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To assess discrimination in health care, reliable, valid, and comprehensive measures of racism/discrimination are needed.
To review literature on measures of perceived race/ethnicity-based discrimination and evaluate their characteristics and usefulness in assessing discrimination from health care providers.
Literature review of measures of perceived race/ethnicity-based discrimination (1966–2007), using MEDLINE, PsycINFO, and Social Science Citation Index.
We identified 34 measures of racism/discrimination; 16 specifically assessed dynamics in the health care setting. Few measures were theoretically based; most assessed only general dimensions of racism and focused specifically on the experiences of African American patients. Acceptable psychometric properties were documented for about half of the instruments.
Additional measures are needed for detailed assessments of perceived discrimination in the health care setting; they should be relevant for a wide variety of racial/ethnic groups, and they must assess how racism/discrimination affects health care decision making and treatments offered.
Widespread racial/ethnic disparities in the quality of health care received, treatments offered, and health outcomes in the U.S. were documented in the Institute of Medicine report, Unequal Treatment,1 but the reasons that racial/ethnic minority groups are likely to receive poorer quality care than Whites have not been fully explicated.2–4 Hypothesized reasons for worse care include differentials in access to health care, actual health status, patient preferences, and provider bias or discrimination.5,6 Yet, even after controlling for the former three factors, many studies have demonstrated that racial/ethnic minorities are less likely than non-Hispanic Whites to receive equivalent care across a broad spectrum of diseases, including cardiovascular disease, cancer, renal disease, asthma, mental illness, diabetes, and HIV/AIDS, suggesting that discrimination remains a plausible explanation.1,3–5,7–9 Health care provider behaviors, attitudes, or treatment may vary according to patients’ race/ethnicity. To assess such possible racism/discrimination and its effects, reliable and valid measures are needed.1,3,6,7,10–17
Three levels of racism have been described in the literature: personally-mediated, institutionalized, and internalized.18 Personally-mediated racism, the focus of this paper, occurs via differential assumptions about the abilities, motives, and intentions of others according to their race/ethnicity (prejudice) and through differential actions toward others according to their race/ethnicity (discrimination). Racism, whether intentional or unintentional, may adversely affect the treatment of racial/ethnic minority patients in a variety of ways in the health care setting.13 Health care provider bias can be as subtle as not giving certain patients the full range of treatment options, related to conscious or unconscious provider beliefs that certain patients are less willing to accept or adhere to certain therapies, or are incompetent, deviant, or not likeable.3,6,9,14,18,19 Bias may also influence providers’ clinical judgments3 or their evaluations of a patient’s personal or clinical characteristics.14 African American physicians have argued that popular misconceptions, inaccuracies, and stereotypes of the psychology of African Americans could lead to misdiagnosis.10
Although it may be challenging for patients to discern whether they are experiencing discrimination, a growing body of literature deals with the methodology for measuring discriminatory behavior that is perceptible, and for inferring experiences of racism in a variety of settings, including community, school, workplace, and health care settings.20,21 Prior reviews of this literature focused on measures that could be used specifically to assess the health effects of discrimination,21 on comparing explicit versus generic measures of discrimination22 or on the fewer measures of discrimination available at an earlier time.20 However, the burgeoning literature on this topic suggests that an updated review of such measures is needed. The need for a new review is also bolstered by the fact that no previous review has evaluated measures’ potential utility in the health care setting to assess accurately patients’ experiences of racism or discrimination as they relate to the care received. Understanding the available measures is also important because until there is a reliable and valid method for assessing and comparing racism/discrimination across health care environments that can accurately assess the experiences of multiple population groups, it will not be possible to document the presence or degree of racism/discrimination, or to measure changes in its levels subsequent to interventions. Further, numerous new measures have appeared in the literature since the prior reviews; for example, the number of available measures has more than quadrupled since Utsey’s 1998 review of six measures.20 Thus, there is a need for an updated review and specific analysis of how well-developed or suitable such measures are for assessing experiences of racism in the health care environment, as well as the measures’ appropriateness for use in different population groups within this setting.
