Findings from the key informant interviews
Impact of cervical cancer
The key informants described CCA’s impact on
women’s lives as multifaceted. First, CCA and its treatments
often profoundly affect women’s overall health via infertility,
morbidity, and mortality. Latinas were believed to bear the greatest burden,
in that more Latinas are diagnosed, particularly at younger ages and more
advanced stage, in part due to inadequate healthcare. Additionally, many
patients experience negative psychosocial reactions, e.g. fear, shock,
denial, anxiety, depression, anger, and shame due to the perception that CCA
is associated with sexually transmitted diseases and promiscuity. When left
unaddressed, the informants warned that these reactions may likely impact
treatment-seeking behaviors, especially among women of color. Finally, some
CCA treatments have left women burdened by infertility, negative body image,
and feeling flawed as a woman and sexually undesirable. Unfortunately, these
concerns are rarely voiced and addressed, as patients often feel
uncomfortable and embarrassed. The informants agreed that a consistent,
trusting relationship with their doctors must be established in order for
CCS to present these concerns.
Socio-ecological factors affecting the experience
The primary socio-ecological factors were SES and language. Women of
lower SES and limited English fluency, many of whom are recent immigrants
and heads of households, have similar issues across ethnicity: less access
to care, less knowledge about CCA and resources, more likely to be uninsured
or under-insured, more likely to view the diagnosis as a death sentence, and
to equate asymptomatic state with good health. For many, family and finances
are prioritized over their own health. These factors create barriers to
screening, care and treatment. Lower SES women have difficulty keeping
treatment and follow-up care due to transportation problems, work
circumstances (inability to take time off, threat of job termination, loss
of wages), or lack of childcare. Frequent change of residence is another
challenge to promoting timely treatment and follow-up care. Moreover, one
African American informant noted that stigma associated with government
assisted healthcare plans (e.g., MediCal) has turned African Americans away
from utilizing such plans.
Social support was identified as another key socio-ecological
factor. According to the key informants, Caucasian CCS view support from
friends as most important, followed by family and spousal support. Also
essential is balancing social support with independence (i.e. not becoming
too dependent on the family/caregiver). For African American CCS, social
support from family and friends is very important. However, many African
American CCS are unpartnered and thus have one less source of support.
Informants who work with Latina and Asian American CCS noted that these
women view spousal support as essential; support from other family members
and friends is also important. Family provides support through
doctor’s visits, transportation and medical compliance. For all
CCS, children often provided powerful motivation to get well. However,
family problems may also delay treatment seeking.
Role of culture
Most key informants agreed that beliefs in communities of color that
CCA is a contagious, sexually transmitted disease stigmatizes those with the
illness. Some cultural beliefs and practices may increase
women’s vulnerability to gynecologic illness (e.g. douching
after intercourse to prevent pregnancy and infection). Additionally, CCA
screening (e.g. yearly pap-smears) are shunned by some Latina and Asian
women because it is unacceptable to expose women’s genitalia or
discuss sexual health concerns.
Culture also affects how CCS cope with the illness. Key informants
observed that African-, Asian- and Latina- American CCS, particularly the
less acculturated, often do not question doctors about diagnosis or
treatment. Beliefs in the superiority of alternative medicine (i.e. home
remedies, herbs) over Western modern medicine exists across some ethnic
groups, particularly with older, lower SES and/or more recently immigrated
women. An increasing number of women across ethnicity incorporate
complimentary and herbal medicines into their treatment. Across ethnicity,
spirituality and religion are also important. Use of prayer to cope with CCA
is very common. However, informants suggested that religious beliefs could
also impose undue burden on CCS (e.g. belief among many Latina and Asian
American CCS that cancer results from divine punishment). Among the very
religious, the idea that God will heal them without medical support was
prevalent, leading to serious negative outcomes.
