Cross-Cultural Issues in Asthma Research and Treatment Anne L. Wright, PhD Arizona Respiratory...

Cross-Cultural Issues in Asthma Cross-Cultural Issues in Asthma Research and TreatmentResearch and Treatment

Anne L. Wright, PhD

Arizona Respiratory Center

The Department of Pediatrics

The University of Arizona

Tucson, Arizona, USA

Outline of today’s talkOutline of today’s talk

I. Overview: What is culture?

II. Epidemiologic methods and research on asthma

III. Investigating cultural influences on asthma perceptions and behaviors in Native Americans/Alaska Natives

– Navajo (SW US) 1997 – 1998

– Yup’ik (Alaska) 1999 - 2001

I. OverviewI. Overview

What is culture? (1)What is culture? (1)

• Culture: what one needs to know or believe in order to behave appropriately.

• Everybody’s got culture!

• Culture influences beliefs and behaviors.

What is culture? (2)What is culture? (2)

• Cultural beliefs: arbitrary; based on core, normative values

• Individuals vary in acceptance of cultural beliefs.

• Culture influences illness beliefs and behaviors.

Culture influences Culture influences illness beliefs and behaviorsillness beliefs and behaviors

• Culture influences sick role, social relations of treatment, communication about the illness, health beliefs

• Beliefs re illness influence behavior (medicine taking, prevention, health service utilization)

• Although they may appear “quaint” in isolation, there is a logic to cultural beliefs about illness.

Asthma projects among Asthma projects among Native Americans/Alaska NativesNative Americans/Alaska Natives

Specific aims were to:

Investigate perceptions of asthma and its treatment among families with asthmatic children;

Identify health care utilization patterns for wheeze and asthma in these two groups;

Identify any differences in presentation of asthma;

Investigate potential differences in labeling of respiratory symptoms among health care providers.

Funded by NIAID.

II. Epidemiologic methods and II. Epidemiologic methods and research on asthmaresearch on asthma

Worldwide variation in Worldwide variation in asthma symptoms,13-14 yrsasthma symptoms,13-14 yrs

Wheeze past yr. Ever asthma

Africa 11.7% 10.2%

Asia-Pacific 8.0% 9.4%

Latin America 16.9% 13.4%

North America 24.2% 16.5%

Northern Europe 9.2% 4.4%

ISAAC Steering Committee Eur Resp J 1998;12:315-335

Main technique for studying Main technique for studying prevalence: Survey interviewsprevalence: Survey interviews

• Questionnaire with short questions: Yes/no, fill in the blank

– In the past year, did your child have a cough without a cold?

– How often did your child wheeze in the past year: Never, 1-3 times, 4-7 times, 8-12 times, etc.

• Questions asked in a standardized way, same order

But,But, cultural and linguistic cultural and linguistic factors affect survey findingsfactors affect survey findings

• How question is asked influences answers

• Appropriate terms in local language may have different connotations, so questions may not really be standardized in different languages

• Classification and reporting of symptoms varies cross-culturally

Example: Ways to refer to Example: Ways to refer to asthma in Navajoasthma in Navajo

Dine ch’eeh didziih

Person with difficulty he breathes

Dine anazhil

Person cannot breathe out

Dine biyol bich’i’ anahoot’i’

Person his breath toward it a problem extends

Dine biyi’ hoo diits’a’go nididzih

Person internally a sound comes when he breathes

Navajo taxonomy of Navajo taxonomy of “Respiratory problems”“Respiratory problems”

Hayol bich’i’ ana hootsi’

One’s breath A problem extends to it

“Colds” “Allergy”

Dikos T’aa doole’e hojoola

Something doesn’t agree with you

Dikos Dikos nitsaa Ajoolaii

Common colds Large colds Allergy

Asthma Asthma Asthma

Survey: Assumes shared Survey: Assumes shared understandingsunderstandings

“What medicines do you take for your asthma?”

