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"Certain Circumstances" Issues in Equity and Responsiveness in Access to Health Care in Canada

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A collection of papers and reports prepared for Health Canada
2001
ISBN: 0-662-32047-6
Cat. No.: H39-618/2002E

Contents

Foreword

Accessibility is among the five principles that are fundamental to Canada's health care system, as described in the Canada Health Act.

But what is accessibility? What is reasonable access? And when we say "health care services", what services are meant? Traditional medical care alone, or care from health professionals other than physicians?

What groups of Canadians are not having their health care needs met? How best to try to serve them? What changes are necessary to health care policy, the delivery of health care services and the training of health professionals?

These and many other questions are explored by the authors of several papers prepared for the Health Care System Division of the Health Policy and Communications Branch of Health Canada, and by the participants of seminars and workshops sponsored by Health Canada.

The fact is that while Canada ranks among the top nations in the world in terms of the standards of health, this high standard is not shared equally by all sectors of Canadian society.

The use of health services in Canada is not generally affected by financial barriers such as income. "Nevertheless," wrote the Federal, Provincial and Territorial Committee on Population Health in its second report on the health of Canadians, "there appear to be persistent language and cultural barriers to the provision and/or the utilization of services in certain circumstances."

Health services-and the barriers to access of these services-function as determinants of health. When health systems fail to provide equitable care, or equitable access to care, they may worsen social disparities and be a factor in lowered health status.

In 1999, the Health Care System Division of Health Canada undertook an exploration of the issue of equity and responsiveness in terms of access to health care services in Canada. Abridged versions of papers and summary reports of seminars or workshops to date are presented in this publication, and a summary of the recommendations made to date follow.

This is but a beginning, however, much research and discussion are needed in the months ahead.

Ottawa, September 2001

The opinions expressed in this publication are those of the author and contributors and do not necessarily reflect the official views or policies of Health Canada.

Permission is granted for non-commercial reproduction related to educational or clinical purposes. Please acknowledge the source.

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Part I Equity in Access to Health Care

Document 1

Access to Health Services for Underserved Populations in Canada

Prepared for: Health Care System Division
Health Policy and Communications Branch
Health Canada, Ottawa, Canada

Adapted from the original, prepared by: Sarah Bowen, B.A., M.Sc.
September 2000

Table of Contents

Document 2

Removing Barriers II Keeping Canadian Values in HealthCare

Excerpted from the report edited by Ralph Masi, MD
May 2000

Table of Contents

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Executive Summary

In 1984 Canada passed the Canada Health Act which stated the "primary objective of Canadian Health Policy is to protect, promote, and restore the physical and mental well-being of residents of Canada and to facilitate reasonable access to health services without financial or other barriers." As a nation, Canada is committed to both health promotion and protection.

Today, Canada ranks well above most other countries in the world in most measures of population health. Canada's system of universal health insurance has overcome financial barriers to access to health care for all citizens. Nevertheless, there are persistent and troubling, inequities in health status. Aboriginal people suffer from chronic diseases such as diabetes more than the general population; infant mortality rates are twice as high among First Nations communities; and Canadians with low literacy skills are more likely to suffer poor health. Immigrants and refugees encounter difficulties in accessing health services as do marginalized groups such as the poor and homeless.

To date, the focus of health policy and research in Canada has been on the removal of financial barriers to access, while other barriers to care have not been well explored. There is evidence of different patterns of health care use by certain populations and recognition that these populations face other, non-financial, barriers.

The underserved populations include Aboriginal people, people who do not speak either of Canada's official languages, people with alternate sexual orientation, immigrants, refugees, ethnically or racially diverse populations, people with disabilities, the homeless, sex trade workers, and people with low incomes.

The term "reasonable access" from the Canada Health Act has not been defined, and there is continuing debate about what services are "medically necessary". Factors such as language or cultural barriers or the inappropriateness of services are recognized as contributing to barriers to access to health care, but have not been subject to a comprehensive examination. Health care service utilization has been used as a measure of access, but this may be problematic in that differences in use may or may not indicate equitable access. The data does, however, show disparities in the use of preventive and screening programs by underserved groups. These disparities indicate that some barriers affect the access to health not simply to health services.

This paper is a review of research related to health service access for underserved groups. A major objective of the report is to propose a framework for describing, categorizing and analyzing the evidence related to underservice of various populations in Canada, with a view to providing a structure for addressing further research needs. The paper focuses on the effect of factors other than income.

The Underserved

While it is acknowledged that certain populations in Canada are underserved, there is no consensus as to what this means. Three concepts are integral to the discussion of service provision to underserved groups: underservice, equity and access.

Underservice, in this paper, means there is an increased likelihood that individuals who belong to a certain population (and people can belong to more than one) may experience difficulties in obtaining needed care, receive less care or a lower standard of care, experience different treatment by health care providers, receive treatment that does not adequately meet their needs, or that they will be less satisfied with health care services than the general population.

An underserved population differs from an underserved region. The issue of service provision for underserved areas is largely one of supply and distribution of service and personnel, while the issues of undeserved populations pertain more to access.

Equity in health means the fair and just distribution of resources. Not everyone receives the same service, or the same number of services, but the service provided is based on need.

Access is more than the availability of services; access assumes that services are provided in a way that is responsive to the needs of the health care system users, and is open to participation in the planning of those services by underserved groups.

Barriers to access can be described in four categories: availability of services, financial barriers, non-financial barriers to presentation of health care needs, and barriers to equitable treatment.

The First Nations and Aboriginal peoples face serious problems. First Nations communities have problems related to availability of some services such as home care or mental health services, however, they may face fewer financial barriers to non-insured services because they are eligible to benefits through the First Nations and Inuit Health Branch. Aboriginal people living off-reserve have the same availability of services as other Canadians but face significant barriers to presentation of need for health care services as well as equitable treatment.

Immigrant populations demonstrate diversity in both health status and access issues. Often, health issues for immigrant and visible minority populations are combined, though different factors may affect access. Generally, newcomers to Canada do not face difficulties with availability of services, but they do encounter barriers to presentation of need. Immigrants may not be familiar with the Canadian system and may not understand what their rights to service are, what the roles of providers are, or what expectations of them are. For many, this gap is exacerbated by a lack of fluency in either English or French. Immigrants have also been shown to underuse preventive services and may be at risk for misdiagnosis and inappropriate treatment. Refugees have another set of special needs. Both immigrant and visible minority clients may face barriers to equitable treatment.

Four populations face barriers due to language: Aboriginal people, immigrants, people who use visual or sign language, and, depending on the location of residence, people who do not speak one of Canada's official languages. Historically, research has focused on general definitions of ethnicity, rather than the specific issue of ability to communicate in the language of the service providers. There is evidence that language itself, not ethnicity or socio-economic factors, may explain many differences in service utilization and health outcomes. Low literacy has been linked to lower health status and differences in access and utilization.

People of alternate sexual orientation come from all sectors of society and, as a group, are not at any greater risk for decreased health status due to socio-economic factors. Nevertheless, their health needs and concerns may differ from those of the heterosexual population. For example, the "coming out" process has been identified as critical for which support is rarely available. The health system has played a role in pathologizing alternate sexual orientation. Research indicates that some individuals may hesitate to seek health care, fearing negative reactions to disclosure; confidentiality is also a key concern.

Persons with disabilities come from all ethnic and cultural groups and they also face diverse barriers to access depending on the type of disability. Physical barriers may prevent the disabled from presenting for care, and a combination of socio-economic factors may present financial barriers. The attitudes of providers often present the greatest barriers.

Populations that are marginalized include the homeless, the mentally ill, street youth, injection drug users and sex trade workers. While these groups have diverse needs, they share similar issues in relation to access to care. Many have multiple risk factors. The homeless, for example, have problems with availability of services; many have no identification or a provincial health plan card, so are unable to access services to which they are entitled.

In spite of the variation in health status and the types of barriers experienced by the various underserved groups, there is a remarkable similarity in many of the concerns identified. Those who belong to more than one underserved group-for example, someone who is poor and female and living in an isolated area-may be described as facing a greater degree of difficulty.

Potential Responses for Improving Access for Underserved Populations

A number of different responses are required to address barriers to care for underserved populations. These responses can be described under three headings: Recruitment and Training, Program Design and Delivery, and, Policy and Structure.

Recruitment includes both preservice and post- training initiatives. There are a number of programs that facilitate access to professional training for members of underserved groups. This strategy is of particular importance for Aboriginal communities. One example of a post-training initiative is the licensing of international medical graduates (IMGs). However, this has been a difficult and controversial area, and this response, in isolation, is not anticipated to have a significant impact on access needs.

Recent studies have indicated that while a number of initiatives to address needs for cultural competence training for health professionals have been introduced, more attention to promoting social accountability of medical schools is required. This is one area that has the potential to improve access for a number of underserved groups. The development of alternate health roles is another strategy that has potential both to address access needs, and to facilitate the participation of members of underserved communities in the health care system.

Academic health centres and other educational institutions play an important role in educating health professionals. There is a potential for a greater role in promotion of diversity training, development of training of alternate health professionals, and promoting research with underserved communities. They could also be given more responsibility for service provision to underserved groups.

Program Design and Delivery initiatives include "linking" programs, population-specific health programs, and telemedicine applications. Linking programs include health interpretation and, community outreach and education programs. Interpretation programs are essential to ensure access to health care for language minorities, however few health jurisdictions have implemented policy requiring professional interpretation services. Community outreach and education programs have an important role in addressing barriers to initial access and in ensuring quality of care. However, they may not address underlying organizational barriers to access. Another response is provision of population specific services. Several innovative programs focusing on Aboriginal people, persons with disabilities, immigrants, or homeless and low-income populations have been developed.

Telemedicine applications show promise in addressing access issues for rural and remote locations. First Nations communities are among those who may experience the most benefit. The National First Nations Telehealth Project is evaluating implementation of a number of telehealth projects now underway. Research related to telemedicine applications indicates good results for both diagnostic accuracy and patient/provider acceptance. However, few studies have addressed issues of cost effectiveness. The potential for telemedicine to address linguistic or cultural barriers or support persons with disabilities has not been well explored.

Issues related to funding and provider payment models have a significant impact on underserved communities. The fee-for-service system has been of limited effectiveness in ensuring population coverage of preventive and screening programs; an area of identified concern for many underserved populations. Community health centres have often demonstrated greater ability to provide service to underserved populations. This is due both to their commitment to community accountability and to greater flexibility in hiring and program design. However, capitation payment systems may present additional access problems for underserved communities unless safeguards are built into the system.

Barriers to organizational access, (the degree to which consumers are represented and participate in planning, research and administration) must be addressed. This includes development of policy related to cultural diversification, flexibility of program delivery models, and implementation of strategies to ensure the participation of underserved communities at the decision-making level.

In spite of the diversity of barriers experienced by underserved populations, many of the responses that are recommended to address these barriers are similar. Many of the strategies are anticipated to result in improved service provision for the general population and have already been identified as priorities through the health reform process.

Rapid changes in the health care delivery system risk creating additional difficulties in access to equitable care for underserved populations. Attention to access issues faced by underserved communities is therefore of particular importance at this time.

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Section 1: Introduction

The intent of this paper is to provide an overview and analysis of the issue of access to, and provision of, health services for underserved populations in Canada. For the purposes of this paper, "underserved populations" are understood to include Aboriginal people, official language minorities, those of alternative sexual orientations (gay, lesbian, bisexual, two-spirited, transgendered, and transsexual) immigrants, refugees, ethnically or racially diverse populations, persons with disabilities, the homeless, sex trade workers, and low income segments of the population. a

Background

Canada ranks well above other countries in most measures of population health. Canada's system of universal health insurance, considered one of the best in the world, has largely addressed financial barriers to access to health care for all citizens. However, persistent and troubling inequities in health status remain (Federal, Provincial and Territorial Advisory Committee on Population Health, 1999). There is also evidence of different patterns of health care use by certain populations and non-financial barriers to access for certain underserved groups.

It is recognized that many factors influence health. These "determinants" of health include living and working conditions, the physical environment, health services, early childhood development, social support, personal health practices and coping skills, and biology and genetic endowment (Federal, Provincial and Territorial Advisory Committee on Population Health, 1994). However, in addition to these factors, gender, culture, and membership in specific population groups also have significant effects on health status (Federal, Provincial and Territorial Advisory Committee on Population Health, 1999).

Understanding the determinants of health has helped explain why certain groups of people are healthier than others, and how the social and economic environment affects health. Initially, this directed attention to the relationship between income and health status, and income and health service utilization. Research on these topics has confirmed that in Canada, use of health services is not related to a person's income (Federal, Provincial and Territorial Advisory Committee on Population Health, 1999).

More recently, we have come to understand that some populations experience more negative effects on their health due not only to lower economic status but also to social factors such as racism, loss of social status and social isolation. These psycho-social factors can exert a powerful influence on physical and mental health, likely a greater effect than material poverty alone. Societies with the greatest disparities have lower health status than societies of similar wealth but where disparities are less (Wilkinson, 1996; Lavis and Stoddart, 1999). This situation spurs us to investigate further the effect of these psycho-social factors on health and the impact of factors other than explicit financial barriers which may affect access to health services.

The purpose of a population health approach is to maintain and improve the health status of the population as a whole, reducing inequities in health status between groups. Reducing inequities in health status will be one the greatest challenges to achieving population health (Federal, Provincial and Territorial Advisory Committee on Population Health, 1999). The recognition of the importance of societal factors in contributing to health and illness has increased awareness that there are limitations to the ability of health care to achieve a healthy population. However, there will always be a need for health services, both to treat the sick and injured, and to provide information and services which prevent disease and promote health. Health services themselves (and access barriers to them) function as important determinants of health. Health systems that fail to provide equitable care have the potential to exacerbate social disparities and contribute to lower health status. To date, the focus of health policy and research in Canada has been the removal of financial barriers to access; other barriers to care have not been well explored.

Scope and Limitations of the Report

This review identified a paucity of published research related to health service access for underserved groups, and a lack of clarity of concepts related to the topic. A major objective of this report will therefore be to propose a framework for describing, categorizing, and analyzing the evidence related to underservice of various populations in Canada, with a view to providing a structure for addressing further research needs.

While recognizing the importance of research related to income and health service access, the paper will focus on the effect of factors other than income. The issue of workforce supply for rural and remote regions is the topic of a companion report and will not be addressed here. However, geographic barriers are not separate and distinct from other barriers to access, but inter-related. Those from underserved populations who happen to live in underserved geographic regions will likely face greater difficulties than those who live in better resourced regions (Ryan et al., 2000; Baker, 1993). The discussion will not be limited to provision of physician and hospital services, but will include other primary care and disease prevention/health promotion activities. Many of these programs and services, necessary components of a comprehensive population health approach, are provided by other health care professionals, or fall outside of the formal health care system.

The literature review draws on a number of sources. Key summary documents (Federal, Provincial and Territorial Advisory Committee on Population Health, 1999; Health Canada, 1999; Kinnon, 1999; Ryan et al., 2000) were important in developing the overview of health status and needs. Also included in the scan was an Internet search of government documents, university research centre publications, key organizations, and reports and abstracts from Metropolis and the Women's Health Centres of Excellence. A data base search through Medline and Healthstar was undertaken, focusing on Canadian research related to Health Services Accessibility. This was supplemented by an expanded search related to key concepts, specific underserved groups, and identified barriers, and by a review of the bibliographies of key resources identified through the initial scan.

Time constraints, and the number of different populations and domains of interest, did not allow for a se arch of additional databases, the opportunity to follow up on all resources, or to contact organizations or researchers directly. As the review found that much of the information on access barriers from the community perspective is found in the "grey" rather than the published literature, many more resources may be available than were identified through this initial scan. The number of populations addressed also limits the ability of this report to capture the complexity of the access issues facing each population, or the interaction between various types of underservice and issues such as gender, income, or place of residence.

The next section will provide a brief discussion of the context of provision of health services in Canada, particularly as it relates to the issues of supply and access, and will further discuss terms and concepts related to access to health care. Section 3 provides an overview of general research issues and methodological limitations related to research on non-financial barriers to access. Section 4 summarizes what is known about various types of underservice in Canada for a number of underserved populations. Finally, in Section 5, potential responses to issues of underservice are reviewed.

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Section 2: Context and Concepts

Context of Health Service Provision

Any health care system is an outgrowth of the political culture, the social and moral values and the economic imperatives of the society it services. One cannot make neat distinctions between the legal, ethical, clinical, political and economic factors which all play a role in shaping the country's health care system. (Canadian Bar Association Task Force on Health Care, 1994:1).

Canada's system of universal health insurance grew out of a commitment to removing financial barriers to health care for all Canadians. The ongoing development of this system, and delivery of services, take place within a political system where responsibility for most health services falls under provincial/territorial jurisdiction, but is supported by the federal government, and directed by the principles of the Canada Health Act (CHA).

Canada provides universal medical coverage to all its citizens under the terms of the Canada Health Act (1984). The Canada Health Act is based on five principles: universality, portability, accessibility, comprehensiveness, and public administration. It states that the "primary objective of Canadian Health Policy is to protect, promote, and restore the physical and mental well-being of residents of Canada and to facilitate reasonable access to health services without financial or other barriers". As a nation Canada is therefore committed both to health promotion and protection (keeping people healthy), and to restoring well-being (treating them when they are not healthy).

However, because access is not defined, it is not clear what would be required to show access was reasonable. Most often access has been defined simply as the absence of explicit financial barriers. Universality requires that 100% of the residents of a province be entitled to insured services on uniform terms and conditions. Comprehensiveness is the requirement that the health insurance plan of a province cover all "insured health services provided by hospitals, medical practitioners or dentists, and where the law of a province so permits, similar or additional services rendered by other health care practitioners." All services "medically necessary for the purpose of maintaining health, preventing disease or diagnosing or treating injury, illness or disability" are included; however, there has been continuing debate about what services are "medically necessary".

"Extended health services", which include home care, nursing home and adult residential care, and ambulatory care service are also included in the Act. However, provinces are not required to provide these services, and some payment for accommodation in residential facilities may be required. At present, availability and coverage of extended health services varies markedly between provinces and territories.

At the time the language of the original legislation was developed (the Canada Health Act was based on two earlier pieces of legislation, the 1957 Hospital Insurance and Diagnostic Services Act and the 1966 Medical Care Act), it was expected that most care would be delivered in hospitals and by physicians. The restriction of insured services to "medically necessary services" provided by hospitals and physicians has skewed subsequent patterns of service delivery in Canada. It has reinforced the position of acute care and institutional services at the expense of community and preventive services, and defined care by who provides it, and where it takes place, rather than whether care is needed (Hurley et al., 1996). While a population health approach results in a focus on providing services in the community and treating sick people at home, this trend has the effect of "off-loading" expenses from the publicly funded system to third party payers or to individuals. Inequities in provision of non-insured services, which include dental services, vision correction, prescription drugs and counselling or mental health services, have been highlighted as an area of growing concern (Federal, Provincial and Territorial Advisory Committee on Population Health, 1999). Canadians who do not have supplementary insurance coverage (through employee plans or social assistance programs, for example) may not be able to afford some services. Some services, such as health outreach or education programs provided outside of the formal health system, are not insured services and so do not fall under the scope of the Act. These initiatives form a crucial component of a comprehensive system that addresses the need to promote and protect, as well as restore, health.

Provincial/Federal Authority

The "Canadian Health System" is not a federal health system; rather, it is a collection of provincial systems. Provinces and territories are responsible for the planning, administration and delivery of health services. However, there is a national plan in that all provincial and territorial plans are linked through adherence to national principles set at a federal level. Provincial and territorial plans must meet certain criteria to qualify for full transfer payments from the federal government. The federal government also retains responsibility for certain populations and health services; two of these are health care to registered First Nations and Inuit people, and to refugee claimants.

Provision of Health Care to Aboriginal People in Canada

The term Aboriginal describes all indigenous peoples of Canada, and includes First Nations peoples (previously referred to as Indians) registered under the Indian Act (Registered Indians), North American Indians not registered under the Indian Act, Inuit and Metis. Aboriginal persons are covered for hospital and medical costs by provincial health insurance plans in the same way as other Canadians. However, registered Indians and Inuit (who are not divided into status or non-status categories) are also eligible for health programs administered by the First Nations and Inuit Health Branch of Health Canada.

Relative responsibilities of the federal and provincial governments are poorly defined. Shared responsibility has been the source of confusion and ongoing debate since the British North America Act defined health care as a provincial responsibility and "general care of Indians" as a federal responsibility. Historically, the federal government has had a special responsibility for health care for A boriginal people. In 1979, the Indian Health Policy established a framework for delivery of Indian and Inuit health programs. This policy acknowledged the "special relationship of Indian people to the federal government'" and recognized the importance of socio-economic, cultural and spiritual development in addressing underlying causes of poor health.

The federal government and Aboriginal peoples disagree on health care as a treaty right. The position of the Assembly of First Nations (AFN) is that health is a treaty right, and an element of First Nations' inherent right to self-government. The AFN also maintains that provision of health services is an area of undefined federal fiduciary obligation. The federal government has agreed to provide health care to First Nations and Inuit people where this would not otherwise be available, which excludes off-reserve Aboriginal peoples from federal health services and programs. Additional services through Health Canada are provided through the First Nations and Inuit Health Branch, and are available only to Registered Aboriginals (not to non-registered Aboriginals or Metis). This has led to disparity in the type and extent of coverage of Aboriginal persons by status.

In 1986, the Health Transfer Program was initiated; the intent was to transfer control of federal Indian health services to First Nations people themselves. Transfer is to occur within the existing legal framework and funding base. As of March 1998, 74% of First Nations communities were involved at some level in the process of transfer, with 31% of these having signed transfer agreements (Health Canada, 1999). The health transfer process places the discussion of health services for First Nations peoples within a different context from that of other communities, and has important implications for the issue of access to health care.

Refugee Claimants

Prior to 1994, refugee claimantsb to Canada were not eligible for heath care coverage, although some provinces had made some arrangements for care. The Interim Federal Health Program, administered by Citizenship and Immigration Canada, is intended to ensure emergency and essential health services for needy refugee claimants and those refugees in Canada who are not yet covered by provincial health plans.

Rights to Access

In the discussion of access to health care by underserved populations, the human rights legislation of a country must also be considered. In Canada there have been few challenges to interpretation of access as simply the absence of explicit financial barriers to health care. Claims involving rights of access to health care are principally based on interpretations of the Canadian Charter of Rights and Freedoms, the Canadian Human Rights Act, provincial human rights acts, and the Canada Health Act. A recent ruling by the Supreme Court of Canada found that absence of communication resulted in substandard care and determined that hospitals were required to provide interpreters for deaf patients (Eldridge v. British Columbia [Attorney General], 1997). There are also requirements that facilities be physically accessible to persons with disabilities.

Cultural Context

The establishment of Canada's system of universal health insurance was part of a larger commitment to social welfare programs. These programs grew out of a philosophy of mutual aid and a willingness to protect the less fortunate. The health system not only removes financial barriers, but also becomes part of the environment of social support.

"Underserved populations" in Canada are a number of different constituencies which experience a range of potential problems with access. They may be served by different organizations and government departments, and may have different rights to access under the law. Even where issues of concern may be similar (e.g. discrimination or language access to health services) there may not be joint action, or consensus on the best solutions by the different constituencies. While the discussion of Aboriginal health services takes place within the context of the right to self determination of First Nations peoples, the issues facing immigrants and refugees are often seen as "newcomer" issues that will resolve with time. Similarly, issues of access of gay, lesbian and bisexual persons, or of persons with disabilities are also often seen as "separate" issues, and of concern to different stakeholders.

The Impact of Health Reform

Canada's health system, like that of most countries, has undergone significant restructuring over the past several years, mainly in response to concerns about escalating health care costs. Actions taken to contain costs have resulted in concerns about equity, concerns that resource allocations should be made consistent with the needs of populations, and concerns that inequitable distribution of health care resources is resulting in geographically remote and socially disadvantaged groups having less access to appropriate care.

Many provinces have undertaken commissions to review health care systems. A number of recurring themes have emerged from such reviews. These include: broadening the definition of health; shifting the emphasis from curing illness to health promotion and disease prevention and from institutional to community care; increasing opportunities for participation of consumers; regionalization; improved human resource planning (with an emphasis on alternative remuneration for physicians); increased coordination of services,; increased funding for health services research; and evidence based decision making (Mhartre and Debber, 1992; Hutchinson and Abelson, 1996; Closson and Catt, 1996).

Responding to these issues may improve service to underserved populations, but the issue of access has not been addressed. Issues of concern to diverse and disadvantaged groups may in fact be lost in the restructuring process. For example, regionalization, (the devolution of care to smaller health authorities), has been proposed as a potential benefit to vulnerable populations. By moving decision making closer to the health care user, in theory, services should become more responsive to local needs. However, there are several challenges.

  • Underserved populations have not traditionally been adequately represented in decision making structures.
  • Data collection systems do not collect data in a way which assists in identifying or measuring needs of underserved groups.
  • There is an inadequate research base on non-financial access barriers, or needs of underserved groups, resulting in neglect of these issues in planning.
  • Traditional funding patterns have resulted in
  • "access" services being excluded from core funding.
  • A cost containment emphasis results in reluctance to identify need for additional programs.
  • Effects of health care restructuring have focused public concern and planning responses on what are perceived to be more pressing issues (e.g., waiting lists, hospital closures).

A major emphasis in heath reform has been to ensure that health care costs can be maintained at sustainable levels. Adoption of a population health approach has focused attention to the need to shift the emphasis within current services towards prevention, shift funding within the system to more "upstream" services, and to address the underlying causes of ill health. In reality, however, many community-based programs focusing on disease prevention and health promotion have experienced the same financial cutbacks as acute care services. These programs, which provide services such as health interpretation or preventive health education, play a leading role in facilitating access for underserved gr ou ps.

It is not clear how emerging concerns about general health access (waiting lists, private clinics, early hospital discharge, or access to home care services) may affect populations who are already considered underserved. However, because membership in many such groups is correlated with lower economic status (and/or lower levels of social support), it is to be expected that these populations may bear a disproportionate burden of any decreased availability of service.

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Defining Access and Underservice

While there is widespread recognition that certain populations within Canadian society are underserved, there is no consensus on what this means. Three concepts that are integral to the discussion of service provision to underserved groups are "underservice", "equity" and "access".

Defining Underservice

Underservice is defined by various writers in different ways, and may be used to describe problems with service availability, service access, or the quality of treatment obtained. In this paper, underservice refers to an increased likelihood that individuals will, because of their membership in a certain population: experience difficulties in obtaining needed care; receive less, or a lower standard of care; experience differences in treatment by health personnel; receive treatment that does not adequately recognize their needs; or, be less satisfied with health care services.

Many underserved populations share the characteristics of lower income and social disadvantage. The evidence for the effect of these determinants on health status has been the subject of extensive study and will not be the focus of discussion here. However, underserved populations cannot be defined by low income alone. Some underserved populations (e.g. the homeless) are not only poor, but of low social status. They may present with health conditions which are not as well managed by the formal health system (e.g. mental health disorders or substance use). They are at risk for decreased health status, and are likely to face non-financial barriers to health care access as well as discriminatory treatment within society as a whole and the health system. Members of other groups (such as visible minorities, gay, lesbian and bisexual) may face inequitable treatment by the health care system, even if they are not of low economic status. Not all members of underserved groups are poor or less educated, indicating the importance of other barriers that may be independent of socioeconomic factors.

A person may share characteristics with one or several groups defined as underserved. People of lower socioeconomic status and who are underserved for some other reason are further jeopardized. The provision of basic insured services in Canada does not appear related to income, but there are "persistent language and cultural barriers to the provision and/or the utilization of services in certain circumstances." (Federal, Provincial and Territorial Advisory Committee on Population Health, 1999, p.145) The interaction between these factors may present further barriers to equitable care.

Underserved Populations and Underserved Regions

Addressing inequities experienced by underserved populations is a fundamentally different issue than ensuring equitable distribution of the "same" resources across geographic regions. The issue of service provision for "underserved areas" is by and large an issue of supply and distribution of health personnel and services, while the issues facing underserved populations are more a problem of access. Underservice due to geographic location, and underservice due to membership in a specific population differ in a number of ways: the factors contributing to the problem of underservice, the actual problems of "access" which result, strategies for measuring need, the scope of effect of the access barriers, and potential solutions.

Defining Equity

Equity in health refers to the fair and just distribution of resources. The concept of equity differs from that of equality; the measure of health care equity is not that every one receives the same service, or the same number of services, but that the service provided is based on need. In Canada, equity is generally described as "equal access (or equal service) for equal need". It is recognized that those who are sicker, or face greater risk to health, should receive a greater intensity of service, and it follows that lower income groups should receive more services. While care in Canada is related to need, not income, the question has been raised as to how much more care those of lower health status should receive compared to those in better health. Some writers have suggested that while more services are provided to those at the lowest income level, the differential does not necessarily correspond with observed differences in health status (Roos et al., 1999). More research is needed in this area.

Simply providing equal service for equal need may not be sufficient to achieve equity. This is best illustrated by example. If an institution is responsible for food service provision, equality is achieved if all consumers receive the same quantity and quality of food. However, if the menu is steak and some of the consumers are vegetarians, equal service is not equitable service, which most would agree would involve the provision of a quality vegetarian meal.

Defining Access

Access is another concept that has received various interpretations by policy makers, researchers, and the general public (Birch and Abelson, 1993). The Oxford dictionary defines accessibility as "capable of being used, entered or reached", and as "open to the influence of ". This implies that access is more than the availability of services. It assumes provision of services in a way that is both responsive to the needs of users and open to the participation in planning of services by underserved groups.

"Barriers to access" can relate to client access (the degree to which individuals are able to secure needed services), and to organizational access (the extent to which consumers are represented and/or participate in the planning, development, delivery and administration of services (Doyle and Visano, 1987). With the exception of initiatives to transfer control and administration of health services to First Nations communities, and the Independent Living movement, discussion on access for underserved populations tends to focus on issues of client, rather than organizational access.

In the literature, access is variously defined as "availability of service", "use of health care by individuals with a need for care" (Waters, 2000), or "equal quality of care received". In regard to distribution of physician and hospital services, reasonable access is generally understood to mean equal access for equal need, and the absence of explicit financial barriers. The focus on explicit financial barriers to care, and by extension, on utilization of care related to income status, has resulted in neglect of other potential factors, which may impair access. It has been observed that "lack of attention to other non-price factors that might be expected to influence the demand for and/or the supply of care appears to imply that service provision free at the point of delivery is a sufficient condition for "reasonable access" to services." (Birch et al., 1996, p.6.) However, there has been increasing awareness that "accessibility" must be defined more broadly than this. For example, the Panel on Health Goals for Ontario (1987) stated:

"All residents of Ontario have the right to high quality, accessible, appropriate and comprehensive health services independent of age, gender, level of functional ability, language, ethnocultural origin or geographical location. ... Accessibility should be understood to include psychological, social, emotional and economic aspects" (p. 87).

Historically, the focus has been on providing equal access to treatment; the adoption of a population health approach, however, means we need to look at the importance of barriers to assessment (Culyer, 1991). If barriers reduce the likelihood that certain populations can be assessed and receive an accurate diagnosis, then provision of treatment on an equitable basis once a need is identified is insufficient.

Physician and hospital services are the core insured services in Canada, and the focus of measures of access and equity. The most common focal point for delivery of health services in Canada is the family physician. These primary care physicians also function in the important role as "gatekeepers" to other health services including specialist and hospital care. The population health approach suggests that while important, access to physicians or hospitals alone may not be an adequate measure of service access. Key preventive, continuing care, and education/support services are provided in the community and by other health professionals and organizations. Access to these services must also be considered in any comprehensive review of access.

Mooney et al. (1991) observe that in Canada, it is not clear whether the objective of equity relates to utilization or access. There is confusion then about whether equity is defined by receipt of care, or by opportunity to utilize care (access). In the discussion of equity and access, it is important to consider that the purpose of health policy is not to provide health services but to achieve the best possible health of the population. The ultimate goal then is access to health, not simply access to health services.

Equitable access can then be defined as provision of health services in a way that provides an equal opportunity for all citizens to achieve maximum health. The following section outlines a framework for discussion of factors that may act as barriers to this goal.

A Framework for Describing Access and Access Barriers

This section provides a framework for categorizing the various types of difficulties experienced by underserved populations in accessing health care services. These difficulties (or barriers) can be described in the following categories: availability of services; financial barriers; non-financial barriers to presentation of need; and, equitable quality of care.

Availability of Services

One aspect of access is availability of service. Individuals may not have "access" because:

  • a health service may be unavailable because it is not insured under medicare;
  • a health service may be funded, but long waiting lists mean it is not available when needed;
  • a service may not be available on an equitable basis due to geographic factors (provincial/territorial differences, or issues of rural/remote supply).

These three commonly used definitions of access are not the focus of this paper. No health system has the resources to provide an unlimited number of services, so services deemed as less necessary will be uninsured. "De-insuring" of services may not pose a challenge to equitable provision of services, as long as all are treated equally.

The issue of waiting lists for many medical procedures, (currently a common focus of the public discussion on access) may not result in inequitable access, as there is little evidence to date that members of "underserved populations" face longer waiting times than other patients. However, there is public recognition that "private" (i.e., fee-for-service) clinics to address waiting lists raises serious concerns about equitable access by introducing financial barriers to some insured services. Regional shortages of primary care physicians may also have an effect; research indicates that Canadians who do not have a regular family physician are less likely to receive primary or specialist care (Dunlop et al., 2000). If physician shortages have a disproportional effect on underserved populations, this would be considered an aspect of inequitable service.

While the significant problem of health service provision to rural and remote areas is not the focus of this paper; it is important to recognize that both income and membership in an underserved group, interact in direct and indirect ways with geographic barriers. This can place vulnerable groups at even greater disadvantage.

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Financial Barriers

The second category of access barriers relates to explicit financial barriers. In other words,

  • a service may be available, but there may be monetary costs associated with its use.

This category can be subdivided as follows: a) explicit financial barriers to insured health services, b) explicit financial barriers to uninsured services, and c) other financial costs associated with access.

There is increasing concern that universally insured services may be eroding. The growth of private clinics for some medical procedures in some provinces has also raised a high level of public concern that a two-tier level of medical care may be emerging. Clearly, people in lower income levels will have fewer options under this system; underserved populations are disproportionately represented among lower socioeconomic groups.

While it is generally accepted that financial barriers to insured services have been removed in Canada, disparity is growing in access to non-insured services. Many Canadians with low or moderate incomes have limited or no access to health services such as eye care, dentistry, mental health counselling and prescription drugs (Federal, Provincial and Territorial Advisory Committee on Population Health, 1999). Underserved groups may also face greater difficulties in meeting the indirect financial costs related to health care utilization. These costs include child care, transportation or unpaid time off work for medical appointments. Certain groups are more likely to face these barriers, and while it is not feasible to calculate such indirect costs of utilization, "accessible" services must address issues such as location and hours of operation.

Non-Financial Barriers to Presentation of Need

The focus on income-related barriers to access has resulted in relative neglect of non-financial barriers to care, including barriers that prevent patients from achieving first contact with health care services (and thus presenting for assessment). Barriers in this category can prevent equitable access even if providers are committed to providing equitable service upon presentation of need.

  • A service may be available, but linguistic barriers, inaccessible facilities or other barriers may result in a patient being unable to present for care.
  • Potential users may not be aware that a service is available, rights to service, or how to access the service (information barriers).
  • Individuals may not request services because, even though they are aware of them, they are not aware of (or do not believe in) their importance (cultural or education barriers).
  • Although services are available to all, practices related to delivery discourage utilization by certain populations.

This category of barriers has a significant impact on awareness of, and participation in, preventive and health promotion programs. Provision of preventive information is much broader in scope than that of physician care and includes information obtained through the media and community events. Langu age an d cultural barriers, as well as lower literacy, are correlated not only with decreased participation in preventive programs, but also with lack o f awareness of risk, lifestyle interventions, warning signs, and benefits of screening. Barriers to presentation of need tend to lead to a situation where utilization of services may be "acute care driven", rather than based on regular or preventive care.

Barriers to Equitable Treatment

Even if individuals present for care, they may encounter barriers to equitable treatment.

  • Communication/cultural barriers may result in misdiagnosis/inappropriate treatment.
  • Rights of confidentiality and informed consent may not be protected.
  • Service utilization may be discouraged or refused for certain populations.
  • Different treatment may be prescribed based on group membership.
  • Provider-patient interaction may differ based on group membership.
  • Policies may not recognize the needs of certain populations.
  • Program design may result in the needs of some groups being better served than others.
  • There may be less expertise related to health conditions of, or treatment efficacy for, some groups.

Each is a potentially serious barrier to equitable access to care. Communication is an essential component of health care. One of the most dramatic forms of communication barriers has been found in situations where patients cannot speak the same language as their health care providers. Without adequate communication there is an increased risk of "miscommunication, misdiagnosis, inappropriate treatment, reduced patient comprehension and compliance, clinical inefficiency, decreased provider and patient satisfaction, malpractice injury, and death." (Office of Minority Health, 1999). Inadequate communication precludes the negotiation of informed consent and so results in risks to both patient and provider (Tang, 1999; Kaufert and Putsch, 1997; Stevens, 1993b). Cultural differences may also contribute to miscommunication.

It is also possible that members of underserved communities may be prescribed different treatment, depending on their membership in a specific population. Even if the technical level of care provided is "equal", attitudes and behaviour demonstrated by providers may result in lower quality of care. Such barriers may be described by community members as "racism", "ethnocentrism", "homophobia", or "ableism"; and by service providers as lack of "cultural competence". The issue of trust in the provider/client relationship has been explored in detail (Kaufert and O'Neil, 1998), as have issues of communication (Stewart, 1995). Poor communication and low trust have been linked to decreased patient satisfaction, lower levels of compliance, subsequent patterns of health service utilization and treatment outcomes. Therefore, discrimination in any form can be expected to result in poorer health outcomes.

Policies may not address the needs of certain clients, or may create conditions that result in lower quality of care. Absence of appropriate policy can have the same impact as inappropriate policy. For example, failure to require professional interpreters results in lack of protection for patient rights to informed consent.

Two additional aspects of access are more complex and difficult to address: the way services are structured and the knowledge base on which assessment and treatment is based. The way services are structured and the priority given to various types of services reflects both the historical development of the health system and the beliefs and preferences of current administrators and policy makers. Members of underserved groups have historically been underrepresented in these areas, so services do not necessarily reflect their needs, interests or priorities. Barriers arising from these inherent characteristics of service provision (often referred to as "lack of appropriate services") may result in programs and services not meeting the needs of certain populations. Such barriers can include such varied factors as:

  • 9-5 office hours;
  • an environment which is experienced as intimidating or insensitive;
  • routine inclusion of practices which are not acceptable to the identified population ;
  • physically inaccessible facilities;
  • lack of expertise related to specific experiences, beliefs, needs or preferences;
  • lack of interpretation services;
  • failure to provide services which are an essential component of needed care from the clients perspective (e.g. areas for smudging ceremonies, culturally acceptable food).

It has also been documented that ethnic and language minorities have not been well represented in health research, ranging from population health surveys to clinical trials (Cotton, 1990; Frayne et al., 1996; Roberson, 1994; Anderson, 1993). While it is acknowledged that there may be significant differences between populations in risk of disease, prevalence of health conditions and response to treatment (Harrison, 1994; Seth et al., 1999), unless all populations are represented in research the knowledge base on which providers base treatment may not be complete.

As this framework indicates, there are a number of barriers to underserved populations receiving the care they require. Many individuals face barriers resulting from membership in more than one underserved population. Simply addressing the issue of poverty does not address all types of access barriers, namely geographic, linguistic, cultural, or barriers which result from prejudice or from discrimination against various groups, or their exclusion in the research and planning process.

