1. 1 Using Qualitative Methods In Health Disparities Research Anna Nápoles, Ph.D. Center for Aging in Diverse Communities Division of General Internal Medicine May 21, 2009

2. 2 Objectives MIXED METHODS APPLICATIONS u Refine frameworks, concepts u Develop measures u Develop intervention

3. What is the Role of Qualitative Research? 3

4. Understanding Disparities: Moving Research into the Community Qualitative research: u Identify how research methods may need to be tailored u Identify mechanisms of disparities u Welcomes community engagement 4

5. a 5 OUTCOME What’s in the Black Box?

6. Deconstructing Markers 6

7. 7 When are Qualitative Methods Used? u Open-ended interviews typically used in new areas of study u Useful for in-depth knowledge about issues, especially in less studied groups u Especially critical in cross-cultural studies due to lack of information

8. 8 What are Qualitative Methods? u Data consist of words, not numbers u Richly descriptive, open-ended u Focus on inductive analytic approaches u Many types: ethnography, participant- observation, direct observation, focus groups, in-depth interviews

9. 9 Combining Qualitative and Quantitative Methods u Prior to quantitative: to develop concepts, framework, hypotheses, and content for structured survey items or interventions u After quantitative: –to help identify reasons for survey items not performing well quantitatively –to explore possible explanations for unexpected results

10. 10 Sampling in Qualitative Research u Purposive, nonprobabilistic u Deliberately select settings, persons or events to best answer research questions

11. 11 Goals of Purposeful Sampling u Achieve representative, typical settings, individuals, or activities u Set up contrasts to examine differences between settings or individuals (Maxwell JA. Sage Publications, Inc., 1996)

12. 1. Refining a Conceptual Framework 12

13. 13 Meaning of Events Richness of Qualitative Data Contextual Influences on Behavior Processes Underlying Observed Relationships

14. 14 In-depth Individual Interviews u Semi-structured, open-ended u Capture complexity u Interactions of individuals with their environments

15. 15 In-depth Interviews (cont.) u Advantages –useful for areas with little prior work –allow for detailed exploration of relationships, phenomenon, esp. sensitive topics –Can easily revise questions to clarify issues raised in earlier interviews

16. 16 In-depth Interviews (cont.) u Disadvantages –fewer participants –less able to address generalizability –less theory driven, less confirmatory

17. 17 In-Depth Interviews to Expand Framework u Similar employment rates among low-income families with and without special needs children (1996 US Census Bureau) u Conclude child care systems adequately meeting needs of special needs u Qual interviews - enormous strain on family relations, scarce programs, working nights, high turnover (Sunhua L. 2002)

18. Asking the Right Questions u NOT: Are you currently: working FT, working PT, disabled, looking for work, etc. u BUT: How has your current work situation affected your family? 18

19. Revised Framework Child with special needs 19 Employment status of parents Financial strain Stress Family functioning Resources Job instability Original Framework

20. 2. Developing Measures of Concepts

21. 21 Focus Groups u Open-ended guided group discussion with probing of responses u Led by experienced moderator; usually 1 - 2 hours u Purposeful sampling of 6-10 homogenous participants per group u Participants stimulate comments of others u Audio-record and transcribe discussion

22. 22 Focus Groups-Logistics u Moderator skills: listening, communication, negotiation, cultural similarity to participants u Costs of group: $600 - $1000 per group (incentives, audio-taping, transcription, translation, food) u Convenient and hospitable community setting u In-person recruitment works best with telephone/mail reminders

23. 23 Focus Groups u Advantages –group stimulates fruitful discussion –spontaneity leads to discovery of new issues and factors u Disadvantages: scheduling, skilled moderator, group setting may be inappropriate

24. 24 Example: Measures of Cultural Sensitivity of Clinicians u Conducted 19 focus groups with 163 participants u 61 African Americans, 45 Latinos and 55 non-Latino Whites u What do or don’t your doctors understand about your culture or health beliefs?