Assumes:

Shared understanding of “asthma”

Shared understanding of “medicine”

Shared health philosophy

Example: High blood pressure Example: High blood pressure among African Americansamong African Americans

• Medical condition: “Hypertension”– Chronic, imperceptible disease– Genetic and lifestyle risk factors– Consistent taking of medicines regardless of symptoms

• Folk illness: “High blood”– Intermittent condition that can be felt by the patient– Associated with stress– Take medicine when feel stressed

Alternate approach: Alternate approach: Ethnographic InterviewsEthnographic Interviews

• Goal: to reproduce cultural reality as it is perceived, lived by members of a society

• Semi-structured, open-ended

– Start with “grand tour” question (“Tell me about your health problems, asthma.”)

– Use list of topics to cover which can encompass symptoms, attitudes, behaviors

• Analyzed for themes

How ethnographic interviews How ethnographic interviews differ from surveysdiffer from surveys

• Survey

– Starts with the conceptual categories of the researcher

– Follows a set order

– Asks the same questions in the same way

• Ethnographic interview

– Respondent defines the terms, the domain of thought

– Follows the respondent’s logic

– Questions, sequence modified based on responses, terms used

Summary: Pros and cons of Summary: Pros and cons of ethnographic interviewsethnographic interviews

• Advantages– In depth understanding of an issue that is consistent with

how it is perceived by a particular group– Uses respondents’ language, categories– Helps understand the logic of behavior

• Disadvantages– Time consuming to conduct, analyze– Difficult to compare across studies– Some standardization essential to assessing prevalence

Bottom line on epidemiologic Bottom line on epidemiologic methods and asthma researchmethods and asthma research

• While surveys provide standardized information, they may not accurately reflect actual prevalence or perceptions of the population.

• The optimal approach is to use both qualitative and quantitative approaches in the study of asthma.

III. Investigating cultural influences III. Investigating cultural influences on asthma perceptions and on asthma perceptions and

behaviors among Native behaviors among Native Americans/Alaska NativesAmericans/Alaska Natives

A. Work with the Navajo (AZ/NM)

B. Work with the Yup’ik (Alaska)

The Navajo study: MethodsThe Navajo study: Methods

• Semi-structured, open-ended ethnographic interviews– List of topics

• History of illness• Significant episodes of asthma• Management and prevention• Reasons behind patterns of medication use

• Conducted in English or Navajo

• Tape recorded and transcribed, analyzed for themes• 30 families with one asthmatic child, 5 elders

Van Sickle and Wright, Pediatrics, 2001; 108(1)/e11

Definition of asthma for Definition of asthma for Navajo respondentsNavajo respondents

• Asthma is an acute illness, with attacks considered temporary episodes resulting from mechanical obstruction of the airways.

• Traditional belief: asthma brought upon a person who is vulnerable after some unfortunate event or violation.

• Regarded by Navajo elders as a mechanical symptom of an underlying spiritual disorder

• Asthma is often feared, because of the unpredictable, erratic nature of symptoms and apparent lack of control.

Explanatory models: Explanatory models: Systematic way to elicit health beliefs Systematic way to elicit health beliefs

about a particular illnessabout a particular illness

• General and specific beliefs about:– Cause of condition – Timing and triggers – Pathophysiology – Course and prognosis of the disease– Treatment efficacy and side effects

CausesCauses of asthma cited of asthma cited (n=29)(n=29)

Heredity 11

Environment: Air pollution 9

Local environment 6 Weather 4 Uranium exposures 4 Atmosphere/stuff in air 2 Occupational exposures 2 Wood smoke 1

Traditional violations/change in traditional lifestyle 4

Individual characteristics:

Lung infection or insult 7

Diet 4

Weight 3

Prematurity/birth defects 4

Individual constitution 3

Not taking care of oneself 2

Lack of exercise 2

Other (medications, low 3 immune system)

Common beliefs about the Common beliefs about the pathophysiologypathophysiology of asthma of asthma

• Involves mechanical obstruction of the lungs, through constriction of air passages or production of mucous

• Respondents spoke of “losing their breath” or “running out of breath” to describe this situation.

• Related to infections and allergies

Perceived Perceived prognosisprognosis

• Most parents (70%) believed their children would “outgrow” asthma, and most felt the illness was improving

• Adults less optimistic about their disease: 14% expressed concern that they might die from the disease

• Personalized: Asthma history, course and prognosis, and thus optimal management varies among individuals.