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Section 3: Quantifying Populations and Needs

Research Related to Access of Underserved Populations

Introduction

In order to understand the significance of any problems in distribution of needed services and of access to them, it is necessary to be able to determine:

  • the size of the defined population at risk of impaired access;
  • the health status of the defined population;
  • the type and prevalence of difficulties in access experienced by this population.

The Metropolis Project (Health Canada, 1998), in the process of priorizing research domains related to health, identified a number of specific research issues related to the question of access. While this project focuses on immigrants and health, these research questions apply as well to other populations:

  • whether access to health services, of any kind, is less for immigrants (or underserved populations) than for native born (or the general population);
  • if access is poorer, why this is so;
  • what role racism or other forms of discrimination play;
  • whether culturally sensitive services are more effective in producing positive health outcomes; and
  • what the rights of immigrants (underserved groups) to service should be.

The initial review of the literature undertaken for this paper identified little research undertaken in Canada on these questions of access, although significantly more is known about the health status of various populations. A review of the literature in the Atlantic region reached a similar conclusion (Sharif et al., 2000).

A number of observations can be made from the initial review.

  • There is consensus from community level consultations and community-based surveys that many populations are less well served by the health system. This is attributed to "language barriers", "cultural barriers", lack of cultural sensitivity, or racism/ discrimination.
  • Little academic research has focused on issues of access, for any of the populations identified. The issue of access often emerges as a "byproduct" in the course of research on other topics (such as of health status) or is proposed as an explanation for various differences in utilization or health related behaviour.
  • The concept of "access" is poorly defined.
  • Academic research focusing on access often uses "utilization" as a measure of access. Limitations of this approach are discussed later in this section.
  • The concept of "barriers" remains conceptually imprecise, and is often discussed in general terms such as "cultural barriers".
  • "Membership" in the underserved population to be studied is also poorly defined, which leads to difficulties in measuring populations.
  • There are few linkages made between access issues faced by various "underserved populations".
  • The absence of well defined terms and concepts, and current limitations in data collection significantly limit the usefulness of population health surveys or existing databases for studying issues of access.

Lack of conceptual clarity and a limited body of existing research means it is difficult to determine what types of access barriers are experienced by various populations, how prevalent they are, or what the impact of these barriers is on access to health services.

Applicability of Research from Other Countries

In the absence of Canadian-based research, it is often useful to review research conducted in other countries. However, caution must be taken in generalizing this research to the Canadian context. For example, any research on access issues undertaken in countries without universal

health insurance will be affected by the fact that many of the respondents face financial barriers to health care. Even though racial/ethnic/cultural differences are observed when factors such as insurance coverage are controlled for (Mayberry et al., 1999), caution is still required. This is because the "social insurance" form of Canadian universal health insurance operates from very different principles than that of private health insurance which is based on the principles of actuarial fairness (Stone, 1993). The cultural, historic and legislative context of service provision may also limit applicability of research. There may be important differences in population characteristics and rights of "minority" populations in other countries. For example, while Canada has a number of immigrants from Latin America, in many of the U.S. centres where research on "Hispanic" health needs takes place, Hispanics form a significant percentage of the population, and are gaining increased legal rights as well as service access. This situation is rarely experienced by minority groups in Canada.

While it is not advised to apply evidence related to health inequities in the health system of one country to the system of another, the same limitation does not apply to examining findings on the effects of such inequities. For example, the effects of language barriers or low literacy on participation in preventive programs appear to be similar.

Measuring the Size of Underserved Populations

For all groups, difficulties were identified in determining the size of the populations. Difficulties in estimating the proportion of those with alternate sexual orientations are related to lack of research (particularly related to two-spirit, transgendered people, and gays and lesbians from Aboriginal and ethnic minority communities), lack of conceptual clarity, sampling limitations, "invisibility" of the population and reliance on self definition (Ryan et al., 2000).

While there are clear definitions of Registered Indians, varying estimates of Aboriginal peoples are obtained depending on definitions used, and a recent change in census questions has resulted in increased numbers of those reporting Aboriginal heritage. These figures are also affected by an individual's willingness to be identified as Aboriginal.

Population estimates of persons with disabilities are influenced by the definition of "disability" utilized.

While precise figures of immigrants arriving in Canada are available by year, country of origin, a ge, gender and immigrant class, estimating populations of specific immigrant groups by province or city is not as straightforward, as total population may change due both to migration and to births/deaths within each group. In addition, available public access data (e.g. in the population health survey) often fails to differentiate between immigrants from various regions of the world in a meaningful way.

Measuring Access

Much published research that attempts to measure, rather than describe, access of underserved populations has used utilization as a measure of access. There are serious limitations in equating access with utilization as differences in utilization may or may not indicate problems with access. For example if a certain group (e.g. immigrants, or Aboriginal people) is found to have similar levels of utilization as the overall Canadian population, this could mean that the population:

  • is of equivalent health status as the general population and uses health services similarly;
  • is healthier than the general population but uses services more than are needed;
  • is sicker than the population but due to access barriers uses services less ;
  • has different patterns of service utilization
  • (e.g. uses fewer preventive, but more acute, services);
  • is of lower health status than the general population but relies on resources outside of the health system

Depending on the size and diversity of the population measured, reliance on measures of utilization also risk masking different patterns of use within the population. For example, some ethnic groups may utilize far more services, and some far fewer than the general population due to differences in access; with the result that the total "immigrant" or "Aboriginal" population has equivalent rates of utilization as the general population. Different types of access barriers may have differential effects on utilization.

There are a number of other limitations to using utilization data to measure access.

  • Optimal utilization is unknown; we can only compare rates of utilization between groups.
  • Much utilization data is based on hospital activity; it does not give insight as to use of preventive and community-based services. This is of particular concern as the literature review indicates that the greatest barriers may be experienced in accessing preventive/health promotion programs.
  • Access to various services is achieved through different routes, indicating the effect of different factors. Although initial primary care contact is usually patient-initiated, much utilization is determined by physicians
    (e.g. return visits, prescriptions, specialist referral, hospital admission).
  • Utilization is influenced by availability and accessibility of health care providers, which may differ between populations. Use of utilization data for planning purposes then risks perpetuating inequalities in existing allocation (Eyles and Birch, 1993), and may mask important problems in access.

There appear to be two reasons for the reliance on utilization data to estimate access. The Canadian literature on the utilization of health care across population groups in many ways reflects the philosophy and concerns of legislation underlying the medicare program; ensuring that Canadians of all income levels had equal access to (use of) care. The major focus of research has historically been on the relationship of income and health; access has been measured by examining the relationship between utilization and income. However, the use of utilization data to measure access can perhaps best be understood as "measuring the information we have". Until recently, little attention has been paid to the different types of information required for decision-making (Hutchinson and Abelson, 1996). Utilization data appears to be used because it is one of the few forms of data readily available, without careful consideration of what the data represents. So while members of underserved populations use the term "access" to describe availability, ease of contact, linguistic/cultural sensitivity, and satisfaction that equivalent quality care is received, many researchers define access simply as utilization.

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Defining Barriers

Issues related both to health status and access to health services for members of underserved communities are complex and overlapping. Generally the literature does not clearly differentiate between a number of characteristics which have the potential to affect access to health services; instead, groups are compared based either on "ethnicity", or on Aboriginal or immigrant status.

Ethnicity

The concept of ethnicity to describe or explain barriers is problematic as the concept is rarely defined but is often based on the hypothesis that culturally based, traditional health beliefs act as a barrier to access and utilization of services. The focus on simply measuring differences between groups based on some measure of ethnicity, without adequately deconstructing the concept of ethnicity, poses a number of risks. A primary risk is the tendency to explain the "access problem" in terms of individual cultural incompetence, or even to blame minority communities for what is believed to be the impact of "traditional beliefs" or "cultural" behavioral patterns (Kaufert, 1990). As a result, researchers may conclude that minority patients are "non-compliant", mistrustful or fearful, (Orr et al., 1990) or "reluctant". Many stereotypes about ethnic differences fail to be confirmed by objective research.

Cultural Barriers

The concept of cultural barriers is linked to the concept of ethnicity. Discussion of access barriers experienced by or facing ethnic groups often fails to differentiate between:

  • cultural beliefs which may result in different priorities, health practices, or confidence in prescribed treatment;
  • information gaps as to what services are available, how they should be used, expectations of patients, or rationale for certain health practices and treatment options;
  • language / communication barriers ;
  • racism or ethnocentrism within the health system and their effects on utilization patterns, treatment and outcomes;
  • differences in need for, or effectiveness of, prescribed treatment due to differing risk for disease, prevalence of conditions, or metabolic differences within an ethnic group (Harrison, 1994; Seth et al., 1999).

Interpretation of differences between groups may be ascribed to various "causes" depending on the definition of ethnicity, or "barrier" utilized. For example, those comparing different racial groups may ascribe differences to systemic racism; those who allocate subjects based on ethnic origin may focus on the likelihood that "cultural beliefs" may create barriers. When immigration status or time since arrival in the country is considered, the focus may be "acculturation" as a concept. Traditionally, language access as the focus of comparison has been ignored (Bowen and Kaufert, 2000).

Recent research has begun to challenge the assumption that "cultural beliefs" or cultural differences are the cause of major barriers to access, pointing instead to communication barriers, systemic bias, and lack of flexibility in program delivery (Waldram, 1990; Jenkins et al., 1996; Naish et al., 1994; Perez-Stable et al.,
1990). Because other populations such as gay, lesbian and bisexual people report similar difficulties in obtaining satisfactory care within the health care sys te m, we are alerted to the limitations of explanations of barriers framed in terms of "ethnic" or "cultural" differences.

Ethnic Identifiers

In Canada, little available data is linked to ethnic origin, and the topic remains controversial. The main argument against such linking is that "ethnicity" is not well defined, it does not take potentially confounding variables into account, and so may lead to incorrect conclusions. Differences attributed to "ethnicity" may be the result of income-related factors, or inability to communicate in an official language (Robinson, 1998; Bowen and Kaufert, 2000). If correlations are found they provide little insight into underlying causal mechanisms (O'Loughlin, 1999), and may contribute to a focus on "cultural differences" instead of systemic barriers. However, not including ethnic identifiers may limit the usefulness of routinely collected data to explore differences in access or disease prevalence, important aspects of research in a culturally diverse society. Linking could also allow monitoring of care to underserved groups, to determine whether there are differences in treatment based on ethnicity - a topic that appears not to have been researched in Canada. At present the potential risks of such linking appear to outweigh potential benefits, particularly given the lack of clear definitions. Caution must be taken in using identifiers.

Measuring Prevalence of Access Difficulties

A review of published and unpublished Canadian literature found little research that attempted to measure the prevalence of difficulties with access experienced by a population. Although census and population health surveys do collect data on language and ethnicity, with the exception of measures of "unmet need", these data have not yet been used to develop preliminary estimates of the number of persons who face barriers to care, or what form these barriers may take.

Questions related to self-reported need for health care are often used in surveys. This method also brings a number of limitations. In addition to those inherent to the method (Eyles and Birch 1993), differences between cultural or ethnic groups in identifying and discussing health conditions; language difficulties, and distrust or fear of how results may be used, may affect the number of unmet needs identified (Anderson et al., 1993; Stevens, 1993a). Measuring differences in perceptions of unmet need relies on a shared conception of what a health need is, and expectations of what the health system should provide. It has been found that some immigrants from lower socio-economic levels learned in their country of origin to have low expectations of the health system; they were often unable to afford care, and were even subjected to abuse by the system (Bowen, 1999). These individuals are often found to be highly satisfied with Canadian services and report few unmet needs, even if faced by communication barriers, and lack of cultural competence of providers. This is the opposite pattern expected by researchers (Dunn and Dyck, 1998), in which people of lower income generally report a greater number of unmet needs.

Limitations of Available Research

Currently much of the research related to needs, utilization and effects of interventions which is used for planning purposes relies on secondary analysis of large data sets collected for other purposes, such as claims data, or population health surveys. This approach is of limited usefulness at this time in assessing differences between underserved groups and the general population because the data necessary to undertake the analyses is not routinely collected.

In Canada, provincial claims systems record data on inpatient and outpatient service utilization patterns, diagnostic and service information, mortality and morbidity, codes and information on admission and discharge from health facilities. Some provincial health information systems record information on demographic characteristics of system users including age, gender and home address. However, (with the exception of codes that identify Aboriginal people with treaty status and designate Anglophone or Francophone patients) data on language use patterns, ethnic identity or community of origin are generally not available.

Population health surveys also face a number of limitations in assessing health status and access for underserved populations. Most surveys exclude people who cannot communicate in English or French, a group at highest risk for access difficulties (Woloshin, 1997). First Nations communities are often undersampled or unsampled. In addition to these factors, smaller surveys may be of limited validity due to sample selection, and inability to control for other confounding variables. Communication barriers, variations in cultural views of health and illness, and concerns about the purpose of the survey and meaning of specific questions, frequently affect survey responses.

Community needs assessments may provide more detailed information at a local level. Care is required in design in order to avoid the risk of undersampling due to language barriers, mobility, or small numbers of certain minority groups in some communities. Community consultations are a qualitative method often used to identify needs and perceptions of service. While useful to identify issues of concern and types of access difficulties experienced, the fact that selection of participants is often not random may preclude an estimate of the prevalence of concerns identified. However, the potential of qualitative, descriptive methods to assist in defining access, barriers, and developing strategies to measure them has not been adequately explored, and the results have not been effectively disseminated within the health system.

Summary

In Canada, much of the research on access has focused on the variable of income. While there is general recognition that other factors such as "language/cultural barriers", "lack of information", or "inappropriate services" affect access, these concepts have not been critically examined in a comprehensive way.

Researchers have identified that "minorities" have generally been excluded from general health research (Frayne et al., 1996; Cotton, 1990;). Kinnon, in a 1999 review of Canadian research on immigration and health, noted the lack of research related to health service provision for immigrants; most of the identified research focused on determinants of health. Ryan et al. (2000) highlighted the gaps in research, and the negative focus on much health research related to health and sexual orientation. A number of writers have noted the absence of research related to Aboriginal people, particularly living off reserve (Wigmore and McCue 1991; Shah and Farkas; 1985; Canadian Nurses Association, 1995), and related to persons with disabilities.

Even when research is undertaken it may not focus on issues and approaches of importance to underserved communities themselves. Lack of representation of underserved communities among researchers and decision-makers appears to be contributing both to the paucity of research and the research focus itself. Clearly, more research is needed; however, research must utilize appropriate methodology. Greater attention needs to be given to clearly defining the populations and aspects of access to be measured, and to developing operational definitions and methods appropriate to the research questions and the characteristics of the communities studied. In addition, partnership with, and participation of, the populations affected are essential.

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Section 4: Underserved Populations In Canada

Introduction

As indicated in the Introduction, a number of diverse populations are identified as potentially underserved by the Canadian health system. These populations include Aboriginal people, official language minorities, those of alternative sexual orientations (gay, lesbian, bisexual, two-spirited, transgendered and transsexual) immigrants, refugees, ethnically and/or racially diverse populations, persons with disabilities, the homeless, sex trade workers, and low-income segments of the population. These categories of underservice are not exclusive. Individuals may belong to more than one underserved population and face additional access difficulties related to socio-economic status, gender, or residence in an underserved region.

This section provides an overview of the evidence for underservice for a number of these populations. This initial review focuses on "separating out" complex and often overlapping issues related to access, and identifying similarities and differences in the types of underservice experienced. Discussion of underservice will be described in the following categories.

  • Aboriginal peoples
  • Immigrants and refugees
  • Visible minorities
  • Language minorities
  • Persons of alternative sexual orientations
  • Persons with disabilities
  • Marginalized populations

In each section, key characteristics of each population, and what is known about the health status of each will be briefly summarized, utilizing previously compiled summary reports where available. Evidence for barriers to equitable care will be reviewed in the context of the framework proposed in Section Two. The focus of discussion will be the ways in which the organization and delivery of health services may contribute to inequity.

Aboriginal People
Demographic background

According to the 1996 census, approximately 3% (or 1.1 million) Canadians reported Aboriginal ancestry: two-thirds of these were North American Indian, a quarter Metis and about 5% Inuit. Over 600,000 of this number are Registered Indians (Indian and Northern Affairs, 1999). However, some provinces and territories have a higher percentage of Aboriginal people: in Manitoba and Saskatchewan they represent over 11% of the population; and approximately two-thirds of the population in the Northwest Territories, and over 20% of the population of the Yukon are Aboriginal (Statistics Canada, The Daily, January 13, 1998).

The Aboriginal population is diverse. There are 608 First Nations, comprising 52 Nations or cultural groups employing more than 50 languages. In terms of rights to services, Aboriginal peoples are categorized into four groups: Registered Indians, non-registered Indians, Inuit and Metis. Registered Indians also face differences in service access depending on whether they are living on or off reserve.

Most Aboriginal people (70%) live outside reserves; however, less than half of the Registered Indian population live outside reserves (Indian and Northern Affairs, 1999). The Aboriginal population is highly mobile with frequent migration between urban areas and reserve communities. Three in 10 Aboriginal people live in census metropolitan areas and a quarter in other urban areas. From 1981 to 1991, the urban Aboriginal population grew by 62%, compared to 11% for other urban Canadians. Population growth in urban areas is due both to natural increases (birth rate) as well as net migration from rural areas.

Canada's Aboriginal population is younger than the general population, with a median age of 25.5, compared to a median of 35.4 years for all Canadians. Thirty-five percent of the population is under the age of 15, and the number of Aboriginal youth (15-24) is expected to increase by 26% from 1996-2016. The 35-54 year group is expected to increase by 41% over the same time period (Statistics Canada, The Daily, January 13, 1998).

Health Status

Numerous reports and statistics have consistently demonstrated a significant gap in health status between Aboriginal people and other Canadians. On almost every indicator, Aboriginal communities have lower health status (Health Canada, 1999; MacMillan et al, 1996). The Second Diagnostic on the Health of First Nations and Inuit People (Health Canada, 1999) summarizes the research in this area, recognizing that less research is available on off-reserve and non-registered Aboriginal people. A few of the issues highlighted in the report are:

  • the prevalence of self-reported, major chronic diseases such as diabetes is significantly higher in Aboriginal communities than in the general population;
  • there are higher levels of infectious disease;
  • injuries and poisonings are the leading cause of death in First Nations populations;
  • alcohol and other substance abuse is considered to be a significant problem in Aboriginal communities;
  • suicide is two to seven times higher than in the general population;
  • infant mortality is 3.5 times higher for First Nations
  • the rate of pregnancy among young adolescent women (under age 15) are 18 times higher on reserves than for the general population;
  • life expectancy for registered Aboriginal people is seven years less than that for the overall Canadian population; and
  • three-quarters of Aboriginal women report experiencing family violence.

Many Aboriginal people have been exposed to additional health risks. First Nations communities face higher risk of environmental contaminants due largely to a diet of fish and marine animals together with pollution of the environment in the North.

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Access to Health Services

A review of the literature indicates that Aboriginal peoples face significant difficulties in access in all four categories outlined in the conceptual framework. However, the actual issues faced vary significantly by both location of residence and by status.

Availability of Services

Many First Nations people live in remote areas where there is limited access to health services funded by the province s. In these locations the First Nations and Inuit Health Branch of Health Canada is responsible for providing primary health services. Services provided may be through physicians (often provided on a visiting or rotating basis), nurses and Community Health Representatives. These services, which include prevention and health promotion, treatment, and emergency services are delivered out of health centres, or nursing or health stations, depending on the size of the community. Community Health Representatives are local Aboriginal workers, originally intended to provide translation and liaison functions. They now also function as educators, counselors and facilitators, although their role has not yet been fully developed (Allen, 1993; Lavallee et al., 1991). Special programs related to addictions, AIDS education and prevention, and environmental health, as well as some hospitals and residential treatment centres are also provided.

Due to the isolation of many communities, provision of community health services may not be in the same form as those available to other citizens; some services may not be available at all. In some areas services delivered by the First Nations and Inuit Health Branch may be equivalent to, or better than services, in similarly remote non-Aboriginal communities. These services include emergency care/transportation, immunization programs, and prevention activities. Nevertheless, almost half of respondents in the First Nations and Inuit Regional Health Surveys believed that First Nations and Inuit people do not have the same level of services as the rest of Canada (Assembly of First Nations, 2000a).

The First Nations and Inuit Health Branch is not responsible for health care to "non-registered Indians", or for provision of services to Indians living off reserves. Aboriginal people living off reserve (including non-registered Aboriginal people and Metis), have the same availability of insured health services as other residents.

Financial barriers

Experience with financial barriers to health services varies with status (registered or non-registered), and with third party payers for non-insured benefits, similar to other Canadians. Registered Indians and Inuit are eligible for Non-insured Health Benefits (NIHB), a program of the First Nations and Inuit Health Branch that provides supplementary benefits to eligible First Nations and Inuit to meet medical or dental needs not covered by provincial/territorial or third party health insurance plans. These benefits include dental, vision, and pharmacy, medical supplies, equipment and transportation, crisis intervention, mental health services and health premiums in Alberta and British Columbia. In some regions they may also cover traditional healing. The provision of supplementary benefits through NIHB means that Registered Indians (whether or not they live on reserve) and Inuit have greater access to many services than non-registered Aboriginal and Metis people (or other Canadians who lack third party insurance).

Costs of NIHB have escalated over past years with the result that there is tension between the federal government and First Nations communities related to the drive to cap funds to this program. The Assembly of First Nations has claimed that per capita government spending on Aboriginals is lower than that spent on other Canadians, in spite of lower health status and higher health needs.

Another area of cost is related to lack of local services. Many Aboriginal people needing treatment may be required to travel hundreds, or even thousands, of kilometers for care. They may be required to spend weeks or months separated from their family and community, even for non-critical life events such as childbirth.

Non-financial barriers to presentation of need

Aboriginal peoples may face significant barriers in this category, although experience varies by location of residence. First Nations people on reserve may experience fewer barriers to presentation of need due to availability of community-based services, and fewer language/cultural barriers to delivery of preventive/promotion services. Understanding how the system works and how and where to access services is an important problem for Aboriginal people who migrate to urban centres. Some are monolingual and face language barriers to initial access. Inuit peoples may face an even greater challenge as many speak neither English or French, and there are fewer urban Inuit organizations to assist in providing access services. To get some health services patients must show proof of registered status; Inuit families do not always know how to get this information or identification number (Canadian Nurses Association, 1995).

Jurisdictional confusion over responsibility for health service coverage presents difficulty for many Aboriginal people. A critical factor in initial access is the distrust and discomfort with health and social service systems experienced by many Aboriginal people, based on personal and historical experience. Lack of confidence in equitable treatment, intimidation and fear of discrimination may result in avoidance of certain types of services (Aboriginal Health and Wellness Centre of Winnipeg, 1997; Canadian Nurses Association, 1995).

Aboriginal populations have been found to have lower participation in preventive programs such as cervical screening and mammogram (Roos,1999; Calam et al., 1992; Hislop et al., 1996, Grunfeld, 1997; Deschamps et al., 1992; Clarke et al., 1998). Low literacy and socio-economic status, as well as limited availability of linguistically and culturally appropriate health promotion and disease prevention information, likely contribute to these lower rates.

Equitable quality of care

Aboriginal peoples in Canada face significant barriers to appropriate and equitable treatment: in referring to the framework developed in Section Two, we find that difficulties are reported in all categories.

Communication with health providers remains an important barrier. With the exception of some hospitals in major centres, translation services for Aboriginal languages generally aren't available, and patients must depend on informal translation (Kaufert and O'Neil, 1998). A vast body of literature has highlighted the risks related to impaired communication. (Please see Section 4C, Language Minorities.)

Lack of respectful or compassionate treatment, as well as experience of overt racism and discrimination is commonly reported by Aboriginal people (Aboriginal Health and Wellness Centre of Winnipeg, 1997; Canadian Nurses Association, 1995). The assertion that many providers do not understand or appreciate Aboriginal culture, traditions or experience is supported by recent Canadian studies which found that many health professionals in training received limited exposure to cultural issues (Flores et al., 2000; Redwood-Campbell et al., 1999).

Many (though not all) Aboriginal people have a different concept of health and healing than other Canadians. The use of a "medical" model and its emphasis on curative services and physical health does not reflect the First Nation understanding of health as balance between mind, body, spirit and emotion, and harmony between people and the environment (Favel-King, 1993). A number of Aboriginal people base health beliefs on a traditional holistic model, and may wish to incorporate traditional healing such as the Medicine Wheel, smudging or sweat lodges into treatment. However, there is a lack of awareness and availability of traditional healing and there may be specific regulations which forbid certain practices (such as smudging ceremonies in hospital). There is a need for the option of services based on traditional practices, and for Aboriginal peoples to be in control of design and administration of health services for their communities.

However, the focus on "cultural differences" as a barrier to health access should be responded to with caution. There is clear ly a great deal of concern expressed by community members about how they are treated by the health care system., but it is less clear that "cultural beliefs" are truly the key source of access barriers. A focus on "cultural differences" risks attributing difficulties to the community rather than to how health services are delivered and the biases of providers. Characteristics that result from poverty or other factors may also be attributed to "culture".

Barriers experienced in this category vary based on location of residence, and whether and at what stage health transfer is occurring in specific First Nations communities. Some preliminary evidence suggests that communities that have transferred, or are transferring, may be more satisfied with services (Assembly of First Nations, 2000a; Shibogoma Evaluation Committee, 1999). Certainly the intent of transfer is to make health services more appropriate and accountable to the community. However, Gregory et al. (1992) in their evaluation of one First Nations Community concluded that the policy does little to address underlying socio-economic conditions. Little information relating to evaluation of the transfer process is currently in the public domain. In addition, most health services to Aboriginal people are not provided on reserve. Many registered Aboriginal people migrate to off-reserve rural or urban areas, or are forced to travel to larger centres for treatment. Many Aboriginal people are not "registered" and less is known about the health status and needs of this group (Wigmore and McCue, 1991) due in part to the inability of current data collection systems to identify groups other than "registered Indians".

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Immigrants and Refugees/Visible Minorities/Language Minorities

A number of issues related to "ethnicity" were summarized in previous sections. Many studies on immigrant health fail to differentiate between a number of characteristics that may contribute to access difficulties. Immigrants, for example, may or may not: bring health beliefs which differ from that of general Canadian population; be fluent in English or French; be a member of a visible minority group; or, belong to a population with increased risk for certain diseases. Often immigrant and visible minority health issues are combined, although there may be very different factors affecting access. This section discusses issues related to immigrant status, visible minority status, and official language fluency separately, in an attempt to help clarify the range of factors that may have a differential impact on various immigrant and non-immigrant ethnocultural groups.

1. Immigrants and Refugees
Background

In 1996, 17% (approximately 5 million) of the Canadian population were born outside of Canada. However this figure masks a diversity which has significant implications for health needs and services. It includes all residents who are not Canadian born; newly arrived and those who have lived in Canada for decades, various classes of immigrants, (including refugees), fluent English/French speakers and those who speak neither official language, professionals and those with little formal education and from impoverished backgrounds. Immigrants come from all regions of the world and from many different ethnic or cultural groups.

In 1997, approximately 190,000 immigrants arrived in Canada. In the five year period, 1995-1999, the total was over one million (Citizenship and Immigration Canada, 2000). The majority settle in large urban centres, particularly Toronto, Vancouver and Montreal, but there are many smaller newcomer populations is most cities and larger towns in Canada.

The shift in source countries of immigration is a factor in equitable delivery of health services. The majority of immigrants used to come from Europe, the British Commonwealth, and the USA; more recently, newcomers are from Asia, Africa and Latin America. Immigrants from these areas are far more likely to face both language barriers to care and cultural differences. Immigrants today are also more likely to be visible minorities and so may face a different reception upon arrival than European immigrants.

Health Status

Immigrants recently arrived in Canada tend to be in better health than Canadian-born residents. Immigrants, particularly those from non-European countries, appear to have a longer life expectancy and more disability free years. This is attributed to the "healthy immigrant effect" (people who immigrate tend to be in better health), and to Canada's medical screening program (Chen, Ng, and Wilkins, 1996). However, the longer they live in Canada, the closer their health status resembles that of other Canadians.

Recent immigrants are younger than the general population, better educated and less likely to suffer from chronic diseases or disabilities (Chen, Ng, and Wilkins, 1996). Many groups show lower rates of negative personal health practices such as smoking or alcohol use. However, some groups may have greater risk of infectious diseases such as hepatitis or tuberculosis due to exposure in country of origin. The average family income is higher among all immigrants than the Canadian born; however, recent immigrants are much more likely to be unemployed or have lower incomes, particularly if they are from visible minority populations. There is great diversity between immigrant groups and refugees tend to have higher health care needs than other immigrants.

Access to Health Services

Availability of services

Newcomers to Canada generally do not face barriers related to availability of services. Most are eligible for health coverage on arrival, and for the past several years, even refugee claimants have emergency and needed health care services provided under the Interim Federal Health Program.

Financial Barriers

Because many newcomers have lower incomes than the general population, they often face financial barriers to uninsured services; however, refugees are eligible for social assistance while they are seeking employment and so are often covered for many non-insured health benefits (such as dental, pharmacy, or vision care). Dental health is source of concern to many immigrants who report the lowest rate of utilization of dental services even though oral health status is lower than other Canadians (Locker et al., 1998). Because many newer immigrants are in lower income brackets, barriers to uninsured services may continue for a long period of time. Newcomers, being less established in the workforce and having lower levels of social support, may also face difficulties related to indirect costs of health care access, such as child care or transportation. As many are in jobs with limited job security and few benefits, time taken from work for medical appointments often results in lost pay.

Non-financial barriers to presentation of need

Immigrants are not familiar with the Canadian system of care and may experience difficulty in understanding how the system works, their rights to service, the roles of practitioners, management of appointments, or expectations of providers (Wlodarczyk, 1998; Stevens, 1993). For many, this knowledge gap is exacerbated by lack of English or French language fluency. While there have been a number of initiatives to assist newcomers become oriented to the system, these are often undertaken by settlement agencies, community organizations, or family members rather than the health system, and so the quality and accuracy of such orientation may vary.

There is evidence from Canada and other countries that immigrants under-utilize preventive programs. Studies focusing on participation in cancer screening programs (such as mammography and cervical cancer screening) indicate that recent immigrants utilize these services a t lower rates than the general population (Sent et al., 1998; Grunfeld, 1997). Information, cultural and language barriers are usually proposed by researchers as causes of such barriers. There has been little research on concepts of health promotion and disease prevention as understood by immigrant groups (Vissandjee et al., 1998). Educators have faced challenges in getting accurate and appropriate HIV/AIDS prevention information into immigrant communities (Lechky, 1997).

Barriers to Equitable Treatment

As indicated in the previous section, "cultural barriers" have been identified as a source of access barriers for immigrants and refugees; however, this concept is usually not defined, either by community members or by providers. Barriers are variously interpreted as "cultural differences" (undefined, but implying that patient beliefs and practices may prevent their understanding or acceptance of care), language or communication barriers, information barriers (e.g. knowledge of services, expectations), different life experiences (e.g. exposure to war related trauma), or ethnocentrism/racism on the part of the provider. Empirical research as to which aspect of the newcomer experience/provider-patient interaction poses the greatest barriers has not been undertaken. However, programs working with immigrants and refugees report that all of these factors play a role in impeding access. Lack of provider understanding of traditional remedies was also identified as a barrier.

Some research suggests that "cultural differences" are perceived to be a greater barrier by providers than by patients; the latter highlight communication and discrimination as larger issues. A survey of patients and providers found that while both groups identified language as a barrier, only providers focused on cultural barriers, while patients identified racism as of more concern (Chugh et al., 1993). Another study found that patients did not always understand why physicians asked questions about culture and sometimes found these questions intrusive or irrelevant (Cave et al., 1995). A study of young immigrant families found that workers identified cultural compatibility as more of a difficulty than families themselves (Gravel and Legault, 1996, abstract). A recent forum in Calgary which focused on health care barriers identified language barriers, cultural competence of providers, lack of participation or consultation with ethnocultural communities, and lack of research as important barriers (Calgary Multicultural Health Care Initiative, 2000).

Some research related to health access of immigrants has analyzed utilization of services. Generally, compared to the general population, immigrants are considered to have similar or lower rates of utilization of health services over their lifetime (Globerman, 1998; Wen et al., 1996).

According to the National Population Health Survey, hospitalization rates for non-European immigrants are lower than for European immigrants and the Canadian born (Chen, Wilkins and Ng, 1996). Emergency room visits were also reported to be lower (Wen et al., 1996). However, use of utilization data to assess access is problematic, as it is not clear whether this is a reflection of lower need, or significant barriers to access.

One of the greatest areas of need is for mental health services, particularly for refugees (Canadian Task Force on Mental Health Issues Affecting Immigrants and Refugees, 1988; Nyman, 1991). Immigrants on the whole utilize fewer mental health services than the Canadian born, although there are significant differences between various immigrant groups (Canadian Task Force on Mental Health Issues Affecting Immigrants and Refugees, 1988). Lack of awareness among health care providers of the prevalence of trauma, combined with linguistic or cultural barriers may result in providers failing to provide opportunities for disclosure. Torture, rape and war related trauma tend to be undetected by providers, who often lack the skills to identify and treat the effects (McComas, 1997).

Another factor related to impaired access is the traditional reliance on settlement or other immigrant serving agencies to provide services related to health access. One common role is the provision of language or cultural interpretation to enable access to health services. It has also been observed that immigrants presenting mental health, addictions, or health education concerns are often referred back to immigrant serving agencies for service, even though these providers do not have the specialized training needed, as the specialized services do not feel they can address the language or cultural barriers involved (Canada's Drug Strategy, 1996; Stevens, 1993). This has the effect of creating two very different standards of service: trained professionals for English and French speaking citizens and generic settlement workers or unpaid volunteers for new arrivals.

Kinnon (1999) notes that access is an area in which the distinction between recent and more settled immigrant populations is critical, and urged further research to explore the lack of access and need for appropriate service. Access also appears to be affected by the size and "institutional completeness" c of immigrant communities (Baker, 1993). Newcomers who arrive in centres where there are fewer individuals from their community of origin, particularly those settling in rural areas, will face significantly higher barriers to access. There is greater likelihood of cultural and linguistic barriers and inadequate social support.

2. Visible Minorities

The literature often includes issues related to access to health services for visible minorities d with discussions on access for immigrant communities. However, one-third of visible minority persons living in Canada were born here. (Statistics Canada, The Daily, February 17, 1998) It is important to separate out issues of access faced by this population, as difficulties are more likely to be due to systemic discrimination than to information or language barriers. However, visible minority status is not generally identified in utilization statistics.

In 1996, Canada was home to 3.2 million persons who identified themselves as members of a visible minority. They represented 11.2% of the total population in Canada, up from 9.4% in 1991 and 6.3% in 1986. Three-quarters of this number lived in Ontario and British Columbia, where they formed 16% and 18% of the population respectively (Statistics Canada, The Daily, February 17, 1998).

There has been little attention in Canadian research to access issues related to visible minority status. Community consultations often identify experiences of discrimination and racism reported by members of visible minority groups (Sharif et al., 2000); however, because participants in such activities are usually not randomly selected, their experiences may or may not be representative.

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3. Language Minorities
Background

There are four populations who may face access barriers due to language: Aboriginal people, immigrants, people who use sign language and, depending on location of residence, people who speak one of Canada's official languages. Historically, research has focused on barriers by ethnicity rather than by ability to communicate in the language of service providers (Bowen and Kaufert, 2000). Language is often considered as one aspect of culture. However, there is some evidence that language itself (rather than ethnicity, or socio-economic factors) may explain some differences in satisfaction, utilization and outcome. In this section we briefly review some of the evidence of barriers to health access which appear related to language rather than ethnicity / culture/ or socio-economic factors.

A number of immigrants do not, even after several years in Canada, speak English or French well and lack the language skills to communicate even basic health problems in English. The mother tongue for 17% of immigrants in Canada is neither English nor French; 10% speak a non-official language most often at home. Forty-two percent of immigrants speak neither English nor French on arrival in the country. There has been an increase during the last decade in the percentage of all residents who speak neither official language (approximately 2%) (Marmen and Corbell, 1999). These individuals are more likely to be women with young children, the elderly, the poorly educated, or those suffering traumatic events or psychological disorders (Stevens, 1993a). These same groups have been demonstrated to have most need of health services (Kinnon, 1999).

Many Aboriginal people, particularly the elderly or those from isolated areas, continue to face serious problems in communicating with providers. One-quarter of Aboriginal people report a mother tongue other than English or French (Statistics Canada, The Daily, January 13, 1998). With the exception of the Territories and Nunavut, Aboriginal languages have not been subject to the access regulations governing official languages. However, federal administrative and service delivery systems, such as the First Nations and Inuit Health Branch of Health Canada, have provided interpretation services for providers in northern communities. While 80-90% of urban Aboriginal people in Eastern Canada speak some English, in Western cities a high proportion of elders and many youth lack the functional language capability to communicate in encounters with the health care system. The needs of urban Aboriginal people were not seen to be the primary target population for interpreter services provided by First Nations and Inuit Health Branch, although hospital-based programs such as those in Winnipeg, Brandon, Thompson, and Regina serve the needs of all Aboriginal people who require language access interpretation.

Speakers of one of Canada's two official languages may also, depending on place of residence, face similar language access needs as Aboriginal and immigrant populations.

Provision of ASL (American Sign Language) interpretation for the deaf community has followed a different path; that of advocacy for disability rights. These rights are more clearly specified in Canadian rights legislation, and have been the subject of a greater number of legal challenges. A recent Supreme Court decision (Eldridge v. British Columbia) ruled that hospitals were required to provide interpretation services for deaf patients (Stradiotto, 1998).

Access to Health Services

The literature review identified little Canadian research focusing specifically on the effects of language barriers on access, although some authors recognize language as an important barrier (O'Neil, Kaufert and Koolage, 1990).

A preliminary review of the international literature identified several studies focusing on language and immigrant communities but few on Aboriginal language access (Bowen and Kaufert, unpublished). Language barriers were found to be associated with:

  • service utilization (preventive or primary health programs, cancer screening programs, number of tests ordered, hospital admission, use of emergency department, utilization of specialist services, staff time, referral for follow up care);
  • health outcomes (misdiagnosis, reported problems with care, decreased care, self reported health status, poorer treatment outcomes, differences in prescribing, invasive procedures, palliative care);
  • patient satisfaction;
  • patient "compliance"(understanding of discharge instructions, diagnoses and prescribed treatment, medication errors and willingness to return);
  • health research (exclusion of minority language speakers from health research and clinical trials) ;
  • knowledge of conditions and diseases.

A comprehensive review of the research on language access in health care, and the implications for Canadian providers, can be found in the report "Language Barriers in Access to Health Care". (See Section II.)

In spite of compelling research which describes the negative impact of language barriers on patient care and the recognition that such barriers may result in the violation of patient rights, few health jurisdictions or institutions have implemented policy that would require some form of language access service to be provided to all patients. Few professional interpretation programs are available; most interpretation for health needs is provided on an ad hoc basis by family members, community volunteers, or hospital/community agency staff (e.g. language banks). Use of untrained interpreters may pose more risk than no interpreter at all, as they provide a false sense of security to both provider and patient that accurate communication is actually taking place (Office of Minority Health, 1999). They also expose providers to liability as there is no guarantee that informed consent is obtained or that serious diagnostic / treatment errors are not being made (Tang, 1999, Kaufert and O'Neil, 1998; Stevens, 1993b).

