Transcript No Slide Title

Cross-cultural Issues in
Research and Treatment of
Respiratory Conditions
Anne L. Wright, PhD
Arizona Respiratory Center
The Department of Pediatrics
The University of Arizona
Tucson, Arizona, USA
Outline of today’s talk
I. Overview: What is culture?
II. Cultural influences in research
III. Cultural influences on health beliefs and behaviors
IV. Native American/Alaska Native perceptions of
asthma
– Asthma among the Navajo
– Asthma among the Yup’ik
I. Overview
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)
• Cultural beliefs: arbitrary; based on core, normative values
• Individuals vary in acceptance of cultural beliefs
• Culture influences illness beliefs and behaviors.
Main cultures in the Southwest
Tohono O’Odham
Yaqui
Apache
Navajo
Mexican American
Alternative, New Age
II. Cultural influences on
research
Worldwide variation in
asthma symptoms,13-14 yrs
Wheeze past yr.
Africa
Asia-Pacific
Latin America
North America
Northern Europe
11.7%
8.0%
16.9%
24.2%
9.2%
Ever asthma
10.2%
9.4%
13.4%
16.5%
4.4%
ISAAC Steering Committee Eur Resp J 1998;12:315-335
Main technique for studying
prevalence: 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, cultural and linguistic
issues affect survey findings
• How question is phrased 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 crossculturally
– Example: fallen fontanelle syndrome (“caida de la
mollera”)
Survey: shared assumptions
“What medicines do you take for your asthma?”
Assumes:
Shared understanding of “asthma”
Shared understanding of “medicine”
Shared health philosophy
Example: High blood pressure
among 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:
Ethnographic 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
differ from surveys
• Survey
– Starts with the conceptual categories of the researcher
– Follows a set order
– Asks the same questions in the same way
• Ethnographic interviews
– Respondent defines the terms, the domain of thought
– Follow the respondent’s logic
– Questions, sequence modified based on responses, terms
used
Summary: Pros and cons of
ethnographic 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
III. Cultural influences on
health beliefs and behaviors
Culture influences
illness 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.
Hozho (“harmony”): Key concept
in Navajo philosophy of health
• Health results from 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
Investigating cultural influences
on asthma perceptions and
behaviors among Native
Americans/Alaska Natives
• Two projects:
1. Navajo (SW US) 1997 - 1998
2. Yup’ik (Alaska) 1999 - 2001
Asthma projects among
Native 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.
1. The 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
Ways to refer to asthma in
Navajo
Dine
ch’eeh
didziih
Person
with difficulty
he breathes
Dine
anazhil
Person cannot breathe out
bich’i’
anahoot’i’
Dine
biyol
Person
his breath toward it
Dine
biyi’
Person
internally a sound comes when
a problem extends
hoo diits’a’go
nididzih
he breathes
Navajo taxonomy of
“Respiratory problems”
Hayol
One’s breath
bich’i’ ana hootsi’
A problem extends to it
“Colds”
Dikos
“Allergy”
T’aa doole’e hojoola
Something doesn’t agree with you
Dikos
Dikos nitsaa
Ajoolaii
Common colds
Asthma
Large colds
Asthma
Allergy
Asthma
Definition of asthma for
Navajo 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
Asthma symptoms reported by
Navajo respondents
Difficulty breathing/can’t breathe*
Nocturnal symptoms
Wheeze
Cough
Lack of energy, lethargy
Chest tightness/congestion
Shortness of breath/gasping for air
Allergy symptoms (itchy eyes, eczema)
Throat tightness/soreness
Cyanosis/blue skin or lips
56%
35%
35%
28%
28%
23%
19%
16%
12%
7%
Explanatory models: Systematic
way to elicit health beliefs
• General and specific beliefs about:
– Cause of condition
– Timing and triggers
– Pathophysiology
– Course and prognosis of the disease
– Treatment efficacy and side effects
Cause: Number citing specific
causes of asthma (n=29)
Heredity
Environment: Air pollution
Local environment
Weather
Uranium exposures
Atmosphere/stuff in air
Occupational exposures
Wood smoke
11
9
6
4
4
2
2
1
Traditional violations/change in
traditional lifestyle
4
Individual characteristics:
Lung infection or insult
Diet
Weight
Prematurity/birth defects
Individual constitution
Not taking care of oneself
Lack of exercise
Other (medications, low
immune system)
7
4
3
4
3
2
2
3
Common beliefs about the
pathophysiology 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 prognosis
• 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.
Treatment: Percent using
traditional 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.”
