Cross-Cultural Issues in Asthma Research and Treatment

1. Anne L. Wright, PhD Arizona Respiratory Center The Department of Pediatrics The University of Arizona Tucson, Arizona, USA Cross-Cultural Issues in Asthma Research and Treatment

2. Outline 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

3. I. Overview

4. 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.

5. 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.

6. 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.

7. 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.

8. II. Epidemiologic methods and research on asthma

9. Worldwide variation in asthma 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

10. 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

11. But, cultural and linguistic factors 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

12. Example: Ways to refer to asthma 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

13. Navajo taxonomy of “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

14. Survey: Assumes shared understandings “What medicines do you take for your asthma?” Assumes: Shared understanding of “asthma” Shared understanding of “medicine” Shared health philosophy

15. 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

16. 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

17. 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 interview • Respondent defines the terms, the domain of thought • Follows the respondent’s logic • Questions, sequence modified based on responses, terms used

18. 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

19. Bottom line on epidemiologic methods 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.

20. III. Investigating cultural influences on asthma perceptions and behaviors among Native Americans/Alaska Natives • Work with the Navajo (AZ/NM) • Work with the Yup’ik (Alaska)

22. 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

23. 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.

24. Explanatory models: Systematic way to elicit health beliefs about 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

25. 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) Causes of asthma cited (n=29)

26. 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

27. 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.

28. Treatment: Percent using traditional healing practices • Herbs only 5% (1) • Prayer and herbs 10% (2) • Traditional ceremonies 25% (5) Several different ceremonies attended

29. “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.”

30. Hozho: Key concept in Navajo philosophy 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

31. 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%

32. Summary: Navajo beliefs and 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

33. Summary: Navajo beliefs and 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)

34. Is asthma under-treated 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

35. Use of health care services 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)

36. Patient beliefs and behaviors contribute 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.

37. 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

40. 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

41. 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

42. 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

43. Causes of asthma reported 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%

44. 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

45. Medication 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

46. 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

47. Record reviews suggest different asthma 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

48. Does the altered presentation 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.

49. CLD:  asthma morbidity & severity 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

50. Rx for asthma influenced by 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