Although Aboriginal, immigrant and deaf communities face similar difficulties in communicating with health providers, advocates and language service providers often work in isolation from each other. This is because responsibility for service is often not within the health system, but assumed by a variety of community groups who have a more general mandate regarding services for a specific population. This review did not identify any studies related to the applicability of research undertaken on one language group to other constituencies. The Eldridge ruling stated that:

"Interpretation services should not be conceived of as "ancillary services", which, like other non-medical services such as transportation to a doctor's office or hospital are not publicly funded. Effective communication is quite obviously an integral part of the provision of medical services"(Eldridge v. British Columbia [Attorney General], 1997).

However, the ruling was carefully stated to say it applied only to interpretation for deaf patients. Although the principles outlined in the judgement apply also to speakers of minority languages, the question is open as to whether the ruling will strengthen rights to interpreter services for other minority language populations.

The Importance of Literacy

Recent research has highlighted the correlation of literacy with health status and health outcomes (Perrin, 1998; Sarginson, 1997). Low literacy rates have been linked to lower health status, increased rates of hospitalization, poor understanding of health conditions and any instructions related to discharge from hospital or medications (Baker, 1999). Literacy is also a factor in being able to benefit from the opportunity from health promotion or disease prevention information (Sarginson, 1997).

Literacy is correlated with low socio-economic status as many individuals with low literacy are poorly educated, and therefore have lower incomes. However, individuals who are not fluent in English or French experience low levels of literacy in Canada's official languages, no matter what their level of education, or literacy in other languages.

Alternate Sexual Orientation

The term "alternate sexual orientation" is used to describe gay, lesbian, bisexual, two-spirit e, transgendered and transsexual individuals. While it is not possible to validate estimates of the percentage of gay men and lesbians in the population (and estimates continue to be contested), the commonly used figures are 10% of males, and anywhere from less than 1% to 8% of females, respectively (Ryan et al., 2000).

Health Status

Because individuals of alternate sexual orientation come from every sector of society, they are at no greater risk of impaired health status related to socio-economic factors than other Canadians. Nor is there evidence of any diseases specific to sexual orientation, although certain personal practices may put specific individuals at greater risk. A social climate of intolerance and discrimination increases the probability that individuals may experience social isolation, 'hate crimes', or violence. This appears to place them at higher risk for depression and suicide. For example, a Calgary study concluded that men with a "homosexual orientation" were 13 times more at risk for serious suicide attempts (Badgley and Tremblay, 1997, abstract). Mental health problems, substance abuse and engaging in high risk sexual behaviours also appear related to the homophobia and heterosexism experienced in the wider community (Ryan et al., 2000).

A recent literature review (Ryan et al., 2000) concluded that gay and lesbian persons do not necessarily have different physical health needs. However, health needs and concerns may differ from that of the heterosexual population (Moran, 1996). The "coming out" process is identified as a crucial component of health for which support is rarely available. The heterosexism and homophobia experienced in the larger society and within the health and social services systems also results in specific mental health needs. The review by Ryan et al. (2000) also identified that little research or other information in the literature was available related to health status and access issues of transgendered and transsexual people.

Access to Health Services

In reference to the framework outlined in Section 2, persons of alternate sexual orientation do not face barriers related to availability or financial barriers to non-insured services at a greater rate than the general population (although persons with HIV/AIDS have been refused service in some situations). Barriers to access identified in the literature fall almost entirely in the categories of barriers to equitable quality of care although barriers to presentation of need also exist. These barriers include:

  • overt prejudice and discrimination, leading to a feeling of being unsafe within the health care system;
  • an atmosphere which creates distrust and fear of "coming out", impairing communication with health providers, and resulting in avoidance of care;
  • lack of research on health issues of gay and lesbian persons, their exclusion from general research, and reluctant participation in research;
  • and, ignorance among providers on issues of sexual orientation, and health needs of gay, lesbian and bisexual people.

There is no doubt that discrimination and homophobia confront those of alternative sexual orientation, or that the health system itself has played a key role in this discrimination. This is because historically those of alternate sexual orientations were defined by the medical community as 'sick' or mentally ill. Until 1973, the Diagnostic and Statistical Manual of the American Psychiatric Association listed homosexuality as a psychiatric disorder. Certain health care providers are reported to continue to have a heterosexist and anti-gay and anti-lesbian bias (Ryan et al., 2000).

Attitudes of physicians, ignorance of issues, and scarcity of supportive providers have been the source of complaints about physician services. Disclosure of sexual orientation was identified as being the greatest problem in consulting a health care professional or gaining access to treatment.

In addition to heterosexist or homophobic reactions, patients also find that providers are ignorant of issues of sexual orientation, and may tend to see health issues specifically related to sexual health. Health needs of gay men may be defined in relation to HIV. Underscreening may occur for certain conditions, such as screening for cervical cancer or vaginal infections of lesbian women (Moran, 1996). Most often providers assume that clients are heterosexual (Mathieson, 1998). Policies may also be discriminatory; for example, hospital policy may limit visits to intensive care, or release of patient information, to "immediate family" which discriminates against same sex partners.

Some groups feel the impact of these barriers more than others. Two-spirit persons, rural residents and ethnic minority communities face even more significant barriers to access. Particular problems were reported by gay men and lesbians with disabilities (Ryan et al., 2000).

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Persons With Disabilities
Health Status

In 1991, 4.2 million citizens, or 15.5% of the Canadian population reported some level of functional disability (The Daily, 1992; Oct. 13 1-4). The Canadian Mental Health Association estimates that one person in three will have a mental illness in his or her lifetime. Given the aging of the Canadian population, and the continuing advances in medical science, it is expected that the percentage of Canadians with disabilities will rise and that most individuals will have some sort of disability at some point in their lives. The category of persons with disabilities is diverse, and includes individuals of all ethnic and cultural backgrounds, and of all sexual orientations. In addition, individuals may be living with one or more different types of disability (mobility problems, sensory impairments, lack of strength, coordination or comprehension) which present different problems with health care access.

Persons with disabilities have a high level of unemployment, and are among the poorest in the society (Human Resources and Development Canada, 1999). In addition, they have less formal education than the general population. Forty-five percent of the respondents to the Health and Activity Limitation Survey with severe disabilities had eight or fewer years of education (Statistics Canada, 1992). Both physical barriers and attitudes of the non-disabled population contribute to social isolation and low status. Some people with disabilities are at higher risk of violence and abuse. Persons with mental illness appear to be at greater risk for injection drug use and HIV infection (Davis, 1998). Some underserved groups have higher rates of disability than the general population; for example, over 30% of Aboriginal adults report a disability (Ng, 1996; Human Resources Development Canada, 1998).

Persons with disabilities have been excluded from full participation in most areas of life. Over the past two decades, there has been increasing advocacy for self determination and equal access to services, and a shift from a support and dependence orientation, to one which emphasizes promoting empowerment, consumer control, providing options and choice and encouraging inclusion and participation (P. Hutchinson et al., 2000).

Access to Health Services

Barriers to health care are both physical and attitudinal, and vary based on the form of disability experienced by the individual.

Many people with disabilities, particularly those in rural areas, may lack availability to specialized medical care or the support services needed to maintain independence in their communities, forcing them to move away from family and community (Peat, 1997; Wilson et al., 1995). Aboriginal people in particular are at risk (Fricke, 1998). Choices of providers may also be limited by physical location, training of providers or willingness to provide services to those with disabilities (Milne et al., 1995). Because of low income, and additional costs associated with the disability (e.g. transportation, or communication aids), financial barriers to non-insured services are also an important concern.

Barriers to presentation of need are often experienced, many of which are physical barriers. While Canadian human rights legislation makes a general commitment to accessibility for persons with disabilities, there is no enforcement structure (such as provided by the Americans with Disabilities Act in the U.S.). Transportation to health services is often a major problem, and facilities themselves are often not barrier-free.

Social isolation, low literacy, or learning or intellectual disabilities may contribute to low awareness of services, and how to access them. Attitudes to those with disabilities may also prevent access to certain kinds of information, such as sexuality education (Stevens et al., 1996). Those with sensory or intellectual/learning disabilities are particularly at risk for barriers to preventive and health promotion information and programs. Specialized programs often do not tailor services to meet the needs of people with disabilities.

Persons with disabilities may also face a range of barriers to equitable care. Once inside a facility, there may be other physical barriers. These may include such varied factors as inaccessible washroom facilities, lack of accommodation in waiting areas for special seating, inaccessible examining tables, failure to provide patient information in a variety of formats (e.g. Braille or audiotape), lack of interpreters or telecommunications devices (e.g. TTY/TDD) for deaf patients, and the constraints of special transportation systems which can make scheduling difficult (Jones and Tamari, 1997).

The most important barriers are attitudinal, however (Peat, 1997; Moore, 1997). Traditionally, the health system has focused on disability as an individual physical impairment and ignored the social dimensions of disability. The definition of disability as a deficit and the focus on rehabilitation as a cure may create a number of problems. The disabled consumer movement has rejected the definition of persons with disabilities as "sick" or "impaired", and encourages people with disabilities to take control of their own lives and their own health care.

Persons with mental illness face unique problems in availability of mental health services. Patients and their families often express greater needs for service than case managers (Calsaferri and Jongblood, 1999). Many individuals with a psychiatric diagnosis do not report using mental health services (Parikh et al., 1997). Characteristics of the illness may contribute to lack of recognition of need for care or avoidance of care, and those who present with the most disruptive behaviour may be assessed as having behavioural or justice related problems.

Mental health services have been the focus of particular concern regarding equitable access of disadvantaged groups. Aboriginal people, immigrants and refugees, or persons with other forms of disability, face particular challenges to getting the mental health care they need. Assessment and treatment of mental health conditions are heavily impacted by the cultural assumptions of both provider and patient; and many services are "verbally based", leading to potential discrimination against less well educated segments of society, or those facing language or cultural barriers.

Marginalized Groups

In this paper, groups that are marginalized due to characteristics or behaviours, or who are considered particularly vulnerable, are defined to include individuals who are homeless, mentally ill, street youth, injection drug users, and sex trade workers.

While this category includes diverse groups with different needs, there are also a number of similarities in the types of access issues faced and potential responses to health service needs. There is an overlap between marginalized groups; many marginalized people face multiple risk factors. In addition to poverty, many in these populations are socially isolated and lack family support; few are employed.

Access to Health Care for the Homeless

Persons who are homeless are perhaps the most marginalized of the poor, and their numbers have been increasing. Characteristics of the homeless population have altered dramatically over the past decade. There are more women, youth, able-bodied young people lacking marketable skills, runaways, discharged psychiatric patients, women and youth fleeing domestic violence, families and single mothers on social assistance, and working poor. While the numbers of homeless have grown generally in recent years, large urban centres where there is a shortage of affordable housing are experiencing the greatest increase.

This population has a very low health status. The homeless are also at greater risk for accidents and violence.

Persons with mental illness are over-represented in the homeless population; this is linked to deinstitutionalization of the mentally ill. Estimates of prevalence of mental illness among the homeless range from 30-50%. Mental illness is often coupled with substance abuse.

Aboriginal people are at greater risk for homelessness, due not only to factors related to poverty, but also a pattern of migration between the reserve and city, and discrimination in housing. Shelters and other agencies which serve the homeless report a high proportion of Aboriginal clients, averaging 50% but rising to as high as 90% in some areas (Beavis et al., 1997).

The homeless face a number of barriers to health care access. They often confront problems of availability of service. A significant problem is that many do not have a provincial health card, and so may be unable to access services to which they are entitled; it is also difficult to apply for a card without identification or an address. Many individuals also report being denied service because they were not clean and presentable (Ontario Medical Review, 1996). Low income and few social resources also present problems in accessing non-insured services.

Homeless people also experience barriers to presentation of need. They lack transportation, find primary services unfriendly and intimidating, and often delay seeking care. Many do not know where to seek care, many of those requiring mental health services did not know where to go (Stuart and Arboleda, 2000). They are reported to under-use preventive services, instead relying on emergency services. This is due in part to the way services are organized and the requirement that emergency departments must provide care to those who present to them. Homelessness also creates practical problems related to follow-up or communication of test results, safe storage of medications, or a place to be sent home to recuperate. And, in spite of the prevalence of serious mental illness, few mental health services are available to the homeless.

Summary

This section summarized the information related to access to health services identified by researchers and reported by various underserved populations. These populations vary significantly in health status and the types of barriers experienced. However, in spite of this diversity, there is a remarkable similarity in many of the concerns expressed and barriers identified. This suggests that there may also be similarities in the types of responses needed to address these barriers. The literature review also highlights the additional difficulties to access experienced by those who belong to more than one "underserved population", and the need for responses to address the needs of those who experience more than one form of underservice.

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Section 5: Responses/Solutions

This section outlines a number of potential responses to the problems of ensuring equitable access for underserved populations. These responses are described under three headings: Recruitment and Training, Program Design and Delivery, and Policy and Structure. In each section the potential benefits and limitations of each response are briefly discussed and examples of existing programs highlighted.

Recruitment and Training
Recruitment of Health Providers for/from Underserved Communities

Recruitment of providers, particularly physicians, has been a common response to problems of medical workforce supply in rural and remote communities. There are two strategies in this category which can be applied to service provision to underserved populations: pre-service recruitment policies, and post training initiatives.

It is proposed that increasing the number of health professionals from underserved populations will help to address problems of both service availability and cultural/linguistic barriers to access (Royal Commission on Aboriginal Peoples, 1996; Blair, 1994). Evidence from other countries suggests that physicians from underserved populations provide service to a disproportionate number of underserved patients (Moy and Bartman, 1995). Research also suggests that many clients from "minority" populations would prefer a level of "matching" between them and their health care provider, and it is argued that this matching results in a greater level of trust and comfort (Ryan et al., 2000; Saha et al, 1999). Increasing the number of health professionals who speak non-official languages may also reduce the need for language interpretation services.

Other benefits may be less direct but are as important. Combined with initiatives in provider education (discussed later in this section), facilitating access to practice by members of underserved populations has the potential to assist in increasing cultural competence and social responsiveness within the health professions (Cappon and Watson, 1999).

Pre-service Initiatives

Approaches within this category include affirmative action policies for admission to training for health professions, and development of special programs to facilitate access to medical training for members of underserved populations. Feasibility of this approach differs depending on the population.

Creating strategies for increasing the number of Aboriginal health professionals has been identified as a priority; there are few Aboriginal health professionals, researchers or administrators. The National Forum on Health (1997) observed that for Aboriginal peoples to take control of their health and health services, they must become involved in the design, development, delivery and evaluation of services in their community, and that increasing the number of Aboriginal health professionals is necessary to accomplish this.

While there is a clear need to make training of Aboriginal health professionals through special initiatives a priority, the importance of facilitated access to professional training programs for other underserved groups is not as clear. For example, there is no Canadian evidence that a health professional from one immigrant group would address access needs of another ethnic community better than a Canadian born professional. Many argue instead for increasing the cultural competency of all providers. In a culturally diverse society it is also essential to ensure that intake policies of educational institutions are unbiased and that any barriers to representation of disenfranchised groups within the health professions are removed (Cappon and Watson, 1999).

In general, special access programs which prepare candidates from varying backgrounds to compete for available training spaces (with additional financial support if required), are more likely to be accepted than "affirmative action" initiatives, which may raise a number of legal and ethical concerns. Many second-generation immigrants to Canada are enrolling in health training programs, and the health professions increasingly reflect the diversity of the population.

Post-Training Initiatives

Post training initiatives for underserved populations focus on the recruitment and licensing of professionals trained in other countries. One example of this is the licensing of foreign medical graduates (FMGs) or international medical graduates (IMGs). Data from 1997 indicate that 25.5% of active physicians in Canada were IMGs; 46% of which were family physicians. One third of these were trained in Great Britain or South Africa (Buske, 1997).

The benefits of "selected" IMGs f to service provision in remote rural areas has been clearly demonstrated; although their recruitment has been criticized for being a short term solution to a long term problem, and even exacerbating a problem of oversupply (Barer and Stoddart, 1999). Licensing of immigrant/refugee IMGs may also assist in addressing issues of regional supply. Concerns have been expressed that the "cultural differences" between these IMGs and the rural populations they serve may lead to dissatisfaction; however no research has been identified in this area.

The greater benefit appears to be the potential of non-selected IMGs (immigrants, refugees) to increase access for newly arrived Canadians. Many immigrants in urban areas have significant difficulty in obtaining primary care that is culturally and linguistically accessible. Many IMGs are themselves members of these recently arrived immigrant or refugee groups, and share the same language and cultural background.

Licensing of these immigrant or refugee physicians has been a controversial topic in Canada for many years. Entry into practice for immigrant or refugee physicians is extremely difficult, usually requiring post graduate training; most immigrant or refugee IMGs do not meet the requirements (Barer and Stoddart, 1999).

Many IMGs view the barriers to practice as discrimination based on country of origin (Mata, 1999; Goodley, 1992; Bowen and Simbandumwe,
1998). Most selected physicians come from Commonwealth or European countries, whereas many immigrant or refugee IMGs are visible minorities. When large numbers of individuals from particular ethnic backgrounds are blocked in their entry into professions there are often generalized perceptions of "institutional" discrimination, whether or not that is the intent of licensing regulations (Mata, 1999). In two provinces, pr ovincial human rights commissions have ruled in favour of IMGs who claimed that the restrictions on their entry to practice were discriminatory.

Orientation of immigrant or refugee IMGs to cultural and organizational expectations, current issues in health care reform, the importance of fluency in English and French and licensing requirements also appear inadequate (Bowen and Simbandumwe, 1998).

Finding a solution requires collaboration among all stakeholders, including provincial health departments, provincial licensing authorities, accrediting bodies and training institutions. This requires development of appropriate and unbiased screening and evaluation methods, review of licensing requirements, and funding for the evaluation and training and support components necessary for IMGs to learn about the system and update their skills (Andrew and Bates,
2000). There has also been a call for national standards and a coordinated national approach (Barer and Stoddart, 1992; Nasmith, 2000).

In 1997, in response to human rights concerns, the Royal College of Physicians and Surgeons of Canada (RCPSC) changed its policy with respect to certifying foreign-trained specialists, and in July 2000 implemented a pilot process for approval of IMG specialists.

In July 2000, the Manitoba government announced a new plan for facilitating licensing of IMGs. This initiative includes a preparatory course for those wishing to write licensing exams, a skill enhancement program, access to a conditional medical license and income and expense support (Lett, July 18, 2000). These two initiatives are recent and it is unclear what impact they will have on immigrant or refugee IMGs wishing to practice in Canada.

Although there are many reasons to address barriers to licensing of IMGs, by itself, this response is not anticipated to have a significant impact on barriers to access for newcomers. It is important to guard against the assumption that providing a physician from a particular ethno-cultural community will address all access needs. For example, many Canadian cities have small numbers of many different ethinc groups. It is not feasible to provide primary care to all communities through a provider of the same ethinic or language background.

There is diversity within groups: placing patients with providers of the same "ethnic" or language background may actually contribute to distrust if the patient and provider are of different political, socio-economic, religious or regional backgrounds. This form of matching may also provide only partial language access where there are differing dialects or forms; significant differences in health care beliefs and practices related to socio-economic status or region may be ignored.

Physician access is only one component of health care. Comprehensive health system access necessitates dealings with many different health providers (nurses, health educators, imaging technicians, dentists, physiotherapists, psychologists, etc.). However, to date, recruitment of health care professionals has focused on issues of workforce supply rather than facilitating access for underserved populations.

Preservice and Continuing Diversity Education for Providers

One disturbing finding emerging from the literature review was the perception among all underserved groups that providers were often insensitive to their needs, or even racist, heterosexist or homophobic. Recent Canadian studies confirm that diversity training is not well-developed in Canada and that there are serious deficiencies in training for a culturally diverse society.

Exposure to cultural competency training also appears inadequate. Two recent studies focused on the teaching of cultural issues in Canadian medical schools. A study by Flores et al, (2000) found that only 27% of Canadian schools address Aboriginal issues and none had separate courses addressing cultural issues. Most offered one to three lectures. Another study focusing on exposure to Aboriginal health issues found that only one program among the 16 Canadian medical schools had formal written objectives, and most programs offered cultural curricula as an elective (often a day or a weekend), not as core curriculum. The authors concluded that while most programs provided some exposure, most needed more expertise and direction. Concern was expressed regarding the ad hoc character of much of the training (Redwood-Campbell et al., 1999). Robb (1998) reported that only 9% of Canadian medical schools included cultural diversity in the program. Shah et al. (1996) identified three major deficiencies in Canadian educational institutions specifically related to teaching on Aboriginal issues: lack of Aboriginal content in the curricula; lack of faculty role models; and, low enrollment of Aboriginal students. They outlined the role of the visiting internship in Aboriginal Health at the University of Toronto to assist in addressing these barriers.

Canada appears to lag behind some other countries in the teaching of cultural issues (Flores et al., 2000) Topics of cultural competence must be considered "core content", not an elective in a diverse society. It must also be recognized that there are very different approaches to teaching cultural competence. Some approaches may risk reinforcing stereotypes and contributing to less sensitive care (Carillo et al., 1999; Stevens, 1993a). The lack of expertise within training institutions poses challenges for development and implementation of effective education strategies. Teaching of issues related to sexual orientation (Robb, 1996) and disability are also necessary aspects of diversity training.

A commitment to both teaching of cultural competence and addressing prejudice and discrimination within the training environment are required if meaningful access is to be ensured for all patients. Addressing issues related to provider training appears to offer better potential for addressing access issues of immigrants, visible minority, gay or lesbian communities and persons with disabilities than attempting to "match" patients with providers of their own "background". The emphasis must be on preparing all providers to deliver quality, appropriate care to the diversity of Canada's population. Benefits of increased "cultural competence" extend beyond expected improvements in direct client service. Greater awareness and skill among health professionals will facilitate implementation of other service initiatives.

Providing cultural competence training to physicians and other health professionals already in practice presents even greater challenges. The lack of published research on issues related to diversity and access difficulties of patients contributes to low awareness of the need for on-going education in this area.

There is also a need to review and monitor selection and evaluation criteria for professionals coming into training. Currently, none of the medical school examinations evaluate candidates' commitment to social accountability (Cappon and Watson, 1999). In a culturally diverse society, openness and aptitude for working with patients from diverse backgrounds is a necessary to provide effective care.

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Development and Expansion of Alternate Health Roles

Development of expanded and alternate health care roles in order to increase efficiency of health care services has been proposed consistently through a number of commissions. Barer, Wood and Schnieder (1999) highlight the potential of 'physician extenders' (e.g. nurse practitioners, and physician assistants) to address workforce supply needs in remote and rural areas. There is also the potential for such roles to improve care to underserved populations. Not all needed health services must be delivered by physicians, and some services can best be delivered by other providers, or outside of the formal heath system. Alternate health roles (substituting or extending the role of physicians) can be described in two categories:

  1. Roles which entail the provision of "medical service" and are covered by legislation (e.g. nurse practitioners, midwives, physician assistants)
  2. Unregulated roles which do not provide direct "health care" services (e.g. health educators, outreach workers)

Provision of competent alternate providers can enhance the capability of the health system to meet a variety of needs, and in many cases provide higher quality services. Although development and implementation of such roles has the potential to increase both appropriateness and quality of care, it is important their introduction be considered for all patients (not only underserved populations), in order to avoid the perception of a "two-tier" system of care.

The Role of Academic Health Centres

Academic health centres have been established throughout Canada and are financially supported by provincial governments. In addition to their crucial role in educating health professionals (discussed earlier in this section), academic institutions have played a direct role in provision of service to the underserved, particularly to those in remote locations.

All 18 family medicine training programs in Canada offer experiences in rural medicine. A number have instituted a range of activities to support service delivery in rural areas. Development of strategies to further engage medical schools with underserved populations has been more variable. Many schools have clinical outreach programs. A few, such as the University of Western Ontario, Dalhousie University, The University of British Columbia, and McMaster University have developed other community based initiatives ranging from working with community development projects, to telemedicine linkages, to establishing an environmental health clinic. Collaborative research with underserved communities remains generally less developed (Cappon and Watson, 1999).

Academic medical centres have the potential for a greater role in contributing to improved access for underserved groups than has been undertaken to date. They are responsible for training of future health professionals and have the potential to develop additional programs for training non-physician personnel to provide primary care access (Barer, Wood and Schneider, 1999). It has also been suggested that increased responsibility for service provision to rural and remote areas could be assigned to academic medical centres (Barer and Stoddart, 1999). This option has not been explored for underserved populations. Academic medical centres also have a potential to play a greater role in facilitating collaborative research with underserved communities.

There is increasing awareness of the need for continuing social accountability (or social responsiveness) in health professional training programs. Social accountability can be defined as the "obligation to direct...education, research and service activities toward addressing the priority health concerns of the community, region and/or nation" (Boelen and Heck, 1995). A recent survey identified the awareness of Canadian medical schools of the need to enhance social responsiveness and a willingness to explore ways of doing so. A number have initiated innovative programs in response to identified needs. Key challenges are the need for overall policy direction, systems for sharing best practices, support from federal and provincial ministries of health, and alliances with other health professionals to facilitate progress in this area (Cappon and Watson, 1999). Another challenge is the lack of cultural diversity within the health teaching professions (Shah, 2000).

Program Design and Delivery

The complaint that services are not "accessible", "culturally sensitive" or "appropriate" suggests a need to increase flexibility and creativity in program design and delivery. This category includes a number of different responses, only a sample of which is discussed here. It should be noted that many of these approaches also rely on alternate funding and physician payment systems, or include the participation of health related organizations outside of the insured physician/hospital care system.

Development of "Linking" Programs

This strategy focuses on creating links between providers and underserved communities. Responses can be described in two broad categories: interpreter/cultural mediator programs and community outreach initiatives.

Health Interpreter Programs

Interpretation programs are essential to equitable health care access in any situation where there are communication barriers between provider and patient. Provision of interpreters emerges as a priority response throughout the research literature and community consultations (Stephenson, 1995; Stevens, 1993; Bowen and Kaufert, 2000; Calgary Multicultural Health Care Initiative, 2000). However, in the absence of policy that requires providers to use professional interpreters, availability of these programs in Canada is uneven, as is the quality of service provided. Most interpretation is provided by family members and untrained volunteers. Traditionally, provision of language access services has not been assumed as a responsibility of the health care system itself, and there are few protections for patients related to either availability or quality of service.

There are many models for provision of health interpreter services. The feasibility of each model of interpretation varies, based not only on the number of people in a community who lack official language fluency, but a range of other factors which affect both need and availability of alternative or supplementary resources. It must also be noted that the greatest access barriers are often experienced in smaller communities; relying on numbers alone to determine need is inadequate (Bowen and Kaufert, 2000). More research is needed to assist in determining the best model for a specific location. However, whatever model is chosen, the experience of language access programs demonstrates that several components are necessary for provision of effective interpreting programs:

  • Policy requiring use of trained interpreters, combined with an enforcement provision;
  • Adequate and stable funding;
  • Investment in training and evaluation of interpreters;
  • A professional education component; and
  • Evaluation/research components.

Language access may also be addressed by provision of print or audiovisual resources in other languages. These resources have an important role in providing orientation to newcomers on the health service system, preventive information, and information on various health conditions, treatment and care. There are two general approaches to provision of resources in other languages: translation from the original English or French, and development of resources based on community needs and interests. Both require special expertise to be accurate and effective. Challenges to use of materials in other languages relate to funding, quality control, and coordination or duplication.

Community Outreach and Education Initiatives

Recognition of barriers to health promotion and disease prevention services often results in special community outreach and education initiatives. These programs, which are often provided in conjunction with interpreter services, usually provide information on service availability while addressing cultural and language barriers to initial access. Programs usually focus on disadvantaged or marginalized groups and on health concerns that emerge as priorities (e.g,, HIV prevention, cancer screening). Examples of these initiatives include:

  • print and audiovisual resources to provide orientation
  • community-based education programs
  • community-based initiatives for program development or education
  • outreach workers, outreach clinics or special awareness days.

Outreach initiatives can often provide a rapid, local response to identified needs, and facilitate utilization of existing services. They can often be linked to other health, education, or social service initiatives, and are particularly effective in addressing informational barriers.

Linking programs can focus on addressing barriers to presentation of need, but they also play an important role in ensuring equitable quality of care by facilitating communication, and provision of services which are culturally appropriate. They may also facilitate greater participation and direction of programming by community members themselves. A limitation of such approaches if used alone is that they are often focused on "cultural differences" of clients, rather than systemic barriers to care. They are often used as an add-on, by organizations that leave their existing structures intact (James, 1998). However, they do have the potential to facilitate improvements in organizational access. Another limitation is that programs may have time limits, or be focused on a single issue. They depend on awareness and commitment of providers to identify and respond to gaps in service. Outreach programs are often developed as supplements to core programs and may rely on members of the target communities who are often hired in junior or contract positions. This leaves them vulnerable to changes in key personnel and to funding shortfall (Stevens, 1993a, b).

Population-Specific Health Services

One approach to addressing barriers is to develop services focused on specific populations. These services may be operated by hospitals, community health centres, public health departments, or community based not-for-profit organizations.

There are a number of potential advantages to population-specific initiatives in addressing access needs. These include:

  • centralization of resources
  • development of a "Centre of Expertise"
  • an environment which facilitates confidence and participation of clients
  • clear accountability for provision of access services
  • greater potential for community direction and control, responsiveness to needs, and flexibility
  • potential to build in bridging/advocacy functions to other parts of the health system.

However, they also have a number of potential disadvantages, which suggest that they should not be the only response to access needs. In addition to requiring a "critical mass" of clients (which means that they will not meet the needs of smaller populations or those in smaller centres), such responses risk "ghettoizing" clients. Provision of a population specific service may result in restricted choice for clients if other alternatives are not provided.

Most innovative programs combine several initiatives into their response. What these programs seem to have in common is that they are developed in response to health needs and access barriers as experienced by users. They also focus on organizational change and community partnerships.

Communication Technologies (Telehealth/Telemedicine)

Telehealth describes the use of information and communication technology to deliver health care, health education and health information over distance. Telemedicine describes the delivery of medical services at a distance (Advisory Council on Health Infostructure, 1999). It has particular utility in addressing care and education to remote locations, an important issue for Canadian health care (Picot, 1998). Applications include videoconferencing, assessment, monitoring and follow up, mental health counselling, remote monitoring of blood glucose, tele-electocardiogram, tele-monitoring of vital signs, ultrasound, tele-visitation of hospitalized family members, and patient and health worker education.

Some evaluations of telehealth applications in Canada are available. Results of these studies indicate good results both on the measure of diagnostic accuracy and patient satisfaction (Dick et al., 1999; A. Stevens et al. 1999, Elford et al., 2000; Cheung et al., 1998, abstracts), for health services ranging from psychiatric assessment to cardiac care, to ultrasound evaluation. In some studies patients record higher satisfaction than providers; avoiding travel time and costs are highlighted as a key benefit from the patient's perspective.

Telemedicine has been identified as of greatest benefit for improving access to health services for those in remote areas (e.g. First Nations communities). Benefits are anticipated to be to the patient, to the provider and to the general community. It has been used to reduce the need to transport patients from their communities to medical facilities, increase access to specialist care, decrease the time needed to make a diagnosis, and improve monitoring of patients following discharge. It also allows greater support and education to health personnel working in isolation. The National First Nations Telehealth Project, begun in 1998, is evaluating the implementation of telehealth projects in five First Nations communities. Initial results identify a number of challenges to implementation as well as potential benefits to access. Cost effectiveness is as yet unclear (Health Canada, 2000).

The literature review did not identify use of telemedicine for the specific purpose of addressing needs of underserved populations, other than those in underserved areas. For example, many studies have identified the benefit of telepsychiatry in addressing needs related to geographic distances; however, the potential of using existing technology to link immigrant patients and providers of the same language and cultural background does not appear to have been explored. Nor did the review identify Canadian research related to remote telephone translation services, although this alternative has been investigated in the U.S. where indications were that patients were satisfied and costs were competitive (Hornberger, 1998). Telephone translation services provide access to interpreters, often on a 24-hour basis, on a fee per minute basis, and brings the potential advantages of cost efficiency and increased access for smaller language groups who can not support other forms of interpretation services. However there remain several questions related to cost, interpreter training, accountability, and quality control (Bowen and Kaufert, 2000).

Telemedicine also suggests a number of options for persons with disabilities in monitoring care, with particular potential for supporting persons with disabilities to live in their own community. It has been proposed that telecommunication technology could be used to provide rehabilitation and long-term support to people with disabilities (Burns et al., 1998, abstract). In Canada, the initiatives in telehomecare (the use of information and communication technology to deliver and manage health services at a patients residence) may be of particular benefit to persons with disabilities. (Office of the Health and Information Highway, 1998). It appears that the potential of telehealth applications to address non-geographic barriers to access should be further explored.

While the potential for such technology to provide increased quality of access particularly in remote and rural areas appears clear, it is beyond the scope of this report to analyze the cost and feasibility of implementation of various technologies. It is proposed that the technology can reduce costs to both the patient and health system. However, evaluation of effectiveness of the technology is still in its infancy, and there is to date little evidence related to cost-effectiveness.

There are also a number of practice issues that relate to telehealth service delivery. Fee schedules must be revised to accommodate this form of service. (Four provinces had completed this process as of July 2000.) Generally telehealth is not considered an insured service, so without formal schedule revisions, services cannot be reimbursed under provincial health insurance plans. Professionals need thorough orientation to the technology. There are still questions related to liability and insurance coverage for practice, and of licenses needed to deliver telehealth between provinces. There also remain a number of issues related to selection and compatibility of equipment.

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Structure and Policy

This section outlines three areas of response which are essential to addressing barriers to access; funding models, policy development, and partnerships/participation with underserved groups.

Funding and Provider Payment

One major barrier to equitable and appropriate care is the traditional emphasis on physician and hospital services, which consume most of the health budget. A population health approach suggests that investment in health promotion and disease prevention, and community development approaches (areas which are not traditionally those of physician expertise) should be prioritized. The clearest evidence to date of access barriers for underserved populations is in the area of access to preventive and early detection programs. The finding that current preventive services are utilized less by high risk, or underserved populations indicates that alternate models of service delivery should be considered. (Roos, et al., 1999). However, funding has not been redirected to these approaches, or to organizations with expertise in community based programming.

Hutchinson and Abelson (1996) propose that there are three models of physician primary care delivery: fee for service (the most common model in Canada at present), capitation, and community health centres. Fee for service is often considered to be the least effective payment method for ensuring population coverage of preventive programs. Physician advocates have also identified the limitations of the current fee schedule in providing reimbursement that recognizes the complexity of care for the marginalized (Pottie et al., 2000). The same fee is paid no matter how long the physician spends with a patient, which may function as a disincentive to working with patients with complex needs, or utilizing solutions such as working with a professional interpreter.

Both community health centres and capitation models have been proposed to improve participation in preventive programs. This section provides a brief overview of key characteristics of these two models, specifically as they relate to underserved populations. (It should be noted that provision of care by community health centres is an issue of funding, whereas capitation is a physician payment alternative).

Community Health Centres

Community health centres (CHCs) provide a specific response to the primary health care needs of a community. CHCs are non-profit organizations, governed by a board of directors drawn largely from the community they serve. Service is delivered through interdisciplinary teams; physician payment is through salary or capitation (Canadian Alliance of Community Health Centres). A number of the characteristics of CHCs position them to address the needs of underserviced populations. Services through CHCs are characterized by client- centred care, ability to give clients more time, provision of services off-premises where needed, and a commitment to community accountability. A CHC, by definition, is committed to equitable access, and so is more likely to address language and cultural barriers in program design and management. Some community health centres have adapted programs and services to the needs of all the underserved in their communities, others have developed a population specific approach by specializing in for example, Immigrant Women's Health, or provision of gay-positive health services.

Capitation

A fee for service system has built-in incentives to maximize the number of services, while lacking incentives to increase preventive care. Under a fee for service system, preventive care is delivered in an opportunistic manner in the course of patient visits for other reasons (Hutchinson and Abelson, 1996). This has led to low levels of population coverage for most preventive interventions. At risk, low income and immigrant communities are particularly underserved in this regard (L.L. Roos et al., 1999; Wolishin, 1997). In capitation payment systems, the amount of revenue a physician receives is based on an amount paid per patient (capitation fee) regardless of the number of visits. Various formulas may be used to calculate the fee for different practice populations. Capitation payment systems therefore have a builtin incentive to keep a population healthy. They also allow for more flexibility in service delivery and hiring of a greater diversity of health professionals, which allows the potential of a better fit between community needs and service delivery.

However, it is recognized that capitation has the potential to create access problems for at risk or unhealthy individuals (Hurley et al., 1999). This is because the incentives inherent in a system of capitation are to minimize services, provide less expensive services and avoid referral. Patients who may, for a number of reasons, be considered difficult or undesirable to treat (because of a variety of characteristics from limited English / French language ability, to stigmatized behaviours), are likely to face even greater risk of underservice unless specific safeguards are built into any capitation system. It has been observed that under managed care, the most profitable plans are those that avoid caring for sick patients (Kassirer and Angell, 1999). It appears that "geographically based" capitation (which includes all residents of a given area) may pose less risk to underserved populations than "enrollment based" capitation systems which may use a number of strategies to discourage high risk or "difficult" clients. (Hurley et al., 1999; Closson and Catt, 1996).

Health Transfer to First Nations Communities

Health transfer, described in Section Two, provides a number of potential benefits to First Nations communities, particularly the opportunity to develop and manage programs for their own communities, and address needs in the way the community feels is most appropriate.

However there are also a number of concerns. The key issue is whether the present funding base will be adequate to address the gaps in health services, and as a result health transfer becomes an unloading of responsibility for those who have suffered the greatest inequities (Speck, 1989). Not all programs are eligible for transfer. The process is viewed by some as an attempt of the federal government to rid itself of fiduciary obligations to First Nations peoples, or contravening basic treaty rights to health care. Another issue is that of recruitment of qualified personnel. Workforce supply in remote First Nations Communities has often been a significant challenge, and there is a great need for Aboriginal professionals. Training and other resources are required to ensure that communities have the skills to plan and administer programs as well as deliver services.

Health transfer applies to First Nations communities only; it does not address issues faced by the majority of Aboriginal people. Services to Aboriginal people living off reserve remain a provincial responsibility, and other responses must be found to address the many access barriers experienced by this population.

Diversity Policy

Many of the responses to identified access barriers focus on attempts to improve client access. While important, they do not necessarily lead to policy or structural changes which will ensure that all patients get equitable treatment. For example, diversity training may increase the numbers of providers who provide appropriate and sensitive care, but unless policies are implemented which require certain standards of accessibility, providing culturally sensitive care remains "optional". Provision of health funds is not made contingent on ensuring equitable access, based on any other criteria than absence of financial barriers. The onus to identify access barriers falls largely on the client. Initiatives must be taken to institute mechanisms for ensuring organizational access.

One issue is the need for clear policy on access for underserved populations. Such policy should address such issues as: requirement of use of trained interpreters; training and orientation of providers; personnel policies (including hiring policies, and inclusion of cultural competence as performance measure),; and mechanisms for community accountability. There must be strategies in place to review and enforce existing policy.

Partnership/Participation

Organizational access addresses the issue of participation of populations in policy and planning activities. Underserved populations have traditionally been under represented not only among health care providers, but also among academics, researchers, and administrators. Ethnic representation on community and regional health boards is also reported to be poor (Richard and Jagielski, 1999, abstract), and meaningful participation by consumers limited (Vandergang, 1996). One of the first questions in addressing needs for client access is not "What needs to be done?, but "Who should be involved"?

The need for joint research initiatives has been recognized by Health Canada through the establishment of community-based research funding programs. These initiatives have included support for capacity building within underserved communities. The Women's Centres of Excellence is one example of a program that requires demonstration of academic/community partnership in research proposals. These initiatives require further development and support.