TreatmentTreatment: Percent using : Percent using traditional healing practicestraditional healing practices

• Herbs only 5% (1)

• Prayer and herbs 10% (2)

• Traditional ceremonies 25% (5)

Several different ceremonies attended

“Do you think the traditional way . . . helps in a different way than medications would from the doctor?”

“I think so. Like mentally and spiritually. You know, the medicine man tells you that you have these problems, and- when you go to a physician they don’t diagnose those things. So to me, it is important to do, like prayers, protection ceremonies and all these things.”

Hozho: Key concept in Navajo Hozho: Key concept in Navajo philosophy of healthphilosophy of health

• Health results from Hozho (“harmony”) with the natural, social and spiritual worlds

• Disease is defined in terms of causes, not symptoms

• Causes involve breach of taboo, exposure to powerful and malevolent forces

• Viruses and bacteria can be agents, but they only affect (spiritually) vulnerable individuals

• Only religious rituals that restore harmony can cure illness, although symptoms may be reduced with medicines

Treatment: Medication use Treatment: Medication use (n=39)(n=39)

“Rescue meds” (bronchodilators) 71%

Controller meds:

Inhaled steroids 23%

Inhaled anti-inflammatories 11%

“Inhalers” (unspecified) 36%

Nebulizers 7%

Oral or nasal steroids 4%

Other 11%

Summary: Navajo beliefs and Summary: Navajo beliefs and use of asthma meds (1)use of asthma meds (1)

• Controller meds distinguished from rescue medications. But:

– Preventive medications thought to work like rescue meds– Effectiveness of controller medications harder to evaluate

• Each inhaler thought to offer unique formulation which is more or less compatible with a particular individual’s constitution

• Perception that use of medications delays body’s own healing

• Concern about dependency: 59% tried to endure episodes without medicines, to “teach” their body to handle the symptoms

Summary: Navajo beliefs and Summary: Navajo beliefs and use of asthma meds (2)use of asthma meds (2)

• Severe attacks: the standard against which current symptoms are measured to judge when meds should be started.

• “Breathing treatments” (nebulized medicines) given in the ER perceived as the strongest and most effective medicine

• Child is responsible for his/her medicine taking

– 81% of children <18 years old (n=35) had primary responsibility for taking their own medications

– Responsibility began at a very young age (i.e. 3 years)

Is asthma under-treatedIs asthma under-treated in this population? in this population?

• Relatively severe symptoms reported

– Cyanosis reported by 7% of respondents

• Fear of death in significant proportion of respondents

• Small percentage of asthmatics on anti-inflammatory medications

Use of health care Use of health care services for asthmaservices for asthma

Number of emergency room visits:* None 8 (21%)One 6 (16%)Multiple 24 (63%)

Hospitalizations for asthma:** None 16 (49%)One 7 (21%)Multiple 10 (30%)

(Information available on *38, **33)

Patient beliefs and behaviors Patient beliefs and behaviors contribute to under-treatmentcontribute to under-treatment

• Hesitancy to take meds in absence of symptoms as body needs to heal itself; try to wean from meds to see if asthma goes away

• Fear of dependency on medication

• Severe attacks are the “standard” against which current symptoms are measured

• Nebulized meds in ER considered most effective treatment

• Medication use can’t cure the disease

These beliefs result in delay in use of medications during acute attack.

Clinical implications of Navajo Clinical implications of Navajo beliefs about asthma medsbeliefs about asthma meds

• Children must be involved in treatment discussions

• The fear of dependency, and of reducing body’s ability to heal itself, must be addressed

• Although preventive medications recognized as distinct, their efficacy is difficult to measure

• Discuss problems associated with trying to “wean” from medications

• Use of peak flow meters could provide objective assessment of severity of attack

The Yup’ik study The Yup’ik study

• Purpose: To identify cultural factors influencing presentation and treatment of asthma among Yup’ik children with asthma

• Approach:

– Ethnographic interviews with ~60 asthmatic families

– Medical record review to assess visits for wheezing,

diagnoses, medicines prescribed, co-morbidity (allergy, GE)

– Ethnographic interviews with health care providers

Respiratory health and Respiratory health and treatment among the Yup’iktreatment among the Yup’ik

• Published epidemiology of respiratory illness:

– Very high rates of respiratory illness in all ages

– Highest rates of documented RSV infection in the world

– ~10% of children have bronchiectasis, though virtually unknown among children in the industrialized world

