Content uploaded by Gem Le
Author content
All content in this area was uploaded by Gem Le on Mar 15, 2018
Content may be subject to copyright.
Experiences and Perceptions of Medical Discrimination
Among a Multiethnic Sample of Breast Cancer Patients in
the Greater San Francisco Bay Area, California
Thu Quach, PhD, MPH, Amani Nuru-Jeter, PhD, MPH, Pagan Morris, MPH, Laura Allen, BA, Sarah J. Shema, MS,
June K. Winters, BA, Gem M. Le, PhD, MHS, and Scarlett Lin Gomez, PhD
Breast cancer is the cancer most commonly
diagnosed among women in the United States.
1
Racial/ethnic disparities in the survivorship
experience, including diagnosis, treatment,
quality-of-life, and survival, have been docu-
mented.
2---5
For example, breast cancer survival
differences between African Americans and
non-Hispanic Whites are among the most
striking and consistent of health disparities.
1
Research also suggests that certain racial/eth-
nic groups like African Americans, Latinas, and
Asians are more likely to be diagnosed with
late-stage disease.
6---9
However, prognostic fac-
tors including socioeconomic status, access to
care, and biological factors, to the extent that
they have been examined, do not fully explain
the observed differences.
10
Research frame-
works encompassing a multilevel framework
that considers the interactions among social
and biological factors, within a historical and
ecological perspective (i.e., a socio-ecological
framework
11
) are needed to examine underly-
ing institutional and societal forces that con-
tribute to health disparities.
12
There has been a growing interest in exam-
ining health impacts from discrimination,
13
the
process by which members of a defined social
group are treated unfairly because of their
membership in that group.
14
For example,
studies have suggested that racial minorities
receive fewer referrals for specialty services
and poorer quality health care than Whites,
after controlling for a number of confounders
including socioeconomic status, gender, age,
health insurance, and stage of illness.
15---17
Studies suggest that some of this may be the
result of provider prejudice and medical mis-
trust on the part of the patient.
15,16 ,18
At least 3 pathways have been proposed
by which discrimination may impact health.
First, discrimination can lead to socioeco-
nomic inequities, which can affect health (e.g.,
compromising access to care and quality of
care and causing disproportionate environ-
mental exposures to toxins). Second, discrimi-
nation can increase chronic stress. Chronic and
severe social stress trigger the stress-response
system, activating adaptive physiologic mecha-
nisms, which, over time, degrades the body’s
ability to properly regulate biological systems,
resulting in adverse health consequences.
19,20
Increasingly, studies have shown that exposure
to racial discrimination is associated with nu-
merous physiological disturbances,
21
including
overcirculation of stress hormones,
22
which,
among other outcomes, is linked to an un-
inhibited inflammatory response.
23
Chronic
inflammation has been associated with breast
cancer recurrence and mortality.
24
Third, discrimination can restrict access to
goods and services. Discrimination experienced
in health care settings may inadvertently in-
fluence individuals to avoid using needed
health care.
25
The psychological model of
stigma-induced identity threat posits that an
individual who has experienced discrimination
that threatens his or her identity will have
involuntary responses (e.g., anxiety and vigi-
lance).
26
In turn, the individual may engage in
a variety of voluntary coping mechanisms,
including engagement (i.e., fight) or disengage-
ment (i.e., flight) strategies. In accordance with
the disengagement strategy, an individual who
has experienced discrimination may avoid
mainstream institutions, such as the health care
system, where they fear they may be discrim-
inated against. African Americans, Latinos, and
Asians have been found to report more medi-
cal mistrust
27
and provider discrimination,
which is associated with lower satisfaction with
Objectives. We conducted qualitative interviews with breast cancer survivors
to identify themes related to institutional, personally mediated, and internalized
discrimination in the medical setting.
Methods. We conducted 7 focus groups and 23 one-on-one interviews with
a multiethnic sample of breast cancer survivors randomly selected from a pop-
ulation-based registry covering the Greater San Francisco Bay Area, California.
Results. Participants reported experiencing different forms of medical dis-
crimination related to class, race, and language. Among African Americans,
participants reported experiencing internalized discrimination and personal or
group discrimination discrepancy—perceiving discrimination against them as
a racial/ethnic group, yet not perceiving or discussing personal experiences of
discrimination. Among Asian immigrants, participants reported experiencing
institutional and personally mediated overt types of discrimination, including
lack of access to quality and readily available translation services. Our results
also indicated well-established coping mechanisms in response to discrimina-
tion experiences in both groups.
Conclusions. Participants reported experiencing medical discrimination at
all 3 levels, which may have deleterious health effects through the biopsy-
chosocial stress pathway and through active coping mechanisms that could
lead to delayed- or underutilization of the health care system to avoid dis-
crimination. (Am J Public Health. 2012;102:1027–1034. doi:10.2105/AJPH.2011.
300554)
THE SCIENCE OF RESEARCH ON RACIAL/ETHNIC DISCRIMINATION AND HEALTH
May 2012, Vol 102, No. 5 |American Journal of Public Health Quach et al. |Peer Reviewed |Research and Practice |1027
care
28,29
and delayed health utilization.
30
Some studies have found an association among
perceived discrimination, screening mammog-
raphy,
31,32
and health care utilization.
33,34
As
mentioned previously, discrimination may also
restrict health care services because of provider
bias and differences in referral for specialty
services.
