Developing Diversity-Oriented Qualitative Research in Community Health Care Settings

Developing Diversity-Oriented Qualitative

Research in Community Health Care Settings

Developing Diversity-Oriented Qualitative

Research in Community Health Care Settings

Kell Julliard, MALutheran Medical Center

Brooklyn, New York

Qualitative Research Methodology

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

Differences from quantitativeDifferences 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

Theoretical ApproachesTheoretical Approaches

• Grounded theory

• Ethnography

• Phenomenology

Grounded theoryGrounded theory

• Primary purpose: generate theories of human behavior

• Theory emerges from what subjects do and say

Methods of Data GatheringMethods of Data Gathering

• Observation/field notes

• Interviews

• Key informants

• Focus groups

InterviewsInterviews

• Flexible and powerful tool

• Three main types: Structured, Semi-structured, and In-depth

• Structured– Structured questionnaire asked by trained

interviewers in standard manner

InterviewsInterviews• 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

InterviewsInterviews

• Good open ended questions assess– Behavior or experience– Opinion or belief– Feelings– Knowledge– Demographic information

Key informantsKey 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

Focus GroupsFocus 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

Qualitative data analysisQualitative data analysis

• Consists of– Data reduction– Data display– Conclusion drawing and verification

Data ReductionData 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

Conclusion drawing/VerificationConclusion 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

Comparison with quantitative analysis

Comparison with quantitative analysis

• Data reduction = Computing means, standard deviations

• Data display = tables, graphs, charts

• Conclusion = p values, experimental and control group differences

HispanicChineseWhiteBlackTwo or more

99,598 people in Sunset Park (2010 census)

99,598 people in Sunset Park (2010 census)

• All studies reported here were presented at national meetings and published

• Only one study received outside funding

Health needs assessment of the Chinese Population

in Sunset Park from a holistic perspective

Health needs assessment of the Chinese Population

in Sunset Park from a holistic perspective

Khin Kyaw Kyaw Thein, MD, Kyaw Thuya Zaw, MD, Rui-Er Teng, MD, Celia Liang, DO,

Kell Julliard, ATR-BC

Team CompositionTeam Composition

• Two MD volunteers seeking residency

• Two Chinese Family Medicine residents needing to fulfill research requirement

• Qualitative researcher (KJ)

Resources neededResources needed

• Time for carrying out study

• A variety of IT reports

• Administrative support in identifying key informants, interviewees

IntroductionIntroduction

• 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.

• 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

Introduction (cont.)Introduction (cont.)

MethodsMethods• 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.

Methods (Cont.)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.

Many SP Chinese Are PoorMany SP Chinese Are Poor

ResultsResultsThe 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

Physical Health Outpatients – Adults

Physical Health Outpatients – 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)

Physical Health (Cont.)Top Causes of Death

Physical Health (Cont.)Top Causes of Death

• Heart disease

• Cancer

• Stroke

• Chronic lower respiratory disease (smoking)

• Influenza and pneumonia

Mental HealthMental 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

Social Health Environment

Social Health Environment

• Overcrowding (C)

• Theft (C)

• Gambling (C)

• Prostitution (C)

• Dirty streets (C)

• Teenage gangs (C)

• School absenteeism, dropouts (C)

Social Health (Cont.)Work

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)

Social Health (Cont.)Family

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

Social Health (Cont.) Family

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)

Spiritual IssuesSpiritual 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)

Health-seeking behaviorsHealth-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)

LimitationsLimitations• 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.

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.

RecommendationsRecommendations

What Latina Patients Don’t Tell Their Doctors:

A Qualitative Study

What Latina Patients Don’t Tell Their Doctors:

A Qualitative StudyC. 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

Team CompositionTeam 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)

Patient DisclosurePatient 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

GoalGoal

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

MethodsMethods

• 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

InterviewsInterviews

• 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

Qualitative Data AnalysisQualitative 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

ResultsResults

• 28 interviews: 6 major themes emerged– Physician-patient relationship– Language barriers– Sensitive issues– Culture differences– Gender and age differences – Time constraints

Physician-Patient RelationshipPhysician-Patient Relationship

– 26 participants commented on this theme:– Qualities of compassion and Caring

• Domestic violence, Death issues, Fertility

– Respect and communication skills• Decreased confidence in their doctors• Lied about real symptoms• Couldn’t trust physician with intimate details

Language BarriersLanguage Barriers

– 23 participants commented on this theme– Physician didn’t speak Spanish

• Patient couldn’t explain needs• Patient couldn’t understand instructions

– Use of translators– Physician didn’t speak understandably

• Patient felt inadequate, found help elsewhere

Sensitive IssuesSensitive Issues

– 20 participants mentioned this theme– Sex, sexuality and genital problems

• Lied about PAP tests, genital problems

– Reproductive issues• Fertility, abortions, STD’s

– Violence, abuse and Drugs• Afraid of the repercussions, the law

CultureCulture

– 19 participants mentioned this theme– Own cultural beliefs and practice

• Sex isn’t discussed in public• Family problems stay in the family

– Doctors’ cultural beliefs• Attitudes not conducive to trust• Judgmental attitudes : STD’s, Abortions

