Measure of Race, Measure of Race,

Ethnicity and Culture:Ethnicity and Culture:

Marjorie Kagawa Singer, Ph.D. MA, MN, RNMarjorie Kagawa Singer, Ph.D. MA, MN, RN

Professor, UCLA School of Public Health Professor, UCLA School of Public Health

Professor, UCLA Asian American Studies CenterProfessor, UCLA Asian American Studies Center

March 12, 2009March 12, 2009

Population Science isn’t science unless you know the population

What is missing in the What is missing in the

Science of Health Science of Health

Disparities?Disparities?

Far better an approximate answer to the Far better an approximate answer to the

right question, which is often vague, than right question, which is often vague, than

an exact answer to the wrong questions, an exact answer to the wrong questions,

which can always be made precise.which can always be made precise.

JW Tukey, The future of data analysis. Ann math Stat., 1962; 33:13-14.

Research and Practice Research and Practice

FocusFocus

§§ The gap in health outcomes and mortality The gap in health outcomes and mortality among various cultural groups in the U.S. among various cultural groups in the U.S. and Euroand Euro--Americans is significant and Americans is significant and growinggrowing

§§ Numerous studies targeting ethnic Numerous studies targeting ethnic populations have had limited effect in either populations have had limited effect in either reaching diverse populations and/or effecting reaching diverse populations and/or effecting significant change in outcomessignificant change in outcomes

Lack of scholarship to study Lack of scholarship to study

population differencespopulation differences

nn Lack of Lack of precisionprecision in in

operationalizing population groups operationalizing population groups

by by ““racerace””, , ““ethnicityethnicity”” or or ‘‘cultureculture’’

that would be unacceptable with that would be unacceptable with

any other variable used in any other variable used in

scientific inquiry.scientific inquiry.

nn Is culture genetic or behavioral?Is culture genetic or behavioral?

OMB Directive 15 categoriesOMB Directive 15 categories

CategoricalCategorical use of:use of:

1. 1. NonNon--Hispanic WhiteHispanic White

2. 2. HispanicHispanic (ethnicity in 2000 Census) (ethnicity in 2000 Census)

(34 countries)(34 countries)

3. 3. American Indian/Alaska NativeAmerican Indian/Alaska Native (>600)(>600)

4. 4. Asian AmericanAsian American (37 groups)(37 groups)

5. 5. Pacific IslanderPacific Islander (20+ groups)(20+ groups)

6. 6. African American/BlackAfrican American/Black (>5 groups & (>5 groups &

regional differences)regional differences)

} >100 languages

LEP Asian AmericansLEP Asian AmericansPercent of Population, 2000Percent of Population, 2000

21

23

32

34

3541

45

4651

5252

53

58

61

362

8

0 10 20 30 40 50 60 70

Perc

en

t LE

P

U.S.

Non-Hispanic White

Total Asian

Vietnamese

Hmong

Cambodian

Bangladeshi

Laotian

Taiwanese

Korean

Chinese (exc Taiwanese)

Thai

Indonesian

Malaysian

Pakistani

Asian Indian

Japanese

Adapted from APIAHF: Diverse Communities, Diverse Experiences: The Status of Asian Americans and Pacific Islanders in the U.S. (A Review of Six Economic Indicators and Their Impact on Health), 2005

12

8

22

21

26

38

29

23

21

19 1918

16

14 1413

109

7

0

5

10

15

20

25

30

35

40 U.S. Total

Non-Hispanic White alone

Black/African Am alone

Latino/Hispanic

Am Indian/AK Native alone

API

Hmong

Cambodian

Bangladeshi

Malaysian

Laotian

Indonesian

Pakistani

Vietnamese

Korean

Thai

Chinese

Asian Indian

Japanese

Filipino

2000 Poverty Threshold

Family of 4 w/2 children = $17,463Family of 4 w/3 children = $17,524

Individual living alone <65 yrs = $8,959Individual living alone ≥65 yrs = $8,259

U.S. Poverty Rates, 2000U.S. Poverty Rates, 2000P

erce

ntag

e

1U.S. Census: Poverty in the United States: 2000 (P60-214; issued Sept 2001); 2Asian & Pacific Islander American Health Forum:

API Center for Census Information and Services, 3Asian American Justice Center, and Asian Pacific American Legal Center: A Community of Contrasts: Asians and Pacific Islanders in the United States, 2005; AAPI’s Socioeconomic Status (U.S. Census