16,18
Whereas there is growing research on the
subject of whether discrimination influences
health,
21,35---42
few studies have investigated
the link between discrimination and breast
cancer,
43
although plausible links are evident.
To our knowledge, no studies have investigated
the extent of medical discrimination among
breast cancer patients.
We applied a multilevel concept of discrim-
ination based on Jones’
44
3-level framework
for understanding racism, in which institution-
alized racism is defined as the structural and
differential access to goods, services, and op-
portunities within a society; personally mediated
racism encompasses differential assumptions
about and actions toward others on the basis of
race; and internalized racism is the acceptance
of negative assumptions about their own abil-
ities and worth by members of the stigmatized
group. The intent of this qualitative research
was to explore experiences of medical dis-
crimination among breast cancer patients that
would inform future research aimed at un-
derstanding the impact of discrimination on
breast cancer outcomes.
METHODS
We examined qualitative data from one
component of a larger, mixed-methods study of
breast cancer patients. With the purpose of
generating hypotheses about how racial/ethnic
discrimination might impact breast cancer ex-
perience, we conducted 7 focus groups and 23
one-on-one interviews with a multiethnic sam-
ple of breast cancer patients to derive themes
on medical discrimination in the context of
their diagnoses, treatments, and follow-up ex-
aminations. We conducted both types of inter-
views because we wanted to take into consid-
eration the fact that some patients might feel
more comfortable relaying information in a
one-on-one setting, whereas others would be
more comfortable in a group context. Fur-
thermore, data from one-on-one interviews
generally provide more depth, whereas data
from focus groups typically provide more
breadth. Focus groups explicitly use group
interaction to elicit information sharing.
45
Samples and Data
We randomly selected female patients
through the population-based Greater Bay
Area Cancer Registry (which covers the
Greater San Francisco Bay Area in Northern
California) who were diagnosed with first
histologically confirmed primary breast can-
cer (International Classification of Disease for
Oncology,third edition [ICD-O-3]sitecodes
C50.0---50.9) between January 1, 2006, and
December 31, 2008; who were older than 20
years at diagnosis; and who resided in San
Francisco, Contra Costa, Alameda, San Mateo,
or Santa Clara county. These patients were
contacted for study participation by mail. The
overall participation rate was 20.7% for focus
groups and 31.3% for one-on-one interviews,
with African Americans having the highest
participation rates for focus groups (66.7%)
and one-on-one interviews (75.0%). Filipinas
had the lowest participation rate for focus
groups (10.3%), and Japanese had the lowest
for one-on-one interviews (21.4%). We con-
ducted 7 focus groups (n = 37 participants)
and 23 one-on-one interviews from July 21,
2008, through March 13, 2009. A total of
60 breast cancer patients participated, in-
cluding 9 African Americans, 9 non-Hispanic
Whites, 8 Latinas, 17 Chinese (Cantonese
and Mandarin speakers), 9 Japanese, and 8
other Asians (Filipinas, Vietnamese, and
Asian Indians).
Eligible cases who were selected from the
registry and who agreed to participate were
randomly assigned to a focus group or one-
on-one interview pool. Cases were recruited
from these separate pools until the study
population recruitment goal was met (3 one-
on-one interviews and 1 focus group of 6---8
participants per racial/ethnic group). With the
exception of the Chinese and Latina groups,
whose interviews were conducted in their re-
spective languages, all interviews were con-
ducted in English. Interviews were 2 hours,
audio-recorded, transcribed in-language, and
translated into English, as applicable. Partici-
pants were compensated $30 for their time and
an additional $15 for any travel required.
A female interviewer was racially/ethnically
matched to participants in African American,
Chinese, and Latina groups. Interviewers were
not ethnically/racially matched to the other
groups because of resource constraints. How-
ever, we observed no differences in depth or
length of answers between those interviews
where the interviewer and interviewee were
matched and those that were not matched.
Furthermore, our topic guide for the one-on-
one interviews and focus groups contained
essentially the same format and interview
questions. Having observed congruent re-
sponse depth, breadth, and quality, as well as
similar themes across interview methods, we
report pooled results for one-on-one and focus
group interviews.
The study protocol was approved by the
institutional review boards of the Cancer Pre-
vention Institute of California and the Califor-
nia Health and Human Services Agency.
Analysis
A semistructured interview guide was
used (Table 1). We used a combined
grounded theory and phenomenological
process for our qualitative analysis, applying
comparative analysis to identify themes
across different levels of discrimination and
across racial or ethnic groups while also
being open to the identification of additional
levels or forms of discrimination that might
not have been captured by Jones’3-level
framework.
46
The goal of the analysis was to identify core
concepts or themes related to participants’
experience with medical discrimination. We
used Jones’framework to provide structure
for organizing our results and to confirm
whether medical discrimination existed across
the 3 levels and what themes emerged within
each of the levels. At the same time, we
applied a more exploratory approach to
identify themes emerging from the data
through a phenomenological process. A team
of 5 research staff independently conducted
manual coding of each interview transcript.
We developed a codebook through an itera-
tive and interactive coding and consensus
building process and used it to identify emer-
gent themes. We also obtained input for the
emergent themes from the bilingual and
bicultural interviewers.