25. 25 Identify Themes (Codes): How Culture Might Affect Health Care and Outcomes u CAM u Discrimination u Doctor Culture u Ethnicity of MD u Family u Immigration u Language u Modesty u Nutrition u Patient submissiveness u Spirituality

26. 26 Define Domains of Each Cultural Sensitivity Domain: CAM u Definition: MD’s knowledge and acceptance of non-Western, non- biomedical, holistic approaches to health or healing “When I told her I was on estrogen, it was refreshing to hear suggestions about alternative types of herbal treatments.” AA woman > 50

27. 27 Develop Items Based on Definition and Wording Used by Participants Over the past 12 months, how often did doctors…..ask if you would be interested in hearing more about alternative types of herbal treatments? (CAM domain)

28. 28 Reducing Item Pool u Criteria: –maintain breadth of concept, multiple items/concept –reduce redundancy (but OK to test alternate versions of items) –eliminate items that are unclear, complex, lack face validity, or will not translate well

29. Cognitive Interviews to Pretest Measures 29

30. 30 Cognitive Interviews u Derived from social and cognitive psychology to explore processes respondents use to answer survey questions u Diagnostic tool for pretesting survey questions

31. 31 Purpose of Cognitive Interviews To learn … u if respondents understand words and phrases as intended (meaning) u about the process of answering the questions u whether items are unacceptable u about the usefulness of response choices

32. 32 Writing Probe Questions u From reduced set of items, select potentially problematic items for pretesting u Write open-ended scripted probe questions –worded to reveal if suspected problem with a specific item is present

33. 33 Types of Cognitive Probes u General –Tell me what you were thinking when you answered that question –How easy or difficult was it to answer that question? Why? u Explore meaning of word or phrase –I asked you how often doctors take a genuine interest in you. What does the phrase “genuine interest” mean to you?

34. 34 Types of Cognitive Probes (cont.) u Retrieval –How did you remember that? u Judgment –Why did you pick that number for your answer? u Response –Do you think that most people answer this question honestly? Collins D. Quality of Life Research 2003. 12:229-38.

35. 35 Types of Cognitive Probes (cont.) u Redundancy –How is the phrase “give you advice about your diet and exercise” different from the phrase “talk to you about your diet and exercise”? u Acceptability –When I asked you how often you felt discriminated against by doctors because of your race or ethnicity, you answered (read answer given). Were you offended by this question?

36. 36 Types of Cognitive Probes (cont.) u Cultural appropriateness –I asked you how often doctors asked you about your health beliefs? What does the term ‘health beliefs’ mean to you?

37. 37 Sampling for Cognitive Interviews u Usually do not use representative samples u Include respondents from major segments of population to be sampled for main survey u Approximately 5-15 interviews/group, but may involve several rounds

38. 38 Recruiting for Cognitive Interviews u Explain how their help fits into larger study, process of creating questions u Explain their role clearly: –“help us learn how to ask better questions” –“help us make questions clearer for others” –“help us to identify problems with questions” u Pay subjects $25 - $50, interview is demanding u If survey is long, pretest different sections on different subjects

39. 39 Conducting Cognitive Interviews u Individual face-to-face, in-depth interviews u Standard administration of closed-ended items u Administer probe questions at the end (or concurrently) u Typically 1 hr interview u Each interview audiotaped and transcribed

40. 40 Data Analysis of Cognitive Interviews u Create summary of most significant problems: –Annotated questionnaire: use electronic version of survey to enter comments for each item directly under each question –Aggregate item-by-item comments over multiple interviews

41. 41 Content Analysis of Items and Probes u Using qualitative analysis software, review all dialogue during standard administration of closed-ended items and open-ended probes –can reveal source of problems –can help in deciding whether to keep, modify or drop items u Allows you to examine dialogue by item –within groups –across groups/languages

42. 42 Example of Results: Unclear Phrase Original item: Have you had any medical tests or procedures in past year? –26% of respondents asked for clarification Probe: What did you include as medical tests or procedures? u Medical test or procedures unclear (e.g., asked if it included dental or cosmetic procedures) u Item revised to include examples: –Have you had any medical tests or procedures, such as blood tests, x-rays, or cancer screening tests?