2000 Data), http://www.apiahf.com/cic/state_incpov.asp?stateID=00

% U.S. Totals by Race/Ethnity1, and Selected Asian Populations2,3

11

Age-Adjusted Death Rates for S

troke,

CA 1990

White

Black

Native American

Mexican

Puerto Rican

Cuban

Other Hispanic

Chinese

Japanese

Korean

Vietnamese

Cambodian

Thai

Laotian

Filipino

Asian Indian

Other Asian

Hawaiian

Guamanian

Samoan

Other Islander

0

50

100

150

Age-Adjusted Death Rates for

Coronary Heart D

isease, CA 1990

White

Black

Native American

Mexican

Puerto Rican

Cuban

Other Hispanic

Chinese

Japanese

Korean

Vietnamese

Cambodian

Thai

Laotian

Filipino

Asian Indian

Other Asian

Hawaiian

Guamanian

Samoan

Other Islander

0

50

10

0

15

0

20

0

25

0

30

0

Where we are:

Assumptions made from cultural particulars….

Limitations of Current use of Limitations of Current use of

Race, Ethnicity and CultureRace, Ethnicity and Culture

nn Methodologic Issues Methodologic Issues –– validity and validity and

ability for interpretation:ability for interpretation:

nn ConceptualConceptual

nn MethodologicMethodologic

1.1. OperationalizationOperationalization

2.2. MeasurementMeasurement

3.3. EquivalenceEquivalence

Limitations, conLimitations, con’’tt

nn Data qualityData quality–– ValidityValidity

–– Lack of consensus on its use Lack of consensus on its use -- uniformityuniformity

–– Variability in the terminologyVariability in the terminology

–– MisclassificationMisclassification

–– Lack of reliability Lack of reliability -- especially over timeespecially over time

–– Mutually exclusive categoriesMutually exclusive categories

nn CDC National Electronic Telecommunications CDC National Electronic Telecommunications system for surveillance 1994system for surveillance 1994--1997 (MMWR, 1997 (MMWR, 1999)1999)–– 52% to 55% of records had completed 52% to 55% of records had completed

information on race and ethnicityinformation on race and ethnicity

–– 98% age98% age

–– 95% to 99% for sex 95% to 99% for sex

Winker requirement Winker requirement 2004, p 2004, p

16141614

nn Give rationale for using race, ethnicity or Give rationale for using race, ethnicity or bothboth

nn Define how they measured the variablesDefine how they measured the variables

nn Describe how race and/or ethnicity was Describe how race and/or ethnicity was attributedattributed–– Self identification is preferredSelf identification is preferred

–– Designate whether options were available and Designate whether options were available and closed or openclosed or opennn If Closed, provide options If Closed, provide options

nn If categories combined, explainIf categories combined, explain

nn Process of categorization of penProcess of categorization of pen--ended options should be ended options should be made transparentmade transparent

Key DefinitionsKey Definitions

§§ RaceRace –– MYTH scientifically MYTH scientifically –– assumed that assumed that

phenotype predicts genotypephenotype predicts genotype

§§ CultureCulture –– systemsystem of beliefs, values, lifestyles, of beliefs, values, lifestyles,

ecologic and technical resources and constraints ecologic and technical resources and constraints

§§ EthnicityEthnicity –– oneone’’s sense of identity as a member of s sense of identity as a member of

a cultural group within a power structure of a a cultural group within a power structure of a

multicultural society & identified so by others based multicultural society & identified so by others based

upon socioupon socio--historical contexthistorical context

§§ RacismRacism –– assertion of power; ego fulfillment & assertion of power; ego fulfillment &

status at expense of others by skin color status at expense of others by skin color

10/14/08

CultureCulture

§§ Environment Environment

§§ EconomyEconomy

§§ TechnologyTechnology

§§ Religion/World ViewReligion/World View

§§ LanguageLanguage

§§ Social StructureSocial Structure

§§ Beliefs and Values Beliefs and Values

Ecological Model of Health* Modified from McElroy and

Townsend, 1996.

Scientific Validity

Concepts of Culture as Variable

� Continuous

� Multidimensional

� Heterogeneous

� Dynamic

� Dichotomous

� Unidimensional

� Monolithic

� Static

Major Assumption in Major Assumption in

AcculturationAcculturation

nn Acculturating to Acculturating to ““mainstreammainstream””lifestyles will promote healthlifestyles will promote health

Based on:Based on:

nn ““Behavior/LifestyleBehavior/Lifestyle”” model that model that assumes culturally based knowledge, assumes culturally based knowledge, attitudes and beliefs cause people to attitudes and beliefs cause people to make health care choices resulting in make health care choices resulting in observed health patterns.observed health patterns.