THE SCIENCE OF RESEARCH ON RACIAL/ETHNIC DISCRIMINATION AND HEALTH
1028 |Research and Practice |Peer Reviewed |Quach et al. American Journal of Public Health |May 2012, Vol 102, No. 5
RESULTS
Characteristics of the participants are pre-
sented in Table 2. Approximately half of the
participants were born outside of the United
States, all of whom were Latinas or Asians.
Most participants had higher educational levels,
with 75% reporting at least some college
education. Nearly all participants reported
having some form of health insurance, ranging
from private insurance to public assistance. A
total of 90% of participants were diagnosed
with early stage (I or II) breast cancer. Emer-
gent themes are summarized in Table 3 and
discussed in the following sections.
Institutionalized Discrimination
Institutionalized discrimination “represents the
processes built into social entities—governments,
bureaucracies, and culture—that reinforce...
hierarchy.”
47
This level of discrimination may
not be obvious to individuals because it requires
knowledge about certain systems or institutions
and how members of other groups are treated.
37
Economic inequities. Participants across ra-
cial/ethnic groups perceived a link between
their income status and the quality of care they
received during their diagnosis and treatment.
Participants from different income levels rea-
soned that their economic status influenced the
type of insurance they had and their ability to
pay out-of-pocket expenses, which in turn
affected their quality of care. Examples of
subpar quality of care included limited number
of medical visits, the amount of personal
contact with their providers, and access to
(perceived) prestigious medical facilities.
Ifind a huge discrimination in what healthcare
you have. That’sthefirst thing they want to
know. If your healthcare is going to pay 100% of
this then you are likely going to get better care,
more frequent visits and care. If you have out-of-
pocket expense that you can’t afford then you are
going to get a minimum of their time.
—African American participant
We don’t have money to get treated in Stanford
or other places. Good service definitely requires
good price.
—Chinese—Cantonese speaker
You can choose better doctor, expensive medical
care, but if you just have HMO, you have less
money because HMO, you know, sometimes, it’s
good only when... you are...you are healthy,
but when you are sick, they don’t care for you.
—Filipina participant
Language barriers. A number of immigrant
participants discussed how their limited
English proficiency hindered communication
with their providers and affected their care.
Language barriers were most commonly
reported among Asian immigrant participants,
primarily Chinese, Vietnamese, and Filipinas,
and less so with Latina immigrants.
In American [sic], the people who speakEnglish...
for sure will get very good care or assistance...
I am an immigrant. I am more like a foreign [sic]. If
I am a native, and my mother language is English,
I would get even better care for sure.
—Chinese—Mandarin speaker
My... English is not well. They, the doctors,
mostly speak English... the communication was
really bad... I felt the interpretation and com-
munication were really bad in the entire process.
—Chinese—Mandarin speaker
Personally Mediated Discrimination
Personally mediated discrimination refers to
direct interpersonal experiences with discrimi-
nation. Specifically, it is discrimination medi-
ated through a person or group of people
rather than an institution, or even oneself, as in
the case of internalized racism. It can be in-
tentional or unintentional and can include acts
of commission and omission.
44
The predomi-
nant emergent theme related to personally
mediated racism was provider prejudice.
Provider prejudice. Prejudice among pro-
viders emerged as a theme among African
Americans, Filipinas, and Chinese participants.
These participants described experiences in
which they felt their providers made assump-
tions based on the participants’race/ethnicity,
education, and immigrant status that compro-
mised their quality of care. The following quote
illustrates the belief that providers may un-
derestimate a patient’s ability to understand,
based on an assumption about the individual’s
educational level, and thus limit the informa-
tion they provide to patients.
I think the assumption that doctors sometimes
give is that “they won’t understand.”They think
they need to limit what they tell us because we
wouldn’t understand. So back to that question
you asked about education. Yes, they feel that we
don’t have that much education to understand
what’s going on, so they limit what they tell us.
—African American participant
Some immigrant participants described feel-
ing that they were treated with less respect
because of the provider’s assumption about
their educational level. They also described
feeling that they were regarded as “outsiders”
TABLE 1—Content of Semistructured Interview Topic Guide for One-On-One
Interviews and Focus Group Sessions with Breast Cancer Survivors: Greater San
Francisco Bay Area, CA, July 21, 2008–March 13, 2009
Topics Category
Diagnosis Diagnosis process
Experience with medical team during the diagnosis process
Treatment Communication between provider and patient regarding treatment options
Perceived choice in treatment options
Adherence to treatment
Side effects from treatment
Other sources of information on treatment options
Discrimination—medical setting Perceived discrimination experiences during the course of breast cancer
diagnosis and treatment
Possible reasons for discrimination experiences (e.g., race/ethnicity, age, English
proficiency, height, weight, education, and economic status)
Discrimination—other setting General perceived discrimination experiences (nonmedical setting)
Physical and emotional responses to discrimination experiences
Perceptions of discrimination
Coping and social support Knowledge and participation in support groups
Coping strategies and experiences
Neighborhood characteristics
Immigrant stress Immigration history
Acculturative stress
THE SCIENCE OF RESEARCH ON RACIAL/ETHNIC DISCRIMINATION AND HEALTH
May 2012, Vol 102, No. 5 |American Journal of Public Health Quach et al. |Peer Reviewed |Research and Practice |1029
because of their immigrant status and that may
also have compromised their care.
You are different. Some [providers] might treat
you as an outsider. Maybe... or they might
ignore you because of the poor communication.
