping Review Part 1-Indigenous Communities in Canada.

Background

Objective

Eligibility criteria

Sources of evidence

Charting methods

Results

Limitations

Conclusions

Publications

Barriers to Accessing Kidney Transplantation Among Populations Marginalized by Race and Ethnicity in Canada: A Scoping Review Part 1-Indigenous Communities in Canada.

Similar Datasets

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