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Experiences and Perceptions of Medical Discrimination Among a Multiethnic Sample of Breast Cancer Patients in the Greater San Francisco Bay Area, California

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We conducted qualitative interviews with breast cancer survivors to identify themes related to institutional, personally mediated, and internalized discrimination in the medical setting. We conducted 7 focus groups and 23 one-on-one interviews with a multiethnic sample of breast cancer survivors randomly selected from a population-based registry covering the Greater San Francisco Bay Area, California. Participants reported experiencing different forms of medical discrimination 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 discrimination experiences in both groups. Participants reported experiencing medical discrimination at all 3 levels, which may have deleterious health effects through the biopsychosocial stress pathway and through active coping mechanisms that could lead to delayed- or underutilization of the health care system to avoid discrimination.
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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 dened 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 bodys
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 inammatory response.
23
Chronic
inammation 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-
uence 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., ght) or disengage-
ment (i.e., ight) 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)
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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 inuences
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 dened 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 rst
histologically conrmed primary breast can-
cer (International Classication 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 identication of additional
levels or forms of discrimination that might
not have been captured by Jones3-level
framework.
46
The goal of the analysis was to identify core
concepts or themes related to participants
experience with medical discrimination. We
used Jonesframework to provide structure
for organizing our results and to conrm
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.
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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 entitiesgovernments,
bureaucracies, and culturethat 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 inuenced 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.
Ind a huge discrimination in what healthcare
you have. Thatstherst 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 cant afford then you are
going to get a minimum of their time.
African American participant
We dont have money to get treated in Stanford
or other places. Good service denitely requires
good price.
ChineseCantonese speaker
You can choose better doctor, expensive medical
care, but if you just have HMO, you have less
money because HMO, you know, sometimes, its
good only when... you are...you are healthy,
but when you are sick, they dont care for you.
Filipina participant
Language barriers. A number of immigrant
participants discussed how their limited
English prociency 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.
ChineseMandarin 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.
ChineseMandarin speaker
Personally Mediated Discrimination
Personally mediated discrimination refers to
direct interpersonal experiences with discrimi-
nation. Specically, 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 participantsrace/ethnicity,
education, and immigrant status that compro-
mised their quality of care. The following quote
illustrates the belief that providers may un-
derestimate a patients ability to understand,
based on an assumption about the individuals
educational level, and thus limit the informa-
tion they provide to patients.
I think the assumption that doctors sometimes
give is that they wont understand.They think
they need to limit what they tell us because we
wouldnt understand. So back to that question
you asked about education. Yes, they feel that we
dont have that much education to understand
whats 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 providers 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
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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.
ChineseMandarin 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 prociency, 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 dont have enough education, you dont
even know what to ask. Right? He also doesnt
know what to tell you. So maybe in his mind he
would think, You wouldnt understand. Even if I
tell you, you wouldnt know. Even if I explain to
you, you wouldnt understand. So why telling
you so much?
ChineseCantonese 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 prociency as a barrier to
receiving medical information.
My English is not good enough. And I dont
communicate with them.
ChineseCantonese speaker
Personal or Group Discrimination
Discrepancy
In addition to themes tting 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
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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
didnt 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 Jonesframe-
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 dont
think because youre Black, Chinese, Spanish,
that youre stopped because youre 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, Spanishmay 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. Its society and thats 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
Jonesmultilevel framework.
44
Themes
that we identied as consistent with this
framework were reported across racial/
ethnic groups, although the extent to which
they were reported varied across groups.
We also identied additional themes
that did not tneatlywithinJones
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.
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The predominant forms of medical dis-
crimination themes in our study sample were
related to class, race, and language. Our
ndings 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 ndings 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 uent 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 elds, referred to in the
literature as John Henryismand 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 ndings 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 studysdesign
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 difculty 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 ndings 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 ndings 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 Reprintslink.
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 identication 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 Institutes 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.
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Cancer is predominantly understood as a physical condition, but the experience of cancer is often psychologically challenging and has potential to be traumatic. Some people also experience re-traumatization during cancer because of previous, non-cancer-related trauma, such as intimate partner violence or adverse childhood experiences. A trauma-informed approach to care (TIC) has potential to enhance care and outcomes; however, literature regarding cancer-related TIC is limited. Accordingly, the objective of this scoping review was to identify what is known from existing literature about trauma-informed approaches to cancer care in Canada and the United States. A scoping review (using Arksey and O’Malley’s (2005) framework) was conducted. The PsycINFO, CINAHL, MEDLINE (Ovid), Embase (Ovid), and Scopus databases, key journals, organizations, and reference lists were searched in February 2022. In total, 124 sources met the review criteria and 13 were included in the final review. Analysis included a basic descriptive summary and deductive thematic analysis using conceptual categories. Theorizations, applications, effectiveness, and feasibility of TIC were compiled, and gaps in TIC and recommendations for TIC were identified. TIC appeared to be growing in popularity and promising for improving cancer outcomes; however, gaps in the theorization, effectiveness, and feasibility of TIC persisted. Many recommendations for the application of TIC were not issued based on a strong body of evidence due to a lack of available literature. Further research is required to develop evidence-based recommendations regarding TIC related to cancer. A systematic review and meta-analysis would be warranted upon literature proliferation.