—Chinese—Mandarin speaker
Internalized Discrimination
When people are discriminated against,
they may make these discriminatory beliefs
part of their self-image. In our study, we found
that participants internalized their medical
discrimination experiences as being the result
of their own inadequacies, such as limited
education, low English proficiency, and non-
compliance. These perceptions placed the re-
sponsibility of receiving quality care on the
participants themselves, and these internal-
ized beliefs were found across racial/ethnic
groups. The following quotes suggest self-
blame. Rather than expecting providers to
provide relevant information about their
condition, participants cited their own per-
ceived inadequacies.
If you don’t have enough education, you don’t
even know what to ask. Right? He also doesn’t
know what to tell you. So maybe in his mind he
would think, “You wouldn’t understand. Even if I
tell you, you wouldn’t know. Even if I explain to
you, you wouldn’t understand. So why telling
you so much?”
—Chinese—Cantonese speaker
I think what happens with a lot of African
Americans, minorities, is the lack of social com-
munication and therefore afraid to ask the
questions.
—African American participant
Still putting the onus of doctor-patient com-
munication on themselves, others cited limited
English language proficiency as a barrier to
receiving medical information.
My English is not good enough. And I don’t
communicate with them.
—Chinese—Cantonese speaker
Personal or Group Discrimination
Discrepancy
In addition to themes fitting into Jones’
3-level framework, additional themes unrelated
to the framework also emerged. Our qualita-
tive data suggest that participants seldom
reported discrimination directed at them per-
sonally, yet they readily reported discrimina-
tion directed toward their racial/ethnic group as
a whole. This personal or group discrimination
TABLE 2—Sociodemographic and Other Characteristics of Breast Cancer Participants:
Greater San Francisco Bay Area, CA, July 21, 2008–March 13, 2009
Category No. (%) or Mean (Range)
Data collection method
One-on-one interviews 23 (38.3)
Focus group 37 (61.7)
Nativity
Foreign-born 31 (51.7)
US-born 29 (48.3)
Marital status
Married 45 (75.0)
Not married (separate, divorced, widowed, and never married)
a
15 (25.0)
Educational level
£12 y or vocational or technical school
a
15 (25.0)
Some college 32 (53.3)
Postcollege 13 (21.7)
Current employment
Employed 19 (31.7)
Unemployed (student, homemaker and unemployed)
a
16 (26.7)
Retired 25 (41.7)
Insurance status
Medicare, MediCal, or uninsured
a
12 (20.3)
Medigap 19 (31.7)
Private 32 (53.3)
Years since diagnosis
1 18 (30.0)
2–3 42 (70.0)
Household annual income, $
< 30 000 15 (25.0)
30 000–59 999 9 (15.0)
60 000–79 999 5 (8.3)
‡80 000 18 (30.0)
Don’t know or refused 13 (21.6)
Stage at diagnosis
I 34 (56.7)
II 20 (33.3)
III and IV 6 (10.0)
Race/ethnicity
African American 9 (15.0)
Latina 8 (13.3)
Non-Hispanic White 9 (15.0)
Chinese—Cantonese speaker 8 (13.3)
Chinese—Mandarin speaker 9 (15.0)
Japanese 9 (15.0)
Other Asians (Filipina, Asian Indian, and Vietnamese)
a
8 (13.3)
Age at diagnosis, y
African American 63.2 (51–73)
Latina 63.6 (41–81)
Non-Hispanic White 65.6 (42–79)
Continued
THE SCIENCE OF RESEARCH ON RACIAL/ETHNIC DISCRIMINATION AND HEALTH
1030 |Research and Practice |Peer Reviewed |Quach et al. American Journal of Public Health |May 2012, Vol 102, No. 5
discrepancy
48
was most commonly referenced
among our African American participants.
I was able with this binder of his to gather
information as to what this was and how it works.
So, I think he respected the fact that I could
perhaps understand. But I do know people who
have told me whom have gone through the
treatment and they say to me, “Wow, your
doctors told you all kinds of things. My doctor
didn’t tell me any of this.”So I do know and these
are African Americans.’
—African American participant
Being Black I am always going to know people
not treated right.
—African American participant
Some explanations for this discrepancy may
include denial of personal discrimination, self-
blame, protection of self-esteem, or an unwill-
ingness to identify a perpetrator, particularly
medical providers.
39,49
Active Coping Behavior
Another theme, unrelated to Jones’frame-
work, was active coping behavior as a manage-
ment strategy. Several participants stated that
they believed minority groups must work
harder to achieve success or cope with every-
day challenges.
I believe that as an individual, you make your
own success. You may have more hoops that you
have to jump through to be successful, but I don’t
think because you’re Black, Chinese, Spanish,
that you’re stopped because you’re of a different
ethnic background.
—African American participant
Although the participant indicates that she
believed that people are responsible for their
own outcomes in life, she also acknowledged
that being “Black, Chinese, Spanish”may re-
quire one to work harder. On the one hand,
she acknowledges discrimination, albeit subtly,
but on the other hand, she minimizes the
role of discrimination in favor of a personal
responsibility argument.
Awareness of even subtle discrimination in
themedicalsettingcanleadtoanongoing
form of vigilance where the expectation of
discrimination can lead to active coping be-
haviors, such as impression management,
a process whereby one attempts to manage
the impression others have of oneself to avoid
the consequences of stereotypes and dis-
criminatory treatment.