Healthcare system and provider-patient relationship
Another barrier to healthcare identified was the doctor-patient
relationship. Informants reported that people of color as a whole harbored
substantial distrust of providers and disenchantment with services due to
history, personal experiences (e.g. lack of continuity of care) and
others’ negative experiences. An African American informant
noted, ‘A lot of African American women are aware that racism
impacts the quality of care received.’ Latina key informants
reported that older Latinas feared being used as ‘guinea
pigs’ by the medical establishment. Informants believed language
and communication problems contributed to this sentiment, as patients often
feel intimidated by doctors and embarrassed about asking questions. They are
not usually encouraged to ask questions nor are they actively involved in
the treatment decision-making. Communication barriers, lack of cultural
sensitivity, and limited time spent with patients created impediments to
care and treatment adherence for ethnic minority women. Informants urged
doctors to treat CCS with dignity and coordinate care with other providers
to increase compliance.
Findings from the focus group discussion
lists the domains covered
in the focus group discussions. Major themes are also presented in the Appendix
Recovery and coping
The women discussed various strategies to recovery. African
Americans stressed timely medical care and trust in God. Asian American CCS
cited religious faith, family support, complying with doctors’
recommendations, attending check-ups, and sustaining normal routines as most
important in recovery and coping. Proper surgery and treatment were most
important for survival for the Latina CCS. They were motivated to get well
through a positive attitude, religious faith, family support, and the desire
to see their children grow up. However, some had great difficulty coping
with the diagnosis. One Latina stated:
At first I refused to accept the diagnosis and I went to Mexico
to get a second opinion and saw three different doctors but
unfortunately they all gave me the same diagnosis. It took time for me
to accept it but I wanted to make sure of the diagnosis and the results
were not a mistake.
Caucasian CCS spoke of being educated about the illness and
proactive in the treatment. Also helpful was enlisting support from doctors
and other CCS, and maintaining normal routines:
After my gynecologist called me and said that I had cancer, I
immediately asked for a second opinion. I had my tissue samples from the
biopsies reviewed. Then, I went on the internet and got as much
information as I could get, talked to other doctors and friends that
were doctors that knew about cancer. I kind of knew what to do and it
also… psychologically gave me something else to focus on
rather than feel despair.
Participants across ethnicity expressed the importance of support
from immediate and extended family. Mothers, spouse/partners, and children
were the principal sources of support. Family members frequently accompanied
patients to appointments and performed household chores. A Japanese survivor
My mother was really there for me. She cooked a lot of meals and
went with me to my appointments even a year later.
Many Latina survivors were dependant on their spouses for providing
emotional as well as financial stability. This was poignantly stated by one
I’m very fortunate to have my husband’s
support emotionally and with family care. Without him I’m
sure I wouldn’t be feeling as I feel today… me
siento segura (assured and secure) or talking with others about my
However, one African American woman was reluctant to go to her
family for support:
I don’t say much to family because I
don’t want them to know much particularly when I
didn’t get that much information from doctors. My family
can’t help me so I don’t want sympathy. Why tell
people? Keep it to yourself.
Moreover, friends were important sources of emotional support and
information for Caucasians.
Spirituality and religiosity
All the African Americans agreed on the importance of (a) prayer and
of seeking God’s guidance and assistance in coping with the
illness, and (b) doctors as God’s instruments in healing. One
patient explained that both are involved in healing:
A lot of people think that they shouldn’t go to the
doctor. They do things such as take herbs or steam treatments instead.
It’s important to use prayer and ask God for
assistance… put it in His hands either way it goes. God
knows the end result before you do.
Similarly, faith was a significant means of coping with the illness
and pain for the Asian American CCS. One Chinese survivor explained,
‘You can tell God when you are in pain, and you get support from
Latina CCS found support and relief through church and religious
faith. They likewise experienced comfort and peace in prayers. Latina and
Asian American CCS held a strong sentiment that the condition is beyond
their control and in God’s hands. Thus, they were able to feel
at peace by turning the situation over to God and accepting
God’s will. One Latina stated:
If He doesn’t want me to be here on earth anymore
there is nothing I can do about it and I will accept God’s
decision whatever it’ll be.
