Developing Diversity-Oriented Qualitative Research in Community Health Care Settings

1. Developing Diversity-Oriented Qualitative Research in Community Health Care Settings Kell Julliard, MALutheran Medical Center Brooklyn, New York

2. Qualitative Research Methodology Makes sense of human experience Describes and explains social and cultural influences Develops explanatory theories Explores human-oriented problems about which little is known

3. Differences from quantitative Quantitative: randomized controlled trials testing a new drug, cohort studies assessing risk factors Qualitative: Hypothesis not clear at beginning Means of data collection may change as learning occurs Few numbers/percentages reported Stop when quit learning new info Researcher enters subjects’ world

4. Theoretical Approaches Grounded theory Ethnography Phenomenology

5. Grounded theory Primary purpose: generate theories of human behavior Theory emerges from what subjects do and say

6. Methods of Data Gathering Observation/field notes Interviews Key informants Focus groups

7. Interviews Flexible and powerful tool Three main types: Structured, Semi-structured, and In-depth Structured Structured questionnaire asked by trained interviewers in standard manner

8. Interviews Good for sensitive topics where need for confidentiality and trust are paramount Semi-structured Open-ended questions that define area to be explored In-depth One or two issues covered in detail Questions are based on interviewees’ reply Various ways of recording interviews Notes written at the time or afterwards Audio or video taping

9. Interviews Good open ended questions assess Behavior or experience Opinion or belief Feelings Knowledge Demographic information

10. Key informants A person residing in the community Considered by community members to be knowledgeable on topic Willing to share this information Each informant identifies other informants

11. Focus Groups Relatively homogenous groups Individuals share ideas about a topic Purpose: produce honest disclosure – individuals need to build trust quickly so that their sharing stimulates agreement, disagreement, richness of information Size typically 7 to 10 members More than one focus group usually planned to obtain diversity of opinion What is said in the groups is transcribed and analyzed

12. Qualitative data analysis Consists of Data reduction Data display Conclusion drawing and verification

13. Data Reduction Identify themes in data Compare and contrast data from each theme Draw conclusions Data display: explanatory diagrams, flow charts, causal networks, tables of themes with supporting quotes

14. Conclusion drawing/Verification Note regularities, patterns, explanations, causal factors, and propositions Maintain openness and skepticism Conclusions become clearer as study progresses Test meanings for validity as you go

15. Comparison with quantitative analysis Data reduction = Computing means, standard deviations Data display = tables, graphs, charts Conclusion = p values, experimental and control group differences

17. 99,598 people in Sunset Park (2010 census)

23. All studies reported here were presented at national meetings and published • Only one study received outside funding

24. Health needs assessment of the Chinese Population in Sunset Parkfrom a holistic perspective Khin Kyaw Kyaw Thein, MD, Kyaw Thuya Zaw, MD, Rui-Er Teng, MD, Celia Liang, DO, Kell Julliard, ATR-BC

25. Team Composition • Two MD volunteers seeking residency • Two Chinese Family Medicine residents needing to fulfill research requirement • Qualitative researcher (KJ)

26. Resources needed • Time for carrying out study • A variety of IT reports • Administrative support in identifying key informants, interviewees

27. Introduction • Growing emphasis on cultural competence in health care delivery • SP- bottom 10 of NY neighborhoods • Chinese - 25% of Sunset Park residents • Access to health care for Chinese people is lower than those of other ethnic groups. • Even in the Chinese, disparities exist based on their income, immigration status, social classes, and place of birth.

28. Introduction (cont.) • Purpose - to identify the health needs of the CPSP from a holistic perspective-physical, social, mental, and spiritual points of view. • 3 parts of the main study: (1) Perception of health needs by Chinese community members (2) Comments on health related issues by health professionals and community leaders (3) Information from electronic databases

29. Methods • Information from Electronic Databases • LMC – electronic billing data • Infoshare Online • New York City Department of Health and Mental Hygiene • Epidemiology Query Survey data • Asain American Federation of New York • Interviews and FGD with LHC physicians, key administrators and clinicians within LHC system, representatives from BCAA, CPC, American Cancer Society.

30. Methods (Cont.) • One-on-one interview in Cantonese and Mandarin with Chinese community members: • Total 37 interviews at FHC, private clinics, school, interviewees’ homes, and public places such as restaurants and department stores • Interviewees: 15 to 76 yr, elderly, working age men and women, and an adolescent, living in US from 3 to 20 years and in Sunset Park, 5 months to 20 years.