50---52
The following
quote from an African American illustrates
positive self-presentation, a form of impres-
sion management.
My education made a vast difference in my care.
I am very educated, and I take great care of
myself. Of course it made a difference. When you
can speak their language, well-dressed so they
see that you have pride in yourself, you are
treated with a higher level of respect. I am just
being open and honest. It’s society and that’s how
it works. I do my homework.
—African American participant
DISCUSSION
Our study explored the qualitative ex-
perience of discrimination in the medical
setting among breast cancer survivors in the
Greater San Francisco Bay Area. Partici-
pants reported experiencing both implicit
and explicit discrimination consistent with
Jones’multilevel framework.
44
Themes
that we identified as consistent with this
framework were reported across racial/
ethnic groups, although the extent to which
they were reported varied across groups.
We also identified additional themes
that did not fitneatlywithinJones’
framework.
Reported medical discrimination experi-
ences were fairly subtle, yet participants
reported awareness of these more implicit
discrimination experiences. It was not un-
usual for our study participants to deny
that they were treated unequally and then
to describe experiences that were un-
equivocally consistent with poor quality
of care.
TABLE 2—Continued
Chinese—Cantonese speaker 61.3 (36–78)
Chinese—Mandarin speaker 54.3 (45–71)
Japanese 56.1 (36–84)
Other Asians (Filipina, Asian Indian, and Vietnamese)
a
57.8 (40–74)
a
Data were merged in accordance with cancer registry guidelines requiring that all cells have at least 5 counts.
TABLE 3—Emergent Medical Discrimination Themes From Interviews and Focus Groups with Breast Cancer Survivors:
Greater San Francisco Bay Area, CA, July 21, 2008–March 13, 2009
Type of Discrimination Theme
Institutionalized Economic inequities: Income is positively associated with quality of care.
Language barriers: English language proficiency influenced patient-provider communication and subsequently quality of care.
Personally mediated Provider prejudice: Providers may make assumptions about patients based on their personal prejudice regarding race/ethnicity, education, and immigrant status.
Patients believe that providers withheld information from them based on their assumptions about the patient’s limited ability to comprehend all the information.
Immigrant participants believed they were treated with less respect by providers because of their immigrant status.
Internalized Self-blame: Patients may attribute poorer quality of care or problems with their providers to their own inadequacies (e.g., language proficiency or educational level).
Other Personal and group discrimination discrepancy: Patients tend to report less on discrimination directed at the individual level yet more on discrimination
directed toward their own racial/ethnic group.
Active coping behavior: African American and Asian patients apply active coping mechanisms in which they believe they must work harder to receive optimal health care.
This behavior includes impression management strategies to present positive images of themselves to receive better care.
THE SCIENCE OF RESEARCH ON RACIAL/ETHNIC DISCRIMINATION AND HEALTH
May 2012, Vol 102, No. 5 |American Journal of Public Health Quach et al. |Peer Reviewed |Research and Practice |1031
The predominant forms of medical dis-
crimination themes in our study sample were
related to class, race, and language. Our
findings also showed striking themes that
were more predominant among African
Americans and Asian immigrants related to
blame attribution and coping behavior. Pre-
vious studies have shown that African
Americans perceive racial discrimination
from medical providers, often associated
with feelings of disrespect and cultural in-
competence.
53,54
However, we also found
that whereas African Americans perceive
medical discrimination against them as
a group, they tended to not perceive or
discuss personal experiences of discrimina-
tion.
48,49
Additionally, themes of well-
established coping mechanisms, such as
accepting the idea that one must work
harder and use positive self-presentation to
obtain optimal health care, emerged from
the data.
Our findings showed that immigrants,
mainly Asians, are exposed to multiple and
often overt forms of medical discrimination,
including lack of access and readily available
translation services. Although Asians are
often acutely aware of being the target of
differential treatment, many believe they are
“outsiders,”and this belief results in their
passive attitude and acceptance of such
mistreatment. By contrast, we did not
observestrongevidenceoflanguagedis-
crimination in Latinas. One possible reason
is there is a greater availability of Spanish-
speaking medical staff. A study of physi-
cians in California found that 26% of
primary care physicians and 22%
of specialists reported being fluent in
Spanish.
55
There were a number of common themes
across racial/ethnic groups. Class-based dis-
crimination at the institution level was
reported across racial/ethnic groups. The
concept of needing to work harder to cope
with unlevel playing fields, referred to in the
literature as “John Henryism”and typically
found in men,
56
emerged in our samples of
both African American and Asian women.
Additionally, impression management strat-
egies were used more by African American
patients and those of low socioeconomic
status.
57
Our qualitative data also suggested
personally mediated discrimination in
the form of provider prejudice among Afri-
can Americans and Asian immigrants. Per-
ceived provider discrimination has been
shown to affect self-reported quality of care
across racial/ethnic populations.
29
One
study showed that perceived medical dis-
crimination can affect adherence to recom-
mended health behavior, such as obtaining
mammography and colorectal cancer
screening, in women.
32
Experiences
with provider discrimination can lead to
future avoidance of the overall health care
system as part of a disengagement coping
strategy.