Many Caucasian CCS also discussed the importance of spirituality,
support from clergy, as well as practicing visualization and relaxation to
Handling a major illness, control over illness, participation in medical
While the African Americans believed in the importance of seeking
prompt medical care for any body changes, they indicated that many in their
community tolerate severe symptoms before seeking medical attention. They
stressed that patients need to speak up for themselves because doctors often
do not provide much information. They also believed that they have some
control over their body and illness by practicing cleanliness and
disinfecting behaviors (e.g. douching):
You do have control over things when you notice things are
different about your body. You don’t want to ignore this. It
is important to take care of this by going to the doctor and get
medication. [However], no one has total control
over things. You try to be brave and have a better handle of
Asian American CCS deemed controlling one’s mood as
important in handling a major illness, specifically having a positive
attitude, maintaining a sense of peace, and avoiding stress. While some
Chinese CCS believed that illness could be controlled through proper diet,
physical activity, controlling one’s mood, and following
doctors’ advice, other Asians felt frustrated over developing
CCA despite a healthy lifestyle. The more acculturated CCS felt that women
need to be involved in their medical treatment by asking questions and
Latina CCS discussed the importance of the following in handling
CCA/dysplasia: (1) be informed about the illness, get treatment, and be
actively involved in one’s care; (2) practice healthy behaviors
(better diet and better hygiene after sex); (3) seek family support; and
most importantly, (4) accept God’s will because one does not
have much control over cancer.
The Caucasian CCS likewise believed that one does not have much
control over getting cancer. However, they found it helpful to gain a sense
of control by gathering more information, practicing healthy behaviors
(dieting and exercising), and being involved in their treatment.
Health socialization: Traditions and values affecting cancer experience
Cultural beliefs shaped the women’s feelings about
illness and health outcomes. Most had theories about causes of the cancer.
Asian American and Latina CCS believed that being married, monogamous or
older translated into lower risk for CCA. Stress and poor diet, on the other
hand, were thought to be causes. While Caucasian, African American, and
Asian American CCS were more likely to attribute some responsibility to
their partners, Latina CCS were more likely to assign blame to themselves,
to view cancer as a form of punishment and a death sentence, and traditional
herbs and diet as curative:
The day after my diagnosis I went to visit my father, I held his
hand and asked him for his forgiveness if I had been disrespectful or
failed in something. He wondered why I was doing that but I preferred to
Traditions have a lot to do with our behavior today and
attitudes towards getting informed about any other disease but
particularly about cervical cancer, because in the Latino community a
topic related to female organs is a sexual issue to be considered a
taboo. It is something not discussed even within the family.
Most of the women of color believed that ‘keeping
clean’ or douching/washing before and after sex prevents CCA. A
Latina survivor stated:
I think cervical cancer can be controlled, if we wash before and
after having sex, and if we watch what we eat, maybe we can prevent
getting it. Women with cervical cancer should avoid having intercourse
which can cause infections.
Additionally, the African Americans were taught to partake in low
fat diet, exercise, and regular doctor’s visits to keep healthy.
The Asian women described general health practices taught by their families:
avoid certain foods, eat fruits and vegetables, and promptly treat
Medical concerns regarding cervical cancer/dysplasia
Recurrence of the cancer, metastasis, and early death were common
fears across ethnicity. Latinas were concerned about leaving their families
without caregivers, while Caucasians expressed fears about painful deaths,
isolation, and the unknown. Worry about daughters developing cancer was
discussed by the Latinas. The African American CCS attributed some of their
fears to lack of information received from doctors. Additionally, many were
concerned about doctors’ lack of sensitivity during pelvic
examinations. Besides fear of deterioration of their condition, the CCS
indicated that pain and fatigue from the illness were also disruptive. One
African American noted that intense pain associated with dysplasia has made
her life more difficult.
Femininity and Body image
Most of the African American and Caucasian CCS expressed feeling
damaged and worn out after the diagnosis. One African American CCS confided:
My body is gross. I don’t feel clean until I find
out what is wrong with me. I bathe a lot and scrub down there.