31. Many SP Chinese Are Poor

32. Results • The combined results from three parts of the study: • D = Information from electronic databases • P = Information from health professional and community leaders • C = Information from community members • Order of presentation includes: • Physical Health • Mental Health • Social Health • Spiritual Health • Health Seeking Behaviors • Health Needs

33. Physical HealthOutpatients – Adults • Normal pregnancy (D) • Hypertension (P, C, D) • Diabetes (P, C, D) • Heart disease (P, C, D) • TB (P, C) • Hepatitis B (P, C) • Peptic ulcer disease (P, D) • Smoking – mostly men (P, C)

34. Physical Health(Cont.)Top Causes of Death • Heart disease • Cancer • Stroke • Chronic lower respiratory disease (smoking) • Influenza and pneumonia

35. Mental Health • Is a stigma, so do not discuss (P, C) • Depression (P, C) • Somatization (P) – detection low • High stress (C) • Anxiety (C) • Schizophrenia (C) – high visibility

36. Social HealthEnvironment • Overcrowding (C) • Theft (C) • Gambling (C) • Prostitution (C) • Dirty streets (C) • Teenage gangs (C) • School absenteeism, dropouts (C)

37. Social Health (Cont.)Work • Long working hours (C) • Much manual labor (C, D) • Low pay (C) • Lack of job security (C) • Poor work environment (C) • Lack of health insurance (P, C) • Language barriers (C)

38. Social Health (Cont.)Family • Conflicts over money • Parents lack time to care for children • One parent may work out of state – Child HealthPlus only available in NY • Infants sent to China until school age (P, C) • Cost of childcare higher in US • Lack of family time together

39. Social Health (Cont.)Family • Children lack supervision • Children lose their Chinese language, culture & tradition – leading to: • Growing cultural gap between generations (P, C) • Miscommunications to no no communication between generations • Because of language problems, parents rely on children for translation • Conflict with in-laws • No consensus on whether the elderly isolated or not (P, C)

40. Spiritual Issues • Most do not have religious or social support (C) • Christianity (young) and Buddhism (elderly) – main religions (C) • Traditional practices during holidays (C) • Many believe spirituality influences health (C)

41. Health-seeking behaviors • Preferred western medicine or combined traditional and western (P, C) • Believe antibiotics cure almost all illnesses (P) • Buy antibiotics OTC • Noncompliant with doctors’ advice (P) • Undocumented immigrants don’t seek care – afraid of being reported (P) • Seeking services depends on if they have health insurance (P, C)

42. Limitations • A small study, not representative of the entire CPSP. • Subjected to individual’s experience and knowledge. • No funding. No incentives for interviewees. • Difficulty to find interviewees who are willing to volunteer their time. • Limited time. • Some Electronic Data – not recent.

43. Recommendations • Need more Chinese speaking health care professionals, especially psychiatric and social services provided in a culturally sensitive way. • More education regarding Western health care via Chinese pamphlets, public lectures, health fairs or newspapers. • Free screenings. • Health professionals also need to be aware of the community members’ beliefs regarding Western medicine versus TCM so that they can better understand them. • Poverty creates many social and physical health problems – difficult to solve.

44. What Latina Patients Don’t Tell Their Doctors: A Qualitative Study C. Delgado, DO, E. Cruz, MD, J. Vivar MD, J Bellask, H Sabers, and K. Julliard, MA Family Medicine, Internal Medicine, and the Department of Community-Based Programs Lutheran Medical Center 2007

45. Team Composition • One MD volunteer seeking research experience • Two residents needing to fulfill research requirement – one Internal Medicine, one Family Medicine • Community services support staff member • Medical student • Qualitative researcher (KJ)

46. Patient Disclosure • Treatment and health affected by what patient chooses to disclose to physician • Culture and gender play important role in what patients disclose • General reasons for nondisclosure in Latina women are not well understood

47. Goal • To better understand factors contributing to nondisclosure of medical information by Latina patients to their doctors

48. Methods • Participants • Hispanic women living in Sunset Park • Informed consent obtained • Age 18 years old and older • Primarily clients using services of our Family Support Center

49. Interviews • In-depth one-on-one interviews • Trained bilingual interviewers • Semi-structured interview guide • Based on Sankar and Jones format • Interviews lasted 30-60 minutes • $25.00 payment for participating

50. Qualitative Data Analysis • Data = transcribed interviews • Analyzed using a grounded theory approach (theory emerges from data) • Interviewers and authors read transcripts of all interviews and discussed each one • Themes emerged from interview data • Themes were codified into a coherent list