Establishing partnerships with community organizations, and developing strategies for increased representation at decision-making levels must also be improved in all sectors- academic institutions, health institutions and regional and provincial bodies. Policymaking, research and educational positions are not yet representative of all sectors of the community. Adequate safeguards to ensure this level of participation in the health reform process do not exist.

Section 6: Conclusion

To date, research on access to care in Canada has focused on the removal of financial barriers to care, and to a lesser extent, on geographic issues of distribution and supply. The issue of non-financial barriers to access to care for underserved populations has not been well explored. Concepts are poorly defined and estimates of population size and prevalence of access difficulties are preliminary. More research is needed. This research should be planned and implemented in partnership with the populations affected, and must acknowledge the limitations in existing data and methodology, and the complexity of factors contributing to various forms of underservice.

The provision of universal health insurance has addressed many barriers to care for underserved populations in Canada. There is no evidence of denial of care, and little evidence of differences in treatment related to membership in an underserved population. Many barriers result from difficulties of communication related to language and culture, and from attitudes and knowledge of providers. Limited flexibility of program design, resulting from the historical focus on hospital/physician services, and the structure of funding and payment systems also present barriers. Access to non-insured services is of concern for many in underserved groups as they are generally of lower economic status. Many of the barriers relate to access to prevention, health promotion, and screening programs which implies that underserved populations face important barriers to health, not only to health services.

In spite of the diversity of barriers experienced by various underserved populations, many of the recommended responses are similar. While there is indication of need for some additional services, what appears to be most important is a change in how services are delivered. Many of the changes identified are anticipated to result in improved service provision for the general population, and have already emerged as priorities through the health reform process. These responses include increased social responsiveness of academic and health institutions, improvements in diversity training for health professionals, development of roles for alternate health providers, and an increased focus on funding and payment strategies which priorize prevention/ promotion and community based responses.

Particular strategies must be developed to increase the meaningful participation of underserved populations in planning and research activities. This is particularly important now as rapid changes in the health care delivery system create risk for the creation of additional difficulties in access to equitable care for underserved groups.

Changes in health care delivery affect all Canadians, but many people in underserved populations do not fully understand the impact of these changes, and lack resources to negotiate to have their health care needs met.

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Glossary
Aboriginal:
all indigenous persons of Canada of North American Indian, Inuit or Metis ancestry, including those in the Indian Register. First Nations population refers to those persons who are registered as Indians under the terms of the "Indian Act" and whose names appear on the Indian Register maintained by the Department of Indian Affairs and Northern Development. Also referred to as "Registered Indians", or "status Indians".
Population health:
the health of a population as measured by health status indicators and influenced by social, economic and physical environments, personal health practices, individual capacity and coping skills, human biology, early childhood development and health services. A population health approach focuses on the interrelated conditions and factors that influence the health of populations over the life course, identifies systematic variations in their patterns of occurrence, and applies the resulting knowledge to develop and implement policies and actions to improve the health and well being of these populations. (Federal Provincial and Territorial Advisory Committee on Population Health, 1999).
Capitation:
a physician payment system where physician compensation is based on an amount per patient, regardless of the number of visits, rather than a fee for each service provided.
Racism:
the belief, with accompanying behaviour, that asserts the inherent superiority of one population group over another, based on biological characteristics. Ethnocentrism refers to the tendency to judge other people and cultures using the customs of our own group as the standard, or see our group or customs as the best.
Self rated health:
how individuals describe their own physical and mental health.
Two - spirit People:
Aboriginal people who are attracted, emotionally and physically, to persons of their own sex, or to persons of both sexes. The term also refers to Aboriginal people who are transgendered.
Underserved Areas:
geographic regions, usually rural and remote, that experience difficulty in recruiting and retaining sufficient numbers of health personnel to meet the needs of the population, or are undersupplied with certain health services.
Underserved Populations:
For the purposes of this paper, underserved populations are understood to include Aboriginal populations, official language minorities, those of alternative sexual orientations (gay, lesbian, bisexual, two-spirited, transgendered) immigrants, refugees, ethnically and/or racially diverse populations, persons with disabilities, the homeless, sex trade workers, and low income segments of the population.
Equitable access:
the provision of health services in a way that provides an equal opportunity for all citizens to achieve maximum health.
Fetal Alcohol Syndrome (FAS):
Set of symptoms and birth defects in a child resulting from the mother's alcohol use during pregnancy. Fetal Alcohol Effect (FAE) describes the situation where only some of the FAS characteristics are present.
Heterosexism:
promotion of superiority of heterosexuality as a social norm.
Homophobia:
fear or hatred of homosexual people.
Immigrants:
people who are, or have been at one time, landed immigrants to Canada" (Statistics Canada). A landed immigrant has been granted the right to live in Canada permanently by immigration authorities. Refugees who are accepted to Canada are also landed immigrants. Refugee Claimants do not have landed immigrant status, they arrive in Canada requesting to be accepted as refugees. Recent Immigrants are people who came to Canada within the last five years.
Underservice:
increased likelihood that individuals will, because of their membership in a certain population: experience difficulties in obtaining needed care; receive less, or a lower standard of care;, experience differences in treatment by health personnel; receive treatment that does not adequately recognize their needs; or, be less satisfied with health care services.
Unmet health care needs:
a situation where on at least one occasion, the need for health care is experienced but the care was not received (National Population Health Survey).
Visible Minorities:
persons other than Aboriginal peoples who are non-Caucasian in race or non-white in color.
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Appendix A: Rights to Access to Health Services

The Canadian Charter of Rights and Freedoms

There are two sections of the Canadian Charter of Rights and Freedoms that appear to have applicability to the issue of rights to health care access. Section 15 states that:

"every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical ability."

This section requires that all Canadians be treated equally. In addition, Section 7, states that:

"Everyone has the right to life, liberty and security of the person and the right not to be deprived thereof except in accordance with the principles of fundamental justice."

This section would apply if lack of access could be demonstrated to result in the loss of life, liberty or security (Canadian Bar Association Task Force on Health Care, 1994). A landmark ruling in 1997 by the Supreme Court of Canada suggests that non-financial barriers which result in inequitable standards of care can be challenged. The case of Eldridge v. British Columbia, (Attorney General, 1997) represented a challenge to limited language access made by three individuals who were born deaf and preferred to use American Sign Language. Their claim was that British Columbia's Health Care Services Act violated the provision of the Canadian Charter of Rights and Freedoms; that the lack of provision of sign language interpreters had impaired their capacity to communicate with caregivers and increased the risk of misdiagnosis and ineffective treatment. They asserted that this communication barrier (i.e., the lack of hospital-provided American Sign Language Interpretation Services, which were discontinued in 1990 because of budget cutbacks), caused them to receive a lesser quality of care. The court determined that hospitals were required to provide interpreters for deaf patients, but left it open to determine whether the failure to provide interpretive services for non-official language speakers would also constitute a violation of the Charter of Rights and Freedoms.

"The possibility that claims for interpretation services might be brought by non-official language speakers, whose claims would proceed on markedly different constitutional terrain than a claim grounded on disability, cannot justify the infringement of the constitutional rights of the deaf. The evidence clearly demonstrates that, as a class, deaf persons receive medical services that are inferior to those received by the hearing population. Given the central place of good health in the quality of life of all persons in our society, the provision of substandard medical services to the deaf necessarily diminishes the overall quality of their lives. The government has simply not demonstrated that this state of affairs must be tolerated in order to achieve the objective of limiting health care expenditures. The government has not made a "reasonable accommodation" of the disability of the three individuals." (emphasis added). (Eldridge v. British Columbia, (Attorney General), 1997).

Canada Human Rights Act

The purpose of the Canadian Human Rights Act is to:

"extend the laws in Canada to give effect, within the purview of matters coming within the legislative authority of Parliament to the principle that all individuals should have an opportunity equal with other individuals to make for themselves the lives that they are able and wish to have and to have their needs accommodated....without being hindered in or prevented from doing so by discriminatory practices based on race, national or ethnic origin, colour, religion, age, sex, sexual orientation, marital status, family status, disability or conviction for an offence for which a pardon has been granted". (Canadian Human Rights Act).

The Act also states that it is "a discriminatory practice in the provision of goods, services, facilities or accommodation customarily available to the general public to deny, or deny access to, any such good, service, facility or accommodation to any individual." However, the issue of accessibility standards is addressed directly only for in the case of those having a disability, where "the Governor in Council may prescribe standards of accessibility to services, facilities or premises."

Each province also has its own human rights legislation, and the wording may be different in each. For example, The Manitoba Human Rights Code recognizes that:

"to protect this right it is necessary to restrict unreasonable discrimination against individuals, ...and to ensure that reasonable accommodation is made for those with special needs" (emphasis added).

Complaints under human rights legislation then appear to be an option for those who believe that they have been discriminated against according to membership in some group. However, the onus of complaint is on the individual; there is no ongoing assessment or enforcement mechanism which monitors rights provisions. What is "reasonable accommodation" to ensure healthcare access has rarely been challenged.

The Canadian Multiculturalism Act

The Canadian Multiculturalism Act of 1988 acknowledged multicultural diversity as a fundamental characteristic of Canadian society. It focused on equality of opportunity, participation, contribution and partnership of all Canadians. The Minister of Multiculturalism and Citizenship stated that:

"Multiculturalism...is about ensuring the great institutions of our national life - our policing and justice system, our health and social services, our media and cultural institutions and, not least, government itself build upon the talents of all our citizens." (Multiculturalism and Citizenship Canada, Introduction).

The act itself also committed the Government of Canada to:

"promote the full and equitable participation of individuals and communities of all origins in the continuing evolution and shaping of all aspects of Canadian society and assist them in the elimination of any barrier to such participation." [3(1)(c)].

However, there is no specific mention of commitment to ensuring equal treatment and protection in access to health and social services.

The passage of the Canadian Multiculturalism Act promoted an interest in multicultural health, and beginning in the late 1980's, several initiatives and programs, particularly those focusing on service access, received funding. The Canadian Council on Multicultural Health was formed, along with several provincial chapters. Some provincial governments instituted Advisory Committees focusing on multicultural health issues. Over the following decade however, much of this interest appeared to wane, and concerns regarding cost containment overshadowed that of multiculturalism. More importantly, little policy change within health institutions or practice has been observed.

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References

  • Aboriginal Health and Wellness Centre of Winnipeg, Inc. 1997. Aboriginal Health and Wellness Centre: Operational plan. Winnipeg: Aboriginal Health and Wellness Centre of Winnipeg, Inc.
  • Allen, I. 1993. Aboriginal people living in remote and northern areas. In, Royal Commission on Aboriginal Peoples. The path to healing: Report of the National Round Table on Aboriginal Health and Social Issues. Ottawa: Minister of Supply and Services. 130-38.
  • Anderson, J. 1993. Ethnocultural communities as partners in research. In, R. Masi, L. Mensah, and K. McLeod, eds. Health and cultures: Exploring the relationships. Oakville, Ontario: Mosaic Press. 1: 319-328.
  • Anderson, J., Blue, C., Holbrook, A., and Ng, M. 1993. On chronic illness: Immigrant women in Canada's work force - a feminist perspective. Canadian Journal of Nursing Research. 25(2): 7-22.
  • Anderson, J., Tang, S., and Blue, C. 1999. Health systems renewal: 'Writing in' cultural plurality. Working Paper Series, #99-14. Research on Immigration and Integration in the Metropolis.
  • Andrew, R., and Bates, J. 2000. Program for licensure for international medical graduates in British Columbia: 7 years' experience. Canadian Medical Association Journal. 162(6): 801-3.
  • Assembly of First Nations. 2000a. Results from the First Nations and Inuit regional health surveys.
  • Assembly of First Nations. 2000b. First Nations health priorities - Federal budget 2000.
  • Austin, W., Gallop, R., McCay, E., Peternelj-Taylor, C., and Bayer, M. 1999. Culturally competent care for psychiatric clients who have a history of sexual abuse. Clinical Nursing Research. 18(1): 5-23.
  • Baker, C. 1993. The stress of settlement where there is no receiving community. In, R. Masa, L. Mensah, and K. McLeod, eds. Health and cultures: Exploring the relationships. Oakville, Ontario: Mosaic Press. 2: 263-76.
  • Baker, D. 1999. Reading between the lines: deciphering the connections between literacy and health. Journal of General Internal Medicine. 14(5): 315-17.
  • Barer M.L. , and Stoddart, G.L. 1992. Towards integrated resource policies for Canada. 4. Graduates of foreign medical schools. Canadian Medical Association Journal. 146(9): 1549-54.
  • Barer, M.L., and Stoddart, G.L. 1999. Improving access to needed medical services in rural and remote communities: Recruitment and retention revisited. Discussion paper prepared for Federal, Provincial, Territorial Committee on Health Human Resources.
  • Barer, M.L., Wood, L., and Schneider, D.G. 1999. Toward improved access to medical services for relatively underserved populations: Canadian approaches, foreign lessons. Centre for Health Services and Policy Research, University of British Columbia.
  • Beavis, M.A., Klos, N., Carter, T., and Douchant, C. 1997. Literature review: Aboriginal peoples and homelessness. Ottawa: Canada Mortgage and Housing Corporation.
  • Birch, S., and Abelson, J. 1993. Is reasonable access what we want? Implications of, and challenges to, current Canadian policy on equity in health care. International Journal of Health Sciences. 23: 629-53.
  • Blair, L. 1994. Foreign doctors. Wasted resources? Canadian Family Physician. 40: 831-34.
  • Boelen, C., and Heck, J.E. 1995. Defining and measuring social accountability of medical schools. Unpublished document. WHO/HRH/95.7. Geneva: World Health Organization. 3.
  • Bowen, Sarah. 1999. Resilience and health: Salvadoran refugee women in Manitoba. Master's thesis. Winnipeg: University of Manitoba.
  • Bowen, S., and Kaufert, J.M. 2000. Methodological and policy issues in evaluation of health interpreter and language access services. Winnipeg: University of Manitoba.
  • Bowen, S., and Simbandumwe, L. 1998. Alternate careers project: Final report. Report Prepared for University of Manitoba Access Program and Red River College, Winnipeg, Manitoba.
  • Burns, R.G., Crislip, D., Davilou, P., Temkin, A., Vesmarovich, S., Anshutz, J., Furbish, C., and Jones, M.L. 1998. Using telerehabilitation to support assistive technology. Assistive Technology. 10(2): 126-33.
  • Buske, L. 1997. Canada's international medical graduates. Canadian Medical Association Journal. 157(1): 116.
  • Calam, B., Norgrove, L., Brown, D., and Wilson, M.A. 1999. Pap screening clinics with native women in Skidegate, Haida Gwaii. Need for innovation. Canadian Family Physician. 45: 355-60.
  • Calgary Multicultural Health Care Initiative. 2000. Building bridges: Healthy living for Calgary's diverse community. Final report. Calgary: Calgary Immigrant Aid Society.
  • Calsaferri, K., and Jongbloed, L. 1999. Three perspectives on the rehabilitation needs of consumers. Canadian Journal of Community Mental Health. 18(1): 199-211.
  • Canada House of Commons. 1984. Canada Health Act. Ottawa: Queen's Printer.
  • Canada's Drug Strategy 1996. Immigrant women and substance use: Current issues, programs and recommendations. Ottawa: Health Canada, Population Health Directorate, Office of Alcohol, Drugs and Dependency Issues.
  • Canadian Bar Association Task Force on Health Care. 1994. What's law got to do with it? Health care reform in Canada. Ottawa: Canadian Bar Association.
  • Canadian Nurses Association. 1995. Health in Canada: Perspectives of urban aboriginal people. Ottawa.
  • Canadian Task Force on Mental Health Issues Affecting Immigrants and Refugees. 1988. After the door has been opened: Mental health issues affecting immigrants and refugees. Ottawa: Minister of Supply and Services.
  • Cappon, P., and Watson, D. 1999. Improving the social responsiveness of medical schools: Lessons from the Canadian experience. Academic Medicine. 74 (8 Suppl): S81-90.
  • Carrillo, J.E., Green, A.R., Betancourt, J.R. 1999. Cross cultural primary care: A patient based approach. Annals of Internal Medicine. 130(10): 829-34.
  • Cave, A., Maharaj, U., Gibson, N., and Jackson, E. 1995. Physicians and immigrant patients. Cross-cultural communication. Canadian Family Physician. 41: 1685-90.
  • Chen, J., Ng, E., and Wilkins, R. 1996. The health of Canada's immigrants in 1994-95. Health Reports. 7(4): 33-45.
  • Chen, J., Wilkins, R., and Ng, E. 1996. Health expectancy by immigrant status. Health Reports. 8(3): 29-37.
  • Cheung, S.T., Davies, R.F., Smith, K., Marsh, R., Sherrard, H., and Keon, W.J. 1998. The Ottawa telehealth project. Telemedicine Journal. 4(3): 259-66.
  • Chugh, U., Dillmann, E., Kurtz, S.M., Lockyer, J., and Parboosingh, J. 1993. Multicultural issues in medical curriculum: Implications for Canadian physicians. Medical Teacher. 15(1): 83-91
  • Citizenship and Immigration Canada 2000. Facts and figures 1999: Immigration overview. Ottawa: Minister of Public Works and Government Services Canada.
  • Clarke, H.F, Joseph, R., Deschamps, M., Hislop, T.G., Band, P.R., and Atleo, R. 1998. Reducing cervical cancer among First Nations women. Canadian Nurse. 94(3): 36-41.
  • Closson, T.R., and Catt, M. 1996. Funding incentives and the structuring of health care. Canadian Journal of Public Health. 87(2): 86-89.
  • Cotton, P. 1990. Examples abound of gaps in medical knowledge because of gaps excluded from scientific study. Journal of the American Medical Association. 263: 1051-55.
  • Culyer, A. 1991. Equity in health care policy. Unpublished working paper. Toronto: Department of Health Administration, University of Toronto.
  • Davis, S. 1998. Injection drug use and HIV infection among the seriously mentally ill: A report from Vancouver. Canadian Journal of Community Mental Health. 17(1): 121-27.
  • Deschamps, M., Band, P.R., Hislop, T.G., Clarke, H.F., Smith, J.M., To Yee, and Ng, V. 1992. Barriers to cervical cytology screening in native women in British Columbia. Cancer Detection Prevention. 16(5-6): 337-9.
  • Dick, P.T., Filler, R., and Pavan, A. 1999. Participant satisfaction and comfort with multidisciplinary pediatric telemedicine consultations. Journal of Pediatric Surgery. 34(1): 137-41.
  • Doyle, R. Visano., L. 1987. A time for action: Access to health and social services for members of diverse cultural and racial groups. Toronto: Social Planning Council of Toronto.
  • Dunlop, S., Coyte, P.C., and McIsaac, W. 2000. Socio-economic status and the utilization of physicians' services: Results from the Canadian National Population Health Survey. Social Science and Medicine. 51(1): 123-33.
  • Dunn, J., and Dyck, I. 1998. Social determinants of health in Canada's immigrant population: Results from the population health survey. Working Paper Series. #98-20. Research on Immigration and Integration in the Metropolis.
  • Eldridge v. British Columbia (Attorney General). 1997. 46CRR (2nd). In, Dominion law reports, 151 D.L.R. 1997.
  • Elford, R., White, H., Bowering, R., Ghandi, A., Maddiggan, B., St John, K., House, M., Harnett, J., West, R., and Battcock, A. 2000. A randomized, controlled trial of child psychiatric assessments conducted using videoconferencing. Journal of Telemedicine and Telecare. 6(2): 73-82.
  • Eyles, J., and Birch, S. 1993. A population based approach to health care resource allocation and planning for Ontario. Canadian Journal of Public Health. 84(2): 112-17.
  • Favel-King, A. 1993. The treaty right to health. In, Royal Commission on Aboriginal Peoples. The path to healing: Report of the National Round Table on Aboriginal Health and Social Issues. Ottawa: Minister of Supply and Services. 120-27.
  • Feather, J., and Irvine, J. 1991. Challenge of home care in remote communities. Circumpolar Health. Proceedings of the 8th national conference, 1990. 26-29.
  • Federal, Provincial and Territorial Advisory Committee on Population Health. 1994. Strategies for population health: Investing in the health of Canadians. Ottawa: Health Canada.
  • Federal, Provincial and Territorial Advisory Committee on Population Health. 1999. Toward a healthy future: Second report on the health of Canadians. Ottawa: Health Canada.
  • Flores, G., Gee, D., and Kastrel, B. 2000. The teaching of cultural issues in U.S. and Canadian medical schools. Academic Medicine. 75(5): 451-55.
  • Frayne, S.M., Burns, R.B., Hardt, E.J., Rosen, A.K., and Moskowitz, M.A. 1996. The exclusion of non-English speaking persons from research. Journal of General Internal Medicine. 11(1): 39-43.
  • Fricke, M. 1998. Self-determination: The panacea for Canadian aboriginal people with disabilities? International Journal of Circumpolar Health. 57 (Suppl 1): 719-24.
  • Globerman, S. 1998. Immigration and health care utilization patterns in Canada. Working Paper Series #98-08. Research on Immigration and Integration in the Metropolis.
  • Goodley, E. 1992. Foreign medical graduates face uphill struggle for coveted Canadian internships. Canadian Medical Association Journal. 147(1): 94-96.
  • Gravel, S., and Legault, G. 1996. Adequacy of health care services for young immigrant families. Canadian Journal of Public Health. 87(3): 152-57.
  • Gregory, D. 1992. Canada's Indian health transfer policy: The Gull Lake Band experience. Human Organization. 51(3): 214-22.
  • Grunfeld, E. 1997. Cervical cancer: Screening hard to reach groups. Canadian Medical Association Journal. 157: 543-45
  • Harrison, P. 1994. Everything from disease risk to drug regimens may be affected by ethnic background, MDs warned. Canadian Medical Association Journal. 150 (8): 1310-12.
  • Health Canada. 1999. Second diagnostic on the health of First Nations and Inuit people.
  • Health Canada. 1998. Metropolis health domain seminar. Final report. Ottawa: Pubic Works and Government Services.
  • Hislop, T.G., Clarke, H.F., Deschamps, M., Joseph, R., Band, P.R., Smith, J., Le, N., and Atleo, R. 1996. Cervical cytology screening. How can we improve rates among First Nations women in urban British Columbia? Canadian Family Physician. 42: 1701-8.
  • Hornberger, J. 1998. Evaluating the costs of bridging language barriers in health care. Journal of the Poor and Underserved. 9: S26-S39.
  • Human Resources Development Canada. 1999.
  • Future directions to address disability issues for the government of Canada: Working together for full citizenship. Ottawa: Queens' Printer.
  • Human Resources Development Canada. 1998. In unison: A Canadian approach to disability issues. Ottawa: Queen's Printer.
  • Hurley, J., Birch, S., Stoddart, G., Torrance, G., and Vincent, V. 1996. Defying definition: Medical necessity and health policy making. McMaster University Centre for Health Economics and Policy Analysis. Working Paper 96-16.
  • Hurley, J., Hutchinson, B., Giacomini, M., Birch,S., Dorland, J., Reid, R., and Pizzoferrato, G. 1999. Policy considerations in implementing capitation for integrated health systems. McMaster University for Health Economics and Policy Analysis. Commentary Series #C99-01.
  • Hutchinson, B., and Abelson, J. 1996. Models of primary health care delivery. Building excellence through planned diversity and continuous evaluation. McMaster University Centre for Health Economics and Policy Analysis. Commentary Series #C96-3.
    Top of Page
  • Hutchinson, P., Pedlar, A., Dunn, P., Lord, J., andArai, S. 2000. Canadian independent living centres: Impact on the community. International Journal of Rehabilitation Research. 23(2): 61-74.
  • Indian and Northern Affairs Canada. 1999.Registered Indian population by sex and residence 1998. Ottawa: Minister of Public Works and Government Services.
  • James, C.E. 1998. Cultural interpretation services within a multicultural context: An exploration of the problematic and ethical issues facing social service institutions. Canadian Journal of Community Mental Health. 17(2): 51-66.
  • Jenkins, C., Le, T., McPhee, S.J., Stewart, S., and Ha, N.T. 1996. Health care access and preventive care among Vietnamese immigrants: Do traditional beliefs and practices pose barriers? Social Science and Medicine. 43(7): 1049-56.
  • Jones, K.E., and Tamari, I.E. 1997. Making our offices universally accessible: Guidelines for physicians. Canadian Medical Association Journal. 156(5): 647-56.
  • Kassirer, J.P., and Angell, M. 1999. Risk adjustment or risk avoidance? New England Journal of Medicine. 399: 1925-26.
  • Kaufert, J.M., and O'Neil, J.D. 1998. Culture, power and informed consent: The impact of aboriginal health interpreters on decision-making. In, D. Coburn , C. D'arch, and G. Torrance, eds. Health and Canadian society: Sociological perspectives. Toronto: University of Toronto. 131-46.
  • Kaufert, J. M., and Putsch, R. 1997. Communication through interpreters in health care: Ethical dilemmas arising from differences in class, culture, language and power. The Journal of Clinical Ethics. 8(1): 71-87.
  • Kaufert, P.L. 1990. The "box-ification of culture": The role of the social scientist. In, Sante culture health: Culture and health services: A challenge to Canadian society. 7(2-3): 139-48.
  • Kinnon, D. 1999. Canadian research on immigration and health: An overview. Ottawa: Health Canada.
  • Lavallee, C., James, C.A., and Robinson, E.J. 1991. Evaluation of a community health representative program among the Cree of northern Quebec. Canadian Journal of Public Health. 82(3): 181-84.
  • Lavis, J., and Stoddart, G. 1999. Social cohesion and health. McMaster University Centre for Health Economics and Policy Analysis. Working Paper Series #99-09.
  • Lechky, O. 1997. Multiculturalism and AIDS: Different communities mean different educational messages required. Canadian Medical Association Journal. 156(10):1446-48.
  • Lett, D. July 18, 2000. Foreign MDs to get lifeline in NDP plan. Winnipeg: Winnipeg Free Press. A1-2.
  • Locker, D., Clarke, M., and Murray, H. 1998. Oral health status of Canadian-born and immigrant adolescents in North York, Ontario. Community Dentistry and Oral Epidemiology. 26(3): 177-81.
  • MacMillan, H.L., MacMillan, A.B., Offord, D.R., and Dingle, J.L. 1996. Aboriginal health. Canadian Medical Association Journal. 155(11): 1569-78.
  • Marmen, L., and Corbell, J.P. 1999. Languages in Canada, 1996 Census. Ottawa: Public Works and Government Services Canada.
  • Mata, F. 1999. The non-accreditation of immigrant professionals in Canada: Societal dimensions of the problem. Ottawa: Department of Canadian Heritage.
  • Mathieson, C.M. 1998. Lesbian and bisexual health care. Canadian Family Physician. 44: 1634-40.
  • Mayberry, R.M., et al. 1999. Racial and ethnic differences in access to medical care: A synthesis of the literature. Henry J. Kaiser Family Foundation.
  • McComas, J. 1997. Rehabilitation of torture survivors: Are we prepared? Physiotherapy Canada. 49(3): 160-62.
  • Mhatre, S.L., and Deber, R.B. 1992. From equal access to health care to equitable access to health: A review of Canadian provincial health commissions and reports. International Journal of Health Services. 22(4): 645-68.
  • Milnes, A.R., Tate, R., and Perillo, E. 1995. A survey of dentists and the services they provide to disabled people in the Province of Manitoba. Journal of the Canadian Dental Association. 61(2): 149-52.
  • Mooney, G., Hall, J., Donaldson, C., and Gerard, K. 1991. Utilization as a measure of equity: Weighting heat? Journal of Health Economics. 10: 465-70.
  • Moore, G. 1997. Improving health access: It's about attitude. Nursing BC. 29(3): 27-30.
  • Moran, N. 1996. Lesbian health care needs.Canadian Family Physician. 42: 879-84.
  • Naish, J., Brown, J., and Denton, B. 1994.Intercultural consultations: Investigation of factors that deter non-English speaking women from attending their general practitioners for cervical screening. British Medical Journal. 309(6962): 1126-28.
  • Nasmith, L. 2000. License requirements for international medical graduates: Should national standards be adopted? Canadian Medical Association Journal. 162(6): 795-96.
  • National Forum on Health. 1997. The need for an aboriginal health institute in Canada. The situation of aboriginal peoples. Synthesis reports and issues papers - Final report. Vol. II. Canada health action: Building on the legacy.
  • Ng, E. 1996. Disability among Canadian aboriginal peoples in 1991. Health Reports. 8(1): 25-32.
  • Nyman, B. 1991. Increasing access: Developing culturally accessible mental health programs for immigrants and refugees. Canadian Mental Health Association, Manitoba Division.
  • Office of Minority Health. U.S Department of Health and Social Services. 1999. Assuring cultural competence in health care: Recommendations for national standards and an outcome-based research agenda.
  • O'Loughlin, J. 1999. Understanding the role of ethnicity in chronic disease: A challenge for the new millennium. Canadian Medical Association Journal. 161(2): 152-53.
  • O'Neil, J.D., Kaufert, J.M., and Koolage, W.W. 1990. A study of medical interpreters and health communications in Inuit communities. National Health Research and Development Program. #6607-1364-46.
  • Ontario Medical Review. 1996. Exploring the health impact on homelessness.
  • Orr, P., Manfreda, J., and Hershfield, E.S. 1990. Tuberculosis surveillance in immigrants to Manitoba. Canadian Medical Association Journal. 142(5): 453-58.
  • Panel on Health Goals for Ontario. 1987. Health for All Ontario. Report of the Panel on Health Goals for Ontario. Toronto: Ontario Ministry of Health.
  • Parikh , S.V., Lin, E., and Lesage, A.D. 1997. Mental health treatment in Ontario: Selected comparisons between the primary care and specialty sectors. Canadian Journal of Psychiatry. 42(9): 929-34.
  • Peat, M. 1997. Attitudes and access: Advancing the rights of people with disabilities. Canadian Medical Association Journal. 156(5): 657-60.
  • Perez-Stable, E.J., Otero-Sabogal, R., Sabogal, F., McPhee, S.J., and Hiatt, R. A. 1990. Self-reported use of cancer screening tests among Latinos and Anglos in a prepaid health plan. Archives of Internal Medicine. 154: 1073-81.
  • Perrin, B. 1998. How does literacy affect the health of Canadians? A profile paper. Presented to Policy Development and Coordination Division, Health Promotion and Programs Branch, Health Canada. Ottawa: Health Canada.
  • Picot, J. 1998. Telemedicine and telehealth in Canada: Forty years of change in the use of information and communications technologies in a publicly administered health care system. Telemedicine Journal. 4(3): 199-205.
  • Pottie, K., Heyding, R., Masi, R., Roberts, M., and Watson, D. 2000. Marginalized patients: A challenge for family physicians. Canadian Medical Association Journal. 46: 15-17.
  • Redwoood-Campbell, L., MacDonald, W.A., and Moore, K. 1999. Residents exposure to aboriginal health issues: Survey of family medicine programs in Canada. Canadian Family Physician. 45: 325-30.
  • Richard, J., and Jagielski, M. 1999. Hearing the voices of ethnic community in health and health care: A community perspective. Health and Cultures. 141.
  • Robinson, H.C. 1998. The use of ethnic identifiers in epidemiologic research. International Journal of Circumpolar Health. 57 (Suppl 1): 617-21.
  • Robb, N. 1998. Racism can rear its ugly head at medical school study finds. Canadian Medical Association Journal. 158: 66-67.
  • Robb, N. 1996. Medical schools seek to overcome "invisibility" of gay patients, gay issues in curriculum. Canadian Medical Association Journal. 155(6): 765-70.
  • Roberson, N.L. 1994. Clinical trial participation: Viewpoints from racial/ethnic groups. Cancer. 74(9): 2687-91.
  • Roos, N.P., Fransoo, R., Bogdanovic, B., Carriere, K.C., Frohlich, N., Friesen, D., Patton, D., and Wall, R. 1999. Needs-based planning for generalist physicians. Medical Care. Jun;37 (6 Suppl): JS206-28.
  • Roos, L.L., Traverse, D., and Turner, D. 1999. The role of public programs in delivering care to high risk populations. Medical Care. Jun;37 (6 Suppl): JS264-78.
  • Royal College of Physicians and Surgeons of Canada. 2000. Evaluating IMGs: the "FMLAC Process".
  • Royal Commission on Aboriginal Peoples. 1993. The path to healing: Report of the National Round Table on Aboriginal Health and Social Issues. Otttawa: Minister of Supply and Services.
  • Ryan, B., Brotman, S., and Rowe, B. 2000. Access to Care: Exploring the health and well being of gay, lesbian, bisexual and two-spirit people in Canada. Montreal: McGill Centre for Applied Family Studies.
  • Saha, S., Komaromy, M., Koepsell, T.D., and Bindman, A.B. 1999. Patient-physician racial concordance and the perceived quality and use of health care. Archives of Internal Medicine. 159(9): 997-1004.
  • Sarginson, R. 1997 Literacy and health: A Manitoba perspective. Literacy Partners of Manitoba.
  • Sent, L., Ballem, P., Paluck, E., Yelland, L., and Vogel, A.M. 1998. The Asian Women's Health Clinic: Addressing cultural barriers to preventive care. Canadian Medical Association Journal. 159: 3504
  • Seth, T., Nair, C., Nargundkar, M., Arand. S., and Yusuf, S. 1999. Cardiovascular and cancer mortality among Canadians of European, South Asian and Chinese origin from 1979-93: An analysis of 1.2 million deaths. Canadian Medical Association Journal. 161: 132-37.
  • Shah, C.P. 2000. Representation and employment equity in the university sector. Conference abstract.
  • Shah, C.P., and Farkas, C.S. 19 85. The health of Indians in Canadian cities: A challenge to the health care system. Canadian Medical Association Journal. 133(9): 859-63.
  • Shah, C.P., Svoboda, T., and Goel, S. 1996. The visiting lectureship on aboriginal health: An educational initiative of the University of Toronto. Canadian Journal of Public Health. 87(4): 272-74.
  • Sharif, N.R., Dar, A.A., and Amaratunga, C. 2000. Ethnicity, income and access to health care in the Atlantic Region: A synthesis of the literature. Maritime Centre of Excellence for Women's Health.
  • Shibogoma Evaluation Committee. 1999. Evaluation of transferred health services in the Shibogama First Nations Council communities of Kingfisher Lake, Wapekeka, and Wunnumin Lake. Wunnumin Lake and Sioux Lookout, Ontario: Shibogama Health Authority.
  • Speck, D.C. 1989. The Indian transfer policy: A step in the right direction or revenge of the hidden agenda? Native Studies Review. 5: 187-213.
  • Statistics Canada. 1992. Canadian health and activity limitations survey. Ottawa.
  • Statistics Canada. January 13, 1998. 1996 Census: Aboriginal data. The Daily.
  • Statistics Canada. February 17, 1998. 1996 Census: Ethnic origin, visible minorities. The Daily.
  • Stephenson, P.H. 1995. Vietnamese refugees in Victoria, B.C.: An overview of immigrant and refugee health care in a medium-sized Canadian urban centre. Social Science and Medicine. 40(12): 1631-42
  • Stevens, A., Doidge, N., Goldbloom, D., Voore, P., and Farewell, J. 1999. Pilot study of televideo psychiatric assessments in an underserved community. Amercian Journal of Psychiatry. 156(5): 783-85.
  • Stevens, S. 1993a. Community based programs for a multicultural society: A handbook for service providers. Winnipeg: Planned Parenthood Manitoba.
  • Stevens, S. 1993b. Newcomer Canadians and mainstream services. Health and Cultures. 2: 277-91.
  • Stevens, S.E., Steele, C.A., Jutai, J.W., Kalnins, I.V.,
  • Bortolussi, J.A., and Biggar, W.D. 1996. Adolescents with physical disabilities: Some psychosocial aspects of health. Journal of Adolescent Health. 19(2): 157-64.
  • Stewart, M.A. 1995. Effective physician-patient communication and health outcomes: A review of the literature. Canadian Medical Association Journal. 152: 1423-33.
  • Stone, D.A. 1993. The struggle for the soul of health insurance. Journal of Health, Politics, Policy and Law. 18(2): 287-317.
  • Stradiotto, R.A. 1998. Supreme Court declares failure to provide sign language interpretation during medical care unconstitutional. Hospital Quarterly. 1(3): 74-76.
  • Stuart, H.L., and Arboleda-Florez, J. 2000. Homeless shelter users in the post- deinstitutionalization era. Canadian Journal of Psychiatry. 45(1): 55-62
  • Tang, S. 1999. Interpreter services in healthcare: Policy recommendations for healthcare agencies. Journal of Nursing Administration. 29(6): 23-29.
  • Vandergang, A.J. 1996. Consumer/survivor participation in the operation of community mental health agencies and programs in metro Toronto: Input or impact? Canadian Journal of Community Mental Health. 15(2): 153-70.
  • Vissandjee, B., Carignan, P., Gravel, S., and Leduc, N. 1998. Health promotion for immigrant women in Quebec. Revue d'Epidemiologie et de Sante Publique. 46(2): 124-33.
  • Waldram, J.B. 1990. Urban native health care in Canada: The relevance of socio-economic status. International Journal of Circumpolar Health. (Suppl 1): 34-36.
  • Waters, H.R. 2000. Measuring equity in access to health care. Social Science and Medicine. 51(4): 599-612.
  • Wen, S.W., Goel, V., and Williams, J.I. 1996. Utilization of health care services by immigrants and other ethnic/cultural groups in Ontario. Ethnicity and Health. Mar;1(1): 99-109.
  • Wigmore, M., and McCue, D. 1991. No information on a forgotten people: How healthy are native people in Canada when they live off reserve? International Journal of Circumpolar Health. Suppl 1: 90-93.
  • Wilkinson, R.G. 1996. Unhealthy societies: The afflications of inequality. New York: Routledge.
  • Wilson, K.G, Crupi, C.D., Greene, G., Gaulin-Jones, B., Dehoux, E., and Korol, C.T. 1995. Consumer satisfaction with a rehabilitation mobile outreach program. Archives of Physical Medicine Rehabilitation. 76(10): 899-904.
  • Wlodarczyk, K.1998. The interhospital interpreter project. Canadian Nurse. 94(5):22-25.
  • Woloshin, S., et al. 1997. Is language a barrier to the use of preventive services? Journal of General Internal Medicine. 12: 472-77.

a Underserved populations should be differentiated from "underserved areas". Underserved areas are geographic regions, usually rural and remote, that experience difficulty in recruiting and retaining sufficient numbers of health personnel to meet the needs of the population, or are undersupplied with certain health services. The concept of "underserved populations" in contrast refers to those populations who, due to a variety of factors, may not have the same access to health services even though there may be "suffimmunities is therefore of particular importance at this time.

b A refugee claimant is a person who has arrived in Canada and seeks convention refugee status (Citizenship and Immigration Canada). It is important to differentiate between refugee claimants and refugees who are accepted as landed immigrants in Canada and are eligible for health coverage under the same conditions as other immigrants.

d Visible minorities are people other than Aboriginal Canadians who are members of a race other than Caucasian.

e Two-spirit persons are Aboriginal people who are attracted to persons of their own sex, or who are transgendered.

f IMGs are comprised of many different groups but for the purposes of discussion they may be described gereally as "selected physicians" who may be recruited to address problems in physician supply/distribution, and immigrants or refugees whonsgendered.

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Background

In today's environment, constraints affect the health care of all Canadians. The Canadian hallmarks of health care-universality and accessibility-are increasingly challenged. Reports such as The Growing Gap: a report on the growing inequality between the rich and poor in Canada.(Centre for Social Justice, 1999), reflect increasing inequalities in our country. Other Canadian studies, such as the recent one from Centre for Health Evaluation and Outcome Sciences (Wood et al., 1999) have demonstrated that such inequalities result in poorer health status and deaths "from avoidable causes-that is, deaths that could have been prevented through appropriate medical intervention." Moreover, those who are most vulnerable or marginalized are the same ones likely to be adversely affected by the rapid changes to health care taking place across our country.

