Developing DiversityOriented Qualitative
Research in Community
Health Care Settings
Kell Julliard, MA
Lutheran Medical Center
Brooklyn, New York
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 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 Approaches
• Grounded theory
• Ethnography
• Phenomenology
Grounded theory
• Primary purpose: generate theories of
human behavior
• Theory emerges from what subjects do
and say
Methods of Data Gathering
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Observation/field notes
Interviews
Key informants
Focus groups
Interviews
• Flexible and powerful tool
• Three main types: Structured, Semistructured, and In-depth
• Structured
– Structured questionnaire asked by trained
interviewers in standard manner
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
Interviews
• Good open ended questions assess
– Behavior or experience
– Opinion or belief
– Feelings
– Knowledge
– Demographic information
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
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
Qualitative data analysis
• Consists of
– Data reduction
– Data display
– Conclusion drawing and verification
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
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
Comparison with
quantitative analysis
• Data reduction = Computing means,
standard deviations
• Data display = tables, graphs, charts
• Conclusion = p values, experimental and
control group differences
99,598 people in Sunset Park
(2010 census)
Hispanic
Chinese
White
Black
Two or more
• 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
Khin Kyaw Kyaw Thein, MD, Kyaw Thuya Zaw, MD, Rui-Er
Teng, MD, Celia Liang, DO,
Kell Julliard, ATR-BC
Team Composition
• Two MD volunteers seeking residency
• Two Chinese Family Medicine residents
needing to fulfill research requirement
• Qualitative researcher (KJ)
Resources needed
• Time for carrying out study
• A variety of IT reports
• Administrative support in identifying key
informants, interviewees
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.
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
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.
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 Poor
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
Physical Health
Outpatients – Adults
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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
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•
•
•
Heart disease
Cancer
Stroke
Chronic lower respiratory disease
(smoking)
• Influenza and pneumonia
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
Social Health
Environment
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•
•
•
•
•
•
Overcrowding (C)
Theft (C)
Gambling (C)
Prostitution (C)
Dirty streets (C)
Teenage gangs (C)
School absenteeism, dropouts (C)
Social Health (Cont.)
Work
•
•
•
•
•
•
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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
• 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
• 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 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 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)
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.
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.
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
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)
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
Goal
• To better understand factors contributing
to nondisclosure of medical information by
Latina patients to their doctors
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
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
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
Results
• 28 interviews: 6 major themes emerged
– Physician-patient relationship
– Language barriers
– Sensitive issues
– Culture differences
– Gender and age differences
– Time constraints
Physician-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 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 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
Culture
– 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 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 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
Kell Julliard, Linda Sarsour, Virginia Tong,
Omar Jaber, and Mohammed Talbi
Arab American Association of New York
Lutheran HealthCare
Brooklyn, New York
Team Composition
•
•
•
•
•
Member of AAANY staff
VP for cultural comptence
Health center Arabic liaison
Arabic college student
Qualitative researcher (KJ)
Community Partners
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•
•
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Arab American Association of New York
New York City Council – modest funding
Lutheran Medical Center
Lutheran Family Health Centers
Resources
• 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
Introduction
• “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 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 world
• Life expectancy –
– 62.6 years for men
– 65.2 years for women
• About 10 years less than for US adults
Objective
• 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 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 Center
Lutheran 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
Methods
• Study designed and implemented through
a collaborative partnership:
• Arab American Association of New York
(AAANY)
• Lutheran HealthCare (LHC)
Survey
l Written in English
l Translated into Arabic by AAANY
l Respondents could be interviewed in
either language
Implementation
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 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
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
Foreign-Born vs. US-Born Adults
Rating Their Health Status
Fair/Poor
40
30
20
10
0
36
24
26
2019
3130
16
21
17
12
Total
Hispanic
Asian
White
Arab overall
Black
Foreign-born
US-born
Comparison of Arab Americans
with NYC Overall
45
42
40
35
28
Percentage
30
25
22
21
20
Arab-Americans
New York City
15
10
5
0
Living in Poverty
Uninsured
Employment (p < 0.001)
Men
59%
17%
17%
1%
Women
employed full time
employed part time
unemployed
homemakers
8%
10%
28%
45%
Smoking in Arab Men vs. Immigrant Men in
NYC
45
42
40
35
Percentage
30
25
25
21
20
20
17
15
10
5
0
Smoker
Arab
Russian
Mexican
Chinese
Jamaican
Discussion
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
Diane Wong, D.D.S, Silvia Perez-Spiess and
Kell Julliard
Lutheran Medical Center, Brooklyn, New York
Team Composition
• Pediatric Dentistry resident needing to
fulfill research requirement
• Experienced pediatric dentist
• Qualitative
researcher (KJ)
Introduction
• 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.
Objective
• 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.
Methods
• 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 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
• 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.
Conclusions
• 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
• 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
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Annual health system-wide research fair
Departmental conferences
Online newsletter
Task force meetings
Summaries circulated by administration
National and regional conferences
Tips for training interviewers
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Schedule dedicated training time
Explain principles
Opportunity for role playing
Simulate actual interview set-up
Tips 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!