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Background In the U.S, a wide body of evidence has documented significant racial-ethnic disparities in women's health, and growing attention has focused on discrimination in health care as an underlying cause. Yet, there are knowledge gaps on how experiences of racial-ethnic health care discrimination across the life course influence the health of women of color. Our objective was to summarize existing literature on the impact of racial-ethnic health care discrimination on health care outcomes for women of color, to examine multiple health care areas encountered across the life course. Methods We systematically searched three databases and conducted study screening, data extraction, and quality assessment. We included quantitative and qualitative peer-reviewed literature on racial-ethnic health care discrimination towards women of color, focusing on studies that measured patient-perceived discrimination or differential treatment resulting from implicit provider bias. Results were summarized through narrative synthesis. Results In total, 84 articles were included spanning different health care domains, such as perinatal and cancer care. Qualitative studies demonstrated the existence of racial-ethnic discrimination across care domains. Most quantitative studies reported a mix of positive and null associations between discrimination and adverse health care outcomes, with variation by the type of health care outcome. For instance, over three-quarters of the studies exploring associations between discrimination/bias and healthcare-related behaviors or beliefs found significant associations, whereas around two-thirds of the studies on clinical interventions found no significant associations. Conclusions This review shows substantial evidence on the existence of racial-ethnic discrimination in health care and its impact on women of color in the U.S. However, the evidence on how this phenomenon influences health care outcomes varies in strength by the type of outcome investigated. High-quality, targeted research using validated measures that is grounded in theoretical frameworks on racism is needed. This systematic review was registered [PROSPERO ID: CRD42018105448].
Introduction: Racial/ethnic minority communities are underrepresented in research. Medical mistrust and mistreatment, discrimination, and a lack of diverse research workforce may influence recruitment and engagement. Engaging Latinx immigrants for research presents unique recruitment challenges, especially for biobehavioral research which is not well explored. The purpose of this paper is to examine the effect of targeted strategies for recruiting young adult, Latinx immigrants. Methods: Recruitment occurred from 2018 to 2019 in an ongoing, longitudinal, community-engaged research study examining risk and resilience factors for health outcomes in Latinx immigrants. Strategies included active recruitment (e.g., community-based events and public events) and passive recruitment (e.g., word-of-mouth and radio and flyer advertisements). Logistic regression analysis was conducted to examine the influence of type of recruitment on participant enrollment. Results: The study enrolled 391 participants of 701 interested individuals (55%). Greater odds of enrollment were among participants recruited through radio and flyer advertisements (adjusted odds ratio [AOR]=2.90, 95% CI [1.59, 5.27], p=.001), word-of-mouth (AOR=2.50, 95% CI [1.55, 4.03], p<.000), or community-based organization events (AOR=1.68, 95% CI [1.19, 2.38], p=.003). Conclusions: Passive recruitment strategies through trusted sources increased the odds of enrollment of Latinx immigrants in biobehavioral research. Future recruitment efforts should leverage trusted sources to disseminate recruitment materials addressing barriers to recruiting Latinx participants for research.
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Background: Black men are more likely than Non-Hispanic White (NHW) men to be diagnosed with high-risk prostate cancer (PCa). We examined the extent to which social factors were associated with differences in PCa risk profiles between Black men and NHW men (using a modification to the original D'Amico risk groups based on prostate specific antigen (PSA), Gleason score (GS), and TNM stage (stage)), based on individual and combined clinicopathologic characteristics. Methods: We conducted a cross-sectional population-based study of 23,555 Black men and 146,889 NHW men diagnosed with PCa in the California Cancer Registry from 2004 to 2017. We conducted multivariable logistic regression to examine the association of year of diagnosis, block group-level neighborhood socioeconomic status (nSES), marital status, and insurance type on differences in PCa risk profiles between Black and NHW men. Results: High PSA (>20 ng/mL), GS, stage, individually and combined PCa risk profiles were more common among Black men versus NHW men. In fully-adjusted models, relative to NHW men, we observed a persistent 67% increased odds of high PSA among Black men. NSES was the factor most strongly associated with racial disparity in high PSA, accounting for 25% of the difference. Marital status was the factor that was second most associated with a racial disparity. Conclusions: NSES was the factor most strongly associated with racial disparities in high PSA PCa. Impact: The influence of nSES on racial disparities in PSA, GS, stage, and PCa risk profiles warrants further consideration.