There have been few opportunities for health professionals, health agencies and community leaders to collaboratively meet and highlight the impact of proposed health care changes on the more vulnerable or marginalized. Partnerships are needed to preserve and further develop health care that is inclusive of the diversity within our society. The Removing Barriers initiative is intended to focus on the growing inequalities within our country and the threat to Canadian values of universality and accessibility in the midst of rapid changes occurring to our health care system.

The Removing Barriers initiative began in 1997, cumulating in a national symposium that brought together community groups, health agencies, professionals and organizations from across Canada. The objectives of the initiative were to promote collaboration, and cooperation and to highlight the health needs of vulnerable or marginalized communities. The first national Symposium, Removing Barriers: Inclusion, Diversity and Social Justice in Health Care, was held in Toronto, Ontario, June 18-20, 1998. (Further information on the initiative can be obtained from the Web site at www.obstacles.org.) The symposium brought together over 250 people from across the country in an effort to foster national recognition of the common needs and issues of these groups.

The first symposium's content and evaluation attest to its success. They are:

  • Diverse groups from across Canada met to explore health issues of vulnerable or marginalized communities;
  • Recommendations to the health system to integrate and include the needs of vulnerable or marginalized communities;
  • The diverse needs of Canadians within the context of a publically funded health system were delineated.

The symposium was truly a national initiative, providing an opportunity for national dialogue, understanding and approach to the health care issues of vulnerable or marginalized populations across the country. Despite its accomplishments, the symposium could only begin the process required to remove barriers. Follow-up was necessary to develop and strengthen national cohesion and understanding further. The 1998 symposium evaluations clearly recommended a future symposium.

Subsequent to the 1998 Removing Barriers Symposium, the health system has been struck with new challenges.

  • There continues to be an increasing disparity between higher and lower socio-economic groups across the country.
  • The Canadian health care system is under increasing pressure to undergo health

reforms in each of the provinces. Unless constant attention is placed on the issues of inclusion and diversity, it is likely that we will move closer to a two-tier system.

The federal government is working to establish a national social and health accord. Interprovincial dialogue is required to identify specific and common needs and issues among the provinces, especially with specific reference to those who suffer from the greatest health inequities-lower socio-economic, vulnerable or marginalized groups. The existing barriers of these groups must be addressed in both the social support and health care services systems.

Provincial recognition of the issues of inclusion, diversity and social justice that have gone into the development of the Canadian health system is essential to help maintain the principles of the Canada Health Act. The objective and theme of Removing Barriers II was to address these issues.

Process

Two separate but integrated components were undertaken as the continuation of the Removing Barriers initiative progressed.

Regional Workshops

In conjunction with the Canadian Council on Multicultural health (CCMH), each health region was invited to participate in a regional workshop on the theme of inclusion, diversity and social justice. The workshops served to secure involvement of local agencies, organizations and health professionals to:

  • Contribute to the process of building national understanding, cooperation and coordination of issues by identifying their provincial issues.
  • Promote and encourage participation in the initiative locally.
National Symposium

The Removing Barriers II National Symposium was held in Vancouver, British Columbia in May 2000. The theme-Keeping Canadian Values in Health Care-focused on the principles of the Canada Health Act: Universality, Accessibility, Public Administration, Comprehensiveness and Portability. By exploring these principles in the context of the country's current needs, the intent was to build on the Canadian health system access and ensure its continuity into the new millennium.

The objectives of the Removing Barriers II Symposium were to:

  • Build on the success of the 1998 national symposium, Removing Barriers: Inclusion, Diversity and Social Justice in Health.
  • To unite the provincial initiatives into a national perspective.
  • To elicit issues that merit further attention.
  • To share successful initiatives that address inclusion, diversity, social justice in health care, and encourage modeling.

Two specific actions were the direct result of the symposium: the Declaration on the Values in health Care in Canada; and the request to the federal government for the establishment of a working group on diversity, inclusion and social justice. The declaration statement was developed through discussion in plenary sessions which concluded each day's activities. The draft statement was circulated to participants for final review via the Web site. The declaration statement represents an overview of priority issues that need to be addressed and directions to be taken.

These are just beginning steps in a rapidly changing system that is increasing health inequalities in our country. Undoubtedly there is more to be done. Without such attention, marginalization in health care will increase in our country as well as the disparities. The proceedings and follow-up are a united effort to help address such issues.

Conclusion

Successful change requires time and continuity. The Removing Barriers initiative will need to build on the momentum created. What is needed now is an opportunity to further strengthen those beginnings, and to afford greater opportunities for participation in health care discussions.

A stronger voice is needed in health reforms for the vulnerable and marginalized. Without this voice we risk losing the hallmarks of a compassionate health system that has helped ensure the broad success of the Canada health system: a compassion and inclusiveness that has become an integral component of the Canadian identity.

Ralph Masi Editor and Co-Chair, Removing Barriers II Committee

Vancouver 2000 Declaration on Values in Health Care in Canada

Canada's health care system is one of the most respected in the world. Clear values, visionary policies and specific legislation provide the safeguards. The Charter of Human Rights and Freedoms and the Multiculturalism Act helped create a society in which remarkably diverse people live, work, and interact together in harmony. The Canada Health Act helps maintain the system that receives international recognition as one of the best in the world.

Our national commitment to these Acts has brought broad social benefits to all Canadians. Inclusion and diversity are now integral parts of the continuing growth in all sectors of society but despite our success, there is growing evidence of inequality, and there are clear signs of erosion in our commitment. Failure to address this challenge will lead to increased marginalization.

Maintenance and development of health and well-being across all levels of society requires a renewed commitment to basic social justice and equity for all; these are integral to development, funding, organization and actual delivery of all health care. In addition, effective health care must include health promotion and disease prevention.

Diversity and inclusion must be hallmarks of any attempt to renew our efforts; this is the only way to ensure effective and long-lasting development.

THEREFORE, we of the Removing Barriers Initiative call upon federal, provincial, territorial, and regional governments as well as people from all walks of life to reduce disparities in health by committing to the following priorities.

Inclusivity

A systematic and integrated approach including governance and policy must be developed for all people of Canada that recognizes gender and gender identity, sexual orientation, religion, socio-economic status, physical disabilities, mental health status, ethnoracial background, or other cultural or physical characteristics. There must be the same commitment to the full continuum of care as promised to all through the Canada Health Act. Priority should be given for the development of a systematic and integrated approach for the homeless and those lacking documentation or identification.

Accessibility

Accessibility to health services must be promoted by adapting and situating health care services close to the communities for which they are extended. Explicit standards for inclusivity, employment equity, cultural competency and professional health care interpretation, are needed to reflect this commitment.

Networking, Collaboration and Cooperation

Opportunities must be provided for networking, collaboration and cooperation between health professionals and their communities, and all stakeholders across the country must work together towards the recognition of diversity and the implementation of inclusion.

Health Disciplines Education

Education in all the health disciplines must include mandatory and evaluated content for the development of knowledge, attitudes, skills and judgement appropriate to the needs and care of vulnerable or marginalized communities. Education programs in all of the health disciplines should also encourage representation from individuals from a broad diversity of backgrounds; financial hardship should not be a barrier to entrance to any discipline.

On-going Development

National professional community and health organizations must take on leadership roles to advocate health care for vulnerable or marginalized communities. Research is needed to support policies, programs and practice to meet the needs of our diverse society.

Together, we are Canada!

Planning

The Next Steps

To work toward the commitment of all people of Canada to recognize diversity and to implement inclusion in health care, we recommend the following:

  1. A national working group be struck to provide advice, guidance and monitor progress to national, provincial and territorial governments on inclusion and diversity in health. The national working group should include representation from government, health organizations and agencies, consumers, and health professionals.
  2. Financial and human resources be committed to promoting inclusion and diversity within the health care system at all levels of government. The committed funds should afford opportunities for education and the development of resources to assist health organizations, agencies and professionals to respond to the issues of inclusion and diversity. Funded positions should be established for resource people in both planning and delivery of health care services.
  3. A task force be commissioned to report on health inequalities in the country, and to advise on specific measures that could be implemented within current resources to help reduce such inequalities.
  4. Cutbacks to health services be monitored for increased costs that arise due to increased institutionalization or illnesses resulting from the loss of social or health promotion/disease prevention initiatives.
  5. The development of cultural competency standards for health care, including practice standards, administration, policy, education, delivery, and evaluation considerations.
  6. Health Canada create a Web site for information on disparities in health care, with links to other related Web sites and resources including standards, training, guidelines for providers and key contacts from different communities across the country.

Copies of the full document are available on the Removing Barriers Web site at www.obstacles.org. or frm Suite 406, 1017 Wilson Ave., Toronto, ON, M3K 1Z1

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Part II Language and Barriers to Health Care

Document 1

Summary Report - Symposium on Interpreting in a Health Care Setting

November 24, 2000, Montreal

Prepared by Luc Rochefort
January 2001

Table of Contents

Document 2

Language Barriers in Access to Health Care

Sarah Bowen, B.A., M.Sc.
November 2001

Some sections of this report include excerpts from:
Methodological and Policy Issues in Evaluation of Health Interpreter and Language Access Services (2000) by Sarah Bowen, and Dr. J.M. Kaufert, Department of Community Health Sciences, University of Manitoba, supported by the Multiculturalism Program of the Department of Canadian Heritage.

The author would also like to acknowledge the support and assistance received from Dr. Joseph Kaufert, Department of Community Health Services, University of Manitoba.

Table of Contents

Top of Page

Summary Report - Symposium on Interpreting in a Health Care Setting

Summary

The symposium, which took place on November 24, 2000, was attended by several members of health care institutions and professional orders. The purpose of the meeting was to examine the issues linked to interpreting in a social setting and to strengthen ties between the various players concerned. The guest speaker was Ms. Sarah Bowen, who drew from the paper, The Methodological and Policy Aspects of Assessing Interpretation and Language Access in a Medical Setting.

There is significant cultural, ethnic and linguistic diversity in Canada. In fact, an estimated 2% of inhabitants speak neither official language, be they hearing impaired, indigenous persons or immigrants. Language and cultural barriers have a major impact on the accessibility and quality of health care services. They can result, among other things, in isolating individuals, mistaken diagnoses and inappropriate treatment. They are also manifested in patients' reduced understanding and observance of treatment, poor use of resources and, finally, increased costs.

One solution to ensure equal services for all is to hire interpreters to facilitate communication between patients and care providers. However, the quality of the interpreter also has an influence on the quality of care. That is why institutions like the Regional Office of Health and Social Services in Montreal Centre foresee a demand for trained interpreters, professional interpreters who have received proper training. In fact, the use of untrained interpreters (volunteers, family members or friends of the patient, or bilingual employees of the institution) entails too high a risk of misunderstanding, interference, forgetfulness, change of meaning, and breach of confidentiality. These risks have an impact on the quality of care.

However, accessibility is still mainly a financial issue. Even though the Supreme Court recognizes effective communication as an integral part of medical services, there is no legislation stipulating who is responsible for paying for interpreting services. Canadian and American studies alike show that language barriers generate additional costs for the health care system. These costs are linked to under-utilization of preventive and primary care programs, higher hospitalization rates and more frequent emergency-room visits due to delayed treatment. Ms. Bowen identified four types of costs: immediate costs (more medical tests); longer-term costs (worse health); costs to patients and their families (loss of time, loss of wages, premature death); and finally, costs in terms of other government-guaranteed services (education and justice).

Symposium participants identified some courses of action and thought. First, there was the importance of establishing training and certification criteria for interpreters, and the need to train care providers to work effectively with interpreters. Second, given the lack of legislation, it would be wise to consider formulating national standards. Lobbying on interpreter certification, on mandatory use of trained interpreters and on funding interpreting services could begin. Third, cooperation among associations should take the form of pressure to raise decision-makers' awareness of the importance of interpreting and the need to free up funds for research in this area. In fact, there is a notable lack of data on the issue. The research could look at costs, the various groups likely to benefit from interpretation services, the complex nature of the situation, the impact of nonexistent services, etc.

The participants' objectives at this meeting were to increase the visibility of interpreters' role, to raise public awareness and consciousness on the part of organizations and institutions with regard to the advantages of professional interpreting services. The Critical Link Canada was seen as the ideal agency to coordinate funding and dissemination of this nationwide effort in the short term. The national impact of this initiative will be examined at another meeting in the coming year.

Symposium Objectives

The objectives of the November 24, 2000, symposium were to :

  • improve interpreting services for users
  • better understand the issues involved
  • channel the resources needed for national lobbying in the area of interpreting, and
  • strengthen ties among the various organizations and institutions participating in the symposium.

Members of health care institutions and organizations, as well as members of professional orders were invited to discuss the topic. (Guests are listed in the Appendix. )

Background

Access to health care services on the part of allophone, indigenous and hearing-impaired communities is still a real issue in Canada. In fact, there are certain barriers to accessibility. Jalbert 1 , Gravel and Battaglini 2 identify, among others, objective difficulties (economic, geographic, language-related and administrative), lack of familiarity with available resources, language and communication problems, and cultural factors.

The Canada Health Act sets out five criteria for the equality and quality of services for all Canadian residents and citizens: comprehensiveness, universality, public management, transferability and accessibility. In this respect, interpreting services are extremely important, since they make communication possible during the care episode. However, despite the importance of the interpreter's role, there are no regulations governing interpreting services from one institution to another, let alone across the nation.

Interpreters act as intermediaries in the health care network. The flow of information between interlocutors, which enables proper diagnosis and treatment, is in the hands of interpreters. As such, and as an instrument that facilitates communication between health care users and providers, interpreters become an ideal tool for social integration. Their work contains the notion of assistance, right alongside health care professionals (although their roles differ considerably). Interpreters are therefore an essential part of care. But what do we mean by interpreter?

The term interpreter takes on a number of meanings within the health and social services system. It covers both trained and untrained interpreters. Trained interpreters are professionals who have taken interpreting courses or tests that establish their skill. Untrained interpreters are volunteers- patients' friends or family members, bilingual employees of the institution, or community volunteers. Impartiality, confidentiality and accuracy of information are all part of trained interpreters' rules.

However, translating is not a simple act, even for trained interpreters. It is the passage from one code to another, and becomes part of a relationship, sometimes affecting the intimacy of said relationship. In this respect, using an interpreter changes some aspects of care providers' practice.

When a trained interpreter is used, this relationship is more neutral. When the interpreter is untrained, he or she is involved in a relationship with the client -- a relationship that is difficult to put aside during communication. When interpreting the discourse between the care provider and the patient, the interpreter has an influence on the way communication takes place and on the very content of the intervention.

Interpreting within my organization takes place with the help of clients' family members. It usually results in word-for-word translation of the conversation between doctor and client. This situation creates significant problems. For example, one client came to emergency because of nausea (mal au coeur) translated as pain in the heart. They sent for the cardiologist! 3

In fact, untrained interpreting is fraught with potential problems that risk depriving users of effective communication with care providers. That is why institutions such as the Regional Office of Health and Social Services in Montreal Centre prefer to use trained interpreters and recommend the use of trained interpreters by the institutions within its jurisdiction.

The Montreal Children's Hospital receives 3 500 interpreting service requests a year. Before, multilingual employees acted as untrained interpreters. Now, employees receive training and acquire experience in the field. Those with the Regional Board's Interpreters Bank receive more complete training. Untrained interpreters are rarely appropriate in terms of professionalism, ethics and accessibility.

Language Barriers: Impact upon the Accessibility of Health Care Services

The following is a summary of the presentation by Sarah Bowen 4. Examples, quotes and/or comments from symposium participants have been included in italics.

Introduction

When we look at Canada's cultural, ethnic and linguistic diversity, we understand the need to improve the accessibility of services for immigrants and refugees, indigenous persons and the hearing impaired. In fact, lack of communication has major consequences for individuals: isolation, imprecise and fragmented answers, poor use of resources and cultural bias. Although studies show that these groups experience roughly the same problems with the health care network, the services that give them access to the system are generally developed piecemeal.

According to Ms. Bowen, 17% of the country's immigrants have a mother tongue other than English or French. Ten percent of immigrants use a non-official language at home. Among the indigenous population, 25% speak neither of Canada's official languages. In fact, 2% of Canada's entire population are unable to communicate in French or English. These figures are expected to increase over the next few years. This makes equitable access a major issue in terms of accessibility and quality of care.

There are two potential solutions. The first is for institutions to increase the number of care providers who speak several languages, in the aim of improving and facilitating communication during health care encounters . However, this situation is considered a temporary solution, since it involves greater availability on the part of care providers, who must be freed from their tasks in order to perform interpreting duties elsewhere. The other solution is to set up professional interpreting services.

Access to Services

Distorted communication between users and care providers can generate risks in terms of failure to communicate, mistaken diagnosis, inappropriate treatment, reduced understanding and poor observance of prescribed treatment on the part of the patient, clinical ineffectiveness, lower satisfaction rates on the part of care providers and users, consequences attributable to professional malpractice, and death. 5 Communication differences linked to culture, beliefs and social status, added to language barriers, can be the direct cause of poor communication and inadequate treatment.

The Concept of Accessibility

Ms. Bowen put forth the concept of equitable access, which involves providing health care services in such a way that gives all citizens equal access, so that they can achieve optimum health.

Equitable access is compromised by language barriers, among other things. These barriers furthermore lead to mistaken diagnosis, inappropriate treatment, confidentiality problems, information problems, misunderstandings between care providers and users, exclusion from research and problems in terms of the right of access to health care.

These barriers could be overcome by setting up interpreting services that draw on the skills of trained interpreters. However, the major problem with regard to the accessibility of services remains a financial one. If users must pay interpreter's costs, what will happen when institutions tell clients that they must find their own interpreters? Equitable access implies that interpreting costs not be charged to patients.

The Canada Health Act

According to the Canada Health Act, "...the primary objective of Canadian health care policy is to protect, promote and restore the physical and emotional well-being of residents of Canada and to facilitate reasonable access to health services without financial or other barriers." It should be noted that the Legislator did not see fit to define the notions of "reasonable" or "access". Furthermore, the concept of reasonable access is most often interpreted as the lack of explicit financial barriers. The meaning here is therefore far removed from language and cultural barriers.

However, in a decision handed down in 1997, the Supreme Court of Canada ruled that hospitals were obligated to provide interpreters to their deaf patients (Eldridge v. British Columbia). The highest court of the land did not, however, address the issue of whether the failure to provide interpreting services to persons who do not speak either of the official languages also constituted a violation of the Charter of Rights and Freedoms. 6 The Supreme Court nevertheless recognized effective communication as an integral part of providing medical care, and that lack of such communication would result in below-standard care. These principles can also be applied in the case of other persons who speak a non-official language.

  • not be familiar with technical terms and must continually request additional explanations;
  • translate ideas and words incorrectly;
  • answer questions for the client;
  • express personal opinions or breach confidentiality;
  • not be able to interpret the client's response;
  • seriously interfere in the discussion by adding, forgetting or changing the meaning of information;
  • lose track of the conversation.

This was further confirmed by symposium participants:

If the interpreters are not comfortable in one of the two languages, they become more of a distraction than a help.

I work in psychiatry at St. Mary's Hospital. We use a bank of untrained interpreters for a number of reasons, probably due to the time it takes to obtain the services of trained interpreters. In fact, it is more a question of financing. The problem we are currently facing is bias on the part of the interpreters we use: they judge, filter and give a poor interpretation.

A number of issues add to the trained-untrained interpreter dichotomy.

  • When is the presence of an interpreter necessary? Upon the user's request? If possible, at each visit? Upon request by the care provider when he or she notes that communication is difficult? When communication in general could benefit?
  • The patient needs an interpreter, but how does one communicate that need to him or her?
  • Who is responsible for setting up an interpreting system? Who is responsible for funding and operating the system?

The Characteristics of Trained Interpreters

Trained interpreters are chosen on the basis of their bilingualism, their knowledge of the two cultures involved, and are generally trained to:

  • know the terms and subjects in relation to which they are asked to interpret;
  • know the specialized terminology in both languages;
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Issues Linked to the Different Types of Interpreters

Several studies reveal that there is a higher risk of poor communication when using the services of untrained interpreters, which can be very dangerous in a medical setting, as illustrated in the following comment:

The error rate of untrained interpreters (including friends and family members) is so high that, in certain circumstances, it is more dangerous to use them than to use no interpreting services at all. The reason being that they give a false sense of security to the client and the care provider, who think that what they are saying is being transmitted word-for-word. 7

Bruce Downing, from the University of Minnesota, addresses these risks. Interpreters who do not have the required skills become a barrier to communication because they may:

  • fail to understand the care provider's questions;
  • develop the qualities needed to be a skilled interpreter;
  • observe professional ethics and maintain confidentiality;

Training is essential to guarantee the professionalism of interpreters, who become mediators and promote understanding in tripartite relationships. Furthermore, the more care providers work with trained interpreters, the more they trust these interpreters, thus facilitating the care providers' interventions.

Interpreting programs have become available at the university and college level in the last few years. Generally, certification takes place within the institution that uses the interpreters' services.

In addition to training and skill, there is the issue of interpreters' salaries and status.

Despite their specialized training, the sign language interpreters within our association 8 have a hard time getting hired. We should look at the opportunities opened up by technology in the form of video conferencing.

The majority of interpreters at the Multicultural Community Health Centre undergo a training program, Interpreters in the Toronto area manage to make a living from their profession.

Health care research findings have associated language barriers with:

  • a higher risk of mistaken diagnoses;
  • problems with the quality of care, noted by patients and care providers;
  • discrepancies with regard to prescriptions
  • (cancer, pain, general);
  • an increase in invasive procedures;
  • less effective symptom management in palliative care.

Ms. Bowen cited an American study in which Hispanic groups were prescribed less pain medication due to language barriers. The study states that care providers' perception of the Hispanic groups varied according to whether or not they spoke English. Unilingual Spanish speakers were lumped together with foreigners, rather than being recognized as American citizens. Allophones in general are subject to preconceptions on the part of researchers and care providers alike, thus creating a bias in research results.

Existing research establishes a correlation between patients' degree of satisfaction, the outcome of the treatment received and their recourse to lawsuits against care providers. Several studies have documented a decrease in satisfaction on the part of patients who have trouble communicating, 10, 11, 12, 13, as well as their reticence to return for further treatment. 14

In Canada, illiteracy in French and English has also been connected to higher hospitalization rates and a greater number of prescription errors, as well as a lower probability that the patient will follow instructions once discharged from hospital. 15, 16

Patients' failure to conform to medical treatment is due to misunderstandings between the doctor and the client at the level of diagnosis, treatment and instructions contained in the prescription. Resulting medication errors can even reduce clients' willingness to consult the doctor. It goes without saying that clients' satisfaction rates are also affected.

The Consequences of Language Barriers

Numerous studies show that language barriers entail additional costs for the health care system at the user end:

  • poor use of preventive and primary care programs;
  • less frequent use of cancer screening services;
  • greater probability of hospital admissions and emergency-room visits.

A study conducted in 1999 9, showed that language barriers increased the average cost of doctor's visits by over $38 in test charges due to miscommunication that led to mistaken diagnoses, inadequate tests and longer visits. The study also showed that, in the United States, allophones wait an average of over thirty minutes more a day in emergency rooms....

Fallout (costs)

While it is difficult to assess the cost of interpreting services, it is also a complex task to put a figure on the financial repercussions of not having such services. Researchers stand to benefit by including the following points in upcoming studies:

Immediate Costs Linked to Each Contact with the Health Care System

These costs include the time of the doctor, receptionist, interpreter and other health or community support staff, as well as the cost of medical tests, prescribed medication, and cancelled or missed appointments. It is also important to take into account the cost of emergency-room visits due to treatment not provided in time.

Longer-term Costs of all Contacts with the Health Care System

The repercussions of mistaken diagnoses, delayed access to services and poor treatment execution on the part of patients are not always immediately apparent. In order to be valid, cost measurements should consider the impact of longer-term effects, such as changes in the way services are used, the deterioration of overall health, and the tendency to depart from the therapy plan. Finally, the consequences of excluding this clientele from research protocols must also be taken into account.

Costs to Patients and their Families

The costs to patients and their families are rarely examined, be it in terms of lost time, anxiety, loss of wages (and perhaps even of their job), avoidable pain and suffering, deterioration of their state of health or premature death.

In addition to direct costs to patients' health, the impact on family members and society as a whole must be examined.

Costs to other Components of the Health Care Network, the Justice System and the Education System

The health of the population has an important influence on the cost of other government- guaranteed services. Poorer treatment results generate costs not only for the health care system itself, but also for the economy, families and the social environment. In the context of greater awareness of the complex interconnection of health factors, these costs must be taken into account.

Some Courses of Thought and Action

Education

The importance of defining training and certification criteria stood out in the group's reflections.

The Children's & Women's Health Centre of British Columbia uses trained and untrained interpreters, as well as bilingual members of the team. We do not yet have the appropriate, concrete means to evaluate interpreters' skills.

However, interpreters are not always available in regional settings:

The assistance program for new Canadians trains its interpreters. The problem is finding skilled interpreters in a small community like the Sherbrooke region, and to train the care providers with whom they work.

When the refugees came from Kosovo, we didn't really have interpreters.

Health professionals must also be trained on the importance of interpreters, on cooperating with them and work methods to improve cooperation between care providers and interpreters.

It is also essential to train care providers to create a better relationship with interpreters.

It would also be a good idea to take advantage of conferences as a forum to discuss the issues linked to interpreting and the organization of services. This would improve recognition of the interpreting profession by peers and care providers, who do not always see the advantages of using trained interpreters. Conferences would raise participants' awareness of the potential impact of cooperation between care providers and interpreters.

Some documents that deal with crosscultural health issues, such as the Ontario Nurses' Guide, could be distributed more widely.

Organizational Policies

There are no concrete laws or guidelines governing interpreting services. While it is possible for institutions to set up criteria that must be followed, there is no national standard. Lobbying must be initiated not only by the communities that benefit from interpreting services, but also by health care institutions and professionals.

National standards must be established. Recognition of the interpreter's profession must be justified by training, status certification and policies that provide real recognition within the health care network. It is necessary to find new avenues to promote interpreters' status via Canadian lobbying. Furthermore, the Royal College of Physicians and Surgeons of Canada is organizing the PROMED project aimed at improving doctor-client communication. Lobbying efforts should be made in the same direction. In striving for excellence, one must first strive for quality.

It is essential to use interpreters if we want to guarantee the right to access to health care. The problem must be addressed at the national level.

Funding and Paying for Services

Canadian legislation is not very clear about the obligation of health care institutions to provide or pay for professional interpreting services for their clientele.

In the early seventies, the University of Toronto offered a two-year diploma in interpreting. The lack of jobs in that area forced the university to cut the program. There is no specific law in Canada, and no concrete guidelines with regard to interpreting services.

For this reason, public institutions use trained and untrained interpreters, as they see fit.

The Institut universitaire de gériatrie de Montréal uses a bank of volunteers for interpreting services. We also use family members and bilingual staff to act as interpreters.

At the Grace Health Center for Children, Women & Families, we have certified interpreters who have been trained at the cultural and language level.

In Quebec, the Ministry of Health and Social Services and the regional boards finance interpreters' banks, and public institutions pay for interpreting services on demand. However, regardless of the province, financing remains a problem.

Theoretically, in British Columbia, access to interpreting services is available to the population upon request. The problem lies with financing the service and paying interpreters. There has to be a proven increase demands for service in order to obtain funds.

For their part, private clinics rarely use trained interpreters.

Research on potential lawsuits would make it easier to measure risk management, which could eventually lead to the spread of interpreting services.

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Cooperation among Associations

Members must increase pressure on their representatives to make leaders aware of the need for interpreting services. Interpreters' contribution to improving communication with users and providing better care should be an integral part of associations' ethical principles.

Furthermore, health care professional associations must agree on the future of interpreters, and put pressure on institutions and governments to free up research grants and adequate funding for interpreting services. Coordination among Canada's various organizations could take place under the aegis of an association such as the Canadian Deafness Research and Training Institute or Critical Link Canada.

Research

There is a notable lack of data that could be used to justify setting up interpreting services. The Regional Office of Health and Social Services in Montreal Centre is awaiting statistics on users' mother tongues and the percentage of allophones who attend CLSCs. It will then be possible to draw a correlation between this percentage and the total population in each area, and perform a better needs assessment. Organizations and institutions must record at reception the clients requiring the presence of an interpreter. A number of research projects could be carried out to determine the cost of establishing services, the various groups likely to benefit from the service, the complex nature of the situation, the cultural aspect of communication in a health care setting, etc.

In addition to the costs outlined in Ms. Bowen's presentation, the long-term economic repercussions could be the object of research. In order to achieve this, national lobbying should take place to free up funds for research on interpreting services and their impact on the health care network. Fundraising should not be limited to the federal or provincial government; university institutions and professional associations should also be targeted.

The following priorities stand out in the synthesis of Ms. Bowen's text:

  • an analysis of Canadian approaches aimed at setting up applicable standards for health care institutions. In the United States, major initiatives are currently underway to define standards with regard to cultural skill, including access in terms of language, but they are part of U.S. legislation, regulations and standards. Initiatives in Canada must be supported in order to continue;
  • a more detailed analysis should be carried out on the issue of language access rights in Canada;
  • it is necessary to establish guidelines for researchers regarding the complexity of research in this area;
  • finally, funding for research projects should be increased.

Conclusion

Symposium participants gave themselves the mandate to strengthen the accessibility of interpreting services at the provincial and national levels. Participants committed themselves to pursuing national objectives such as increasing the visibility of interpreters' role, and raising the awareness of the public, organizations and institutions with regard to interpreting services.

Potential actions include placing pressure on institutions, equipping clients to become their own spokespersons, and using the necessary publicity tools.

Critical Link Canada- Un maillon essentiel Canada was chosen as the ideal organization to coordinate funding and dissemination of this national initiative in the short term.

The courses of thought and action proposed at the meeting pave the way for a more in-depth examination of the issue.

Critical Link - Un maillon essentiel

Created in 1992, The Critical Link was the forum for organizing the first international conference on community interpreting. Via its Web site, Next link will take you to another Web site Critical Link Canada , this organization aims to connect interpreters throughout Canada and around the world. Sharing thoughts, issues and research on interpreting in a social setting enriches the debate in this field.

The Conference: Critical Link 3

The 3rd International Conference on Social Interpreting will be held in Montreal from May 22 to 26, 2001. The numerous and at times contradictory expectations placed on social interpreters reflect the complexity of this profession. Those attending the conference are invited to address, among other things, interpreters' role, training, skill assessment, the conditions for practice and the organization of the profession.

For more information, visit the Conference's Web site at www.rrsss06.gouv.qc.ca/english/colloque/index2.html.

Next Meeting

Following up on the thoughts expressed at this symposium, another meeting shall take place within the year to look at the initiative's national impact. Furthermore, a look back on the Critical Link 3 international conference could be an opportunity to fine-tune symposium objectives, approaches and results.

List of Participants

Abraham, Diana
Ministry of Citizenship, Culture and Recreation, Ontario
Auclair, René
Conseil québécois d'agrément
Barclay, Suzanne
Children's & Women's Health Centre of British Columbia
Bowen, Sarah
University of Manitoba
Brazeau, Michel Dr,
The Royal College of Physicians and Surgeons of Canada
Clarke, Heather
McGill University Health Centre (Montreal Children's Hospital)
Cormier, Lucille
IWK-Grace Health Centre for Children, Women & Families
Eapen, Sucy Dr,
Canadian Ethnocultural Council
Glass, Kathy Dr,
McGill University
Gordon, Xania
Health Canada
Goulet, Caroline
Service d'aide aux néo-canadiens
Hemlin, Isabelle
Régie régionale de la santé et des services sociaux de Montréal-Centre
Hicks, Susan
Health Canada
Janczur, Axelle
Multicultural Community Health Centre
Karamehmedovic, Nina
Surrey-Delta Immigrants Services Society
Lang, Jean-Claude
Bureau de la Commissaire aux plaintes, Santé et services sociaux
Macdougall, Jamie
Canadian Deafness Research and Training Institute
Madden, Robert
Bureau de la Commissaire aux plaintes, Santé et services sociaux
Martin, Jules Dr,
Canadian Council on Health Services Accreditation
Pichette, Suzanne
Ordre professionnel des travailleurs sociaux du Québec, Centre hospitalier de St. Mary
Rochefort, Luc
Research Consultant
Saber-Freedman, Sara
Régie régionale de la santé et des services sociaux de Montréal-Centre
Scully, Liz
Association of Visual Language Interpreters of Canada
Soucy, Olivette
Institut universitaire de gériatrie de Montréal
Truchon, Sylvie
Ordre des infirmières et infirmiers du Québec

End Notes

1 Jalbert, M. 1998. Travailler avec un interprète en consultation psychiatrique (Working with Interpreters during Psychiatric Consultations) PRISME 8 (3) : 94-111.

2 Gravel, S. et A. Battaglini 2000. Culture, santé et ethnicité vers une santé publique pluraliste (Culture, Health and Ethnicity; Toward Pluralist Public Health) Montréal: RRSSS de Montréal-Centre.

3 Comments of a symposium participant. All passages in italics are taken from participants' comments.

4 It should be noted that Language Barriers: Impact upon accessibility of health services, was presented by Ms. Bowen in English, and touched on the main lines of the document The Methodological and Policy Aspects of Assessing Language Interpreting Services in a Medical Setting. Written by Sarah Bowen and Joseph Kaufert. Completed by Annick Lenoir-Achdjian. 2000. Paraphrase from free translation.

5 Office of Minority Health, Department of Health and Social Services 1999. Assuring cultural competence in health care: recommendations for national standards and an outcome-based research agenda.

6 Stradiotto, R.A.(1998). Supreme Court declares failure to provide sign language interpretation during medical care unconstitutional. Hospital Quarterly, 1(3): 74-6.

7 Office of Minority Health, 1999.

8 Association of Visual Language Interpreters ofCanada.

9 Hampers, L.C., Cha, S. Gutglass, D.J., Binns,H.J. & Krug, S.E. 1999. Language barriers and resource utilization in a pediatric emergency department. Pediatrics,103(6) : 1253-56.

10 Baker, D., Hayes, R., & Fortier, J.P. 1998b. Use and satisfaction with interpersonal aspects of care for Spanish-speaking patients. Medical Care, 36(10) : 1461-70.

11 Carrasquillo, O. et al., 1999. Impact of language barriers on patient satisfaction in an emergency department. Journal of General Internal Medicine, 14 : 82-87.

12 Madhok, R., Bhopal R.S. & Ramiah, R.S. 1992.Quality of hospital services: a study comparing "Asian" and "non Asian" patients in Middlesbrough. Journal of Public Health Medicine, 14(3) : 271-9.

13 Morales, L.S., Cunningham, W.E., Brown, J.A.,Liu & H.,Hays, R.D. 1999. Are Latinos less satisfied with communication by health care providers? Journal of General Internal Medicine, 14 : 409-17.

14 Flaskerud, J. H. & Liu, P.Y. 1990. Influence of therapist ethnicity and language on therapy outcomes of Southeast Asian clients. International Journal of Social Psychiatry, 36(1) : 18-29.

15 Baker, D. (1999). Reading between the lines: deciphering the connections between literacy and health. Journal of General Internal Medicine, 14(5) : 315-317.

16 Ntetu, A.L. & Fortin, J'A. 1995. Analyse des interactions entre les clients autochtones et les intervenants en milieu ethnique (Analysis of Interaction between Indigenous Clients and Care Providers in an Ethnic Setting). Chicoutimi : UQAH

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Language Barriers in Access to Health Care

Some sections of this report include excerpts from:
Methodological and Policy Issues in Evaluation of Health Interpreter and Language Access Services (2000) by Sarah Bowen, and Dr. J.M. Kaufert, Department of Community Health Sciences, University of Manitoba, supported by the Multiculturalism Program of the Department of Canadian Heritage.

The author would also like to acknowledge the support and assistance received from Dr. Joseph Kaufert, Department of Community Health Services, University of Manitoba.

Introduction

There is increasing awareness that a number of populations are underserved by the health system in Canada (Federal, Provincial and Territorial Advisory Committee on Population Health, 1999; Bowen, 2000). Those who do not speak one of the official languages are one of these underserved groups. In some circumstances, French speakers living outside Quebec, or English speakers living within Quebec may also face similar difficulties. However, little research has focused on the effects of language barriers on health outcomes, service utilization, patient satisfaction, or overall costs to the health system or to society.

For those who do not speak an official language, lack of access is unlikely to be due only to "language barriers". Those who are not fluent in French or English are also likely to be underserved for other reasons. They may be recent arrivals to Canada, or come from isolated communities; they may face discrimination as Aboriginal people or visible minorities, or be perceived as disabled due to deafness. Cultural beliefs about health and illness, expectations of the health system, and roles of participants in a health encounter may also differ from those of their providers.

Research from a number of disciplines has highlighted the importance of culture to health beliefs and behaviours, and to patterns of communication. Understanding and respecting differences between cultures has been highlighted as a cornerstone of cultural competence. Language can never completely be understood (or addressed) apart from other factors related to culture and ethnicity. Language and culture are inextricably intertwined.

However, while it is simplistic and misleading to assume that all access difficulties arise only from the lack of a shared language, unless there is communication, these alternative understandings will not be revealed. Language is the base, the prerequisite, for further understanding. We are aware that income, gender, socioeconomic level, education, and a variety of other factors, such as sexual orientation or presence of a disability, are also part of an individual's "culture". However, without effective communication, this heterogeneity within each ethnic/cultural group, and the needs and characteristics of the individual cannot be assessed.

Purpose and Scope of Report

The purpose of this report is to provide an overview of current research describing the impact of language barriers on health care access and quality, and the role that language access programs can play in addressing these barriers. While the review includes studies done in other countries, the report is designed to provide an analysis of the research evidence from a Canadian perspective, and to assess the implications of findings for the provision of health care in Canada. It provides a brief overview of the emerging issues related to models of service provision, interpreter training and service standards; however the report focuses on assessment of the effects of language barriers on access to health care, and quality of care received. It also examines a number of indirect effects of language barriers within the health system, including the issues of research participation, effect on providers, and health care costs.

It is not within the scope of this report to explore a number of important topics related to the provision of language access services. It does not review the important and substantial body of work on the relationship between language and culture. The case study literature that provided the basis for more empirical research on the effects of language barriers is under-represented in this report. Also not included are discussions of theories of interpretation, or analyses of different methods of interpretation. An additional limitation of this report is that it does not include much research that is part of the 'grey' area of unpublished literature. Much of the work done in Canada related to language access programs is found in such reports.

Language has been described as medicine's most essential technology its principle instrument for conducting its work (Jackson, 1998). It has been observed that without language, the work of a physician and veterinarian would be nearly identical (Clark, 1983). Establishing communication enables all parties in a health encounter to participate in the exploration of the illness or condition, and to determine together what aspects of the "culture" of both patient and provider must be considered in diagnosis and treatment.

In comparison with other health "technologies" however, interventions to facilitate language access (such as interpretation), like general issues in provider-patient communication, have received little research attention (Kaplan et al., 1989).

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Overview of Issues

Approaches to Addressing Language Access to Health Care

It is generally accepted that there are two basic approaches to addressing barriers to communication that are caused by the lack of a shared language between client and provider. The first is to increase the number of encounters where client and provider share the same language (i.e., the number of "language-congruent" encounters). The second is to provide some form of interpretation.

Increasing Proportion of Same-Language Encounters

Increasing the proportion of encounters within the health system where there is language congruence between provider and patient is often viewed as the ideal response. Many authors believe that providing an interpreter can never be as satisfactory as direct communication, no matter how skilled the interpreter. This results from the desire on the part of both parties for direct, unmediated communication, and the recognition that even the presence of another person in the encounter can affect rapport and the type of information shared.