Asian and Latina CCS were extremely concerned with illness and
treatment effects on fertility and appearance (hair loss). Loss of fertility
was particularly distressing for women who had not yet had children. One
Japanese survivor lamented:
You grow up thinking you’ll have kids. Now you
won’t. What is my role as a woman, I ask myself? What is
different from a man?
While concerns about physical appearances existed across ethnicity,
Latinas expressed more negative feelings about their bodies after surgery
(abdominal scars, adverse effect on self-image and self-worth as women), and
deep concerns about the impact on their relationships:
Nothing will be the same. My body won’t be the same
because they removed my ovaries, fallopian tubes, and womb.
In general, CCS felt that younger women are more affected than older
women. Additionally, the dysplasia survivors expressed little femininity and
body image concerns.
Effects on intimate relationships
Some single African Americans experienced loss of libido in part due
to fear that sex would worsen their condition. Those with sexual desires
often had difficulty finding partners. Married African Americans reported
forcing themselves to have sex with their husbands. One woman’s
comment exemplified the group sentiment:
I have no sexual desire. I force myself. He’s just
on top of me and I wait until he’s finished.
Most of the Asian American dysplasia survivors did not feel their
relationships were adversely affected. However, some disclosed problems,
such as lack of libido and pain. Additionally, fears about injuring or
aggravating the affected area adversely affected the frequency and quality
of sexual relations. According to a Japanese survivor:
It is a psychological thing. You’re just afraid.
It’s just such a delicate area. You think about when it
would hurt. We’re intimate but it is not the same. You are
afraid when you visualize what is going on in there. What are you going
to disrupt? As a married couple, you want to give, but
you’re not as free. The love is the same, but the quality of
the sexual activity went down.
The Latina CCS discussed how the perception of women with
hysterectomies as ‘incomplete’ and
‘lacking sexual desire’ resulted in stigma and
abandonment by their sexual partners:
Two months after my diagnosis my husband left me for another
woman. It has been a nightmare for me not only because of the diagnosis
but also because my ex-husband’s woman constantly calls to
insult me that I’m not good as a woman anymore, that I can
no longer have children and that I will die from cancer.
Some Latina CCS reported positive effects of CCA, including stronger
relationships, ability to end bad relationships, and relief from not having
to engage in sex:
After my cancer diagnosis over a year ago, I decided to leave
[my partner] before he did it to me. Even before
my diagnosis, we were having problems because of his alcoholic habits
and I would not want to be a bother or to be insulted as a woman. It
also has been a relief not having to worry about pleasing him
Caucasian CCS experienced many physical symptoms from the illness
and treatment that made it difficult for them to enjoy sexual intimacy.
Single women found it hard to date after diagnosis and treatment. Sexual
problems resulted in relational difficulties among the married women.
Relationship with doctors
African Americans, Caucasians, Latinas, and more acculturated Asians
all believed women need to be proactive, educated, and involved in their
health care. Most of the monolingual Asian Americans, however, preferred
doctors to make the decisions for them. The majority of the women of color
did not seek second opinions.
Overall, Asian Americans expressed more satisfaction with support
received from doctors and in their relationships with doctors than the
African Americans, Latinas, or Caucasians. One Chinese survivor noted,
‘The relationships are very good. Doctors are caring for us. We
feel comfortable.’ Although some African American CCS felt their
doctors were congenial, they were dissatisfied with their insufficient
explanation of test results:
My pap was abnormal and the doctor called and simply said it
would be addressed during my next visit… when I asked, they
said I had pre-cancer cells but [the doctor]
didn’t explain what that was.
Another African American survivor recalled her experience and
frustration in vivid terms:
Just because they told me there is nothing there, I
don’t believe it. I want to see what they are doing and
taking out of me. When I got the colposcopy, they put that yellow stuff
in me. I was wearing pantiliners and noticed snuff looking stuff. I
called the doctor because I didn’t know if my insides were
coming out. I thought I was going to die. They said that it comes from
the medicine. They treat us like cattle and didn’t tell me
beforehand that that will happen.
