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 E ve r d ia g n o s e d w ith a s th m a M e tro W A N = 159 R u ra l A K N = 452 OR (9 5 % C I) 1 8 .8 % 8 .4 % 2 .5 3 (1 .4 5 – 4 .4 2 ) E ve r h a d a s th m a 1 9 .5 % 1 0 .8 % 2 .0 0 (1 .1 8 – 3 .4 1 ) R e s p ira to ry vis it p a s t 1 2 m o s .* 2 5 .6 % 2 6 .2 % 0 .9 7 (0 .6 3 – 1 .5 0 ) *In th e la s t 1 2 m o n th s , a p p ro xim a te ly h o w m a n y tim e s d id yo u g o to th e d o c to r / E R / villa g e h e a lth a id fo r w h e e z in g , d ry c o u g h a n d /o r b re a th in g d iffic u ltie s ? 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.