Increasing the number of language-congruent encounters can be accomplished either by:

a) Increasing the number of providers who speak other languages, or

b) Increasing the number of minority language speakers who speak the official language(s) of the country.

Increasing the number of providers who speak other languages

A number of different strategies have been proposed to increase the proportion of health care providers who speak the language of minority language communities.

Employment equity strategies facilitate entry of bilingual providers into the health professions. These strategies may either focus on recruiting members of underserved communities into professional preparation programs (pre-service initiatives), or on facilitating entry of trained professionals into a variety of positions (post-graduation initiatives). Special "access" programs to facilitate entry of Aboriginal students into health professional training programs, are an example of pre-service initiatives. However, not all members of targeted groups have the presumed language ability. In Canada, for example, a relatively low number of Aboriginal access students speak a First Nations language. Strategies for facilitating licensing of foreign-trained medical graduates are examples of post-graduation initiatives. Neither of these responses has traditionally been pursued in Canada, although since the Royal Commission on Aboriginal Peoples there have been significant initiatives aimed at recruiting and training Aboriginal health professionals.

While this alternative has an important potential for addressing the larger issue of cultural competence within health professions, it cannot by itself fully address all needs for language access:

  • Many Canadian cities have small numbers of individuals from different linguistic and ethnic groups. It is not feasible to offer even primary care to all communities by a provider of the same ethnic or language background.
  • There is great diversity within ethnocultural communities. Placing patients with providers of the same "ethnic" or language background may actually contribute to distrust if the patient and provider are of different political, socioeconomic, religious or regional backgrounds (Lin, 1983). This form of matching may also provide only partial language access where there are differing dialects; and significant differences in health care beliefs and practises related to socioeconomic status or region may be ignored.
  • While minority language communities advocate for provision of services in the patient's first language, the concern has been voiced that community members do not want to be "ghettoized" with a choice of only one or two providers. This problem is particularly significant in small communities.
  • Confidentiality and emotional safety may be of concern when visiting a provider from the patient's own "community", particularly in small or politically divided communities.
  • Initiatives that focus on increasing representation for only one or more professions will not address all needs. For example, initiatives to increase the number of physicians speaking a minority language are inadequate as the sole response, as physician access is only one component of health care. Comprehensive health system access necessitates dealings with many different health care providers (e.g. nurses, health educators, imaging technicians, dentists, physiotherapists, and psychologists).

Another approach to increasing the proportion of shared-language encounters is to increase the fluency of providers in non-official languages through provision of language training. In the United States, some initiatives have been taken to encourage providers to learn the language of minority groups (Prince & Nelson, 1995; Binder et al., 1988; Koff & McGowan, 1999). The effectiveness of this has not been adequately evaluated. However, our understanding of the limitations of interpretation undertaken by interpreters who are not completely bilingual suggests a number of concerns with this approach. Researchers have highlighted the risks of "false fluency" of providers who, having only limited proficiency in a second language, attempt to communicate without the assistance of an interpreter (Flores et al., 2000). In these cases the provider may believe that s/he understands the patient and is communicating questions and instructions clearly, but serious and dangerous miscommunication can occur.

Increasing the number of minority language speakers who speak English or French.

Rather than developing strategies for increasing the number of providers who speak minority languages, it is often argued that the emphasis should be on assisting minority language speakers to learn English or French. This appears to be the main approach in Canada for addressing language access needs of new immigrants. Lack of fluency in an official language is perceived as a time-limited problem that does not require systemic change. It is assumed that immigrants (who are expected to learn English or French, depending on their province of settlement) will soon be speaking one of the official languages. The number of same language encounters is expected to increase as the newcomer's language proficiency increases. However, second language training and other support services designed to assist newcomers in adapting to Canada are provided for a limited period of time. The same attitude may be expressed regarding Aboriginal languages: as many Aboriginal young people are monolingual in English or French, some suggest that these languages are "dying out", and interpretation services will become less important in the future.

Of course, newcomers generally wish to become independent and to have the same privacy in health interactions valued by all Canadians. Many learn to speak English or French proficiently, and no longer need or use interpreters, even in situations where they are available. It is also true that many Aboriginal people are fluent in an official language.

This response, however, does not address the needs for health care access faced by new arrivals who are considered the group with greatest need (Kinnon, 1999). In addition, the reality is that there are a number of immigrants who do not, even after several years in Canada, speak English or French well. These individuals are more likely to be women with young children, the elderly, the poorly educated, or those suffering traumatic events or psychological disorders (Stevens, 1993b; Jackson, 1998). These same groups have been found to have high levels of unmet need for health services. Recent studies have found that even several years after arrival, a number of newcomers lack the language skills to communicate with their health care providers in English or French. Many more are able to communicate adequately for what they believe are straightforward problems, but are unable to understand more complex disorders or cope with highly stressful health-related events in a second language (Stevens, 1993b; Bowen, 1999). Similar findings have been reported in other countries (Jackson,
1998).

In addition, the argument that the need for language access services will diminish over time fails to address either the current reality of many First Nations and Inuit persons who are not fluent in English or French, or the rights of First Nations and Inuit people to maintain their own languages. While services for Deaf people have often been provided within the context of « disability »-related access services, many Deaf people identify deafness not as a disability, but as a culture. As such, they wish to preserve both their culture and language (Swanson, 1997; Witte & Kuzel, 2000). Promotion of cochlear implants for Deaf children identifies deafness as a disability, and in attempting to incorporate Deaf children into "mainstream" culture, also aims to increase the number of official language speakers.

Providing Interpretation Services a

The second major approach to improving language access accepts that there are significant communication barriers between many patients and providers. While individuals (or specific language communities) may gain language fluency, and eventually no longer need interpretation services, it recognizes that there will always be a need for language access services for some members of society. This approach will be the focus of this report.

Interpreter functions may take many forms, and the diversity of program models and interpreter roles creates additional difficulties in designing valid research and evaluation models. First, the person performing the interpreter function may be a family member, a community volunteer, a staff member of a health institution, a bilingual health care provider or a trained professional interpreter. The untrained interpreter's level of proficiency in both the official and minority language may vary, as may his or her knowledge of the subject area for which interpretation is needed. Volunteer or untrained interpreters may or may not have received training, either in the skill of interpreting or in professional ethics. The need to maintain confidentiality and objectivity, emphasized in professional ethical codes of conduct in health interpretation, is seldom recognized by informal interpreters.

Second, both the ideal and performed role of the interpreter may vary. The interpreter may be expected to provide anything from straightforward neutral language interpretation, to cultural interpretation, advocacy, or health educator functions (Putsch, 1985). This range of service models and interpreter roles, and variation in skill and training, creates significant challenges in establishing standards or comparing research from one program to another. In addition, significant variation can be found between providers in both their awareness of the impact of language barriers and their skill in working with interpreters. This also affects the effectiveness of the interpretation process. The risks of using untrained, informal interpreters, the various roles played by interpreters, and models of interpreter service provision will be discussed in more detail in the following sections.

Stakeholders in Language Access Services

At present, there are many varied and often competing demands within the health care system. On the issue of language access, a number of different stakeholders may assert alternative views on the provision of language services. These stakeholders include health care providers, administrators, government policymakers, human rights bodies, community, advocacy or consumer groups, training institutions, entrepreneurs, and members of First Nations, immigrant and Deaf communities. Some may assume that all stake- holders are concerned about the same thing the improved health of the client. However, the diversity of stakeholder group interests suggests that they may actually have varying agendas. These may include:

  • meeting funding or legal requirements (as in the United States, where federal funding may be contingent on providing language access services);
  • reducing inappropriate or high cost service utilization;
  • protecting an organization from liability;
  • improving health outcomes for disadvantaged groups; or
  • gathering information to support or justify an existing program.

These varying agendas in policy and program development drive both expansion and containment of language access services. For example, administrators may favour a narrower evaluation of more circumscribed models of objective interpretation and outcome criteria, and may emphasize costs as the dominant dimension. Health care users and advocacy groups, on the other hand, are more likely to promote a broader evaluation based on rights to access and health outcomes.

Initiatives for Health Reform/Managed Care - Policy initiatives emphasizing "health reform" and "managed care" have as a goal decreasing unnecessary and inappropriate use of the health care system. The impetus for such reform is to contain costs and direct resources more efficiently and effectively. Interpreter services will therefore be expected to receive support if they can be demonstrated to decrease costs. The focus on increased efficiency and cost saving appears to have been a major factor in the increase in research related to the impact of language access in the United States.

Fear of Litigation/Legal Challenges - Fear of malpractice suits and legal sanctions are important factors in stimulating the discussion on interpreter services in the United States. This has not been as important a motivator in Canada, although concern about malpractice is growing, and recent cases successfully argued on the basis of the Canadian Charter of Rights and Freedoms, suggest that legal challenges may become a more important force in the future (Champion, 2000).

Competition Between Health Care Providers - Adoption of managed care in the United States has created a situation where, in order to enrol additional members, specific services are offered to attract certain target groups. This has resulted in some managed care providers targeting patients with limited fluency in English for enrollment in their plans, and including language access services in the package provided to them (Herreria, 1998). One writer states, "Beyond being a culturally sensitive « nice thing to do », providing interpreter services can give a hospital a significant marketing edge" (Larson, 1997:20).

The same forces are not present in Canada's publicly funded system. Some institutions (e.g. faith-based services) have had a traditional relationship of service provision with specific language communities; however this varies by region and by institution. While there is an expectation that health facilities address the needs of patients within their region, whether the devolution of responsibilities for health care to regional health authorities results in greater responsiveness to the needs of language minorities is yet to be seen.

Technology Development - The development of remote technology for interpreting (such as telephone language lines) has created the opportunity for entrepreneurs to package a simple, easily accessible product, which can be "understood" by health care providers. There is also the potential for innovations in "tele-health" or "tele-medicine" to address language barriers in much the same way as they now address distance barriers, both through the provision of multilingual health information, and possibly by limited use of distance consultation.

Human Rights Legislation - Human rights legislation in Canada provides a framework within which rights can be challenged. However, unlike some other countries, where legislation linking funding to addressing language/cultural barriers has been an important force for change (Perkins & Vera, 1998), this has not yet emerged as a major force in Canada.

The Role of Research Evidence - The emphasis on cost containment within the health care system has increased demands for "evidence-based" decision making. Until recently, there was little research available on the effects of language barriers and language access services to guide policy and program development. Although research is still in the early stages of development, there have been several important studies conducted over the past few years. These studies have provided evidence that language barriers are associated with differences in service utilization, patient health outcomes, patient satisfaction, patient "compliance", participation in health research, protection of patient rights, and patient knowledge of diseases and conditions. The significance of these findings increases when links are made with related research (such as patient/provider communication and literacy in an official language).

The objective of this report is to review this recent research. The environment within which the research is conducted affects the research undertaken, and the responses to it. In the following sections, various cultural assumptions, policy agendas and evaluation traditions will be explored. They have affected the development of models of research and evaluation, priorities for research and the kind of data collected.

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Current Issues and Initiatives
Current Issues in Interpretation

The focus of research to date has been on the question of whether, and to what extent, language barriers (and language access programs) affect patients, providers, and the health care system. In addition, there are four related issues which are currently receiving research attention: defining the interpreter role; establishing the most effective models of service provision; professionalization of the interpreter role (addressing the issues of training, standards and accreditation); and economic evaluation of language barriers and program responses. A brief overview of each of these follows.

Defining the Interpreter Role

There has been a debate for many years about what exactly is meant by "interpretation", how broadly the interpreter's role can be defined, and whether objective language "translation" can (or should) be combined with other roles (such as cultural interpreter, educator, mediator or advocate). This debate has highlighted crucial issues for service provision, and cannot be resolved easily (Downing, 1995).

On the one hand, both providers and patients express concern about an expanded role for language interpreters, which could include functions such as advocacy or cultural mediation. Professionals want direct communication with the client, and are often uneasy with any role other than exact transmission of messages. A number of case studies in the descriptive literature, describing distortions, censoring and influencing by untrained interpreters, make this a legitimate consideration for providers (Marcos, 1979; Downing, 1992). Those requiring the services of an interpreter may also object to the assumption that they require any assistance other than language interpretation, and identify themselves as capable of doing their own "cultural mediation".

On the other hand, many recognize the inherent "power imbalance" that exists within the health care provider/client relationship. They also see the risks that arise through miscommunication not simply because of a lack of fluency in the dominant language, but also due to different assumptions related to roles, health, and appropriate communication. (Putsch, 1985; Stevens, 1993b; Jackson, 1998)

Varying interpreter roles, in different programs and contexts, pose important research challenges. One cannot assume, for example, that the impact of a language/cultural interpreter/advocate will be the same as that of an interpreter who limits his or her role to strict language interpretation (as in remote phone interpretation). In addition, interpreters do not necessarily have equivalent levels of experience. A major limitation of much of the research undertaken to date is that the proficiency level or role of the interpreter is rarely considered and/or controlled for in the research design. More research is needed to determine the effect of various interpreter functions, and the role played by health interpreters.

Models of Service Provision

A related but separate issue is that of models of service provision. The kinds of interpretation services provided to patients may vary considerably. Such services may be provided by:

  • family members or friends of the client,
  • bilingual personnel within the health care system,
  • community language bank volunteers,
  • medical interpreters who are trained and employed by the health institution,
  • paraprofessionals with health, outreach, or educational responsibilities, who include interpretation as part of their role,
  • other programs or services that address language barriers.

As indicated above, many of the current responses to language barriers in the health system in Canada rely on untrained and often unpaid
« volunteers ». These responses are not "models" of service, but "make-do" solutions in the absence of a formal, defined service. There is however, consensus among experts in the field that untrained interpreters pose many risks to both the patient and the provider risks that may be greater in many cases than having no interpreter at all. A recent report of the U.S. Office of Minority Health (1999) observes:

"...The error rate of untrained "interpreters" (including family and friends) is sufficiently high as to make their use more dangerous in some circumstances than no interpreter at all. This is because it lends a false sense of security to both provider and client that accurate communication is actually taking place."

Determining which model of trained, professional interpretation is most effective in a given situation is not as clear-cut. The diversity of practice settings, variations in the size of populations of non-official language speakers, as well as differences in supports available in specific communities, pose challenges to determining effective and affordable models. The "model" of service provision cannot be isolated easily from the definition of the interpreter role. The objectives of a particular program (whether to provide core "translation" functions, or alternative roles in cultural mediation) will affect both the expectations of the interpreter's role and the model of service provision.

Professionalization of the Interpreter Role

Although reliance on untrained interpreters remains the norm in many Canadian centres, there is currently an emphasis on developing competency standards and performance evaluation tools for interpreters. This reflects a movement toward professionalizing and accrediting health interpreters (Downing, 1997; Ozolins, 1998). Paid interpreters are not always professional interpreters. There is great variation in the quality of training obtained, and the level of skill demonstrated by interpreters in Canada, even when they are employed as interpreters.

In other health professions including medicine (Friedson, 1970; Coburn et al., 1983) and nursing (Olesen & Whittaker, 1968), a process has been documented through which health practitioners have attempted to legitimate and legislate defined relationships with the client. Where professions have succeeded in defining membership (by establishing laws, setting internal standards of practice, and adopting professional codes of ethics), clients and practitioners are able to interact on the basis of defined obligations defining conduct and reciprocity. For example, provincial "medical acts" gave physicians control over prescribing many primary diagnostic and treatment activities. They do this by defining roles, establishing standards of practice and restricting the roles of other professions and alternate practitioners (Coburn et al., 1983).

However, this model of professionalization may not be the most appropriate for developing a "profession" of health interpretation. This is because professions such as medicine are based on a unique relationship with the client. In contrast, although interpreters may function as private contractors, their role as intermediaries between health professionals and clients makes it difficult to achieve independent professional status based on having a separate relationship with the client. In fact, the advocates most strongly committed to professionalization are often those most likely to resist definitions of the interpreter's role that are characterized by independent power relationships.

Economic Evaluation of Language Barriers and Program Responses

While issues of role definition, models of service provision, and professional standards have been the focus of attention from those working in the field, another issue has also been gaining prominence. With greater awareness of the costs of language barriers, there is increasing interest in undertaking an economic evaluation of interpreter services. However, very little research has been done in this area, and the economic evaluation of health care is itself a newly developing, though expanding, area.

Proponents of improved language access in health care often express concern about economic evaluation, fearing that it may result in avoidance of the issue of rights to service. However, economic evaluation is only one component of decision making, which should also include other forms of evaluation (efficacy, effectiveness and availability) and a review of ethical issues related to service provision. There are also concerns that researchers may define costs and consequences of language barriers too narrowly, resulting in an underestimation of the true societal costs of failure to provide language access.

Current Initiatives

There is increasing awareness in many countries of the importance of communication in the area of health care access and quality of care, and interest in promoting research on the effects of languge barriers. For example, the United States has undertaken a review of national standards for culturally and linguistically appropriate health care. These standards explicitly address the clients' right to bilingual staff or interpretation services, access to information in their own language, professional standards for interpreters, and inclusion of language identifiers in data collection. These standards are based on U.S. legislation and enforcement capabilities, and describe a level of service which is certainly not yet available for minority language speakers in Canada (Office of Minority Health, 1999). Belgium has made a commitment to a "cultural mediator" model for health interpretation, and is actively promoting and disseminating research (Verrept & Louckx, 1998). In Australia, a public inquiry examined rights to interpreter services in the justice system and in health care (Lawrie,
1999).

In Canada as well, there is renewed interest in the issue of language access to health care. National conferences on community interpretation have been held in Toronto (1995) and Vancouver (1998). Since these conferences, panels, networks and internet interest groups have been exploring issues related to the testing and accreditation of interpreters in Canada, with some provinces (such as Alberta and Quebec) developing more advanced programs. In May of 2001, Canada will be hosting the Third International Critical Links (Interpreting in the Community) Conference.

In 1999, Health Canada published Canadian Research on Immigration and Health (Kinnon, 1999), and research funded through the Metropolis Project is expected to contribute to the knowledge on health access issues. Kinnon noted the lack of research on the effects of health system support on immigrant health, and the associated scope for initiating new research in this area.

A preliminary review, funded by the Department of Canadian Heritage (Bowen & Kaufert, 2000b), identified several critical ethical and methodological issues related to language access research. A Health Canada report, Access to Health Care for Underserved Populations in Canada, provided a framework for exploring barriers to access for a number of populations, including those facing language barrriers (Bowen, 2000).

In Canada, few health jurisdictions or institutions have implemented policies requiring that some form of language access service be provided to all patients. Additionally, each of the communities for whom language access is an issue is viewed differently in terms of rights to language access. Services for specific communities have tended to develop in isolation from one another.

A landmark ruling in 1997 by the Supreme Court of Canada determined that hospitals were required to provide interpreters for Deaf patients (Eldridge vs. British Columbia [Attorney General], 1997). This recognition, that effective communication is an integral part of the provision of health services, has focused attention on the rights of other language minorities in the country.

In November 2000, a day-long national symposium, Communication Barriers: Challenges and Responsibilities of Caregivers and Institutions, supported by Health Canada, brought together representatives from a number of different areas: health care providers, government representatives, Deaf and immigrant community representatives, and providers of language access services. It explored the implications of language barriers for the health professions, focused attention on the specific issue of health interpretation, and emphasized the need for a coordinated national response to the development of standards, training and certification of interpreters. It also endorsed the need for Canadian research (Rochefort, 2000). Specific interest was expressed in evaluating evidence of the impact of language barriers on health and utilization of health services.

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The Canadian Context of Service Provision

Introduction

In many ways, the issues faced in the provision of health services to those who lack proficiency in an official language may appear similar between countries. Certainly, from the perspective of users of health services, many of the difficulties and risks involving communication are the same. In many jurisdictions there is no organized health professional interpretation service. Because the health care system does not take responsibility for ensuring communication between patient and provider, the problem of finding, evaluating, booking and even compensating an interpreter remains the responsibility of the patient.

There is, however, significant variability between health systems, and between countries. While much research and evaluation undertaken in other countries may have important implications for Canadians, every health care system is an expression of "the political culture, the social and moral values, and economic imperatives" of the society it serves (Canadian Bar Association Task Force on Health Care, 1994:1). This section is therefore intended to provide an overview of the context within which health care is delivered in Canada, how issues of access and equity related to health care have been understood, and how research related to language access has developed.

Constituencies Affected by Language Barriers in Health Care

In Canada there are four constituencies who may face barriers to health care due to having a non-official first language b :

  • First Nations and Inuit communities,
  • Newcomers to Canada (immigrants and refugees),
  • Deaf c persons, and
  • Depending on location of residence, speakers of official languages (French and English).

Provision of language access services, and rights to such services for each of these constituencies are shaped by a distinct historical, legal and political context. Although many of the issues faced by patients may be the same, there has historically been little joint advocacy or even sharing of expertise between these four language constituencies.

Health Needs of Language Constituencies

There are significant differences in health status and prevalence of disability between the various constituencies. Aboriginal people are recognized to have lower health status than the general Canadian population, as measured by almost every health indicator (Health Canada, 1999). These differences are attributed to widespread and historical inequities. In contrast, newly arrived immigrants are generally healthier than those born in Canada, and have longer life expectancy and disability-free years (Chen, Wilkins & Ng, 1996; Chen, Ng, & Wilkins, 1996). This is often explained by the "healthy immigrant effect": people who emigrate tend to be in better health, are often younger, and are medically screened before being accepted into Canada. Over time, the health status of immigrants tends to become more similar to that of persons born in Canada. While this is often understood to result from the fact that they are exposed to the same environmental factors as the Canadian-born, it may also be because they face additional health risks, such as discrimination (Kinnon, 1999) or reduced access to health services. Among immigrants there are significant differences in health status based on country of origin, socio-economic status and education (Dunn & Dyck, 2000). Refugees tend to have lower health status and higher health care needs than other immigrants, and are less likely to speak English or French. There is evidence that Deaf persons also report lower health status (Zazove et al., 1993; McEwan & Anton-Culver, 1988), although one study found that pre-lingually deaf adults were at no greater risk of mortality (Barnett & Franks, 1999).

Similarities and Differences Between Constituencies

Little research has examined the similarities or differences in the effects of language barriers between the four constituencies. In particular, the Deaf community is typically not considered a language minority in the same sense as speakers of other minority languages, although some authors have described the similarities between them (McKewen and Anton-Culver, 1988; Barnett, 1999). Similarities include: limited access to official language information, exclusion from "ambient" sources of information, infrequent encounters with physicians or other health care providers from their own cultural group, and language barriers to appropriate care (Barnett, 1999). One U.S. study compared the self-reported experiences with health communication of 119 immigrants with a grade four to five level of English comprehension, with 22 Deaf persons. The two groups were similar in age and education. Participants were asked a variety of questions about communication with their physicians, as well as demographic information. The authors found no significant differences between the groups in their ability to correctly identify commonly used medical words, or in their assessment of how often they failed to understand their physician or ask clarifying questions. There were, however, significant differences in responses in three areas: deaf participants were more likely to feel their physician did not understand them, and were less likely to attempt to re-explain themselves. They were also less likely to report being able to speak to a physician in their language of fluency (McEwan & Anton-Culver, 1988).

Historical and Cultural Context of Language and Service Provision in Canada

Canada has defined itself as a bilingual, multicultural country. Passage of the Official Languages Act in 1969 entrenched in law the rights of both English and French speakers to a range of services in their first language (Bastarache et al., 1987). However, Francophones living outside of Quebec (and some Anglophones living in Quebec) may also face language barriers to care in their first language, depending on the location of their residence (Martin, 1992). There is no specific legislation mandating provision of language services in other than the two official languages, except for criminal proceedings.

Aboriginal languages have special recognition as protected languages in some regions (Bastarache et al., 1987). Before 1999, Aboriginal languages had special legitimacy in the Northwest Territori es, and with the creation of Nunavut, Inuktituk has become an official language of the government. Federal administrative and service delivery systems, such as the First Nations and Inuit Branch of Health Canada, have provided some interpretation services for northern communities, and for some patients requiring tertiary care in urban hospitals. While 80 to 90% of urban Aboriginal people in Eastern Canada speak an official language, a significant proportion of Aboriginal people in Western Canadian cities may lack the functional language capability to communicate in an official language during encounters with the health care system. The needs of urban Aboriginal people were not seen as a priority target population for interpreter services provided by the First Nations and Inuit Branch, although hospital-based programs such as those in Winnipeg, Brandon, Thompson and Regina serve the needs of all Aboriginal peoples who require language access services. This includes a significant number of northern Inuit and First Nations people who come to urban areas for treatment. Increasing sensitivity to the rights of First Nations peoples, increasing self-management of health programs, and lobbying by First Nations political organizations are contributing to greater responsiveness to language/cultural access in health care for Aboriginal peoples. This creates a very different context for service provision than for immigrant minority language speakers.

Most of the Deaf community in Canada uses American Sign Language (ASL) for communication, although French Sign Language (LSQ) is also used. Although the Deaf community has differentiated its advocacy for recognition of Deaf culture from other disabling conditions, provision of sign language interpretation services for the Deaf community has followed a different path that of advocacy for disability rights. These rights are more clearly specified in Canadian Human Rights legislation; and a landmark Supreme Court ruling (Eldridge v British Columbia [Attorney General], 1997), determined that failure to provide a sign interpreter when necessary for effective communication in delivery of health care services constituted a violation of the Canadian Charter of Rights and Freedoms (Stradiatto, 1998).

"Immigrant" Languages

Language barriers faced by immigrants in Canada are generally considered to be "newcomer" issues, rather than minority issues, as in some countries such as the United States. While "minority" issues are more likely understood in terms of rights of marginalized or racially/ ethnically different groups, "newcomer" issues are seen to be time-limited, related more to the adaptation of the newcomers than to inherent barriers within societal systems. It is not surprising then, that in many cities, it is "settlement agencies" or ethnocultural groups themselves that provide most or all of the interpretation services. However, many settlement services are only funded to provide services focusing on "settlement" for a limited time after arrival, and do not have the health expertise, the authority, or the financial resources to address health access needs. Unfortunately, in most cases, community-based interpretation services provided through immigrant-serving agencies have not been integrated with health services, and do not receive health funding. This marginalization has resulted in little sharing of expertise between settlement and health services, limited funding for service provision, training, or research, and limited impact on policy development. For immigrants, language access to health has remained a "settlement" and not a health issue, even though many immigrants require assistance communicating with their providers for many years, or even their whole life.

The Canada Health Act: Principles of Accessibility, Universality and Comprehensiveness

The health care system in Canada grew out of a commitment to removing financial barriers to health care. The Canada Health Act provides universal medical coverage to all its citizens. "The primary objective of Canadian health care policy is to protect, promote and restore the physical and mental well-being of residents of Canada, and to facilitate reasonable access to health services without financial or other barriers" (Canada Health Act, 1984). Three of the five key principles of the Canada Health Act (CHA) are of particular relevance in this context: access, universality, and comprehensiveness.

The Canada Health Act requires that provinces "provide for insured health services on uniform terms and conditions and on a basis that does not impede or preclude, either directly or indirectly, whether by user charges made to insured persons or otherwise, reasonable access to those services by insured persons". This is the principle of accessibility. However, because access is not defined, it is not clear what would constitute reasonable access. Often, access is defined simply as the absence of explicit financial barriers (such as user fees). Universality requires that 100% of the residents of a province be entitled to insured services on uniform terms and conditions. Comprehensiveness requires that a health insurance plan cover all "insured health services provided by hospitals, medical practitioners and dentists, and where the law so permits, similar or additional services rendered by other health care practitioners." All services that are "medically necessary for the purpose of maintaining health, preventing disease, or treating an injury, illness or disability" are included.

Health interpretation services have not to date been considered medically necessary. Instead they are seen as ancillary services that are not universally insured.

Rights to Language Services in Health Care

Claims involving rights of language access in health care in Canada are principally based on interpretations of the Canadian Charter of Rights and Freedoms, the Canadian Human Rights Act, provincial and territorial Human Rights Codes, the Canada Health Act, provincial health acts and the Criminal Code of Canada. (For a more detailed discussion, please see the full original text of this paper.)

Canadian Research Related to Diversity and Health

How we understand the effects of language, culture, class, racism and poverty, both on utilization of health services, and on health status itself, is largely shaped by our assumptions as a society. These assumptions also determine what data is considered important to be collected, and what research areas are prioritized. This research, in turn, contributes to our beliefs about culture, ethnicity, class and poverty.

There are significant differences in research focus between the United States, the United Kingdom, and Canada. In the U.S., there has been an emphasis on the variables of race or ethnicity on health status and patterns of use, even though there have been varied understandings of what these variables represent (Krieger & Fee, 1994b; Goodman, 2000). In the U.K., there has been a greater emphasis on the importance of social class, which has shaped data collection and research differently (Krieger & Fee, 1994a).

In Canada, as a result of our unique history and culture, we have been most concerned about inequities in health and health access that are related to income, and to a lesser extent, to region (whether urban/rural or by province/territory). Research in Canada has focused on different patterns of utilization by "income status" rather than on differences related to language, culture or ethnicity. This is because Medicare in Canada was designed to address financial barriers to access. Data collection in Canada reflects these priorities. Canadian data on health status and service utilization does not usually designate ethnicity d (Robinson, 1998; Sheth et al., 1997). Research in Canada has focused instead on strategies for assessing accessibility of services by income status. This emphasis is not accidental, but flows from our beliefs about ourselves as a nation, and our understanding of what affects health.

Canada has deliberately defined itself as a multicultural country, and has recognized and promoted awareness of differences between cultures. There has been promotion of Canada as a cultural "mosaic", often without a critical analysis of sources of inequity. This has resulted in a body of research that focuses on beliefs and practices of specific ethnic groups, and almost never on "race". As in many countries, there has been confusion about the meaning of "race" in research. There has been a gradual evolution from defining race as a biological category, to understanding its importance as a social construct (Krieger & Fee, 1994a; Goodman, 2000), and increasing interest in researching the health effects of discrimination (Krieger, 1999, 2000).

Research has also been influenced by the approaches to cultural competence adopted by both the health system and the larger society. Where there is sometimes an emphasis on structural changes aimed at ensuring culturally competent care (e.g. bicultural providers, provision of interpreter services or development of culturally specific resources), other approaches have focused on providing "cultural sensitivity" training to providers. This approach often emphasizes culture-specific learning on the part of providers (often leading to stereotyping by ethnic group and ignoring socioeconomic, gender and other issues), rather than learning of skills that facilitate cross-cultural communication (Stevens, 1993b; Carrillo et al., 1999; Hamilton, 1996).

One unintended result of this research emphasis has been a tendency to attribute differences in health behaviours to underlying traditional beliefs held by various ethnic groups, while tending to ignore both the characteristics of "health culture" that may create structural barriers to equitable care, and the significant diversity found within a particular ethnocultural group.

"The use of culture as a way of accounting for whatever is seen as emotional, irrational, or illogical in the behaviour of the patient is commonplace in the literature on multiculturalism and health. The problem is that the focus becomes the patient and his or her cultural identity. Attention is diverted from other actors and other factors, and references to culture become simply another way of blaming the victim" (Kaufert, 1990).

Summary

The international research on both the effects of language barriers, and strategies for addressing these barriers, cannot necessarily be generalized to the Canadian context. Any assessment of its applicability must acknowledge the historical, political and cultural context within which services are delivered and research is conducted.

Services for various constituencies that require language access services in Canada are uncoordinated and operated by a variety of community groups and institutions. Rights to language access also differ between these constituencies. The absence of legislation specifically requiring that health interpreters be provided in the health care setting has contributed to the failure of the health care system to take responsibility for provision of such services.

Some guarantees for access to health care in Canadian legislation, and more global rights provisions in the Canadian Charter of Rights and Freedoms, suggest that the rights to language access for speakers of non-official languages could be challenged. However, there are few provisions for enforcement of language access. In the United States, the federal government monitors and enforces rights of individuals to access public institutions without discrimination on the basis of language (Perkins & Vera, 1998). In Canada however, federal support for enforcement has been limited. Despite legislation such as the Canada Health Act, there appears to be significant inter-provincial and territorial variation in access services for individuals who face communication barriers. The lack of enforcement capability may be one reason why there have been so few challenges brought forward. It may also be because the cultural context of language services in Canada may discourage rights challenges.

Until recently, lower courts in Canada have traditionally applied a cautious approach to guaranteeing minority language rights. However, the judgment in the Eldridge case provided a thoughtful analysis of access issues that have the potential for broader interpretation than the rights of deaf patients to communication with their health care providers. As the research discussed later in this report demonstrates, there is evidence that absence of language access services is also resulting in substandard health care to speakers of other minority languages.

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Overview of Research Design Issues

Research questions related to language access may suggest either qualitative or quantitative methodology. Qualitative methods, such as interviews or focus groups, are used to address questions such as, "What types of problems do language barriers create?" or "How are these experienced by patients or providers?" They are often recommended where little is known about a subject. Quantitative methods are appropriate to testing theories or determining the prevalence of a topic of concern. They require a good understanding of the issues and are used to answer such questions as, "How many patients face language barriers?" or "How do those who face language barriers differ in use of specific services compared to those who don't?" These two methodologies are not mutually exclusive, and in most cases multi-method designs are recommended to describe problems and build and test theories.

Earlier descriptive research, such as case study-based research, graphically illustrated the risks of using untrained interpreters, and the effects on patients. With greater awareness, there has been more attention paid to measuring the effects, and other research designs have attained prominence. Administrative data is being used to compare utilization and health outcomes. Large population surveys are being analyzed to identify differences in health utilization or health status based on ethnicity or language ability. Most important has been the increase in the number of studies specifically designed to compare language groups on some outcomes (ranging from service utilization to differences in physician practice patterns), while controlling for a number of potentially confounding variables. Multivariate analysis has allowed for the exploration of the effect of language barriers while controlling for a number of other variables (e.g. age, severity of illness, insurance status, ethnicity, income, education) that may also affect the outcomes measured. This has enabled researchers to "disentangle" the multiple effects of ethnicity, language and economic status.

There are a number of research design principles that apply to any health research area. While it is beyond the scope of this review to provide a thorough overview of research principles, a number of points with particular applicability to research on topics of language access should be highlighted.

Before initiating a research project, it is essential to undertake a review of the literature in related areas. This can not only alert the researcher to important findings which guide further research (and avoid duplicating work already completed), but it also provides important direction as to what type of research is best suited to the topic of study. It is necessary to be able to precisely frame the research questions and select an appropriate methodology. If quantitative methods are utilized, the outcome measures and any interventions must be defined, and valid and reliable measurements developed.

Any variables that may affect results must be clearly identified and controlled for. Within the area of language access and health care there are many potential intervening or confounding variables. These may include client demographic factors (socioeconomic status, gender, education or ethnicity), type or severity of disease, the client's regular source of care, and the practice style and experience of the provider. There is also often an assumption that the provision of language access service is the key or only intervention of interest, and this may lead to error. For example, studies indicate that simply being accompanied by another person can improve health outcomes (Kaufert et al., 1999). Another principle is that the subjects of research interventions must be similar, and that no bias should exist in who uses certain services and who does not. Selection bias (of institutions, providers, interpreters and patients) can easily occur and may affect results.

Research related to language access is governed by the same ethical principles as other forms of health research. All health researchers working with human subjects are required to abide by the guidelines of the Tri-Council Policy Statement (Medical Research Council of Canada, 1998), and obtain approval from specific ethics committees in the institutions with which they are affiliated. In addition, there is an increasing expectation that community consent for research will be obtained where feasible. This is an important requirement of working in First Nations and Inuit communities (Kaufert and Kaufert, 1998). It may be more difficult to obtain such consent in ethnocultural communities that have multiple subgroups and no elected community representatives (Bowen, 1999).

For a detailed overview of general categories of research design, including descriptive research, survey methods, secondary analysis of data, experimental methods, and economic evaluation, please see the full original text of this paper. The text contains descriptions of the methodology, examples of studies utilizing this methodology, and discusses the potential of each methodology for further language access research. It also outlines many of the challenges faced by researchers in assessing the effects of language barriers, and provides an overview of the variables that should be considered. This includes a discussion of the issues involved in defining and measuring language barriers.

It has been noted that research related to language access is still in the early stages of development (Puebla Fortier & Shaw-Taylor, 1999). There are many challenges in design and evaluation of research on issues related to language access to health care. Many of these challenges are related to the number, complexity and interaction of variables that must be considered in research design.

In Canada, the absence of both a coordinated system of health interpretation, and of any requirements that non-official language speakers be provided with professional interpreters, have likely contributed to the paucity of research. There are few researchers with experience in the area, and the isolation of language access issues from mainstream health research has resulted in little attention being paid to the issue. There are also particular methodological issues that present challenges to the use of certain research methods. Several methodologies show good potential for furthering research in this area. However, there are a number of limitations to use of these methods, related to the presence of language and cultural barrirs and to the availability of data, that must be addressed.

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Models of Intepretation Services

Health interpreters have only recently been recognized as professionals who have a critical role in the delivery of health care to patients who do not speak an official language (Jackson, 1998). With greater awareness of the risks of language barriers and inaccurate interpretation, there is increasing demand from providers and advocates for research related to models of interpretation services. As awareness of the need for skilled interpretation grows, so does the understanding that it is necessary to distinguish between various "types" of interpreters, and to identify problems that may arise through the use of interpreters. Research questions in this category include those related to: definition of the interpreter's role; models of service provision; effects of interpreters on communication; and standards of service provision (training, accreditation and evaluation).

The Interpreter's Role

What it means to be a "health care interpreter" (even when the discussion is limited to the role of "professional interpreters") is ill-defined. While the principal responsibility of an interpreter is to bridge the language barrier between individuals speaking different languages in order that they may communicate freely with each other (Downing, 1995), there is no consensus on the best way to achieve this. An interpreter may be viewed as a bilingual community worker, where interpretation is only one part of a larger role including advocacy or cultural mediation. At the other extreme are those who view health interpreters in the same category as court or conference interpreters where they are expected to limit their role to accurate transmission of messages. This debate highlights the complexity of both the interpreter's role, and the challenge of "measuring" the input of interpreters in the provision of health services.

One result of the lack of consensus is often conflicting expectations of the interpreter's role (Kaufert & Koolage, 1984). However, little research has focused on the effect of interpretation on interpreters themselves, and their perspectives are often not included in planning or research. It appears that the view of interpreters as neutral "language processors" has often made their experiences invisible. Interpreters often report their role to be stressful, frustrating and unsupported. (Esperon-Rayson et al., 1991; Loutan et al., 1999). In addition, interpreters often deal with painful and conflictive communication, which may (particularly in the case of trauma or abuse) affect them personally. This is a very real issue for interpreters from refugee communities, many of whom have had experiences similar to those of the patients for whom they are interpreting (Tribe, 1999; Loutan et al., 1999; Bowen, 1999). In other cases, interpreters are called on to provide emotional support, not only to clients, but also to providers. They may also feel personally responsible for failures in diagnosis and care (Stevens, 1993b).

It is essential for those planning and administering interpretation programs to have an understanding of the complexity of the task of interpretation, the roles expected by providers, clients and interpreters, and the way that assumptions within the "culture" of health care may prevent equity of care. It has been noted that often interpreters are called on for assistance - even when the patient speaks an official language - in order to help mediate the cultural expectations of both client and provider, and provide support to the patient (Hemlin & Mesa, 1996; Kaufert et al., 1998).

In spite of the lack of consensus on what the interpreter's role should be, it is generally accepted that effective interpretation must involve more than just interpreting "words". Interpretation must also be able to interpret meanings, and clarify misunderstandings that may arise due to differences between the cultures of the two participants in the health exchange (Dias & O'Neill, 1998). This recognizes that the culture of the patient includes more than his ethnicity. Individual values, beliefs, and previous experiences may or may not be similar to others in the client's ethnic community. There is also a need to explain and "translate" the culture of the medical system the technical (and often exclusionary) language, the assumptions and practices, and the rights and expectations of patients (Jackson, 1998).