Another common complaint was doctors’ lack of
sensitivity during physical examinations. One African American survivor put
When [doctors] insert instruments
…don’t just stick it up there. I’m
not a prostitute. I’m not wide open. My body is a
Latina CCS also expressed a number of concerns: lack of continuity
of care, embarrassment and doctor insensitivity during pelvic exams,
insufficient time with doctors, language barriers, and long wait for
appointments. Sentiments shared included:
It took hours for [my doctor] to see me
and even then I was only seen for a few minutes because he did not have
the time to listen to me. He only reviewed my chart and recommended that
I make an appointment to go back and see him. To me that was and still
I don’t speak English and the doctors
don’t speak my language so how can I or anyone who does not
have the ability to communicate be assured they are getting the proper
care? We have to depend on a translator and still feel like they are not
asking what we really want to ask the doctor.
It is uncomfortable and embarrassing to be seen by a stranger
especially for this particular exam. We are not raised like that and
those are private issues. It interferes with getting care and we wait
until it is completely necessary, maybe that contributes to having a
higher risk of getting the disease.
The male doctor is too rough. I felt like I was dying.
Immigration status was also a concern for undocumented Latina and
Asian women. Fear of being reported to immigration officials inhibited
receipt of certain services. Additionally, they felt that removal of
language barriers would improve their relationships with providers.
Latinas and Caucasians agreed that one’s financial and
insurance status affect quality of care. Education and knowledge about CCA
also influenced care. These CCS felt that educating women about post-surgery
issues (e.g. pain, psychosocial concerns) were lacking and needed. Caucasian
CCS related both positive and negative relationships with their doctors:
We had a good relationship. He was very young, but he was also
very comforting. I found the doctors to be wonderful and they remind you
to have your check-ups and taking my meds.
Some doctors like to play God and they won’t say
when they did something improperly. The way I found out that a doctor
could do a pap smear incorrectly is by reading the pathology report that
I got in my medical file. I was surprised at how many times my doctor
didn’t get the correct sample when I had already been
diagnosed and treated. The smear would come out inconclusive and
he’d say, ‘You’re fine, just come
back in 2 or 3 months.’ But he wouldn’t say
When it was obvious that I had cancer, I went to see my
gynecologist. I had a pap smear which they said was inconclusive. And it
horrified me to realize that I had a huge tumor in my cervix and the pap
smear didn’t detect it. I went to two doctors who
didn’t give me complete and accurate exams. The cancer was
already so advanced. I was in complete pain and unable to walk. I got a
female doctor…she did everything right. Two days later I saw
Doctor’s involvement in patient adherence
The African Americans did not experience much doctor support. Often
the only recommendation given was for follow-up tests. However, they would
like to have received health practice-related recommendations. All the
participants reported attending the follow-up appointments. While all the
Asian American CCS reported following doctors’ recommendations,
they did not feel that their doctors provided any special help. Some Chinese
survivors’ reported their doctors recommended increasing water
intake and exercise, and applying ointment (for dysplasia). About
30% of Latinas followed doctor’s recommendations
(e.g. diet) and abstinence for dysplasia. Many were more willing to comply
after seeing other CCA patients who became disabled as a result of
non-adherence to treatment. While some reported receiving support from
doctors and others reported receiving none, notably none of the Latinas were
informed about cancer support groups.
Access to care and quality of care
The African American and Latina CCS believed lack of money or
insurance results in poorer quality of treatment. One African American
I went to a hospital one time and the nurse treated me very rude
when she thought I didn’t have health insurance. But when
she found out I did, she became more friendly and helpful.
Another African American related how she was passed over in a clinic
where most of the staff and patients were Latino. The Latina CCS believed
that doctors at low-cost clinics were less competent, less professional, and
unable to provide continuity in care. Translators were often unavailable or
poorly trained. Similarly, Caucasian CCS felt that in less expensive
clinics, where gynecological doctors are also obstetricians, pap tests are
less thoroughly conducted and results not carefully reviewed. The Asian
American CCS did not perceive any barriers and/or discriminatory treatment
in accessing care, even those who were uninsured.