25
Limitations
Our findings should be interpreted in light
of several considerations. Although this
qualitative analysis included many of the
major racial/ethnic groups in the region, it is
limited by its small sample size within each
group. One novel aspect of this study’sdesign
is its rigorous random sampling method of
recruiting participants from a population-
based cancer registry, although participa-
tion rates were generally low, resulting in
part from the length of the interviews, lack
of language concordance for all groups
(e.g., Filipinas), generally older age of cases,
and the added difficulty of scheduling focus
groups.
Therefore, study participants may not be
representative of all newly diagnosed breast
cancer patients in the San Francisco Bay
Area with respect to socioeconomic status,
insurance status, and cancer stage. As individ-
uals of lower socioeconomic status are
more likely to be diagnosed with advanced
stage cancer, which in turn requires more
intensive medical care, our results likely
under-represent the true extent of discrimi-
nation that exists in the general patient
population.
Conclusions
Our qualitative findings of self-reported
medical discrimination experiences under-
score a need for further research into how
discrimination can impact breast cancer
patients. Overall, the impact of discrimina-
tion in the medical setting on the coordina-
tion of breast cancer care and long-term
surveillance and management warrants fur-
ther study.
The unique aspect of this study is its use
of a conceptual multilevel discrimination
framework and focus on the medical
setting. Our qualitative findings highlight
the need to incorporate both implicit and
explicit discrimination experiences
in quantitative surveys to better charac-
terize their prevalence in the medical
setting and their impact on breast cancer
outcomes. j
About the Authors
At the time of the study, Thu Quach, Pagan Morris, Laura
Allen, Sarah J. Shema, June K. Winters, Gem M. Le and
Scarlett L. Gomez were with the Cancer Prevention Institute
of California, Fremont. Amani Nuru-Jeter is with the
University of California at Berkeley School of Public Health,
Berkeley.
Correspondence should be sent to: Thu Quach, PhD,
MPH, Cancer Prevention Institute of California, 2001
Center St., Ste. 700, Berkeley, CA 94704 (thu.quach@cpic.
org). Reprints can be ordered at http://www.ajph.org by
clicking the “Reprints”link.
This article was accepted October 27, 2011.
Contributors
T. Quach led the analysis and writing of the article.
P. Morris, L. Allen, S.J. Shema, and J.K. Winters worked
on the coding of qualitative data. All authors were
involved in the identification of emergent themes
and results interpretation. G. M. Le helped in the
literature review for the emergent themes. A. Nuru-Jeter
and S. L. Gomez provided guidance on the
overall qualitative analysis and results interpreta-
tion. All authors contributed to the writing of the
article.
Acknowledgments
This project was supported by the Department of
Defense Breast Cancer Research Program (grant
W81XWH-07-1-0486). Collection of cancer inci-
dence data used in this study was supported by the
California Department of Health Services as part of
the statewide cancer reporting program mandated by
California Health and Safety Code Section 103885;
by the National Cancer Institute’s Surveillance,
Epidemiology, and End Results Program (contract
N01-PC-35136, awarded to the Northern California
Cancer Center [now the Cancer Prevention Institute
of California], and contract N02-PC-15105, awarded
to the Public Health Institute); and by the Centers
for Disease Control and Prevention National Pro-
gram of Cancer Registries (agreement no. U55/
CCR921930-02, awarded to the Public Health
Institute).
The authors thank the study participants, who were
kind enough to give us their time and trust. We thank the
study staff, including Lavetta Cross, Lei-Chun Fung, Sonja
Godfrey, Mei-Chin Kuo, Kathie Lau, Christine Lieu,
Zinnia Loya, and Elaine Ramos. We also thank our
community advisors, including Pam Priest Naeve, Car-
men Ortiz, Lei-Chun Fung, Dolores Moorehead, Pat
Davis, and Allegra Lewis. We also thank Chinatown
THE SCIENCE OF RESEARCH ON RACIAL/ETHNIC DISCRIMINATION AND HEALTH
1032 |Research and Practice |Peer Reviewed |Quach et al. American Journal of Public Health |May 2012, Vol 102, No. 5
Public Health Center for allowing us to use their facilities
for some of the focus group sessions.
Note. The ideas and opinions expressed herein are
those of the authors and endorsement by the State of
California, Department of Health Services, the National
Cancer Institute, and the Centers for Disease Control and
Prevention or their contractors and subcontractors is not
intended nor should be inferred.
Human Participant Protection
This study was reviewed and approved by institutional
review board of the Cancer Prevention Institute of
California and the California Health and Human Services
Agency.
References
1. Ries LAG, Melbert D, Krapcho M, et al. SEER Cancer
Statistics Review, 1975-2005. Bethesda, MD: National
Cancer Institute; 2008.
2. Boyer-Chammard A, Taylor TH, Anton-Culver H.
Survival differences in breast cancer among racial/ethnic
groups: a population-based study. Cancer Detect Prev.
1999;23(6):463---473.
3. Bradley CJ, Given CW, Roberts C. Race, socioeco-
nomic status, and breast cancer treatment and survival.
J Natl Cancer Inst. 2002;94(7):490---496.
4. Satariano WA, Ragland DR. The effect of comor-
bidity on 3-year survival of women with primary breast
cancer. Ann Intern Med. 1994;120(2):104---110.
5. Shavers VL, Brown ML. Racial and ethnic disparities
in the receipt of cancer treatment. J Natl Cancer Inst.
2002;94(5):334---357.
6. Clegg LX, Li FP, Hankey BF, Chu K, Edwards BK.
Cancer survival among US whites and minorities: a SEER
(Surveillance, Epidemiology, and End Results) Program
population-based study. Arch Intern Med. 2002;162
(17):1985---1993.