Models of Service Provision

Common approaches to providing interpreter services across Canada were listed in Section 2. Many rely on use of family and friends or ad-hoc untrained interpreters. In this section, we will focus on models of provision of trained or professional interpreter service. Much of the research related to the effects of language barriers and provision of interpreters has identified the risks of using family members or untrained interpreters. There has, however, been little research on the effectiveness of various models of professional service provision. The full text of this report outlines several models of professional interpreter services and the strengths and limitations of each.

Effects of Interpreters on Communication and Utilization

A number of studies have identified differences in utilization, satisfaction and compliance between patients with and without official language fluency. Fewer have attempted to directly compare patients for whom professional interpreters were available with those who did not have such access.

Few studies have compared different models of interpretation services. Kuo and Fagan (1999) implemented a survey of Spanish-speaking patients and medical residents about their experience and satisfaction with various methods of language interpretation (friend or family member, professional hospital interpreter, hospital employee who is not an interpreter, telephone interpreter, and physician who is proficient in the patient's first language). Levels of satisfaction with each method differed significantly between the two groups. While residents and patients had the highest level of satisfaction with professional interpreters, patients were more satisfied with using family members and friends, and less satisfied with telephone interpretation than were residents. The two groups also differed in the characteristics they felt to be important in an interpreter. Residents felt that availability and understanding of customs and beliefs were important, whereas patients felt that personal familiarity, gender concordance, and ability of the interpreter to assist them after the visit were more important (Stevens 1993b).

A Canadian study of clients, health professionals and interpreters working with the Inter-regional Interpreters Bank in Montreal, surveyed 288 health care workers regarding their expectations of interpreters and satisfaction with the interpreters of the bank compared to volunteer interpreters (Mesa, 1997). Health care providers and clients expressed significant differences in satisfaction with professional vs. volunteer interpreters, preferring professional interpreters on measures of both interpreting skill and professionalism (e.g. maintaining confidentiality). This study found significantly larger differences in satisfaction with volunteer and professional interpreters than the study by Kuo and Fagan (1999) described above. However, a low response rate from participants and awareness that the study was an evaluation of satisfaction with a specific program may have introduced selection and response bias.

Interpreter Training

In Canada, training and accreditation for Sign Language interpretation has been more advanced than for other minority languages (Bird & McDonald, 1998). Processes for certifying translators, court interpreters and conference interpreters have also been more developed than for what is termed "community interpreting". There are a number of interpreter training programs in Canada; however, they vary from one-time pilot programs (Stevens, 1993) to established certificate and diploma courses. A 1997 survey identified seven interpreter training programs in Canada that prepare interpreters for health care settings (Roat and Okahara, 1998). All but one of the programs embedded health interpreter training into programs for general community interpreting. Almost all programs in Canada simultaneously train interpreters from a number of different languages. Exceptions to this are training programs for Inuktitut speakers in Nunavut and Nunavik. Both the Nunavut Arctic College (Penney & Sammons, 1995) and the Adult Education Department of the Kativik School Board (KSB) provide interpreter training programs for Inuit interpreters. The KSB program provides basic modules in the areas of Education, Social Services, Law and Medicine, and includes supplementary modules on a number of topics such as mental health (Raymond, 2001).

Training has been developed at regional and provincial levels, with significant differences found between provinces (Steyn, 1994). Ontario has adopted a model of "cultural interpretation", and some provinces have undertaken activities to develop provincial standards and services (Affiliation of Multicultural Societies and Services Association of British Columbia, 2000). In other provinces there has been little attention to the development of standards, and health interpretation programs may only be available through specific agencies (Stevens, 1993b). Although training programs have been developed in many provinces and territories, there has been relatively little coordination and information sharing between programs (Dubienski, 1998).

At a recent national symposium on language access to health care, the "Catch 22" of interpreter training and employment was identified (Rochefort, 2000). The absence of standards and policies requiring professional interpreters results in low demand (although not low need) for trained interpreters. Many interpreter training programs therefore do not have enough students to offer the courses regularly, as students are unlikely to pay for courses when employment is uncertain. A review of the Montreal Inter-regional Interpreters Bank found that the yearly salary of interpreters averaged $1,587 (Mesa, 1997). A lack of trained interpreters contributes to a situation where there is continuing reliance on untrained interpretation. Participants recommended the development of a coordinated, national response to promote implementation of policies regarding health interpreter use, training and standards.

One initiative that has formed the basis for current work in setting and evaluating professional standards of practice for health interpreters, is the DACUM analysis. It was first commissioned by the Massachusetts Medical Interpreters Association (MMIA) and conducted by Dr. Maria Paz Avery for Educational Development Center Inc. (MMIA, 1996). The DACUM (Developing a Curriculum) is a method of occupational analysis for professional and technical professions.This process is also used in Canada for defining needed competencies for interpreters.

The DACUM has proved to be a useful development tool for a number of health roles, and the development of standards shows great promise in clarifying one of the variables of interpretation research (i.e., controlling for the variable of interpreter competence).

An additional challenge related to standard setting is the need for policy development and training for providers in working with interpreters. Even with skilled interpretation, optimum quality of communication cannot be achieved without provider awareness of the need for, and competence to work effectively with, interpreters. Providers from a number of health professions have recognized this and developed specific guidelines for working with interpreters (Phelan & Parkman 1995; Smart & Smart, 1995; Massachusetts General Hospital Interpreters Office, 1998; Poss & Beaman, 2000).

Accreditation and Evaluation

Closely related to issues of training are those of accreditation. Accreditation generally involves a test of skill that is external to any course taken, and as such is a mechanism for ensuring equivalent standards across a variety of training programs. It is important that accreditation be coordinated at the national level, and that the process incorporate both the complexity and the scope of the interpreter's role. Evaluation refers to the ongoing assessment of skill and performance and is the responsibility of the employing agency. Little research has been done in this area.

Research Priorities

Many jurisdictions are requesting assistance in determining the most effective model of service provision. Research is needed in two areas. One relates to comparative evaluation of various forms of interpretation through assessment of patient and provider satisfaction, and by content analysis of interpretation accuracy. The second need is for economic evaluation of models for a particular setting. Institutions, cities and regions vary dramatically in the number of health encounters requiring interpretation services, and the number of languages in which these services are needed. A practical challenge then, is to design models that are both acceptable and cost-effective for a variety of situations. Developing appropriate models is a particular challenge in a country such as Canada, where there is a relatively small population spread over a large area. While the majority of non-official language speakers live in a few large Canadian cities, most smaller cities and towns also have smaller populations who face language barriers. In northern areas providers may be "minority language speakers", and the patient and most members of the community may communicate mainly in an Aboriginal language.

The potential of tele-medicine in addressing language access to health services has not been well explored. This technology, now used in Canada to address distance barriers, appears to be particularly useful where diagnosis is dependent on culture and language, such as in the practice of psychiatry. Video conferencing has received high levels of acceptance from patients in a variety of settings. It may also be useful in certain well-defined situations, where a provider of the same background may be available in another city. This response however, does not rely on interpreters, as it is a strategy that increases the number of language-congruent encounters.

An area that shows promise and requires more research is that of creating roles for bilingual community health workers, who provide health interpretation as one of their functions (Stevens 1993, Jackson 1998).

Summary

As the following sections will illustrate, there is sufficient evidence on the negative effects of language barriers on health care access and quality of care, that attention should be directed to the practical issues of developing standards of practice and appropriate models of service delivery for the Canadian environment.

While there is continuing debate about how the interpreter role should be defined, there is sufficient consensus on core competencies that these should form the basis for training programs. Although there are many models of interpretation services provision in Canada, both availability and quality of services vary widely. Some initiatives have been developed to address standards of practice, however there is a need for these to be expanded and coordinated at the national level. Training must prepare interpreters to perform a variety of roles and must also be required for providers who work with interpreters. Research is also needed to determine the most appropriate models of interpretation services for the distribution of the Canadian population.

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Effects of Language Barriers on Patient Access and Care

Introduction

This section reviews current research on the impact of language barriers and language access programs, including: Estimating the need for language access programs; effects of language barriers on initial service access; effects of language barriers on quality of care; and effects of language barriers on health and utilization.

It is important to note that many of the studies discussed in the following sections have been conducted in other countries. Caution is therefore needed in generalizing study results to the Canadian context. Many studies on language access have been conducted in the United States, spurred in part by the interest of managed care organizations in addressing cost-effectiveness issues. Unlike Canada, the United States does not have universal health care insurance. Therefore, any investigation of access will be affected by the fact that many respondents face financial barriers to health care.

In addition, many studies on language access in the United States have focused on the Hispanic population, which is the largest minority language group in that country. This is a highly diverse population, comprised of both native-born Americans, and immigrants from a number of different countries (including significant numbers of "undocumented" immigrants who face additional barriers to access). Much of the published research has focused on immigrant languages. There has been less attention in North America to speakers of Aboriginal languages, or the Deaf community. This report reflects that emphasis. As acknowledged by the study authors, many of the studies have limitations including sample size, possible biases in selection of participants, or failure to collect data on, and control for, potentially confounding variables (e.g. education or socio-economic status). There is also significant variation in how the presence of a language barrier is defined and measured. The presence and/or skill of the interpreter is often not noted. However, there are a number of well-designed studies that provide consistent results.

Estimating the Need for Language Access Programs

The first step in developing appropriate models for addressing language barriers is to obtain an accurate assessment of need. This involves both
a) estimating the numbers of individuals who require interpretation for health services, and
b) estimating the proportion of those who require health interpretation services who actually receive them.

Need for Interpretation Services

It is estimated that 17% of Canadians have a mother tongue other than English or French. Approximately 10% of the population speaks a "non-official" language at home. On arrival in Canada 42% of immigrants speak neither French nor English (Marmen and Corbell, 1999). This proportion is higher for many refugee populations. One quarter of Aboriginal peoples report a mother tongue other than English or French (Statistics Canada, 1998). This increases to 90% in Nunavut, where 26% of Inuit are monolingual (Penney, 1994). According to the Canadian Association of the Deaf, there are 300,000 Deaf persons who rely on ASL for communication, out of a total of 1.2 million who are deaf or hard of hearing (Wood, 2001). French-speaking individuals living outside Quebec (approximately 3% of the Canadian population living outside of Quebec report French as the language used at home) and English speakers living in Quebec (10.5% of the Quebec population) may also face similar barriers (Bird and McDonald, 1998). There has been an increase in the number of residents who speak neither official language. The shift in source countries of immigration to Asia, Africa and Latin America contributes to greater linguistic diversity.

While we know that the number of Canadians who require an interpreter for health care is at least one in 50, the proportion of Canadian residents who speak neither of the two official languages (Marmen and Corbell, 1999), the upper limit is much harder to determine. It may be as high as one in ten the same proportion as Canadians who speak a non-official language at home. The percentage will differ significantly between cities and regions, and will be higher in cities where there are large numbers of immigrants, or in northern areas where Aboriginal peoples comprise a large percentage of the population.

The number of persons requiring language access services will also depend on the specific area of health services. For example, in a region where most Aboriginal young people speak English or French as their first language, access to maternal/child health services may not be hindered by language barriers, although there may still be significant cultural and systemic barriers to equitable care.

Current Research Approaches

There appears to be little research that has determined overall need for language access services. While many studies have been at the institutional level, these are often informal estimates and may not be published. Often, a survey of either providers or patients is utilized (McEntee, 1993; Andrea & Renner, 1995; Cross-Cultural Health Care Program, 1996; Drennan, 1996; Leman, 1997; Rader, 1998; Bischoff et al., 1999). Many institutional assessments are only disseminated internally or in the local area.

In Canada, perhaps the most common methods of estimating need at the community level are by needs assessments, focus groups, or consultations with community representatives. Such consultations consistently emphasize that immigrant and refugee communities, Deaf persons, and many Aboriginal peoples (particularly First Nations) consider interpretation for health encounters a priority (Stevens, 1993b; Stephenson, 1995; Canadian Nurses Association, 1995; Calgary Multicultural Health Care Initiative, 2000). However, it is important to note, particularly in the case of immigrant communities, that the proportion of the population that requires services can differ widely both between specific ethnocultural communities and over time. While there has been a steady need for interpreters for immigrant communities, the actual languages in greatest demand are often linked to current immigration trends (Cross Cultural Health Care Project, 1995).

Proportion of Those Facing Language Barriers Who Receive Service

Estimating the need for an interpreter is based on the experience of one or more of the participants in a health interaction. Estimating the proportion of those patients who require language access services who actually receive them is further complicated by the difficulty of defining what is meant by "interpreter". Only a few studies estimating need have attempted to differentiate between types of interpreters. Often, any form of interpreter is considered equivalent whether this is a family member, community volunteer, non-medical hospital staff person, or professional interpreter. Although some researchers note the kind of interpretation provided, others do not, and the type of interpreter used may not be a variable in the analysis. It is often found that interpreters are not called even when they are needed (Baker et al. 1996, Stevens 1993b, Ebert & Heckerling 1995; Hornberger et al., 1997;) or that there is reliance on ad hoc interpretation. For example, in a 1996 study, Baker et al found that interpreters were used in 26% of cases, but in an additional 22% of cases they were not used even though the patient felt they were needed. When both the patient's English and the provider's Spanish were poor, interpreters were still not called in 34% of cases. As well, 87% of patients who did not have an interpreter felt that one should have been used. This study also noted the type of interpreter used: nurse, 28%; physician, 22%; other people in the emergency room, 16%; professional interpreter, 12%; family members, 12%; hospital clerks, 11%.

Implications for Canadian Health Services

There has been little formal assessment in Canada of the prevalence of language barriers in health care encounters. Attempts to develop estimates are usually based on extrapolations from general population estimates, or of estimates developed by a specific institution. Population-based estimates include reviews of immigration landing statistics, reports from English/French as a Second Language programs or the public school system, local surveys, or consultation with community respondents. Several institutions have undertaken local assessments, and others are in the process of developing strategies for estimating need. Tracking the language preference of current patients, or collating requests for interpreters are two of the methods used.

In Canada, because neither ethnicity nor language are routinely coded in administrative health data, it is not possible to undertake secondary analysis of this data to determine estimates. While census and household activity surveys collect data on language usage patterns, this data has not yet been used to develop preliminary estimates of unmet needs for health interpretation services. Immigration data may provide some useful information on the numbers of persons arriving in Canada by first language, and ability to speak English or French. However such figures prove less useful over time due to inter-provincial/territorial migration, uncertain rates of second language acquisition, and natural increases in the size of the community e. Figures on numbers and first languages of ESL students may also provide one perspective, but will understate the needs of those who have been in Canada for a longer time and those who, for a number of reasons, may not be attending language classes.

The focus of research in this area should be on assisting health care providers and communities to develop models of service for addressing language access. In addition to obtaining an accurate assessment of numbers of language-disparate encounters, it is also necessary to determine the types of interpreters used in the encounters; reasons why interpretation was not provided; quality control methods for staff interpreters; qualifications of interpreters; training provided; evaluation; presence of language policies; data collection; and service coordination methods (Cross Cultural Health Care Project, 1995).

Canadian-based research is essential. The research approaches developed in other settings, however, can provide guidance to Canadian initiatives in this area.

Effects of Language Barriers on Initial Service Access

Language 'barriers' have been associated with both higher and lower rates of service utilization. Analysis of utilization patterns associated with language fluency indicate that some of the observed differences may be due to differential effects of: a) language barriers to initial access, and b) communication barriers affecting diagnosis and treatment (Bowen, 2000). The first barriers prevent a person from presenting for assessment and care, while the second affect the quality of care obtained. The research indicates that there is a general pattern of lower use of many preventive and screening programs by those facing language barriers. Higher use has been reported for some emergency department services, and for additional tests ordered to compensate for inadequate communication.

It is important to note that utilization may be determined by either the patient or the provider. The patient most often initiates first contact with the health system. However, referral for specialist consultation, diagnostic testing, return visits or prescription of pharmaceuticals is determined by the provider. Even participation in preventive programs may be physician-initiated (rather than patient-initiated) through the course of a routine or other visit.

This section focuses on barriers to initial access to care.

Acculturation

Acculturation is a key concept related to research on utilization patterns. This is the process by which individuals entering a new society adopt more of its beliefs, values and practices and become similar to others in the host society. As individuals become acculturated to North American culture, for example, it is proposed that they are more likely to have health beliefs, practices and utilization patterns similar to those of the general population. In many studies, language has been assumed to be a measure of acculturation rather than the primary variable of interest; however, as the following research indicates, recent studies suggest that language proficiency itself may be the determining factor.

Access to Preventive Programs

Significant differences in utilization of preventive programs by official language proficiency have been found consistently in the research. This pattern is found for a range of conditions and is fairly consistent across countries. Most of the research has focused on screening programs such as mammography or cervical cancer screening, where good data is often available.

There are few North American studies that specifically examine the impact of language on utilization or preventive programs, but two other categories of research do provide useful perspectives: research that compares different ethnic groups where language emerges as a likely factor explaining differences, and research that compares different ethnic groups but does not measure or account for language fluency separate from "culture".

A number of studies focus on utilization of cancer screening programs (Fox & Stein, 1992; Naish et al., 1994; Solis et al., 1991; Marks et al., 1987) For example, Fox and Stein (1991) examined use of screening mammography by racial/ethnic groups in the United States, using a bilingual, random digit-dialed interview with more than 1,000 women. They found that the most important variable that predicted whether women of all racial groups had a mammogram was whether their doctors had discussed mammography with them. Hispanic women, compared to Black or white women, were less likely to have physicians who discussed screening with them.

Initial Access to Mental Health, Rehabilitation and Counselling Services

Access to mental health and counselling services is an area of particular concern relative to interpreter use. In addition to general barriers to first contact, there are additional concerns related to cultural differences in service provision, communicating concerns, beliefs about mental illness, and confidentiality. Even when patients have contact with the health care system, they may delay seeking care for mental health problems due to language barriers and underuse mental health services (Canadian Task Force on Mental Health Issues, 1988; Li et al., 1999; Mesa, 1997; Nyman, 1991; Trauer, 1995; Stuart et al., 1996; Roberts & Crockford, 1997). There are many barriers to domestic violence, sexual assault and addictions programs. Counselling program providers often make no accommodation for language access, instead referring clients to generic "helping" agencies such as immigrant settlement services. This results in a lower quality service for those who cannot communicate in an official language.

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Other Differences in Initial Utilization

Studies have found language barriers to be associated with lower frequency of general check ups (Hu & Covell, 1986); fewer physician visits (Derose & Baker, 2000), and lower likelihood of having a regular source of care (Weinick & Krauss, 2000). Patients also report language to be a significant barrier to seeking care (Davanzo, 1992; Chak et al., 1984).

While administrators and researchers focus much attention on urgent or emergent needs for care, what may be less evident are the initial barriers to access in many other areas, including barriers to health promotion and education, HIV/AIDS education and counselling, participation in First Aid or CPR courses, access to emergency services, out of hours service, pharmacy service, and access to a range of mental health, counselling and rehabilitation services.

Canadian Research: The Effects of Language Barriers on Initial Access

Canada appears to lag behind the U.S. in research specifically related to language access, and research often includes a loose definition of "language" combined with ethnic and other factors. Many of these studies suggest that language is one factor affecting differences in utilization. More often however, these differences are attributed to differences in cultural beliefs and/or to lower socioeconomic status.

Canada's universal system of health care provides a number of advantages for health research. Unlike studies undertaken in the U.S., there is no need to control for insurance status. Universal health coverage also results in centralization of claims data for all residents by province or territory, and there are initiatives to improve consistency in reporting between provinces.

Canadian research indicates that Aboriginal women and some groups of immigrant women are less likely to have had mammography or cervical cancer screening (Hislop et al., 1996; Matuk, 1996a; Gentleman & Lee, 1997; Grunfeld, 1997; Sent et al., 1998; Maxwell et al., 2001).

Woloshin et al. (1997) analyzed self-reported utilization data on breast examination, mammography and Pap screening from the 1990 Ontario Health Survey. Of the study respondents in one city, 10% were non-English (6% French-speaking and 4% speaking other languages). He found that French speakers were significantly less likely to receive breast examinations or mammography. Women whose first language was neither English nor French were less likely to undergo Pap screening. These results persisted even when adjusted for social and economic factors, contact with the health care system, and measures of culture. The authors noted that households where no English or French was spoken were excluded from the survey, resulting in an understatement of differences between official language and other language speakers.

It is recognized that in spite of universal entitlement, participation in prevention programs is linked to socioeconomic status. In addition, research has focused on cultural beliefs and practices that may function as barriers to participation and the concept of "acculturation".

Less research is available related to the effect of language barriers on access to health promotion and disease prevention information. Many of these initiatives occur outside the formal health system and are heavily dependent on language as they are "education" based. However, the research undertaken in this area provides evidence of significant barriers in the areas of health education.

A study of South Asian women regarding breast cancer detection practices (Choudrey et al., 1998), concluded that a lower percentage of the women surveyed practiced breast self examination than the general population. The authors noted that language and unfamiliarity with Western culture, rather than negative attitudes towards breast examination practices appear to act as barriers.

A study by Fitch et al., (1997) involved a survey of 513 older adults using the Cancer Knowledge Survey for Elders. The authors found that the proportion of non-English-language respondents with incorrect answers was higher than for English-language respondents on all items. The survey did not control for other demographic factors but it does provide information on ways in which language proficiency may, through affecting access to health information, result in delayed diagnosis of a serious disease.

A prospective longitudinal survey by Edwards (1994) explored the predictors of prenatal class attendance among immigrant women. Two variables were found to be significant predictors: self-rated English/French language ability and maternal age. Women who rated their official language ability as excellent or very good were more than seven times more likely to attend prenatal classes.

There have been other Canadian studies that suggest language may have a role in facilitating or impeding access to health services. However, many of these studies used smaller samples and have not measured or controlled for language directly (Majumdar et al., 1995; Roberts & Crawford, 1997; Matuk, 1996b).

Most compelling are the consistent reports from health care users themselves, based on community consultations and direct assessment. Language barriers are consistently raised as one, if not the most important, of the barriers to care both in Canada and other countries (Stevens, 1993; Stephenson, 1995).

Implications for Canadian Providers: Research on Barriers to Access

There is good evidence that Canadians who do not speak an official language face important barriers to initial access to health care. However, because of universal health coverage, it is unlikely that these barriers have a significant effect on access for those who are acutely ill or injured. Canada provides a unique environment for assessing the relative importance of financial compared to other barriers to access, and it cannot be assumed that language barriers will have the same effect on access as in countries without universal health insurance. It is important that future studies investigate the effects of official language proficiency, while also controlling for factors related to ethnicity, immigration status, socioeconomic status and education.

Strategies for facilitating access must also recognize that barriers to access are not limited to physician and hospital care. Greater attention should be given to the barriers to prevention programs, particularly health promotion programs, which are aimed at providing health information and avoiding future health problems.

The Effect of Language Barriers on Quality of Care

The research referred to in this section includes work related to a number of different dimensions: the case study literature; differences in treatment of clients due to language barriers; health outcomes; patient satisfaction; patient understanding and "compliance"; and standards of ethical care.

Few studies were identified that focused specifically on language barriers as the major factor affecting care. However, a greater number of studies suggest that language may be an important factor that results in different patterns of care experienced by various ethnic groups.

The Case Study Literature

Case studies are the most comprehensive source of information on the range of problems related to quality of care that may result from language barriers. While this literature will not be reviewed here, it should be noted that it is this body of research that first identified problems resulting from language barriers, and provided direction for future research. These reports not only illustrate, through concrete examples, the effects of language barriers on quality of care; but also present the context of service provision, and provide insight into the mechanisms through which care is impaired. Numerous examples of delayed diagnosis, misdiagnosis, inappropriate referral, failure to explain the patient's condition or recommended care, or failure to ensure confidentiality or obtain informed consent have been documented (Bowen & Kaufert, 2000a; Haffner, 1992; Holden & Serrano, 1992; Stevens, 1993b; Flores et al., 2000).

Differences in Treatment Due to Language Barriers

In the United States, increasing attention has been given to the question of inequities in health care provision and health status by ethnicity and race. A comprehensive review by Mayberry et al. (1999), supported by the Henry B. Kaiser Foundation, found that that there were significant differences in quality of care and health status between ethnic/racial groups, that could not be explained by income, education, lifestyle, insurance status or other factors. This leads to the conclusion that there are inequities based on ethnicity within the U.S. health system. These findings cannot be assumed to apply to Canada, as provision of a universal, publicly-funded health care system addresses many sources of inequities, and the cultural and political climate is distinct. Although differences between ethnic groups in health status and patient-initiated utilization have received research attention in Canada, historically there has been little research directed towards determining whether there are any differences in treatment based on ethnicity. However, as there has been almost no Canadian research in this area, it cannot be assumed that inequities based on ethnicity do not exist. The focus of equity in Canadian research has been on differences in health status and utilization according to socioeconomic indicators. However, one study found that members of ethnic groups in Quebec, while they showed similar rates of utilization of medical services, used more specialist and diagnostic services (Blais & Maiga, 1999). However, language was not controlled for in this study.

Less information is available on the specific effects of language barriers on treatment received. Research reviewed in the complete report suggests that language barriers may be associated with an increased probability of hospital admission (Lee et al., 1998); increased used of diagnostic testing (Hampers et al., 1999); less likelihood of a follow up appointment being given (Sarver & Baker, 2000); less likelihood of adequate pain control (Cleeland et al., 1997; Chan & Woodruff, 1999; Todd et al., 1993); and differences in prescribed medication (Brown et al., 1999; Gill et al., 1995). Particular risks are found in the areas of mental health, sexuality and reproductive health, addiction, family violence and rehabilitation/disability related services.

Specific Health Outcomes

Only a few studies have investigated differences in health outcomes related to language barriers. However, the literature suggests that there are many intermediate effects, such as delays in seeking care, misdiagnosis, inappropriate treatment, reduced comprehension and compliance, and malpractice injury that could affect health outcomes.

One of the most striking indications of the possible health outcomes of language barriers was described in a study by LeSon and Gershwin (1996) of young adults aged 20 to 34 with asthma. The purpose of the study was to determine the risk factors for intubation, intubation being a marker predicting death. Multivariate analysis was undertaken to determine the effects of variables such as socioeconomic status and other factors, while holding the effects of other variables constant. A number were found to be statistically significant: patients with language barriers (defined as an inability to speak English) were more than 17 times more likely to be intubated than patients with the same characteristics who were fluent in English. Other studies have explored the relationship of language barriers to reported drug complications (Ghandi et al., 2000); medical outcomes related to hypertension and diabetes (Perez-Stable et al., 1997); and patient reported outcomes (Flores et al., 1998).

Patient Satisfaction

Patient satisfaction is the most recognized and widely used measure of effectiveness of provider-patient communication (Kaplan et al., 1989). It is also an outcome of care, and has been suggested as highly correlated with quality of care. One would expect that individuals who do not share a common language with their providers would be less satisfied with their care: most research on the topic confirms that this is indeed the case.

A number of studies have examined different aspects of patient satisfaction with care. These studies indicate that patients who do not speak an official language are generally less satisfied with their care (Carrasquillo et al., 1999; Baker, Hayes & Fortier, 1998; Morales et al., 1999; David & Rhee, 1998; Hu & Covell, 1986).

Patient Understanding and Compliance

Patient "compliance" is another issue that emerges from the literature as affected by language access. One would anticipate that patients who had more difficulty understanding their physician would be less likely to follow treatment directions. This appears to be the case. This is not only due to the obvious difficulties in obtaining accurate information, but also because good communication can be a source of motivation, reassurance and support, as well as an opportunity to clarify expectations (Kaplan et al., 1989).

A review of the literature reveals consistent and significant differences in understanding and compliance when a language barrier is present. Patients are more likely to report that medications were not explained (David & Rhee, 1998), are less likely to recall diagnoses and discharge instructions (Crane, 1997; and less likely to report understanding their diagnoses and treatment (Baker et al, 1996). They are also less likely to adequately self monitor blood glucose if diabetic (Karter et al., 2000) or maintain adequate blood levels of medication used to control asthma (Manson, 1988).

Evidence is not consistent on the effects of language barriers on appointment-keeping behaviour. Gruzd et al. (1986) conducted a multivariate analysis of 25 independent predictors of "no-show" appointment behaviour. They found that language was one of six variables significantly associated with appointment keeping, while race/ethnicity was not. This confirms Manson's findings (1988). In a smaller study, Enguidanos and Rosen (1997) found no significant association between language and appointment keeping. However the small sample size, and lack of control for the type of patient condition and severity of symptoms may have affected results. Sarver & Baker (2000) also found that while there were differences in the number of follow-up appointments given by physicians based on language proficiency, there were no differences in compliance.

Ethical Standards of Care

There is also compelling evidence that quality of care for those who are not fluent in an official language is affected through failure of health care providers to meet ethical standards. Three ways that ethical care is compromised are through a) failure to provide care to the same standard as received by other patients, b) failure to protect patients' confidentiality, and c) failure to adequately ensure patients' informed consent to treatment.

Government reports have indicated that patients who do not speak an official language do not receive the same standard of care in Canada (Tang, 1999). While the most dramatic examples are those where misdiagnosis has resulted in injury or death, the research indicates that in spite of the best intentions of providers, patients who do not speak an official language are likely, on a day to day basis, to receive less protection in terms of ethical standards.

Obtaining informed consent is a critical standard in the delivery of ethical care, but open and frequent communication is essential for this to occur. When patient and provider do not share the same language, informed consent cannot be obtained. In addition, use of untrained interpreters risks patient confidentiality, another essential component of quality care. This is a particular concern in sensitive areas such as mental or reproductive health. Use of family members as interpreters also risks disrupting family relationships, or exposing children to psychological risk. (Haffner, 1992; Jacobs et al., 1995; Stevens, 1993b).

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How Language Barriers Affect Health and Utilization

The research described above has identified differences in treatment, outcomes, satisfaction and "compliance" between patients who face linguistic barriers to care, and those who do not. But how exactly do language barriers result in these effects?

Analysis of Provider-Interpreter-Patient Interactions

One approach to investigating how the effects described above are accomplished involves presentation of narrative text showing the actual process of interpretation (Marcos, 1979; Ebden et al, 1988; Flores et al., 1999; Downing, 1992).

Marcos (1979) undertook a study of Chinese- and Spanish-speaking psychiatric patients and their providers. He attempted to identify the patterns of distortions associated with the interpreter-interviewer procedure with three different types of interpreters: psychiatric nurses with experience in clinical psychiatry; nurse's aides; and patient's relatives. While the author states that all were fluently bilingual, other qualifications were not identified. Content analysis of audio taped interviews were conducted by an English-speaking psychiatrist with the help of an interpreter. Marcos found three major types of distortions: a) distortions associated with the interpreter's language competence and translation skills, b) distortions associated with the interpreter's lack of psychiatric knowledge, and c) distortions associated with the interpreter's attitudes. He provided specific examples of each of the three types. An example of the type of distortion that can arise in the interpretation process is illustrated through the interpreter's transmission of a patient's response to the question about whether there was anything that bothered him:

Patient: "I know ... I know that God is with me. I'm not afraid, they cannot get me. [pause]. I'm wearing these new pants and I feel protected, I feel good, I don't get headaches anymore."

Interpreter: "He says that he is not afraid, he feels good, he doesn't have headaches any more." (p. 173)

The study concluded that clinicians evaluating non-English patients through an interpreter are confronted with consistent, clinically relevant, interpreter-related distortions that may give rise to important misconceptions about the patient's mental status.

Downing, a professor and researcher in linguistics at the University of Minnesota, in his analysis of interpreted health encounters (1992) also demonstrated the risks in using untrained/volunteer interpreters. In one example, an encounter between a nurse practitioner, a patient, and the patient's son acting as an interpreter identified several kinds of miscommunication. In a conversation of only 25 exchanges, the following were identified:

  • the interpreter failed to understand the provider's question and did not seek clarification (4 times);
  • the interpreter interfered with the flow of the interview by asking for a paraphrase or explanation of particular words (4 times);
  • the interpreter misinterpreted because of lack of understanding of particular words and idioms (5 times);
  • the interpreter responded to a question himself without any attempt to interpret the question or his English response to the patient (6 times);
  • the interpreter volunteered his own opinions or information regarding the patient (5 times);
  • the interpreter's failure to interpret the question led the patient to try to guess what the question was and attempt an answer (4 times);
  • the interpreter failed to interpret an answer offered by the patient (6 times);
  • the interpreter seriously distorted the message in the process of interpreting it by adding information (2 times), omitting information (4 times), or changing the meaning (7 times);
  • the reply that the practitioner received from the patient was the answer to a different question than the one she asked, but did not know it (2 times) .

These analyses demonstrate both the frequency of errors and the types of errors made in the interpretation process. They highlight the risks of using untrained, ad hoc interpreters or family members, and alert providers to the potential effects of mis-translation. Analyses can also identify differences in communication where no interpreter is available.

Making the Links: Research on Patient-Provider Communication

A broader perspective on the potential impact of language barriers on health outcomes can be obtained by reviewing the research related to patient-provider communication. It is generally accepted that the provider-patient relationship is built through the effective use of language. Communication is central to the practice of medicine (Woloshin, 1995). Reviews of the literature (Kaplan et al., 1989; Stewart, 1995; Stewart et al., 1999, 2000) indicate that there is a relationship between the quality of patient-provider communication and the patient's health outcomes. In addition to the more obvious effects on satisfaction and adherence to treatment regimens, the quality of communication has been found to have a generally positive effect on actual patient health outcomes, such as pain, recovery from symptoms, anxiety, functional status, and physiologic measures of blood pressure and blood glucose levels. Kaplan et al. (1989) describe three basic communication processes associated with improved health outcomes: a) the amount of information exchanged, b) the patient's control of the dialogue, and c) rapport established. All of these processes are jeopardized in language discordant encounters (Betancourt et al., 1999). These processes can also be affected when an interpreter is used (Rivadeneyra et al, 2000).

However, while the research suggests the ways in which language barriers may affect health outcomes, satisfaction and compliance, patients who lack proficiency in an official language are often excluded from research related to provider-patient communication, and the specific effects of language barriers on the provider-patient relationship have not been well explored.

Making the Links: Research Related to Health Literacy

Another source of insight into the possible impacts of language on health outcomes is the literature on health literacy. Recent research has highlighted the correlation between literacy and health status and health outcomes (Sarginson, 1997; Perrin, 1998). Low literacy has been linked to lower health status, increased rates of hospitalization (Baker et al., 1997; Baker et al., 1998), and poor understanding of health conditions and diseases (Williams et al., 1998; 1998a). Patients with low health literacy are less likely to understand discharge instructions, and more frequently report medication errors due to inability to read prescription labels (Baker, 1999). Literacy is also a factor affecting ability to benefit from health promotion or disease prevention information (Sarginson, 1997). While low literacy is correlated with low education, low literacy is also found among well-educated persons who lack official language fluency.

Making the Links: Time Needed for Consultation

A recent time-motion study comparing physician time spent with non-English-speaking and English-speaking patients in an American hospital found that that there were no significant differences in the time physicians spent providing care to the two groups. However, a significant number of physicians believed that they spent more time during a visit with non-English- speaking patients (Tocher & Larson, 1999). Studies such as this suggest another way in which quality of care is affected; additional time is required for communication when an interpreter is utilized. If all patients are given equal time for appointments, those who cannot communicate directly with the health provider are therefore less likely to achieve same quality of care. Inadequate time for communication may also result in reliance on laboratory testing to replace verbal evaluation.

Making the Links: Provider Continuity and Regular Source of Care

An issue of growing concern in many countries, including Canada, relates to the effects on health of not having a regular source of care (such as a family physician). Lack of a regular physician is associated with both lower health status and differences in utilization patterns and has been associated with the prescence of language barriers (Weinick & Krauss, 2000). A recent Canadian study (Talbot et al., 2001) found that individuals who had been in Canada less than four years (a group most likely to experience language barriers) were twice as likely to have no regular doctor.

Ethnic Matching Between Client and Provider

It has been suggested that patients may have more confidence in care by providers from their own ethnic background (Health Canada, 1998; Saha
et al., 2000). A number of studies have identified higher levels of utilization and satisfaction where there has been ethnic matching between patient and provider (Flaskerud, 1986; 1990; Ahmad et al., 1989; 1991; Snowden et al., 1995; Silgrove et al., 1997; Jerrell, 1998). Language congruence has been proposed as one explanation for this.

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Summary

This section reviewed evidence of the impact of language barriers on quality of care from a number of perspectives:

  • the treatment clients receive after presenting for care;
  • the health of the client;
  • patient understanding and compliance;
  • patient satisfaction; and
  • ethical standards of care.

In Canada, although there has been significant research on differences in treatment based on socioeconomic status (Dunlop et al., 2000) there has been almost no research on differences in treatment by ethnicity or language proficiency. While research from other countries suggests that there may be inequities in treatment based on ethnicity (Todd et al., 1993; Cleeland et al., 1997; Mayberry et al., 1999), similar research has not been undertaken in Canada. It is also unclear to what extent language barriers may account for observed differences in treatment between ethnic groups.

There is some suggestion that in Canada, those who lack official language proficiency may be more likely to receive specialist referrals or diagnostic testing (Blais & Maiga, 1999). This is consistent with some research in other countries that indicates that in some situations providers may "compensate" for language barriers by relying more heavily on laboratory or specialist assessment (Tocher & Larson, 1998; Karter et al., 2000). There is however, strong evidence that in Canada, as in other countries, those facing language barriers receive different services and quality of treatment in the areas of mental health and counselling (Canadian Task Force on Mental Health Issues Affecting Immigrants and Refugees, 1988).

The question of whether treatment provided to patients is affected by language barriers requires significantly more research. In the absence of research focusing on questions of equitable treatment, it cannot be assumed that inequities do not exist. Until specific Canadian research is undertaken, findings of differences in treatment in other countries should be interpreted with caution. Research from one country often cannot be generalized to another because of differences in culture, history, and systems of health care provision.

There is also little direct evidence related to the effects of language barriers on health status. However, it is useful to make the links between the research on language barriers and the literature on provider-patient communication and health literacy; two closely related research areas. There is strong evidence from this body of research that poor provider-patient communication and lower literacy in the official language(s) is linked with poorer health outcomes. Effects on health outcomes due to differences in communication can be expected to be similar between countries.

There has been more research related to patient satisfaction. Language barriers are consistently associated with lower patient satisfaction with care. It is not clear to what extent findings from other countries related to patient satisfaction can be generalized to Canada, again because of differences between health systems. Many programs report that immigrants are often extremely positive about the heath care system in Canada, and express high levels of satisfaction. Differences in satisfaction appear most closely correlated with social class, with those from less privileged backgrounds expressing the highest satisfaction (Bowen, 1999).

At the same time, most studies of immigrants in Canada, like those done in other countries, find that one of, if not the greatest, barrier to access reported by newcomers is that of lack of interpreters or bilingual providers (Stevens, 1993b; Stephenson, 1995; Calgary Multicultural Health Care Initiative, 2000). Canadian research also indicates that there is much higher satisfaction with professional compared to volunteer interpreters. A survey by the Montreal Inter-regional Interpreters Bank of 68 clients found that 76% of clients preferred dealing with a professional interpreter when consulting medical personnel; 88% had more confidence in the accuracy of interpretation provided by professional interpreters, and 83% had more confidence in the discretion of a professional interpreter (Mesa, 1997). This indicates that even if many arrivals are appreciative of health services in general, their satisfaction with specific encounters may be low. Research on this topic, therefore, requires careful assessment of these two aspects of satisfaction.