Stress and the psychological effect of cervical cancer
Competing demands (work, household chores, finances, commitment to
family and children) placed considerable stress on the women. The African
American survivors’ experiences included:
Kids, taking the kids to school, taking care of things for me
and the kids, and not having enough time to sleep. It’s very
hard to manage day to day. The cervical dysplasia has affected my life
because I am in a lot of pain.
I want to get my medical situation dealt with which has added to
my overall stress. I also stress about budgeting.
One Asian self-professed ‘workaholic’
discussed the difficulties in avoiding insufficient sleep and overwork. A
few Asian women related strategies for dealing with stress:
Talking with my friends, then I will feel better. Talking to my
husband and friends will help.
The Latina CCS faced many stressors: becoming incapacitated, being
dependent on others, and ultimately unable to care for their children.
Depression and anxiety resulting in insomnia were not uncommon. Several
‘felt empty’ after the surgery. Many were plagued
with intrusive thoughts about the illness. Several participants discussed
efforts to keep things from their families to avoid burdening them.
I have faith and believe in God. I pray and ask Him to give me
health and if it is not possible to cure me, to give me more
time—enough to take care of my eleven-year-old daughter who
I’m very worried. I don’t want to end
up in a wheel chair, depending on someone else. I have a handicapped son
who totally depends on me and my mother lives with me and if something
happens to me, who will care for them? Most of the nights
I’m sleepless and often cry alone. I don’t want
my family to know how I really feel and keep my feelings to myself but
it’s hard to maintain the calm, it is very stressful for
The Caucasian CCS discussed the possible role of stress in cancer
and/or recurrence. However, some found it hard to live less stressfully. On
the other hand, several mentioned positive changes as a result of CCA. One
It made me stronger. My goals and priorities changed, I want to
‘give back’ to society.
A few felt lucky that they survived, and that losing their uterus
is a small price to pay.
Many African American, Caucasian and Asian American CCS did not
consider their neighborhood a source of stress. However, a number of Latinas
and a few of the African American and Asian American CCS voiced
dissatisfaction with neighborhood quality and safety. Some Asian survivors
were concerned about possible carcinogenic effects of pollution. With few
exceptions, most Latina CCS were concerned about neighbors’
perceptions of them after the illness. They feared shame and embarrassment,
as well as social isolation.
In general, Latinas were uncomfortable disclosing private matters
to coworkers/supervisors, concerned about being unable to perform job
duties, and feared losing their jobs and being unable to provide for their
families. Most African Americans did not disclose the illness to their
supervisors; most did not believe that their employers would be supportive.
One African American woman had to stand up for herself in front of her
An insensitive supervisor didn’t want to give me
the day off but I knew the law and she gave me the day off.
Similarly, most Asian Americans did not disclose the illness to
their employer/supervisor. Of those who did, none reported receiving
support. However, several indicated that disclosing the illness to
co-workers was helpful. One Chinese survivor mentioned:
Discussions with coworkers helped a lot because they may know
somebody who had the same thing and can tell you what to do, what to
expect, and how to deal with it. Among 2 or 3 of us, we talk it out. If
their friends share the same illness, they will share what they know.
They can give us comfort.
One Caucasian CCS reported that she was forced to retire early.
Others reported having to reduce work during surgery and recovery period.
Several Asian and Caucasian women felt that co-workers treated them as if
they were now more fragile and limited in their abilities. Overall, none of
the women reported being discriminated against as a result of their illness.
However, a few Latina participants were uncertain how such discrimination
would be recognized.
Most important concerns
Many women experienced depression due to worry about the illness,
social isolation, and lack of physical activity. Other concerns included
fear of passing CCA to daughters and treatment-related side effects (hair
loss, pain, fatigue, and urinary incontinence). African Americans were
concerned about preventing recurrence, available treatment options, and
staying healthier overall as well as financial situation, family
responsibilities, and emotional well-being. Some Chinese CCS related
concerns about lack of finances, particularly feeling shame in having to ask
I will be more secure if I have more money. Because
I’m not working, I have to ask my husband for
money…But he makes a big fuss. I feel bad for myself.
The Latina CCS were most concerned about their family’s
health and emotional well-being, followed by their own health and financial