7. Lin SS, Clarke CA, Prehn AW, Glaser SL, West DW,
O’Malley CD. Survival differences among Asian subpopula-
tions in the United States after prostate, colorectal, breast, and
cervical carcinomas. Cancer. 2002;94(4):1175---1182.
8. Miller BA, Hankey BF, Thomas TL. Impact of
sociodemographic factors, hormone receptor status, and
tumor grade on ethnic differences in tumor stage and size
for breast cancer in US women. Am J Epidemiol. 2002;
155(6):534---545.
9. Li CI, Malone KE, Daling JR. Differences in breast
cancer stage, treatment, and survival by race and eth-
nicity. Arch Intern Med. 2003;163(1):49---56.
10. Dignam JJ. Differences in breast cancer prognosis
among African-American and Caucasian women. CA
Cancer J Clin. 2000;50(1):50---64.
11. Koh HK, Oppenheimer SC, Massin-Short SB,
Emmons KM, Geller AC, Viswanath K. Translating re-
search evidence into practice to reduce health disparities:
a social determinants approach. Am J Public Health.
2010;100(Suppl 1):S72---S80.
12. Warnecke RB, Oh A, Breen N, et al. Approaching
health disparities from a population perspective: the
National Institutes of Health Centers for Population
Health and Health Disparities. Am J Public Health.
2008;98(9):1608---1615.
13. Paradies Y. A systematic review of empirical re-
search on self-reported racism and health. Int J Epidemiol.
2006;35(4):888---901.
14. Jary D, Jary D. Collins Dictionary of Sociology.
Glasgow, UK: Collins; 1995.
15. Smedley BD, Stith AY, Nelson AR. Unequal treat-
ment: confronting racial and ethnic disparities in
health care. Washington, DC: Institute of Medicine;
2003.
16. Schulman KA, Berlin JA, Harless W, et al. The effect
of race and sex on physicians’recommendations for
cardiac catheterization. N Engl J Med. 1999;340(8):618---
626.
17. Lillie-Blanton M, Rushing OE, Sonia Ruiz S. Key
Facts: Race, Ethnicity and Medical Care. Menlo Park, CA:
The Henry J. Kaiser Family Foundation; 2003.
18. Institute of Medicine. Crossing the Quality Chasm: A
New Health System for the 21st Century. 2001. Avail-
able at: http://www.iom.edu/;/media/Files/Report%
20Files/2001/Crossing-the-Quality-Chasm/Quality%
20Chasm%202001%20%20report%20brief.pdf.
Accessed February 1, 2012.
19. Clark R, Anderson NB, Clark VR, Williams DR.
Racism as a stressor for African Americans. A biopsy-
chosocial model. Am Psychol. 1999;54(10):805---816.
20. McEwen BS, Seeman T. Protective and damaging
effects of mediators of stress. Elaborating and testing the
concepts of allostasis and allostatic load. Ann N Y Acad
Sci. 1999;896:30---47.
21. Krieger N, Sidney S. Racial discrimination and
blood pressure: the CARDIA Study of young black and
white adults. Am J Public Health. 1996;86(10):1370---
1378.
22. Lewis TT, Aiello AE, Leurgans S, Kelly J, Barnes LL.
Self-reported experiences of everyday discrimination are
associated with elevated C-reactive protein levels in older
African-American adults. Brain Behav Immun. 2010;24
(3):438---443.
23. Giscombe CL, Lobel M. Explaining disproportion-
ately high rates of adverse birth outcomes among African
Americans: the impact of stress, racism, and related factors
in pregnancy. Psychol Bull. 2005;131(5):662---683.
24. Cole SW. Chronic inflammation and breast cancer
recurrence. J Clin Oncol. 2009;27(21):3418---3419.
25. Burgess DJ, Ding Y, Hargreaves M, van Ryn M,
Phelan S. The association between perceived discrimi-
nation and underutilization of needed medical and
mental health care in a multi-ethnic community sample.
J Health Care Poor Underserved. 2008;19(3):894---911.
26. Major B, O’Brien LT. The social psychology of
stigma. Annu Rev Psychol. 2005;56:393---421.
27. Hammond WP. Psychosocial correlates of medical
mistrust among African American men. Am J Community
Psychol. 2010;45:87---106.
28. LaVeist TA, Nickerson KJ, Bowie JV. Attitudes about
racism, medical mistrust, and satisfaction with care
among African American and white cardiac patients. Med
Care Res Rev. 2000;57(Suppl 1):146---161.
29. Sorkin DH, Ngo-Metzger Q, De Alba I. Racial/ethnic
discrimination in health care: impact on perceived quality
of care. J Gen Intern Med. 2010;25(5):390---396.
30. Lee C, Ayers SL, Kronenfeld JJ. The association
between perceived provider discrimination, healthcare
utilization and health status in racial and ethnic minori-
ties. Ethn Dis. 2009;19(3):330---337.
31. Shelton RC, Goldman RE, Emmons KM, Sorensen
G, Allen JD. An investigation into the social context
of low-income, urban black and latina women: impli-
cations for adherence to recommended health
behaviors. Health Educ Behav. 2011;38:471---481.