Gender and Age DifferencesGender and Age Differences

– 13 participants mentioned this theme– Age of the physician was less common

• Sexuality issues - embarrassing

– Gender of the physician more common• Won’t talk about sex with male physician• Won’t talk about reproductive issues• Don’t want to be examined by males

Time ConstraintsTime Constraints

– 7 participants commented on this theme– Visits are too short– Hindered development of doctor/patient

relationship– Uncomfortable with their physicians– Doctors cut them off– Don’t listen to their needs– Patients use limited time to hide information

Health Assessment of the Arab American Community

in Southwest Brooklyn

Health Assessment of the Arab American Community

in Southwest Brooklyn

Kell Julliard, Linda Sarsour, Virginia Tong, Omar Jaber, and Mohammed Talbi

Arab American Association of New York Lutheran HealthCareBrooklyn, New York

Team CompositionTeam Composition

• Member of AAANY staff

• VP for cultural comptence

• Health center Arabic liaison

• Arabic college student

• Qualitative researcher (KJ)

Community PartnersCommunity Partners

• Arab American Association of New York

• New York City Council – modest funding

• Lutheran Medical Center

• Lutheran Family Health Centers

ResourcesResources

• Health access, status, and demographic survey created jointly between AAANY and health center

• AAANY provided staff to conduct survey and organized presence at events

• Health center provided research/survey expertise, training in qualitative and structured survey interviewing, support in scanning survey, data analysis, writing and presenting

IntroductionIntroduction

• “Racial and ethnic minorities tend to receive a lower quality of health care than non-minorities, even when access-related factors, such as a patient’s insurance status and income are controlled.” – Smedley et al, 2002

• Arab Americans – part of this low-income group not receiving appropriate health care?

ACCESS surveys suggestACCESS surveys suggest

• high prevalence of chronic diseases

• underuse of health services

• limited preventive health practices

• ACCESS = Arab Community Center for Economic and Social Services

In the Arab worldIn the Arab world

• Life expectancy – – 62.6 years for men – 65.2 years for women

• About 10 years less than for US adults

ObjectiveObjective

• To gather basic demographic information about the Arab American community in Brooklyn

• To assess members’ perceptions of health status, needs, behaviors, and access to services

Such a survey could provideSuch a survey could provide

• Direction for implementing changes in the health care system

• More culturally competent care for this population

• Improved access to care

• Better planning and evaluation of service programs specific to Arab Americans

Lutheran HealthCare

Lutheran Medical CenterLutheran Family Health Centers

• Arabic-speaking bilingual bicultural staff

• Arab patient representative• Free interpretation services• Halal meals available• Onsite Mosque• Signage and written

documents in Arabic• Imam on call service

MethodsMethods

• Study designed and implemented through a collaborative partnership:

• Arab American Association of New York (AAANY)

• Lutheran HealthCare (LHC)

SurveySurvey

l Written in English

l Translated into Arabic by AAANY

l Respondents could be interviewed in either language

ImplementationImplementation

l Survey conducted in April and May of 2008

l Interviewers trained in non-biased techniques

l Participants interviewed individually

l At Arab community gathering places in southwest Brooklyn

l Convenience sample

Survey respondentsSurvey respondents

• 348 respondents– 200 women– 148 men

• Reflected southwest Brooklyn• Most frequent countries of immigration:

Egypt, Yemen, Morocco, Palestine• 88% Muslim• 92% primarily spoke Arabic at home• 56% moved to US before 2000

• 58% chose health care venue based on language

• The rate of poverty– 42% in this sample of Arab Americans– 16% in southwest Brooklyn overall

• No health insurance– 37% who moved to US after 1999– 21% who moved to US 1999 and before

• Almost half of respondents never exercised

Percentage uninsured Percentage uninsured

l 28% of this sample of Arab Americans

l 22% of immigrants in New York City overall

l 18% of New York City overall

l 18% of Brooklyn overall

l 13% of Southwest Brooklyn overall

24

36

201926

16 17

3130

12

21

010203040

Foreign-born US-born

Foreign-Born vs. US-Born Adults Rating Their Health Status

Fair/Poor

Total

Hispanic

Asian

White

Arab overall

Black

42

22

28

21

0

5

10

15

20

25

30

35

40

45

Per

cen

tage

Living in Poverty Uninsured

Comparison of Arab Americans with NYC Overall

Arab-AmericansNew York City

Employment (p < 0.001)Employment (p < 0.001)

Men Women59% employed full time 8%

17% employed part time 10%

17% unemployed 28%

1% homemakers 45%

42

25

21 2017

0

5

10

15

20

25

30

35

40

45

Percen

ta

ge

Smoker

Smoking in Arab Men vs. Immigrant Men in NYC

ArabRussianMexicanChineseJamaican

DiscussionDiscussion

l Compared to other immigrant men and Arab American women in NYC our findings suggest that Arab men in Southwest Brooklyn have a much higher rate of smoking.

l Survey assessed cigarette smoking. Numbers of other forms of smoking could be much higher – e.g., hookah smoking.