Article
Objective Although a number of factors contribute to racial disparities in breast cancer outcomes, perceived discrimination in healthcare may be a key factor that hinders positive interactions and negatively impacts patient outcomes. The goals of our study were to (1) assess the prevalence of perceived discrimination as reported by breast cancer patients and (2) identify factors related to discrimination in women overall as well as by race.DesignThis study is a secondary analysis of a larger study, “Narrowing the Gaps in Adjuvant Therapy,” where a convenience sample of 359 women completed one telephone survey assessing sociodemographics, and attitudes and beliefs concerning breast cancer treatments and care. Chi-square analysis was used to assess the relationship of categorical variables with perceived discrimination, while the F-test was employed for continuous variables. Logistic regression determined predictors of perceived discrimination, a dichotomous variable (none vs. any).ResultsA majority of women were Black (58%), privately insured (85%), and had at least a Bachelor’s degree (48%). Discrimination was reported by 32.4% of women, with significantly more Black women reporting discrimination than White women. Insurance status, attitudes toward treatment, and distress factors were significantly related to perceived discrimination. In the logistic model, women who were less trusting of their providers (OR = 0.863 [0.751, 0.993], p = .021) and Black women (OR = 7.241 [0.751, 0.993], p = .039) were more likely to report incidences of discrimination.Conclusions Our findings suggest a need to understand Black survivor’s experiences with healthcare. Similarly, future work must focus on identifying ways to improve provider trust amongst breast cancer survivors.
Article
This comment notes that P. R. Sackett et al (see record 2004-10043-001) have raised a concern: that 29 mischaracterizations of an experiment from C. M. Steele and J. Aronson (see record 1996-12938-001) spread over 8 years of media reports, journal articles, and textbooks could mislead teachers, students, researchers, policymakers, and parents into believing that the African American-White test-score gap is entirely caused by stereotype and not at all by group differences in opportunities and test-related knowledge, and that this belief could undermine efforts to improve African American students' academic skills. Sackett et al focus on the reporting of only a single experiment from the first published article on stereotype threat. It is argued that this extremely narrow focus greatly exaggerates three issues. These issues are addressed in turn.
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The authors examine determinants of satisfaction with medical care among 1,784 (781 African American and 1,003 white) cardiac patients. Patient satisfaction was modeled as a function of predisposing factors (gender, age, medical mistrust, and perception of racism) and enabling factors (medical insurance). African Americans reported less satisfaction with care. Although both black and white patients tended not to endorse the existence of racism in the medical care system, African American patients were more likely to perceive racism. African American patients were significantly more likely to report mistrust. Multivariate analysis found that the perception of racism and mistrust of the medical care system led to less satisfaction with care. When perceived racism and medical mistrust were controlled, race was no longer a significant predictor of satisfaction.
Article
Background: In the United States, black and Hispanic white women with breast cancer present with more advanced stages and have poorer survival rates than non-Hispanic whites, whereas Asians and Pacific Islanders do not. However, Asians and Pacific Islanders and Hispanic whites are heterogeneous populations, and few studies have evaluated breast cancer stage, treatments, and mortality rates for subgroups of these populations. Methods: Using data from 11 population-based tumor registries that participate in the Surveillance, Epidemiology, and End Results Program, we conducted a retrospective cohort study to evaluate the relationship between race and ethnicity and breast cancer stage, treatments, and mortality rates. The cohort of 124,934 women diagnosed as having a first primary invasive breast carcinoma between January 1, 1992, and December 31, 1998, included 97,999 non-Hispanic whites, 10,560 blacks, 322 American Indians, 8834 Asians and Pacific Islanders, and 7219 Hispanic whites. Results: Relative to non-Hispanic whites, blacks, American Indians, Hawaiians, Indians and Pakistanis, Mexicans, South and Central Americans, and Puerto Ricans had 1.4- to 3.6-fold greater risks of presenting with stage IV breast cancer. Blacks, Mexicans, and Puerto Ricans were 20% to 50% more likely to receive or elect a first course of surgical and radiation treatment not meeting the 2000 National Comprehensive Cancer Network standards. In addition, blacks, American Indians, Hawaiians, Vietnamese, Mexicans, South and Central Americans, and Puerto Ricans had 20% to 200% greater risks of mortality after a breast cancer diagnosis. Conclusions: Differences in breast cancer stage, treatments, and mortality rates are present by race and ethnicity. Breast cancer survival may be improved by targeting factors, particularly socioeconomic factors, that underlie these differences.