32. Crawley LM, Ahn DK, Winkleby MA. Perceived
medical discrimination and cancer screening behaviors of
racial and ethnic minority adults. Cancer Epidemiol Bio-
markers Prev. 2008;17(8):1937---1944.
33. Williams DR, Jackson PB. Social sources of racial
disparities in health. Health Aff (Millwood). 2005;24
(2):325---334.
34. Casagrande SS, Gary TL, LaVeist TA, Gaskin DJ,
Cooper LA. Perceived discrimination and adherence to
medical care in a racially integrated community. JGen
Intern Med. 2007;22(3):389---395.
35. Gee GC. A multilevel analysis of the relationship
between institutional and individual racial discrimination
and health status. Am J Public Health. 2002;92(4):615---
623.
36. Williams DR, Neighbors HW, Jackson JS. Racial/
ethnic discrimination and health: findings from com-
munity studies. Am J Public Health. 2003;93(2):
200---208.
37. Krieger N. Embodying inequality: a review of
concepts, measures, and methods for studying health
consequences of discrimination. Int J Health Serv.
1999;29(2):295---352.
38. Karlsen S, Nazroo JY. Relation between racial
discrimination, social class, and health among ethnic
minority groups. Am J Public Health. 2002;92(4):624---
631.
39. LaVeist TA, Sellers R, Neighbors HW. Perceived
racism and self and system blame attribution: conse-
quences for longevity. Ethn Dis. 2001;11(4):711---721.
40. Sellers RM, Caldwell CH, Schmeelk-Cone KH,
Zimmerman MA. Racial identity, racial discrimination,
perceived stress, and psychological distress among Afri-
can American young adults. J Health Soc Behav. 2003;44
(3):302---317.
41. Wyatt SB, Williams DR, Calvin R, Henderson FC,
Walker ER, Winters K. Racism and cardiovascular
disease in African Americans. Am J Med Sci. 2003;325
(6):315---331.
42. Williams DR, Collins C. US Socioeconomic and
racial differences in health: patterns and explanations.
Annu Rev Sociol. 1995;21:349---386.
43. Taylor TR, Williams CD, Makambi KH, et al. Racial
discrimination and breast cancer incidence in US Black
women: the Black Women’s Health Study. Am J Epide-
miol. 2007;166(1):46---54.
44. Jones CP. Levels of racism: a theoretic framework
and a gardener’s tale. Am J Public Health. 2000;90
(8):1212---1215.
45. Kitzinger J. Qualitative research. Introducing focus
groups. BMJ. 1995;311(7000):299---302.
46. Strauss A, Corbin J. Grounded Theory Methodol-
ogy: An Overview. In: Denzin N, Lincoln Y, eds. Strategies
of Qualitative Inquiry. Thousand Oaks, CA: Sage Press;
1998:158---183.
47. Gee GC, Ro A, Shariff-Marco S, Chae D. Racial
discrimination and health among Asian Americans: evi-
dence, assessment, and directions for future research.
Epidemiol Rev. 2009;31:130---151.
48. TaylorDM, Wright SC, Moghaddam FM, Lalonde RN.
The personal/group discrimination discrepancy:
THE SCIENCE OF RESEARCH ON RACIAL/ETHNIC DISCRIMINATION AND HEALTH
May 2012, Vol 102, No. 5 |American Journal of Public Health Quach et al. |Peer Reviewed |Research and Practice |1033
perceiving my group, but not myself, to be a target of
discrimination. Pers Soc Psychol Bull. 1990;16(2):254---
262.
49. Malat J, Hamilton MA. Preference for same-race
health care providers and perceptions of interpersonal
discrimination in health care. J Health Soc Behav.
2006;47(2):173---187.
50. Goffman I. The Presentation of Self in Everyday Life.
Garden City, NY: Doubleday and Company; 1959.
51. Steele CM, Aronson JA. Stereotype threat does not
live by Steele and Aronson (1995) alone. Am Psychol.
2004;59(1):47---49.
52. Nuru-Jeter A, Dominguez TP, Hammond WP, et al.
“It’s the skin you’re in”: African-American women talk
about their experiences of racism. an exploratory study to
develop measures of racism for birth outcome studies.
Matern Child Health J. 2008;13(1):29---39.
53. Blanchard J, Lurie N. R-E-S-P-E-C-T: patient reports
of disrespect in the health care setting and its impact on
care. J Fam Pract. 2004;53(9):721---730.
54. Nápoles-Springer AM, Santoyo J, Houston K, Perez-
Stable EJ, Stewart AL. Patients’perceptions of cultural
factors affecting the quality of their medical encounters.
Health Expect. 2005;8(1):4---17.
55. YoonJ, Grumbach K, Bindman AB. Accessto Spanish-
speaking physicians in California: supply, insurance, or
both. JAmBoardFamPract. 2004;17(3):165---172.
56. James SA, Hartnett SA, Kalsbeek WD. John Henry-
ism and blood pressure differences among black men.
J Behav Med. 1983;6(3):259---278.
57. Malat JR, van Ryn M, Purcell D. Race, socioeconomic
status, and the perceived importance of positive self-
presentation in health care. Soc Sci Med. 2006;62
(10):2479---2488.
THE SCIENCE OF RESEARCH ON RACIAL/ETHNIC DISCRIMINATION AND HEALTH
1034 |Research and Practice |Peer Reviewed |Quach et al. American Journal of Public Health |May 2012, Vol 102, No. 5