• Structural issues:

– Village based health care that relies on lay health workers

– Use of term “reactive airways disease” by some MDs

Yup’ik philosophy of healthYup’ik philosophy of health

• Less well articulated than the Navajo

• Ritual cycle organized around the spirits of animals they hunted and fished rather than health

• Steam has cultural salience and is commonly prescribed for respiratory ailments

Causes of asthma Causes of asthma reported by Yup’ik familiesreported by Yup’ik families

Heredity 55% Mold 28%

Dust 48% Smoking 25%

Colds / infections 45% Childhood LRI 25%

Allergies 44% Smoke 25%

Cold air 36% Fumes 22%

Passive smoke 33% Wood smoke 19%

Pollution 30% Exercise 13%Vehicle exhaust 13%

Yup’ik beliefs about asthmaYup’ik beliefs about asthma

• Often denied by patients identified as asthmatic by MDs

• Thought to be less serious than pneumonia

• Main reason to see MD for wheezing: fever

• Children expected to grow out of the disease

Wind, Van Sickle, Wright Soc Sci Med 2004

Medication useMedication use

• Inhaled steroids (ICS) only prescribed for 38% of asthmatic children; only 30% of those who were hospitalized for asthma

• Bronchodilators, antibiotics prescribed for all but one child

• Controller medicines not available at village level

Kurzius-Spencer et al. Pediatr Pulmonology 2005

Yup’ik perceptions of asthma Yup’ik perceptions of asthma medicationsmedications

• Most families own a nebulizer, used for any respiratory illness in any family member

• Fear of dependency on the medications

• Moral identity as physically fit, able to engage in subsistence activities

• Sports, exercise thought to develop lungs

Record reviews suggest different Record reviews suggest different asthma presentation for Yup’ikasthma presentation for Yup’ik

• Very high numbers of LRIs: 1.9 episodes/child year of follow-up

• Mean 3.4 visits for respiratory symptoms/child year (2.3 visits/child year for wheeze)

• 50% of these asthmatic children have chronic lung disease (CLD)

• Relatively low percentage (57%) with allergy

Does the altered presentation Does the altered presentation influence treatment for asthma?influence treatment for asthma?

• CLD (not allergy) associated with more visits for wheeze, asthma and LRI

• Allergic children more likely to receive inhaled corticosteroids (ICS) than children without allergy.

• CLD children less likely to receive ICS despite higher incidence of hospitalization, unless they also had allergy.

CLD: CLD: asthma morbidity & asthma morbidity & severity but not steroid useseverity but not steroid use

% hospitalized mean ICS Rx/Yr

CLD Allergic (19) 52.6 .51

Non-allergic (10) 50.0 .07

Total (29) 51.7 .36

No CLD

Allergic (14) 14.3 .10

Non-allergic (15) 20.0 .07

Total (29) 17.2 .09

Kurzius-Spencer et al. Pediatr Pulmonology 2005

Rx for asthma influenced by Rx for asthma influenced by presentation presentation

• While chronic lung disease (CLD) is the main predictor of asthma morbidity among the Yup’ik, allergy is more strongly associated with prescriptions for inhaled steroids

• Suggests physician behavior influenced by whether asthma is accompanied by allergy

Summary (1): Cultural influences on Summary (1): Cultural influences on asthma researchasthma research

• Culturally defined beliefs influence the data we collect on asthma prevalence

• Culturally defined behaviors influence what treatments asthma patients pursue

• Ideal strategy: combine qualitative and quantitative methods in assessing prevalence

Summary (2): Asthma presentation in Summary (2): Asthma presentation in Native Americans/Alaska NativesNative Americans/Alaska Natives

• Morbidity due to asthma and other respiratory conditions is significant among Native Americans/Alaska Natives

• The presentation of asthma may differ among certain Native American/Alaska Native (NA/AN) groups

Summary (3): Cultural influences on Summary (3): Cultural influences on asthma treatment in NA/ANasthma treatment in NA/AN

• Both traditional and biomedical concepts are used to explain asthma among NA/AN asthmatics

• Asthma appears to be under-treated in both communities studied

• Patient beliefs and behaviors contribute to the under-use of asthma medications

• Physician beliefs and behavior also contribute to low use of meds.