AcculturationAcculturation

nn Usual measuresUsual measures§§ Place of birthPlace of birth

§§ LanguageLanguage

§§ Time in the U.S.Time in the U.S.§§ These will measure new immigrants, but what about ethnic These will measure new immigrants, but what about ethnic

enclaves like Little Italy in NY or South Central in Los Angelesenclaves like Little Italy in NY or South Central in Los Angeles or or the Southside in Chicago or Texthe Southside in Chicago or Tex--Mex Laredo in TexasMex Laredo in Texas

§§ Alternative Alternative –– familiarity in ability to navigate the familiarity in ability to navigate the health care systemhealth care system§§ Do not need to give up culture to use Taiwan Do not need to give up culture to use Taiwan –– no no

appointments for medical visitsappointments for medical visits

§§ Socialized medicine Socialized medicine -- do not need to paydo not need to pay

Health Acculturation Health Acculturation

Navigation SkillsNavigation Skills

nn Emphasizing structural rather than cultural Emphasizing structural rather than cultural barriers to health care utilizationbarriers to health care utilization–– Health care literacyHealth care literacy

–– InsuranceInsurance

–– GeographyGeography

–– Differential CareDifferential Care

nn Identifying specific cultural barriers with a Identifying specific cultural barriers with a clearer and more holistic definition of cultureclearer and more holistic definition of culture

Cultural SensitivityCultural Sensitivity

All Phases of the Research ProcessAll Phases of the Research Process

§§ PlanningPlanning

§§ Theory DevelopmentTheory Development

§§ InstrumentationInstrumentation

§§ AnalysisAnalysis

§§ Interpretation Interpretation

Rogler, 1989Rogler, 1989

Symbols are Symbols Only Symbols are Symbols Only

By Convention By Convention

§§ No Natural connectionNo Natural connection

§§ ArbitraryArbitrary

§§ Vary from one culture to another Vary from one culture to another

Challenge the assumption of UNIVERSALITY

Innate Predisposition

Evil (mutable or immutable)

Neither good nor bad mutable or

immutable

Good (mutable or immutable)

Man’s Relation to Nature

Man Subjugated to Nature

Man in Nature Man Over Nature

Time Dimension Past Present Future

Valued Personality Type

Being Being-in-Becoming

Doing

Modality of Relationship

Lineal Collateral Individualistic

Human Problems and Solutions

Kluckhohn & Strodbeck, 1966 (in Brink)

Culture Based AssessmentCulture Based Assessment

qq Cultural Element ApproachCultural Element Approach --

qq StaticStatic

qq StereotypicalStereotypical

qq Cultural PerspectiveCultural Perspective

qq Systems approachSystems approach

qq Variations of principles within the social Variations of principles within the social

context of the individual and the group context of the individual and the group

Cultural VariabilityCultural Variability

1.1. Individualism Individualism -- Collectivism Collectivism

2.2. HighHigh--and lowand low-- context communicationcontext communication

3.3. Masculine Masculine –– Feminine Feminine

““WhiteWhite”” PopulationPopulation

Scotland Italy Finland

Ireland Greece Spain

Iraq Egypt Yugoslavia

0% 20% 40% 60% 80% 100%

Tell Diagnosis

Tell

Prognosis

Life Support

Decisions=Pt

Korean-Am

Mexican-Am

African-Am

Euro-Am

Blackhall, et al

JAMA (1995) 274:820-825

Elder’s Attitude Towards

Patient Autonomy

GoalGoal

Increase the Increase the scientificscientific study of study of

cultural differences to identify cultural differences to identify

mutable points of intervention in mutable points of intervention in

order to modify or promote order to modify or promote

behaviorsbehaviors

How do we improve the science How do we improve the science

to study diverse populations?to study diverse populations?

44 Develop guidelines to Develop guidelines to operationalize operationalize the terms:the terms:

44 culture culture

44 ethnicityethnicity

44 race or the effects of racialized carerace or the effects of racialized care

44 Currently no standards because of lack of attention Currently no standards because of lack of attention

-- assumptionsassumptions

44 , but can develop guidelines to , but can develop guidelines to eliminate eliminate the dichotomous the dichotomous

use of these concepts use of these concepts

Operationalizing CultureOperationalizing Culture

Level of AssessmentLevel of Assessment

§§ Environment Environment

§§ EconomyEconomy

§§ TechnologyTechnology

§§ Religion/World ViewReligion/World View

§§ Language Language ––

§§ Health LiteracyHealth Literacy

§§ Social StructureSocial Structure

§§ Beliefs and Values Beliefs and Values

Questions to define each level

§Environment (abiotic and biotic)

§Income, types of jobs

§Degree of technology involved and job qualities

§Religion/World View

§How might this affect attitudes toward issue of focus?