Satisfaction with care by Aboriginal peoples is often low, however, there is greater evidence that there are differences in access and care related to geographical barriers, confusion over provincial/federal jurisdiction for Aboriginal health coverage, and distrust of health services based on historical and personal experience of discrimination (Canadian Nurses Association, 1995; Aboriginal Health and Wellness Centre, 1997; O'Neil et al., 1988; O'Neil et al., 1999). While language barriers are expected to increase dissatisfaction, the importance of language barriers in contributing to dissatisfaction is unclear.

The research indicates that language barriers have a negative effect on patients' understanding of their condition and the prescribed treatment, and therefore on patient "compliance". This is consistent with the general literature on provider-patient communication, that provides strong evidence that communication affects patient adherence (Stewart et al., 1999). There is no reason to suggest that findings related to compliance and communication would be significantly different in Canada than in other countries. It may, however, be expected that adherence to treatment may be higher in Canada on some measures, as universal coverage removes many financial barriers to adherence to prescribed treatment.

There is solid evidence from Canadian programs that patients who do not speak an official language do not receive the same standard of ethical care as other Canadians. Case studies from across the country, found in both the published and grey literature, emphasize the failure of Canadian health services to ensure informed consent, and protect the confidentiality and privacy of patients who face language barriers.

In addition to research on provider-patient communication and health literacy, three other research areas are related to that of language access. Research related to ethnic matching of provider and client; research on the importance of a regular provider; and research related to time allocated to the patient-provider interaction may also provide useful insights on the importance of language barriers to health.

It cannot be assumed that the barriers to quality of care experienced by Deaf, immigrant or Aboriginal patients is equivalent. Most studies identified for this review have focused on immigrant communities. Research is needed to explore whether the effects of language barriers experienced by one language constituency can be generalized to others.

Other Effects of Language Barriers

Language barriers, and the absence of programs to address them, have other indirect but important effects. These include:

  • Effects on health research and development of knowledge;
  • Effects on health care providers; and
  • Effects on costs of service provision.

It is recognized that both clinical and health services research tends to under-represent ethnic minorities, especially those who are not proficient in an official language (Hazuda, 1996; Ren & Amick, 1998; Larson, 1994). A study of original investigations on provider - patient communication found that only 22% of studies included non-English speaking persons, and that those who did so appeared to do so incidentally rather than systematically (Frayne et al, 1996).

Exclusion from research has both health and economic effects. The risk of certain diseases and conditions, and the response to specific drugs are only two of the areas where there may be ethnic/racial differences. Exclusion of certain ethnic groups from biomedical research may therefore mean that study results cannot be generalized to the entire population (Harrison, 1994; Cotton, 1990). Exclusion specific to language fluency may also prevent accurate assessment of the actual effectiveness of treatments (as opposed to efficacy) by not including the effects of language difficulties on treatment comprehension and compliance. In addition, members of language minority groups are prevented from benefiting from participation in cutting edge treatment for diseases such as cancer (Kaluzny et al., 1993; Roberson, 1994; Guilano et al., 2000).

Communication barriers also result in stress and lower job satisfaction for health care providers.

The presence of an interpreter poses difficulties in establishing the same quality of communication and rapport (Rivadeneyra et al., 2000). Working with an interpreter can be frustrating. Providers may have less confidence that the work they are doing with patients is helpful, and express discomfort in seeing patients when there is a language barrier (Kline et al., 1980; Hoyt et al., 1981). Using an interpreter takes more time than direct communication, and often this is not time for which fee for service providers (e.g. physicians) are reimbursed. Language barriers may present challenges to learning for medical students and residents (Chalabian and Dunnington, 1997) Providers may also experience stress in attempting to meet ethical standards in providing health care, including the Codes of Ethics for their professions. Linguistic barriers to accurate diagnosis and informed consent may place a provider at greater risk of liability (Schneiderman, 1995). General studies about patient satisfaction or dissatisfaction related to patient-doctor communication indicate that complaints about doctors are usually due to communication problems and not technical competency issues (Rozovsky & Rozovsky, 1982; Stewart et al., 1999).

There is preliminary evidence that language barriers may have important effects on health care costs, through their impact on service utilization and health outcomes. However, the potential cost savings of skilled interpretation have never been adequately addressed. The full report reviews a number of studies that have attempted to assess the costs of language barriers, and the limitations of the research undertaken to date.

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Conclusion and Recommendations

Effects of Language Barriers

There is compelling evidence that language barriers have an adverse effect on access to health services. Patients face significant barriers to health promotion/prevention programs. There is also evidence that they face significant barriers to first contact for care in a number of settings. Although limited research has been undertaken in Canada, research findings in this area are consistent with studies undertaken in other countries.

With the exception of access to mental health and counselling services, there is not at this point evidence that patients in Canada who face language barriers have reduced access to physician-initiated care. There is limited evidence that in some cases, Canadians who have lower official language proficiency may have higher utilization of specialist and diagnostic services. However, both initial access to, and quality of care provided for, psychosocial issues appears to be impaired by the presence of language barriers. More research is needed.

In many cases the rights to confidentiality and informed consent are not protected for patients who do not speak an official language, and they do not receive the same standards of ethical care as other patients. There is a paucity of research in Canada related to differences in treatment based on race/ethnicity. Based on the information currently available, there is some suggestion that in this country, for immigrants, language, rather than ethnicity, may be a more important factor in initial health care access, if not in health status. This is an area in which significant research is needed.

In addition to the direct effects on patient access and care, language barriers have a negative effect on provider effectiveness and satisfaction. Exclusion of non-official language speakers from clinical and health services research affects the generalizability of research findings and the development of knowledge.

There is evidence that providing language access services may result in benefits to a number of stakeholders:

  • patients/clients (improved diagnosis, avoidance of unnecessary interventions, better health outcomes and satisfaction);
  • providers (less frustration, less risk of malpractice);
  • administrators (decreased liability and increased efficiency);
  • health system (more appropriate use of services, and improved health outcomes); and,
  • society in general (increased health and productivity of all citizens).

In spite of the risks of language barriers to access and quality of care, and the potential benefits of language access services to patients and providers, little responsibility for ensuring language access has been assumed by the health care system. It has been observed that while providers may intuitively or explicitly realize the risks of language barriers to patients and providers, they may find it inconvenient to address the issue of language access without externally articulated requirements and obligations (U.S. Office of Minority Health, 1999). While accessibility is a fundamental principle of Canada's health care system, to date access has been defined most often as the absence of explicit financial barriers to care. With the exception of interpretation services for Deaf patients, there are no specific requirements that professional interpreters be used.

While the designation of health as a provincial/territorial responsibility makes the development of a national response more difficult, there is a need for the development of national standards, and coordination of research and training. Strategies to increase language access must also be coordinated with other initiatives aimed at addressing the inequities in access to health services.

Current Challenges
Promoting Cultural Competence and Social Responsiveness

Provision of professional health interpreters is essential if equitable access to care is to be ensured. However, it is not a sufficient response. Provision of interpreters does not remove the obligation of health services to promote a range of initiatives to increase language and cultural diversity within the health professions. Relying solely on interpreters to provide a communication bridge to services that may be culturally uninformed or unresponsive, will not provide true access (Stevens, 1993a; James, 1998; Doyle & Visano, 1987).

Continuing effort is needed to increase the social responsiveness of health services, and the cultural competence of providers (Cappon & Watson,
1999). Too often, differences in communication and culture are viewed as problems belonging to minority communities, which health interpreters can help "overcome". Difficulties in access then are attributed to characteristics of communities, rather than to systemic barriers within the health care system. The assumption that failure to participate in prevention activities arises from "cultural beliefs", rather than structural barriers, is one example of this. The lack of health system response to the needs of clients for language access is an indication that there is continuing need for systemic change. Without addressing the larger issues of inequity, provision of language services will not have the desired effect. However, unless language access is obtained, this larger agenda will be hindered.

Greater effort is needed to develop roles that provide cultural interpretation and advocacy, and to develop specific health initiatives that respond to community needs (Stevens, 1993b; Vissandjee et al. 1998b). To ensure appropriate utilization of interpreters within institutions, policy requiring the use of interpreters is needed, along with provision for monitoring and evaluation. Training of service providers in working with interpreters is an essential component of cultural competence training, and should be a part of all health curricula. Interpreters must be viewed as members of the health care team, not simply as "language decoders". The relative "invisibility" of interpreters' needs and perspectives in the interpretation research highlights the marginal role to which they have been assigned to date.

It is also clear that not all barriers to language access can be best addressed by the provision of health interpreters. In particular, health promotion initiatives can probably best be provided through bilingual providers whether in a professional or paraprofessional role. Greater attention also needs to given to the development of multilingual resources in a number of areas: health promotion, health service orientation, information on diseases and conditions, and patient care instructions. Development of a greater variety of quality plain language resources in English and French would also increase accessibility to health promotion and patient care information of many with limited official language fluency (Robinson & Miller, 1996; Gordon, 1996). This response would also improve communication for all clients.

Research Needs

Much of the research from other countries can be useful to Canadian policymakers and researchers. However, there are a number of areas where caution is needed in generalizing results. Different mechanisms may affect access to specialist or other more intensive care in a country with universal health coverage, compared to countries where there are significant disparities in insurance coverage. While a review of the U.S. literature related to ethnicity concludes that ethnic minorities receive less needed care (Mayberry et al., 1999), there is no evidence that these results can be generalized to Canada. Other factors related to the history, culture, organization of health services, and population density within a particular country may also affect results. While there is good evidence that the general findings on provider-patient communication, initial access to care, patient compliance and knowledge, and research participation may be similar between countries, additional Canadian-based research is required related to differences in treatment following assessment, and general satisfaction with the health care encounter.

An important limitation of much U.S. research is the focus on the Hispanic (Spanish-speaking) population. Sufficient research has not been undertaken on other, smaller language minority groups. Although there is no evidence that language barriers would be less for other language groups (and in many cases may be higher), the response to such barriers may differ between communities. Challenges related to validation of instruments for use with culturally diverse groups are of particular concern for research which attempts to measure patient satisfaction or self-reported health status and health needs.

It is also essential to build on Canadian research that has highlighted the role of socioeconomic status in health status and patterns of utilization. Research in other countries often finds that non-English speakers are poorer than official language speakers. Canadian data suggests the same persons with disabilities (including Deaf persons), new (though not established) immigrants, and Aboriginal peoples tend to be poorer than other Canadians. Recent research has emphasized the complex interaction between ethnicity, socioeconomic status and health. Socioeconomic status does not explain all differences in health between ethnic groups (Krieger, 1999; Mayberry et al., 1999). As indicated in this report, the research also suggests that official language proficiency is itself a determinant of health, and may interact with ethnicity and socioeconomic status. It is a variable that should be included in future research.

While in general immigrants do not identify any more unmet health needs than the general population, twice as many lower income immigrants report unmet health needs as compared to those with higher incomes (Chen, Ng & Wilkins, 1996). As lower income is linked to a decreased likelihood of fluency in one or more official language, more research is needed to determine whether language barriers to access, not simply income, might contribute to lower health status. Kinnon (1999) also notes that access is an area in which the distinction between recent and more settled immigrant populations is critical, and urged further research to explore the lack of access and need for appropriate services.

Models of Interpretation Services

While there are a number of interpretation programs operating in Canada, they vary in size, resources, model of service delivery and capacity to ensure quality. Additional research is needed to develop models appropriate for the distribution of Canada's population. Some of these models must be appropriate for regions with lower density, and high diversity, of non-official language speakers.

Strategies to increase language access to health services should not be limited to addressing access to physician and hospital appointments. Investment in the long-term health of the population must recognize that access to health promotion and preventive programs is also important, and that strategies must meet the needs of clients and providers who work in a variety of professions and settings. Strategies should also be developed around the needs of clients, not of institutions.

Research has identified negative effects of language barriers not only on physician and hospital care, but also on long-term care, speech and occupational therapy, counselling and rehabilitation, community health nursing, pharmacy services, emergency and ambulance services, participation in CPR classes, access to out-of-hours services, abuse prevention and intervention services, home care, and health promotion and prevention (e.g. childbirth preparation, cancer awareness and prevention, HIV/AIDS education and counselling), and support for caregivers of the elderly and disabled. Therefore, a comprehensive strategy for addressing language barriers must take into account barriers to a variety of services, and match the form of service to the need. This may, for example, result in telephone interpretation for emergency services, in-person interpretation for a pre-booked appointment, use of bilingual providers for health promotion, and increased development of multilingual and plain language patient information materials.

Development of National Standards

A crucial issue is the development of standards for institutions, providers, and interpreters. These should include standards for interpreter training and for providers working with interpreters; the requirement for policy outlining situations where professional interpreters must be used; and development and coordination of accreditation processes for interpreters and institutions. A coordinated response to developing models of interpretation services appropriate for the distribution of the Canadian population is also needed.

Economic Evaluation

There are two forces currently promoting provision of health interpretation services in Canada. The first is based on patient rights and a commitment to ensuring quality of care for all patients. There is evidence that failure to address language barriers has an adverse effect on the health and satisfaction of patients and their rights to equitable standards of care. This, some argue, is sufficient reason to provide language access services, and cost-benefit analysis should not be applied to issues of ethics and rights to care.

The second argument, that of cost-effectiveness, has been viewed in the past as a constraint to provision of language access programs. Programs, such as interpretation services, were understood simply to involve additional costs to the health care system, without significant economic benefits. As evidence related to costs and benefits has mounted however, there is a realization that provision of language access services may result in cost savings to both the health system and the larger society. The focus on reducing health care costs may therefore also serve as an impetus for developing strategies to address language barriers. In one U.S. hospital, a review of the effects of language barriers combined with requirements for cost reduction promoted creative restructuring which resulted in the reallocation of some existing positions to a new multilingual advocate model (Corso, 1997). In Canada too, there is increasing interest in undertaking cost-benefit analysis of language access programs.

Economic evaluation of health interpretation services raises two challenges. The first is that economic evaluation of heath care is in its infancy. The methodology has not yet been adequately developed to accurately assess the "costs" of various health interventions. The other relates to the complexity of the task of defining and measuring both the inputs, and the outputs, of various interventions, including defining the "interpretation function" itself.

While it usually appears feasible to measure costs (inputs) of programs, (or absence of programs), measuring the effects ("benefits" or "outputs") is much more complex. There are a variety of possible outcomes, and many interventions may have delayed effects. There is often insufficient awareness of the potential costs to the patient and family, to the society in general or even to the larger health care system (community-based, continuing care, or preventive services, for example) over the long term. In addition, the data available through current collection systems does not provide the necessary information to provide cost estimates. Collaboration between researchers and providers of language access services is required.

It is however necessary that economic evaluation of interpretation programs be undertaken as one component of a complete evaluation and planning process. Determining the effectiveness of the interventions, and analyzing ethical responsibilities are other necessary components of such an evaluation.

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Recommendations

Based on this review of the literature the following recommendations are proposed by the author:

  • Examine the feasibility of incorporating, as part of health system data collection, information on patient proficiency in official languages.
  • Include, wherever possible, proficiency in an official language as a variable for analysis in health services research. This should always occur when ethnicity is one of the factors to be considered.
  • Include in the review of health research proposals an assessment of whether those who are not fluent in an official language are eligible to participate, and promote inclusion of language minorities in both clinical and health services research.
  • Develop strategies to increase health researcher awareness of the effects of exclusion of language minorities from health research, and methodological and ethical issues related to conducting health research with participants who have limited official language fluency.
  • Develop initiatives to promote awareness of the importance of provider-patient communication, and the profession of interpretation within the health professions. Promote training on the effects of language barriers and working with interpreters as a required component of pre-service professional preparation.
  • Develop strategies to promote dissemination of research on language access to policymakers and health service planners.
  • Develop strategies to assist communities and institutions to develop models of service delivery appropriate for the variety of settings where interpretation is needed.
  • Develop a coordinated national research strategy to further understanding of the impact of language barriers on health service utilization and health status of Canadians.
  • Establish a centralized "clearinghouse" capacity for information and research on language barriers and language access programs in Canada.
  • Develop a national strategy for health interpreter training, interpreter accreditation and standards of service provision.
  • Develop national standards of practice and appropriate models of service for the Canadian environment.
  • Coordinate strategies for training and accreditation of interpreters.
  • Include and coordinate strategies for official language, Aboriginal, visual, and immigrant languages.
Summary

Language barriers have been demonstrated to have adverse effects on access to health care, quality of care, rights of patients, patient and provider satisfaction, and most importantly, on patient health outcomes. In spite of universal health coverage, patients who lack proficiency in English or French may not have access to the same quality of care as other Canadians. There is also evidence that language barriers contribute to inefficiencies within the health system

This document is intended to serve as the starting point for further dialogue among providers of language access programs, health administrators and policymakers, and researchers in Canada. It is hoped that it will promote further collaboration, program development and Canadian-based research related to language access to health care services.

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Glossary

Aboriginal:
All indigenous persons of Canada who are of North American Indian, Inuit, or Metis ancestry, including those in the Indian Register. First Nations refers to those whose names appear on Indian Register maintained by the Department of Indian Affairs and Northern Development. instantaneously after the original. This is the common form of conference interpreting. Consecutive interpretation involves interpretation of segments of a conversation, with a lag between the original message and its interpreted form. Interpretation may also be categorized as proximate, meaning the interpreter is present in the encounter, or remote (e.g. by using telecommunication technology). American Sign Language (ASL) interpretation is most often proximate and simultaneous, while most other health interpretation is consecutive and proximate, although the development of communications technology has increased the availability of remote, and simultaneous interpretation.
Institutionally Complete Communities:
Those cultural communities that can provide a wide range of social, educational, economic and cultural services through providers of the same cultural background. In institutionally complete communities, individuals can obtain all or most services needed in their first language.
Multivariate Analysis:
A set of techniques used when the effects of several variables are to be studied at the same time.
Back-translation:
A process by which original material is translated into a second language and subsequently translated back into the original language by a second translator. This method is used to monitor the accuracy of translation where the researcher cannot speak the two languages involved.
Deaf:
The word deaf, when the d is capitalized, as in Deaf, refers to those who belong to the cultural community of Deaf people. Many of these persons are pre-lingually deaf, and while they may learn to read and write English or French, learn these as second languages. In contrast, the words deaf, or deafened (with a lower case "d") refers to lack of hearing. Not all those who are deaf are members of the Deaf community or use sign language, the focus of our discussion here.
Immigrants:
"People who are, or have been at one time, landed immigrants to Canada" (Statistics Canada). A landed immigrant has been granted the right to live in Canada permanently by immigration authorities. Landed immigrants include both those who voluntarily immigrate to Canada, and refugees who are forced to flee their home countries.
Odds Ratio:
The ratio of two odds. Odds refers to the ratio of the probability of the occurrence of an event to that of the non-occurrence of the event.
Plain Language:
Language that is simple, clear, direct and uses common words. The intent of plain language is to make information accessible, especially to those who have low literacy skills, or low proficiency in a second language.
Self-rated Health:
How individuals describe their own physical and mental health.
Interpretation:
For the purpose of this report, interpretation refers to the process by which a spoken or signed message in one language is relayed, with the same meaning, in another language. Translation refers to the written conversion of one language into another. Two common forms of interpretation are simultaneous interpretation, and consecutive interpretation. In simultaneous interpretation the interpreted message is delivered nearly
Under service:
The increased likelihood that individuals will, because of their membership in a certain population, experience difficulties in obtaining needed care; receive less, or a lower standard of care; experience differences in treatment by health personnel; receive treatment that does not adequately recognize their needs; or be less satisfied with health care services.
Validity:
The degree to which conclusions reached in a study are warranted.
Visible Minorities:
Persons other than Aboriginal peoples who are non-Caucasian in race or non-white in color. (Employment Equity Act, Canada).
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References

  • Aboriginal Health and Wellness Centre (1997). Aboriginal Health and Wellness Centre: Operational Plan Winnipeg: Aboriginal Health and Wellness Centre of Winnipeg, Inc.
  • Ahmad, W. I., Kernohan, E. E., & Baker, M. R.(1989). Patients' choice of general practitioner: influence of patients' fluency in English and the ethnicity and sex of the doctor. J R.Coll.Gen Pract., 39, 153-155.
  • Ahmad, W. I., Kernohan, E. E., & Baker, M. R.(1991). Patients' choice of general practitioner: importance of patients' and doctors' sex and ethnicity. Br.J Gen Pract., 41, 330-331.
  • Andrea, J. & Renner, P. (1995). Interpreting needs of the ED patient: one California hospital's 3-week study. J.Emerg.Nurs., 21, 510-512.
  • Baker, D. W. (1999). Reading between the lines: deciphering the connections between literacy and health [editorial; comment]. Journal of General Internal Medicine, 14, 315-317.
  • Baker, D. W., Hayes, R., & Fortier, J. P. (1998).Interpreter use and satisfaction with interpersonal aspects of care for Spanish-speaking patients. Med.Care, 36, 1461-1470.
  • Baker, D. W., Parker, R. M., Williams, M. V., Clark,W. S., & Nurss, J. (1997). The relationship of patient reading ability to self-reported health and use of health services. Am.J Public Health, 87, 1027-1030.
  • Barnes, D. M., Davis, A. J., Moran, T., Portillo, C.J., & Koenig, B. A. (1998). Informed consent in a multicultural cancer patient population: implications for nursing practice. Nurs.Ethics, 5, 412-423.
  • Barnett, S. (1999). Clinical and cultural issues in caring for deaf people. Fam.Med., 31, 17-22.
  • Barnett, S. & Franks, P. (1999a). Telephone ownership and deaf people: implications for telephone surveys. Am.J Public Health, 89, 1754-1756.
  • Barnett, S. & Franks, P. (1999b). Deafness and mortality: analyses of linked data from the National Health Interview Survey and National Death Index. Public Health Rep., 114, 330-336.
  • Bastarache, M., Braen, A., Didier, E., Foucher, P. (1987). Language Rights in Canada. Montreal, Les Editions. Yvon Blais Inc.
  • Betancourt, J. R., Carrillo, J. E., & Green, A. R. (1999). Hypertension in multicultural and minority populations: linking communication to compliance. Curr.Hypertens.Rep.,1, 482-488.
  • Binder, L., Nelson, B., Smith, D., Glass, B., Haynes, J., & Wainscott, M. (1988). Development, implementation, and evaluation of a medical Spanish curriculum for an emergency medicine residency program. J Emerg Med,6, 439-441.
  • Bird, A. & Macdonald, A. (1998). Multilingual Communication Services Review - Field Overview.
  • Bischoff, A., Tonnerre, C., Eytan, A., Bernstein, M., & Loutan, L. (1999). Addressing language barriers to health care, a survey of medical services in Switzerland. Soz.Praventivmed., 44, 248-256.
  • Blais R. & Maiga A. (1999). Do ethnic groups use health services like the majority of the population? A study from Québec, Canada. Soc Sci Med., 48, 1237-1245.
  • Bowen, S. (1999). Resilience and Health: Salvadoran Refugee Women in Manitoba. M.Sc. Thesis, University of Manitoba.
  • Bowen, S. (2000). Access to Health Services for Underserved Populations in Canada. Ottawa, Health Canada, Health Promotion and Programs Branch.
  • Bowen, S. & Kaufert, J.M. (2000a). Measuring the 'costs': using case studies in the evaluation of health interpreter services. MMIA News.3: 2-5.
  • Bowen, S. & Kaufert, J. M. (2000b). Methodological and Policy Issues in Evaluation of Health Interpreter and Language Access Services. Department of Community Health Sciences, University of Manitoba.
  • Brown, A. F., Perez-Stable, E. J., Whitaker, E. E., Alexander, M., Gathe, J., & Washington, A. E. (1999). Ethnic differences in hormone replacement prescribing patterns. Journal of General Internal Medicine, 14, 663-669.
  • Calamai, P. (1987). Broken Words: Why 5 Million Canadians are Illiterate: A Special Southam Survey. www.nald.ca/fulltext/Brokword
  • Calgary Multicultural Health Care Initiative (2000). Building Bridges: Healthy Living for Calgary's Diverse Community. Calgary: Calgary Immigrant Aid Society.
  • Canada House of Commons (1984). Canada Health Act.
  • Canadian Bar Association Task Force on HealthCare (1994). What's Law Got to Do With it? Health Care Reform in Canada. Ottawa. Canadian Bar Association.
  • Canadian Council on Multicultural Health (1990). Substance Abuse and Cultural Communities: Report of the Provincial Health Promotion Workshops.
  • Canadian Nurses Association (1995). Health in Canada: Perspectives of Urban Aboriginal People. Canadian Nurses Association.
  • Canadian Task Force on Mental Health Issues Affecting Immigrants and Refugees (1988). After the Door Has Been Opened: Mental Health Issues Affecting Immigrants and Refugees. Ottawa: Minister of Supply and Services Canada.
  • Cappon, P. & Watson, D. (1999). Improving the social responsiveness of medical schools: lessons from the Canadian experience. Academic Medicine, 74, S81-S90.
  • Carrasquillo, O., Orav, E. J., Brennan, T. A., & Burstin, H. R. (1999). Impact of language barriers on patient satisfaction in an emergency department. J.Gen.Intern.Med.. 14, 82-87.
  • Carrillo, J. E., Green, A. R., & Betancourt, J. R. (1999). Cross-cultural primary care: a patient-based approach. Ann.Intern Med, 130, 829-834.
  • Chak, S., Nixon, J., & Dugdale, A. (1984). Primary health care for Indo-Chinese children in Australia. Aust.Paediatr.J., 20, 57-58.
  • Chalabian, J. & Dunnington, G. (1997). Impact of language barrier on quality of patient care, resident stress and teaching. Teaching and Learning in Medicine, 9, 84-90.
  • Champion, J. B. (2000). Informed Consent or Compromised Consent? Walking the Fine Line. Unpublished.
  • Chan, A. & Woodruff, R. K. (1999). Comparison of palliative care needs of English- and non-English-speaking patients. J.Palliat.Care, 15, 26-30.
  • Chen, J., Wilkins, R., & Ng, E. (1996). Health expectancy by immigrant status, 1986 and 1991. Health Rep., 8, 29-38.
  • Chen, J., Ng, E., & Wilkins, R. (1996). The health of Canada's immigrants in 1994-95. Health Rep., 7, 33-50.
  • Choudhry, U. K., Srivastava, R., & Fitch, M. I. (1998). Breast cancer detection practices of south Asian women: knowledge, attitudes, and beliefs. Oncol.Nurs.Forum, 25, 1693-1701.
  • Clark, M. M. (1983). Cultural context of medical practice. Western Journal of Medicine, 139, 806-810.
  • Cleeland, C., Gonin, R., Baez, L., Loehrer, P., & Pandya, D. (1997). Pain and treatment of pain in minority patients with cancer. Ann.Intern Med, 127, 813-816.
  • Coburn, D., Torrance, G., & Kaufert, J. (1983). Medical dominance in Canada in historical perspective: the rise and fall of medicine? International Journal of Health Services, 13, 407-432.
  • Corso, S. E. (1997). Work redesign adds multi- lingual advocates for culturally responsive services. Continuum, 17: 1(1), 3- 6.
  • Cotton, P. (1990). Examples abound of gaps in medical knowledge because of groups excluded from scientific study. JAMA, 263, 1051-1052.
  • Crane J.A. (1997). Patient comprehension of doctor-patient communication on discharge from the emergency department. J Emerg Med, 15, 1-7.
  • Cross-Cultural Health Care Program (1996). Interpreter Services Utilization in Eight Health Care Institutions in the State of Washington.
  • Cross Cultural Health Care Project (1995). Voices of the Communities: A Survey of Health Care Experiences of 22 Medically Underserved Communities in the Seattle Area.
  • D'Avanzo, C. E. (1992). Barriers to health care for Vietnamese refugees. J.Prof.Nurs., 8, 245-253.
  • David, R. A. & Rhee, M. (1998). The impact of language as a barrier to effective health care in an underserved urban Hispanic community. Mt.Sinai J.Med., 65, 393-397.
  • Derose, K. P. & Baker, D. W. (2000). Limited English proficiency and Latinos' use of physician services. Med.Care Res.Rev., 57, 76-91.
  • Dias, M. R. & O'Neill, E. O. (1998). Examining the role of professional interpreters in culturally-sensitive health care. Journal of Multicultural Nursing and Health, 4, 27-31.
  • Downing, B. T. (1992). Professional interpreting: Insuring Access for Refugee and Immigrant patients. Unpublished paper.
  • Downing, B. T. (1995). Quality in Interlingual Provider-Patient Communication. Washington D.C. Kaiser Family Foundation Forum: Responding to Barriers in Health Care.
  • Downing, B. T. (1997). Medical interpreting: Progress toward professionalism. ATA Chronicle, 26, 28-29, 41.
  • Doyle, R. & Visano, L. (1987). A Time for Action: Access to Health and Social Services for Members of Diverse Cultural and Racial groups. Toronto: Social Planning Council of Toronto.
  • Drennan, G. (1996). Counting the cost of language services in psychiatry. South African Medical Journal, 86, 343-345.
  • Dubienski, B. (1998). Multilingual Services Review Computer software program]. Available through the International Centre, Winnipeg.
  • Dunlop, S., Coyte, P. C., & McIsaac, W. (2000). Socioeconomic status and the utilization of physicians' services: results from the Canadian National Population Health Survey. Soc Sci Med, 51, 123-133.
  • Dunn, J. R. & Dyck, I. (2000). Social determinants of health in Canada's immigrant population: results from the National Population Health Survey. Soc Sci Med, 51, 1573-1593.
  • Ebden, P., Bhatt, A., Carey, O. J., & Harrison, B. (1988). The bilingual consultation. Lancet 347.
  • Ebert, D. A. & Heckerling, P. S. (1995). Communication with deaf patients. Knowledge, beliefs, and practices of physicians. JAMA, 273, 227-229.
  • Edwards, N. (1994). Factors influencing prenatal class attendance among immigrants in Ottawa - Carleton. Canadian Journal of Public Health, 85, 254-258.
  • Eldridge v. British Columbia (Attorney General) (1997), 46 CRR (2nd) 189 (SCC). In Dominion Law Reports, 151 D.L.R. (4th). 1997.
  • Enguidanos, E. R. & Rosen, P. (1997). Language as a factor affecting follow-up compliance from the emergency department. J.Emerg.Med.,15, 9-12.
  • Esperon-Rayson, G., Gofton, C., Angiyou, M., & Deyell, J. A. (1991). The role of the interpreter in the provision of specialized medical care. Arctic Med.Res., Suppl, 233-234.
  • Federal, Provincial, and Territorial Advisory Committee on Population Health (1999). Towards a Healthy Future: Second Report on the Health of Canadians. Ottawa. Health Canada.
  • Fitch, M. I., Greenberg, M., Levstein, L., Muir, M., Plante, S., & King, E. (1997). Health promotion and early detection of cancer in older adults: assessing knowledge about cancer. Oncol.Nurs.Forum, 24, 1743-1748.
  • Flaskerud, J. H. (1986). The effects of culture-compatible intervention on the utilization of mental health services by minority clients. Community Ment.Health J, 22, 127-141.
  • Flaskerud, J. H. & Liu, P. Y. (1990). Influence of therapist ethnicity and language on therapy outcomes of Southeast Asian clients. Int.J Soc Psychiatry, 36, 18-29.
  • Flores, G., Abreu, M., Olivar, M. A., & Kastner, B. (1998). Access barriers to health care for Latino children. Arch.Pediatr.Adol esc.Med., 152, 1119-1125.
  • Flores, G., Abreu, M., Schwartz, I., & Hill, M. (2000). The importance of language and culture in pediatric care: case studies from the latino community. J.Pediatr.,137, 842-848.
  • Flores, G., Laws, B., Mayo, S., Zuckerman, B., & Abreu, M. (1999). Lost in translation: interpreter errors and their clinical consequences in pediatric encounters. In (pp. 57(A130)). McLean (VA): Ambulatory Pediatric Association.
  • Fox, S. A. & Stein, J. A. (1991). The effect of physician-patient communication on mammography utilization by different ethnic groups. Med Care, 29, 1065-1082.
  • Frayne, S. M., Burns, R. B., Hardt, E. J., Rosen, A. K., & Moskowitz, M. A. (1996). The exclusion of non-English-speaking persons from research. J.Gen.Intern.Med., 11, 39-43.
  • Friedson, E. (1970). Profession of Medicine. New York: Dodd, Mead and Co.
    Top of Page
  • Gandhi, T. K., Burstin, H. R., Cook, E. F., Puopolo, A. L., Haas, J. S., Brennan, T. A., & Bates, D. W. (2000). Drug complications in outpatients. J Gen Intern Med, 15, 149-154.
  • Gentleman, J. & Lee, J. (1997). Who doesn't get a mammogram? Health Reports, 9.(1) 19-28.
  • Gill, P., Scrivener, G., Lloyd, D., & Dowell, T. (1995). The effect of patient ethnicity on prescribing rates. Health Trends, 27, 111-114.
  • Giuliano, A. R., Mokuau, N., Hughes, C., Tortolero-Luna, G., Risendal, B., Ho, R. C., Prewitt, T. E., & Mccaskill-Stevens, W. J. (2000). Participation of Minorities in Cancer Research. The Influence of Structural, Cultural, and Linguistic Factors. Ann.Epidemiol., 10, S22-S34.
  • Goodman, A. H. (2000). Why genes don't count (for racial differences in health). Am.J Public Health, 90, 1699-1702.
  • Gordon, D. (1996). MDs' failure to use plain language can lead to the courtroom. CMAJ, 155, 1152-1154.
  • Gravel, S. & Legault, G. (1996). [Adequacy of health care services for young immigrant families]. Canadian Journal of Public Health, 87, 152-157.
  • Grunfeld, E. (1997). Cervical cancer: screening hard-to-reach groups. CMAJ., 157, 543-545.
  • Gruzd, D. C., Shear, C. L., & Rodney, W. M. (1986). Determinants of no-show appointment behavior: the utility of multivariate analysis. Fam.Med., 18, 217-220.
  • Haffner, L. (1992). Translation is not enough. Interpreting in a medical setting. West J.Med., 157, 255-259.
  • Hamilton, J. (1996). Multicultural health care requires adjustments by doctors and patients. CMAJ, 155, 585-587.
  • Hampers, L. C., Cha, S., Gutglass, D. J., Binns, H. J., & Krug, S. E. (1999). Language barriers and resource utilization in a pediatric emergency department. Pediatrics, 103, 1253-1256.
  • Harrison, P. (1994). Everything from disease risk to drug regimens may be affected by ethnic background, MDs warned. CMAJ., 150, 1310-1312.
  • Hazuda, H. P. (1996). Non-English-speaking patients a challenge to researchers [editorial; comment]. J.Gen.Intern.Med., 11, 58-59.
  • Health Canada (1998). Metropolis Health Domain Seminar. Final Report. Ottawa: Public Works and Government Services.
  • Health Canada (1999). Second Diagnostic on the Health of First Nations and Inuit People. www.hc-sc.gc.ca/msb/fnihp.
  • Health Care Interpreter Partnership Project (1996). Standards for Health Care Interpreting. Vancouver, British Columbia. Health Care Interpreter Partnership Project.
  • Hemlin, I. & Mesa, A. (1996). Giving Voice to Our Future: The Inter-regional Interpreters Bank 1993-1996. Portrait of a Successful Experience. Montreal: Régie Régionale de la santé et des services sociaux de Montreal Centre.
  • Herreria, J. (1998). Marketers target ethnic groups. Efforts reflect diversity, managed care growth. Profiles.Healthc.Mark., 14, 13-16.
  • Hislop, T. G., Clarke, H. F., Deschamps, M., Joseph, R., Band, P. R., Smith, J., Le, N., & Atleo, R. (1996). Cervical cytology screening. How can we improve rates among First Nations women in urban British Columbia? Can.Fam.Physician, 42, 1701-1708.
  • Holden, P. & Serrano, A. C. (1989). Language barriers in pediatric care. Clin.Pediatr.(Phila), 28, 193-194.
  • Hornberger, J., Itakura, H., & Wilson, S. R. (1997). Bridging language and cultural barriers between physicians and patients. Public Health Rep., 112, 410-417.
  • Hoyt, M. F., Siegelman, E. Y., & Schlesinger, H. S. (1981). Special issues regarding psychotherapy with the deaf. Am.J.Psychiatry, 138, 807-811.
  • Hu, D. J. & Covell, R. M. (1986). Health care usage by Hispanic outpatients as function of primary language. West J Med, 144, 490-493.
  • Jackson, C. (1998). Medical interpretation: an essential service for non-English-speaking immigrants. In S. Loue (Ed.), Handbook of Immigrant Health (pp. 61-79). New York: Plenum.
  • Jacobs, B., Kroll, L., Green, J., & David, T. J. (1995). The hazards of using a child as an interpreter J.R.Soc.Med., 88, 474P-475P.
  • James, C. E. (1998). Cultural interpretation services within a multicultural context: an exploration of the problematic and ethical issues facing social service institutions. Can.J.Commun.Ment.Health, 17, 51-66.
  • Jerrell, J. M. (1998). Effect of ethnic matching of young clients and mental health staff. Cult.Divers.Ment.Health, 4, 297-302.
  • Kaluzny, A., Brawley, O., Garson-Angert, D., Shaw, J., Godley, P., Warnecke, R., & Ford, L. (1993). Assuring access to state-of-the-art care for U.S. minority populations: the first 2 years of the Minority-Based Community Clinical Oncology Program. J.Natl.Cancer Inst., 85, 1945-1950.
  • Kaplan, S. H., Greenfield, S., & Ware, J. E. (1989). Assessing the effects of physician-patient interactions on the outcomes of chronic disease. Med Care, 27, S110-S127.
  • Karter, A. J., Ferrara, A., Darbinian, J. A., Ackerson, L. M., & Selby, J. V. (2000). Self-monitoring of blood glucose: language and financial barriers in a managed care population with diabetes. Diabetes Care, 23, 477-483.
  • Kaufert, J. M. & Koolage, W. W. (1984). Role conflict among 'culture brokers': the experience of native Canadian medical interpreters. Soc Sci Med, 18, 283-286.
  • Kaufert, J. M., Koolage, W. W., Kaufert, P. L., & O'Neil, J. D. (1984). The use of "trouble case" examples in teaching the impact of sociocultural and political factors in clinical communication. Med Anthropol., 8, 36-45.
  • Kaufert, J. M., O'Neil, J. D., & Koolage, W. W. (1991). The cultural and political context of informed consent for Native Canadians. Arctic Med Res., Suppl, 181-184.
  • Kaufert, J. M. & Putsch, R. W. (1997). Communication through interpreters in healthcare: ethical dilemmas arising from differences in class, culture, language, and power. J Clin.Ethics, 8, 71-87.
  • Kaufert, J. M., Putsch, R. W., & Lavallee, M. (1998). Experience of Aboriginal health interpreters in mediation of conflicting values in end-of-life decision making. Int.J Circumpolar.Health, 57 Suppl 1, 43-48.
  • Kaufert, J. M. & Kaufert, P. L. (1998). Ethical issues in community health research: implications for First Nations and circumpolar indigenous peoples. Int.J Circumpolar.Health, 57 Suppl 1, 33-37.
  • Kaufert, J. M., Putsch, R. W., & Lavallee, M. (1999). End-of-life decision making among Aboriginal Canadians: interpretation, mediation, and discord in the communication of "bad news". J Palliat.Care, 15, 31-38.
  • Kaufert, P. (1990). The 'Boxification' of culture: the role of the social scientist. Sante Culture Health: Culture and Health Services: A Challenge to Canadian Society, 7, 139-148.
  • Kinnon, D. (1999). Canadian Research on Immigration and Health: An Overview Ottawa. Minister of Public Works and Government Services Canada.
  • Kline, F., Acosta,