The purpose of this review is to update and summarize the published literature on measures assessing individuals’ perceptions of racism/discrimination in their environment (that is, an individual’s appraisal of such dynamics in his/her environment or from people with whom s/he interacts) and to examine critically how these measures may apply when studying perceived racism in the health care setting. We propose that effective measures will assess whether racist/discriminatory events/actions occurred, the extent to which these bothered the individual experiencing them, and whether they affected the individual’s interaction with his or her health care provider, including whether the experience affected the patient’s view or acceptance of the provider’s treatment recommendations,12 or the provider’s offer of care.
In addition, in order to understand the relevance of existing measures to a wide variety of population groups, we evaluate the racial/ethnic orientation of the measures (e.g., anchoring of an instrument to certain racial/ethnic groups’ experiences that might be a function of belonging to a certain group). This compilation and critical review of existing measures and evaluation of their characteristics and gaps will be useful for guiding future researchers in their choice of measures to examine the provider contribution to racial/ethnic disparities in health care.
A comprehensive review of the medical and social science literature from 1966 to January 2007, using MEDLINE, PsycINFO, and the Social Science Citations Index, was conducted to identify relevant articles pertaining to perceived measures of racism or discrimination in the U.S. We sought to identify papers that simultaneously 1) addressed the dimensions of race and ethnicity (for which we used the search terms race, ethnicity, Blacks, African Americans, Hispanic, Hispanic Americans, Latinos, Asian, Asian Americans, Native Americans, American Indians, ethnic groups, racial stocks, Caucasoid race, or Whites); 2) addressed the issues of discrimination, racism, bias, unfair treatment, or prejudice (for which we used these exact terms); and 3) discussed the development or adaptation of a measure to assess the perceived experience of racism or discrimination (we excluded articles applying previously developed measures in order to capture unique measures). For the latter dimension we used the search terms measure, measurement, discrimination measure, and measures of racial discrimination. Using all databases, we limited our search to peer-reviewed articles in English that focused on experiences in the United States in human adults. When we conducted this search within Medline we identified 287 articles; after individually reviewing all entries to select only those directly relevant to this review, we constructed a list of 23 relevant papers. Within PsycINFO, the search identified 381 articles, which we pared down to 18 relevant papers. In the Social Sciences Citation Index, we identified 438 papers, retaining 16 for the review. Some of the discarded papers were not relevant or described studies using measures previously reported in other papers or did not provide sufficient information about the measure (e.g., a full list of the included items) to warrant inclusion in our review. In addition, a review of references within each article identified other relevant articles. Only studies that documented the initial presentation or refinement of structured written instruments to measure perceived racism, unfair treatment, or discrimination were included in the final analysis. After eliminating overlap between the citation lists, 34 unique papers describing measures or adaptation of prior measures of racism or discrimination remained.
We examined the measures of racism along five dimensions: 1) settings in which measures were developed/used, 2) theoretical frameworks, 3) content of measures, 4) psychometric qualities, and 5) populations studied (summarized in Table 1). For the measures that included items specific to the health care setting, we examined the number of health care-related items and the content of those items. We evaluated whether the measures examined the occurrence of specific racist/discriminatory events, the bothersomeness of the experience, or its effect on the individual’s interaction with the provider, including assessments of the effects on the treatment received/recommended/accepted.
As detailed in Table 1, 19 of the 34 articles included in this review describe an original instrument (one not previously introduced in the literature).2,23–40 Fifteen describe adaptations, modifications, or further testing of previous instruments.8,12,13,41–52 Instruments ranged in length from 1 item to 109 items.
The majority of measures were oriented toward experiences of racism/discrimination in general or in the community setting.2,8,23,26,28,30,31,36,38–42,44,45,48–51 Some measures were developed using student samples or were at least partially oriented toward educational settings29,32,39,45,50,51 or the workplace.24,25,33,34,39,50
Sixteen measures directly assessed at least some dimensions of perceived racism in the health care setting.8,12,13,23,26,35,36,38,39,42–44,46,48,50,52 One of these utilized the Perceptions of Racism Scale36 while another used an adaptation of the Schedule of Racist Events,43 while the others had few items specific to one’s specific experience, and requested no information regarding treatment decisions. Two used similar general items.13,35 Bird had the most detailed list of experiences in health care, however it focused on experiences someone had ever had in receiving health care rather than with a specific provider or in a specific care setting.12 Numerous additional measures were designed to be employed in a variety of settings (such as occupational and educational) including a small number of items addressing experiences in the health care setting.8,23,26,38,39,44,46,48,50
The most common theoretical perspective taken by measure-developers was that of Lazarus and Folkman,54 who stressed the importance of understanding individuals’ perceptions of stressful experiences (this perspective was taken by eight of the instruments). Utsey,20 for example, explicitly based his measures on this stress model. In this theoretical framework, the interpretation of (stressful) perceived racist events (major events and daily hassles) is more important than the objective events themselves,54,55 because different individuals may appraise similar events differently, resulting in different effects on the individual (e.g., anger vs. self-doubt). Therefore, perception of racist events was the most important facet of the experience to assess.
