measure of race, ethnicity and culture - health and...
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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
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
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