§What is the decision making pattern of the group? Sex, gender issues, age, status?

§What particular constellation of belief and values may impact behavior change envisioned?

Ethnicity/ Health Acculturation MeasuresEthnicity/ Health Acculturation Measures

Minimal Data SetMinimal Data Set

1. How do you identify your ethnic background(s)/ heritage(s)1. How do you identify your ethnic background(s)/ heritage(s)

OMB.D.15 + CTR + specify _____________, ____________, __________OMB.D.15 + CTR + specify _____________, ____________, ________________

2.2. Place of birthPlace of birth ____________________

2a. If not US: Age at immigration______ 2a. If not US: Age at immigration______

3.3. Degree of value/pride/identification as:Degree of value/pride/identification as:

3a. 3a. Your ethnicity/heritageYour ethnicity/heritage

Specify (as many as needed)Specify (as many as needed)

_______ 1_____________ 1________________10__________10

Not at all completelyNot at all completely

_______ 1_____________ 1________________10__________10

Not at all completelyNot at all completely

3b. 3b. Dominant U.S. modern culture 1_________________10Dominant U.S. modern culture 1_________________10

4. 4. Do you know where you can go to get health care? Do you know where you can go to get health care?

Yes ____ Where? __________ No ____Yes ____ Where? __________ No ____Kagawa-Singer, 2000

Ethnicity/ Health Acculturation MeasuresEthnicity/ Health Acculturation Measures

Minimal Data Set 2/2Minimal Data Set 2/2

5. Do you have a doctor for your medical care when you are well?5. Do you have a doctor for your medical care when you are well?

Yes ____ No ____ Yes ____ No ____

When you are sick? Yes ____ No ____ When you are sick? Yes ____ No ____

6. Do you feel you know how to use the health care system? 6. Do you feel you know how to use the health care system?

Not at all __________________VeryNot at all __________________Very

7. Do you feel you can find the appropriate health care people t7. Do you feel you can find the appropriate health care people to talk to? o talk to?

Not at all __________________VeryNot at all __________________Very

8. If you don8. If you don’’t understand what the provider is recommending, do you t understand what the provider is recommending, do you

feel you can ask questions? Yes ____ No ____ feel you can ask questions? Yes ____ No ____

9. Are you confident you can follow9. Are you confident you can follow--through with the answer(s)? through with the answer(s)?

Not at all __________________VeryNot at all __________________Very Kagawa-Singer, 2000

11-28-05

Composite Measure of Ethnic IdentityComposite Measure of Ethnic Identity1.1. Parental heritage Parental heritage

2.2. Generation in US/ Reason for Generation in US/ Reason for immigrationimmigration

Push/PullPush/Pull

3.3. Ethnic groupEthnic group

GenerationGeneration

AcculturationAcculturation

LanguageLanguage

Beliefs & practicesBeliefs & practices

Degree of personal identificationDegree of personal identification

and public identityand public identity

Number of identity groups and Number of identity groups and

degree of overlap degree of overlap

4.4. DietDiet

5.5. Physical activityPhysical activity

6.6. Social choicesSocial choices

Circumstances or choiceCircumstances or choice

7.7. Family structure/Support systemFamily structure/Support system

CompositionComposition

AgeAge

88. SES . SES

IncomeIncome

WealthWealth

EducationEducation

9.9. Access to Health CareAccess to Health Care

Direct CostDirect Cost

Insurance/CoInsurance/Co--PaymentPayment

Sick leave/VacationSick leave/Vacation

Wait TimeWait Time

Proximity/AccessibilityProximity/Accessibility

TransportationTransportation

Language capability of providersLanguage capability of providers

10.10. Religion/SpiritualityReligion/Spirituality

Beliefs & practicesBeliefs & practices

Internal/External locus of controlInternal/External locus of control

WorldviewWorldview

11.11. Alternative health practicesAlternative health practices

HealersHealers

Parallel or complementary useParallel or complementary use

12.12. Neighborhood (Social Capital)Neighborhood (Social Capital)

Ethnic makeEthnic make--up Aestheticsup Aesthetics

Economic level/consonanceEconomic level/consonance

StabilityStability Degree of interactionDegree of interaction