Landrine posits that the event and appraisal approach is most appropriate for measuring racist events.26 Appraisal refers to the assessment of the racist event and the psycho-emotional resources available for dealing with them.55 According to this author, ways of dealing with racism may influence perceived racism or its effects during the health care encounter. One ecologic framework, found in the work of Auslander, highlighted the importance of health behaviors and beliefs and ways in which individual behaviors and cognition about medical care are influenced by family and community.42 Therefore, questions pertaining to family and community were included in the instrument in order to decipher perceived racism experienced within this broader context.
Others have assessed race-related stressful life events, explicitly building on Essed’s notion of everyday discrimination—the idea that specific incidents of racial bias can affect one’s well-being in a manner different from the effects of major experiences of unfair treatment.12,31 The remaining instruments were presented without reference to a theoretical or conceptual base.
All of the measures of perceived racism recorded in Table 1 assess the individuals’ experiences of situations and environments, as this was part of our selection criteria. We refer to this as individual-as-target measures; they asked questions about racism directed toward the individual, based on his or her race/ethnic group membership. In addition, one measure also asked about racism experienced by family members.2
Almost all of the 34 measures asked about any prior experiences of perceived racism from the target’s perspective.2,8,12,13,23–50 In addition, several used a second reference period for measurement; one used a two-year reference period,13 three used a one-year reference period,26,38,39 one used a six-month reference period,28 one used a three-month reference period32 and two used a one-month reference period.2,51 Vines used the following time period for reference: before 20 years of age and during one’s 20s.8
A person who experiences discrimination responds with emotional or behavioral coping mechanisms, and interprets this experience according to individual belief systems.38 In measuring experiences of discrimination, it is important to understand someone’s response to such experiences (e.g., passive, active, behavioral, and emotional), whether expressed or suppressed, in addition to simply whether someone is exposed to racism, in order to evaluate its impact on the provision of health care and health outcomes. We found that 11 of the 34 publications reviewed asked about the type of responses to racism,8,26–28,30,38,41,46,48,49 above and beyond specific experiences the individual had had. None, however, inquired about the impact of racism/discrimination on treatment decisions or care received in the health care setting.
Racism can either be measured by asking respondents to indicate specific experiences of racism (e.g., unfair treatment by doctors) or to respond to less focused questions about unfair treatment in general. Seven publications mentioned unfair treatment in the instruments as a reference to racism.23,24,26,39,46,48,51 In order to compare unfair treatment based on race/ethnicity to unfair treatment because of gender or other factors, respondents to three measures were further asked about unfair experiences based on gender, socioeconomic position or social class, sexual preference, and religion.23,46,52 Almost all of the measures specifically anchored the questions about discriminatory treatment in the respondent’s race/ethnicity rather than gender, sexual orientation, or another trait, with two exceptions.24,52
Over half (19 of 34) of the publications described some form of psychometric evaluation of the measures of perceived racism.8,12,24,26–33,36,38–40,42,44,47,51 Krieger conducted the most detailed psychometric analyses of any of the measures, showing that the Experiences of Discrimination measure had high internal consistency reliability, good test-retest reliability, and correlated with other self-report discrimination measures.46 Most of the psychometrically evaluated measures had Cronbach’s Alpha scores of at least 0.70 in all aspects of the instrument, and thus were shown to have high internal consistency reliability, with the exception of three measures.8,27,38
The vast majority of studies included African American respondents.2,8,12,13,23,25,26,28–32,34–52 Fourteen studies included Hispanic respondents.13,24,27,32–34,39,40,43–46,48,52 Nine included Asian respondents.13,32–34,39,43–45,52 In eight studies, the category Latino was specified,35,39,40,43,45,46,48,52 and in two studies Mexican immigrants were included.27,33 Native Americans were included as a race/ethnic category for four studies.34,43,45,52
We focused additional analytic attention on the 16 measures that included items for the specific purpose of examining individuals’ experiences in the health care setting.8,12,13,23,26,35,36,38,39,42–44,46,48,50,52 We evaluated the number of items focused on health care experiences, examined the content of the items, and reviewed whether they asked the degree to which the experience was bothersome. Sixteen original measures included at least one item about experiences in obtaining health care, but none included more than 10 items. In general, the content of the items focused on racist attitudes of doctors and other health care workers, and general discriminatory behaviors such as being treated unfairly, being treated with less respect, or being provided poorer service than other patients. McNeilly’s measure included an item about being denied hospitalization or medical care because of race/ethnicity and Ryan’s measure included an item about receiving less than the best health care because of race.38,48 These were the only specific questions about the process of medical care in any of the measures. Seven of these measures assessed the bothersomeness of racist/discriminatory treatment.26,30,37–39,47,48