• The health impact of smoking and poverty on the Arab American community in Southwest Brooklyn is cause for concern.

• Future research should quantify these issues more precisely so that effective programs can be designed and funded.

Parental attitudes on feeding, oral hygiene, and dental treatment of children in the Chinese population

with Early Childhood Caries- A Qualitative Research Project

Parental attitudes on feeding, oral hygiene, and dental treatment of children in the Chinese population

with Early Childhood Caries- A Qualitative Research Project

Diane Wong, D.D.S, Silvia Perez-Spiess and Kell Julliard

Lutheran Medical Center, Brooklyn, New York

Team CompositionTeam Composition

• Pediatric Dentistry resident needing to fulfill research requirement

• Experienced pediatric dentist

• Qualitative researcher (KJ)

IntroductionIntroduction

• Many Chinese children in dental clinic had multiple carious teeth, were diagnosed with Early Childhood Caries (ECC).

• Some received dental treatment under general anesthesia or sedation because extensive treatment needed or were uncooperative.

• Cultural beliefs and attitudes may affect the development and progression of this problem.

ObjectiveObjective

• To learn about the Chinese parents’ unique perspective regarding Early Childhood Caries in their children.

• Parents encouraged to share their views regarding oral hygiene habits, cultural beliefs, and attitudes towards dental treatment.

• Findings will enable providers to have better understanding and be able to provide more culturally sensitive care.

MethodsMethods

• Individual interviews with parents • Sample - 20 parents and one grandparent• Each one-hour interview tape-recorded and later transcribed. • Interviews conducted in child’s home or hospital depending

on the parents’ preference. • Cantonese, Mandarin, or English language used during the

interview. • Each parent - small monetary gift along with toothbrushes

and toothpaste.• Interview guide covered oral hygiene and habits, parental

attitudes on dental problems, and cultural beliefs regarding dental treatment.

Results – Negative ThemesResults – Negative Themes

• Fears of dental anesthesia, lack of social support in seeking dental treatment, inadequate knowledge of good oral hygiene and habits, and cultural beliefs that do not support the practice of preserving a healthy primary dentition– Parents think that general anesthesia will negatively affect

the development of the child’s brain.– Grandparents scold the parents for allowing their children

to have surgery simply to fix baby teeth. – Parents often do not brush their children’s teeth regularly

because they did not do so as children.– Friends shocked when see that parents allowed multiple

extractions to be done at once. They feel that these procedures are bad for the child.

Positive themes Positive themes

• Trust in the providers, satisfaction with outcome of dental treatment, and improved understanding of oral health.– Parents feel that technology in the Western world is more

advanced than in China. They are glad that their children received this dental treatment efficiently in the hospital.

– Although many parents use Chinese herbal remedies to address their own dental problems, they most often turn to Western medicine when their children need treatment.

– Parents accepted the recommendations given to them by the dentists and they feel that it is important to free their children from dental caries and pain, and maintaining oral health is essential.

ConclusionsConclusions

• Many parents unaware of optimal oral hygiene habits and feeding habits partially because they grew up in a time and place where the society and culture that did not focus on preservation of the primary dentition.

• Although many parents expressed fear and concern as their children were in the process of receiving dental care, the majority felt that they had made the right decision in proceeding with the treatment regardless of other people’s negative opinions.

• The society including friends, family members, and community bring negative influences to these parents.

• Healthcare providers can now anticipate what beliefs common to this community, can better recognize problems and begin intervention at earlier stage.

Recommendations to dental healthcare providers

Recommendations to dental healthcare providers

• Provide education (written, verbal or visual) to parents and caregivers on the importance of preserving and maintaining a healthy primary dentition in preferred language.

• Understand the parent’s cultural beliefs and backgrounds.

• Reassure parents of the benefits that treatment will provide for primary and permanent dentition.

• Maintain the importance of good oral hygiene, good diet, and regular recall visits.

• Educate Chinese community in general

Our ways of sharing findings of qualitative studies

Our ways of sharing findings of qualitative studies

• Annual health system-wide research fair

• Departmental conferences

• Online newsletter

• Task force meetings

• Summaries circulated by administration

• National and regional conferences

Tips for training interviewersTips for training interviewers

• Schedule dedicated training time

• Explain principles

• Opportunity for role playing

• Simulate actual interview set-up

Tips for Publishing FindingsTips for Publishing Findings

• Pick journal ahead of time

• Design study in a way similar to those previously published in journal– Medical journals: theoretical model for

research not so important– Academic and social science-oriented

journals: require a specific model

THANK YOU!THANK YOU!