Treatment: Use of health care
services for asthma
Number of emergency room visits:*
None
One
Multiple
8 (21%)
6 (16%)
24 (63%)
Hospitalizations for asthma:**
None
One
Multiple
16 (49%)
7 (21%)
10 (30%)
Percents calculated on the basis of the asthmatics for whom information
was available. *n=38, **n=33
Treatment: Medication use (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%
Cultural issues re use of
asthma medications (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
Cultural issues re use of
asthma medications (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-treated
in this population?
• Relatively severe symptoms reported
• Fear of death in significant proportion of respondents
• Extensive use of emergency department for acute care
• Extremely high rates of hospital admission for asthma
• Small percentage of asthmatics on anti-inflammatory
medications
Anti-inflammatory (AI) use in
populations of asthmatics
36.9% mild; 47.3% moderate, 56.8% of severe asthmatics in a
California HMO (Jatulis et al. 1998)
23.5% of children who presented at an Indianapolis ED for
asthma (Leickly et al. 1998)
5.3% in a school-based study among inner city asthmatics in
Baltimore (Eggleston et al. 1998)
Patient beliefs and behaviors
contribute to under-treatment
• Hesitancy to take meds in absence of symptoms as body must
be allowed to heal itself; try to wean from meds to see if asthma
has gone 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
beliefs 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
Asthma among Alaska Natives
• Earlier study examined the prevalence of asthma among two
American Indian and Alaska Native (AI/AN) middle school
populations
• Used two indicators for asthma prevalence
– symptoms
– diagnosis
Stout et al. Public Health Rep 2001 Jan-Feb;116(1):51-7
Methods:
Stout et al. data collection
• ISAAC -- internationally validated video and written survey
– designed to compare prevalence worldwide
– mitigate language and translation issues
– 25 written questions - modified for regional use
– 5 video scenarios
• 13 year old children contacted through schools in three towns
in the Yukon-Kuskokwim Delta region of Alaska (n=452), and in
Tacoma, Washington (n=159)
Asthma diagnoses; clinic visits
Metro WA Rural AK
N = 159
N = 452
18.8%
8.4%
OR
(95% CI)
Ever diagnosed with asthma
2.53
(1.45 – 4.42)
Ever had asthma
19.5%
10.8%
2.00
(1.18 – 3.41)
0.97
Respiratory visit past 12 mos.*
25.6%
26.2%
(0.63 – 1.50)
*In the last 12 months, approximately how many times did you go
to the doctor / ER / village health aid for wheezing, dry cough
and/or breathing difficulties?
Stout results: Summary
• Similar reported prevalence of respiratory symptoms, visits
• Metro WA sample twice as likely to report MD asthma
diagnosis and “ever had asthma”
• Among respiratory visitors, Metro WA sample 2.8x more
likely to report “ever had asthma;” 4.5x more likely to
report MD diagnosis
• Suggested that prevalence of asthma may depend on:
– Diagnostic behaviors of physicians
– Differential health care utilization
– Cultural perceptions of illness
2. 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
treatment 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 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
reported by Yup’ik families
Heredity
Dust
Colds / infections
Allergies
Cold air
Passive smoke
Pollution
55%
48%
45%
44%
36%
33%
30%
Mold
Smoking
Childhood LRI
Smoke
Fumes
Wood smoke
Exercise
Vehicle exhaust
28%
25%
25%
25%
22%
19%
13%
13%
Yup’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
Yup’ik perceptions of asthma
medications
• 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
asthma presentation for Yup’ik
• Extremely 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
• Relatively low percentage (57%) with allergy
• Question: Does the altered presentation influence treatment for
asthma?
Medication use
• Inhaled steroids 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
• While CLD is the main predictor of asthma morbidity among the
Yup’ik, allergy is more strongly associated with prescriptions for
inhaled steroids.
CLD:  asthma morbidity,
severity but not steroid use
• CLD
Allergic
Non-allergic
Total
% hospitalized
52.6
50.5
51.7
%inhaled steroids
.51
.07
.36
Allergic
Non-allergic
Total
14.3
20.0
17.2
.18
.03
.10
• No CLD
Kurzius-Spencer et al. Pediatr Pulmonology, In press
Summary and Conclusions
• Morbidity due to asthma and other respiratory conditions is
significant among Native Americans/Alaska Natives
• Both traditional and biomedical concepts are used to explain
asthma among Native American asthmatics
• Asthma appears to be under-treated in both communities
• Patient beliefs and behaviors contribute to the under-use of
asthma medications
• Physician behavior also contributes to low use of meds.