Our evaluation of the 34 measures identified in the medical or psychological literature that assess individual perceptions of experiences of racism or discrimination in their environment revealed than only 16 such measures were specifically developed for or relevant to experiences in the health care setting. Of these measures, half included only a single item.23,26,38,39,44,46,48,50 The remaining measures were limited by their sole focus on the experiences of African Americans without inclusion of experiences of other minority groups12,36,42,43,52 or by their use of questions about only general experiences (e.g., being treated with less courtesy, disrespect, or poorer service).8,13,35 We view these as significant limitations of the available measures. Without attention to how patients feel about their experiences of racism, or how bothersome the experiences of racism/discrimination were, or how such experiences specifically affect the medical care provided, it is difficult to assess the impact of racism/discrimination on patients’ care. Thus, the existing measures are useful to characterize the general experiences of patients of color, particularly African Americans, in obtaining medical care, similar to patient satisfaction measures’ gestalt ratings of care, but the existing measures cannot inform the field regarding the specific impact of racism/discrimination on treatment recommendations or health care decisions.
We recommend that researchers refine and extend existing measures or develop new measures that specifically assess racism in the health care setting and the ways in which it affects medical care, since the ultimate impact of racism/discrimination in this setting differs from that of, for example, experiences in the general community.
Only 8 of the 34 publications reported asking respondents about the kinds of responses, whether active or passive, they had to racism.8,23,30,38,46–49 We view this as a limitation in the majority of the existing instruments. Without an understanding of individuals’ responses to racial discrimination, research cannot evaluate how troubling or significant the experiences were, nor elucidate how such experiences ultimately affected the provision of health care.
According to some researchers, measures should avoid global questions, due to the likelihood of underestimating exposure to experiences of racism.21 Examples include the single-item global measure of racism10,31 such as ever experiencing racism and questions using the term unfair treatment.39 These questions may be too vague to apply to the race-based experience of the individual.23,27,46 Furthermore, the generic experience of unfair treatment can be generalized to all people who have such experiences. We believe it is vital to anchor questions about unfair treatment to the issue of race/ethnicity specific to the health care encounter in order to provide specific information for policy implementation and interventions in the health care setting.
In addition to asking about individuals’ experiences, it may be helpful to ask questions about family and/or group experiences, as some measures did.38,50 Individuals may deny racism to avoid feeling that they do not have control over situations, and some prefer not to recall such memories.56–59 A few studies indicate that some minority group members tend to minimize racism and attribute their failure to themselves (internalized racism).58,60 Consequently, some experiences of racism may be underreported. Since minimizing recall of racism may be psychologically benefficial to the individual,60 future instruments should be designed to be sensitive to the tendency of individuals to deny reports of racism, without undermining it.40
Past research indicates that everyday discrimination, often referred to as chronic exposure to racism, is a better predictor of health status than major (acute) experiences.12,31,61 Furthermore, chronic perceived racism may affect health care utilization and subsequent health outcomes.12 Thus, we recommend that measures include assessments of chronic racism and racism in society in general, because including them may provide important information about potential confounders and effect modifiers of the true racism exposure-health outcome relationship in the health care setting.41
Current measures of experiences of racism are subject to several methodological pitfalls. For instance, in order to measure accumulated exposure to racism, respondents are generally asked to indicate whether they have experienced racism within a certain time span. Yet, timing of experiences (e.g., ever or past month) may introduce recall bias since people tend to forget experiences over time.30,41 It may be more benefficial to include a one-year reference period when asking about racism, according to the literature on stressful life events.2
Comparison of measures was challenging because some focused on the frequency while others focused on the severity of racism.31 People sometimes forget about the intensity of an experience over time,41,62 and the nature of racism in the U.S. has changed over time as well, becoming less overt.18,29,30,41,62,63 We recommend asking questions about both subtle and overt experiences of racism, within a specified time frame.