43. 43 Example of Results: Interpreting the Question Original item: How satisfied are you with the amount of stress or worries in your life? Probe: Did you answer this question in terms of stress, worries, or both? u AA and Spanish-speakers - tended to answer in terms of worries u Revised item –How satisfied are you with the amount of worries in your life? Warnecke RB, et al. JNCI Monographs No. 20, 1996; 29-38.

44. 44 Pretesting in Diverse Populations u Greatest problems are with question interpretation - simplify u Sometimes English concepts not meaningful in other languages or meaning varies across groups u Response sets can also be problematic

45. 45 Advantages of Cognitive Interviews u Identifies where responses might be affected by cultural or group experiences u Suggests ways to revise items, responses u Improves validity of questions

46. 46 Disadvantages of Cognitive Interviews u Flags problems, but significance of the problem is a subjective judgment –When do you need to revise or drop items? u Based on small number of respondents u Time and labor intensive

47. 3. Developing Interventions to Reduce Disparities 47

48. How did I get here? 48 Source: http://www.ahrq.gov/clinic/3rduspstf/behavior/fig2shell.htm

49. 49 Themes for Designing Peer Support Intervention Project Aims  Identify barriers to and benefits of psychosocial health services  Preferred mode for intervention  Preferred intervention content

50. Mixed Methods to Develop Interventions 50

51. Themes u Informational needs u Early intervention u Fear of impending death u Peer support u Powerlessness u Role of family u Spirituality u Advocacy u Difficulty expressing feelings, needs u Cultural congruence u Trust building 51

52. Implications for Peer Intervention u Low-literacy cancer info in Spanish u Early case identification u Emotional support u Dispel myths u Peer-delivered u Engage family in providing support 52

53. Implications for Peer Intervention (cont.) u Advocate for patient u CBT u Client activation u Cultural congruence of peer and client u Develop trust over time, multiple personal contacts 53

54. 54

55. 55 Content Analysis of Qualitative Interviews u Use qualitative analysis software to review and code transcripts u Allows you to examine codes and their frequencies: –within groups or individuals –across groups or individuals –sorted by research interest/questions, e.g. ethnic differences, specialists vs. generalists

56. 56 Coding of Transcripts u Directly interpret individual remarks/instances u Aggregate instances into categories and analytically define category or class u Search for patterns-consistencies and inconsistencies u Can manually code in margins of transcripts

57. 57 Manuscript Preparation u Describe unit of analysis u Describe and define codes-these can be categories/classes, processes, behaviors u Provide illustrative quotes u Can provide frequencies of number of units coded for each category

58. 58 Manuscript Preparation u Report consistencies and inconsistencies u Organize themes or codes into higher, interrelated level of analysis and abstraction - framework

59. 59 Manuscript Preparation Describe strategies for validating conclusions: multiple coders, deductive and inductive approaches, triangulate findings across methods or sources, verified by participants, attention to negative cases

60. 60 Limitations of Qualitative Methods u Small number of respondents limits generalizability u Time and labor intensive analyses

61. 61 Advantages u Very rich and detailed u Unstructured aspects allows for on-the- spot probing u Can creatively explore potential hypotheses

62. 62 Conclusions: Usefulness of Qualitative Methods u VITAL to health disparities research u INSIGHTS into relevant frameworks, questions, themes, constructs, items u EXPANDS our conceptual models of mechanisms of disparities-identify unanticipated factors

63. 63 “How-To” Resources u Ward H, Atkins J. From their lives: a manual on how to conduct focus groups of low-income parents. Institute for Child and Family Policy, Edmund S. Muskie School of Public Health, University of Southern Maine, 2002: http://muskie.usm.maine.edu/focusgroupmanual/manu al.htm http://muskie.usm.maine.edu/focusgroupmanual/manu al.htm u Kruegar RA, Casey MA. Focus Groups: A Practical Guide for Applied Research, 3rd ed. Thousand Oaks, CA: Sage Publications, Inc., 2002.

64. Grant Applications Qualitative Methods in Health Research: Opportunities and Considerations in Application and Review OBSSR, NIH http://obssr.od.nih.gov/pdf/Qualitative.pdf 64

65. 65 Nature of Qualitative Data u Exploratory, descriptive u Identify unanticipated phenomena and influences u Generate hypotheses about processes underlying observed relationships