Article
A disproportionate number of cancer deaths occur among racial/ethnic minorities, particularly African Americans, who have a 33% higher risk of dying of cancer than whites. Although differences in incidence and stage of disease at diagnosis may contribute to racial disparities in mortality, evidence of racial disparities in the receipt of treatment of other chronic diseases raises questions about the possible role of inequities in the receipt of cancer treatment. To evaluate racial/ethnic disparities in the receipt of cancer treatment, we examined the published literature that addressed access/use of specific cancer treatment procedures, trends in patterns of use, or survival studies. We found evidence of racial disparities in receipt of definitive primary therapy, conservative therapy, and adjuvant therapy. These treatment differences could not be completely explained by racial/ethnic variation in clinically relevant factors. In many studies, these treatment differences were associated with an adverse impact on the health outcomes of racial/ethnic minorities, including more frequent recurrence, shorter disease-free survival, and higher mortality. Reducing the influence of nonclinical factors on the receipt of cancer treatment may, therefore, provide an important means of reducing racial/ethnic disparities in health. New data resources and improved study methodology are needed to better identify and quantify the full spectrum of nonclinical factors that contribute to the higher cancer mortality among racial/ethnic minorities and to develop strategies to facilitate receipt of appropriate cancer care for all patients.
Article
Various authors have noted that interethnic group and intraethnic group racism are significant stressors for many African Americans. As such, intergroup and intragroup racism may play a role in the high rates of morbidity and mortality in this population. Yet, although scientific examinations of the effects of stress have proliferated, few researchers have explored the psychological, social, and physiological effects of perceived racism among African Americans. The purpose of this article was to outline a biopsychosocial model for perceived racism as a guide for future research. The first section of this article provides a brief overview of how racism has been conceptualized in the scientific literature. The second section reviews research exploring the existence of intergroup and intragroup racism. A contextual model for systematic studies of the biopsychosocial effects of perceived racism is then presented, along with recommendations for future research.
Article
Background Available cancer statistics pertain primarily to white and African American populations. This study describes racial or ethnic patterns of cancer-specific survival and relative risks (RRs) of cancer death for all cancers combined and for cancers of the colon and rectum, lung and bronchus, prostate, and female breast for the 6 major US racial or ethnic groups. Methods Cancer-specific survival rates were analyzed for more than 1.78 million patients who resided in the 9 SEER (Surveillance, Epidemiology, and End Results) Program geographic areas and were diagnosed between 1975 and 1997 as having an incident invasive cancer, by 6 racial or ethnic groups (non-Hispanic whites, Hispanic whites, African Americans, Asian Americans, Hawaiian natives, and American Indians and Alaskan natives). Results Survival rates improved between 1988 to 1997 for virtually all racial or ethnic groups. However, racial or ethnic differences in RRs of cancer death persisted after controlling for age for all cancers combined and for age and stage for specific cancer sites (P<.01). African American, American Indian and Alaskan native, and Hawaiian native patients tended to have higher RRs of cancer death than the other groups. American Indians and Alaskan natives generally exhibited the highest RRs of cancer death, except for colorectal cancer in males. Conclusions Survival rates in patients with cancer have improved in recent years, but racial or ethnic differences in survival rates and in RRs of cancer death persist. Additional studies are needed to clarify the socioeconomic, medical, biological, cultural, and other determinants of these findings.
Article
An unexpected finding that has surfaced in research on discrimination is that respondents perceive a higher level of discrimination directed at their group as a whole than at themselves as individual members of that group. The present study directly tested this personal/group discrepancy by focusing on two groups of Canadian immigrants who have been the targets of much discrimination, Haitian and South Asian women. Respondents were questioned about their personal and group discrimination on four separate dimensions: race, culture, status as newcomers to Canada, and gender Strong support was found for the generality of the personal/group discrimination discrepancy. Three possible explanations for the discrepancy point to possible avenues for future research: the denial of personal discrimination, the exaggeration of group discrimination, and information-processing biases.
Article
This chapter reviews recent studies of socioeconomic status (SES) and racial differences in health. It traces patterns of the social distribution of disease over time and describes the evidence for both a widening SES differential in health status and an increasing racial gap in health between blacks and whites due, in part, to the worsening health status of the African American population. We also describe variations in health status within and between other racial populations. The interactions between SES and race are examined, and we explore the link between health inequalities and socioeconomic inequality both by examining the nature of the SES gradient and by identifying the determinants of the magnitude of SES disparities over time. We consider the ways in which major social structures and processes such as racism, acculturation, work, migration, and childhood SES produce inequalities in health. We also attend to the ways in which other intervening factors and resources are constrained by social str...
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give an overview of the origins, purposes, uses, and contributions of grounded theory methodology / grounded theory is a general methodology for developing theory that is grounded in data systematically gathered and analyzed (PsycINFO Database Record (c) 2012 APA, all rights reserved)