The absence of a clearly elucidated theoretical framework for many of the measures we reviewed is a matter of concern. To be able to measure the existence and extent of racism, it is necessary to have a theory of how racism might occur and what its effects might be. Without such a theory to guide measure development, analysts may conduct studies using invalid measures that do not have interpretable results. Thus, we recommend that future measures be anchored in theory, such as Lazarus and Folkman’s view of stress, as described above.
Using the same measure across diverse groups of people can be conceptually and psychometrically problematic. As a result, issues and concerns addressed in the design of an instrument to assess perceived racism may not be relevant to the population being studied, because measures were not developed with this population in mind. Inclusion of information about subgroups within racial/ethnic minority populations may allow for better analysis of cultural influences on perceived experiences of racism.10 Although nearly half of the measures reviewed in our collection of publications were psychometrically evaluated, most focused on the experiences of African American populations, and fewer focused on those of other racial/ethnic groups. As the U.S. population becomes increasingly diverse, due in part to the rapid growth of the Hispanic population, it will become imperative to assess accurately the experiences of various groups. We advocate continued development of new measures or enhancement of existing measures to ensure that psychometrically and conceptually valid instruments are applicable to more diverse population groups.
This review was limited in several ways. We focused on perceptions of racism and discrimination instead of more objective assessments (although, to our knowledge, few objective tools are available). Second, patient perceptions may not be the best tool with which to document structural or institutional discrimination, which are often invisible to individual participants. Thus, the fact that racial and ethnic minorities often receive care in poorer quality facilities undoubtedly leads to worse outcomes, but it would be hard for an individual to perceive such differences. Finally, individuals from racial/ethnic minority backgrounds may perceive poor treatment in the health care setting as being a function of race, which may not be the case. Despite these limitations, the data from this review document the state of the art in measuring racism/discrimination in the health care setting, and provide important direction for future measurement development and refinement.
Research on the contribution of provider behavior to disparities in medical care is in its infancy, and there have been few studies specifically designed to test the effect of provider and health care personnel behavior on these disparities.3 Further study is needed to validate the hypothesis that provider behavior during encounters is independently influenced by patient race/ethnicity.3 Furthermore, most of the prior measures of perceived racism have focused on the experiences of African Americans, with less emphasis on other population groups. There is an obvious gap in the literature to address the potential contribution of provider behavior to disparities in medical care for American Indians/Alaskan Natives, Asians, and Hispanic populations. Therefore, to meet the challenge of explicitly measuring other racial/ethnic minority populations’ experiences, new methods and approaches for measuring perceived racism in health care settings are needed. The information provided by such studies may help to design interventions intended to ameliorate the provider contribution to disparities in care for diverse racial/ethnic populations.
This work was supported by NIH/National Institute of Dental and Craniofacial Research grants U54 DE14264-02, and K24 DE00419, NIH/NHLBI grant R01 HL072814. Ms. Raymond received a Research Supplement to Promote Diversity in Health-Related Research in support of her work (U54 DE014264-04S2). Dr. Kressin is supported by a Research Career Scientist award (RCS 02-066-1) from the Health Services Research and Development Service, Department of Veterans Affairs.
The views expressed in this article are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs.
Nancy R. Kressin, Center for Health Quality, Outcomes and Economic Research (a VA Health Services Research and Development National Center for Excellence), Bedford VA Medical Center, Bedford, MA, and the Section of General Internal Medicine, Boston University School of Medicine, Boston, MA.
Kristal L. Raymond, Department of Health Policy and Health Services Research, Boston University Goldman School of Dental Medicine, Boston, MA, at the time this research was conducted.
Meredith Manze, Boston Medical Center, Boston, MA.