Phase I – Exploratory Sequential Design – Exploring, Developing, and Testing Instrument Items.
Stage 1 – Qualitative Data Collection and Analyses
Su-I Hou and Mira Lessick
Cervical Cancer Screening among Chinese Women:
Exploring the Benefits and Barriers of Providing Care
Su-I Hou, DrPH, CPH, MCHES, RN
Mira Lessick, PhD, RN
Note
This is an original manuscript / preprint of an article published by AWHONN Lifelines Wiley Online Library on 09/03/2006, available online: https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1552-6356.2002.tb00501.x
Introduction
According to the American Cancer Society(2002), 13,000 women were diagnosed with cervical cancer this year and some 4,100 women will die of it. Cervical cancer disproportionately affects Asian women.
Recent epidemiological data from the U.S. cancer registry (Ries et al., 2000) demonstrate that Asian women have a higher rate of cervical cancer (10.2/100,000) as compared to Caucasian women (8.4/100,000). Asian women also had a higher rate of death with cervical cancer (2.7/100,000) than whites (2.4/100,000).
However, cervical cancer is a highly preventable disease if detected early. In fact, as reported by the National Cancer Institute (1998), the incidence and mortality rates of cervical cancer had significantly decreased by more than 70 percent during the past few decades. Regular checkups and Pap screening have contributed greatly to this impressive reduction (CDC, 1998).
Benefits of Screening
Due to the typically long pre-clinical phase of cervical cancer, screening for early detection is critical. The primary purpose of the Pap smear is to identify women who have cellular changes that place them at risk for developing cervical cancer. The risk of developing cervical cancer is greater among women who have never been screened or those who have not had screening on a regular basis (Celentano et al., 1989).
Additionally, the survival data show that the prognosis is directly related to the stage of can- cer at diagnosis. The chance of surviving cervi- cal cancer for more than five years can be as high as 95 percent if the initial diagnosis is at the early stage. For those initially diagnosed with a terminal stage of cancer, the chance of surviving five years drops to less than 20 per- cent. Early detection via Pap is currently the most practical method of finding cervical can- cer in the early stages for women at risk (CDC, 1998).
Screening Guidelines
The U.S. Preventive Services Task Force (USPSTF) is an independent panel of experts in primary care and disease prevention. Their responsibilities include systematic reviews of the evidence of effectiveness and development of recommendations for clinical preventive services. Currently, the task force recommends routine screening for cervical cancer (at least every three years) for all women who are or have been sexually active and who have a cervix (USPSTF, 1996). There is insufficient evidence to recommend for or against an upper age limit for Pap screening (CDC, 2002). In addition, there is insufficient evidence to recommend for or against routine screening with colposcopy, or screening for human papillomavirus (HPV) infection (National Cancer Institute, 2002). Nevertheless, recently published guidelines have suggested DNA HPV testing as a preferred approach for women with an abnormal Pap result if a liquid-based cytology method is used for screening (Wright, Cox, Massad, & Wilkinson, 2002) (see Box 1).
Box 1.
Following Up Abnormal Results
The Bethesda System for cervical cytological classification is the standard framework for laboratory reports. The recently released consensus guidelines, based on the new 2001 Bethesda System, continue the use of low-grade and high- grade squamous intraepithelial lesions (SILs) to refer to cervical cancer precursors (Solomon et al., 2002). Sometimes other terms are used to describe the abnormal cells, such as cervical intraepithelial neoplasia (CIN). Low-grade precursors are a common mild dysplasias condition, especially in young women.
The majority of low-grade precursors return to normal. Sometimes, low-grade precursors (LSIL or CIN 1), however, can progress to high-grade precursors (HSIL or CIN 2, 3). High-grade precursors are not cancerous, but they may eventually lead to cancer and should be treated.
When the Bethesda System was first drafted in 1988, clinical management was focused on identifying all SILs, including low-grade precursors (LSIL). However, there has been a shift in focus on detection and treatment of HSIL because most LSIL (especially in young women) represent HPV infection (Ho, Bierman, Beardsley, Chang, & Burk, 1998). Therefore, it’s logical to clarify the previous “atypical squamous cells of undetermined significance” (ASCUS) category. The new 2001 Bethesda System had encouraged pathologists to qualify atypical squamous cells (ASC) into two categories of either “undetermined significance” (ASC-US) or “cannot exclude HSIL” (ASC-H) (Solomon et al., 2002).
According to the new guidelines, women with ASC-US should undergo repeated cytology tests, colposcopy or DNA testing for high-risk types of HPV. However, if liquid-based cytology is used for screening, testing for HPV DNA is the preferred approach (Wright et al., 2002). The performance of HPV testing allows for a clear statement regarding ASC interpretation. Positive HPV tests among ASC- US patients have higher probability of an HSIL compared with those whose HPV status is unknown, and negative HPV results have less than 1 percent chance of HSIL (Solomon, Schiffman, & Tarone, 2001).
In most instances, women with ASC- H, LSIL or HSIL should be referred for colposcopy or biopsy of any abnormal areas (Wright et al., 2002). Colposcopy is a procedure to examine the vagina and cervix, using a lighted magnifying instrument called a colposcope. Biopsy is the removal of a small piece of tissue for diagnosis. Methods used to treat SILs include cryosurgery (freezing that destroys tissue), laser treatment (surgery using a high-intensity light), LEEP (loop electrosurgical excision procedure, the removal of tissue using a hot wire loop), as well as conventional surgery. Yet challenges to cervical cancer diagnostic tests have also been identified (Adams, 2002).
Many organizations, including the American Cancer Society, the National Cancer Institute, the American College of Obstetricians and Gynecologists, the American Medical Association and others, also recommend that annual Pap screening should begin when women reach age 18 and older, or younger if they are sexually active. Although most health organizations or providers today use this as a recommended cervical cancer screening guideline, it may not be as appropriate or relevant for Chinese women. What health care providers may find is that it’s extremely difficult to convince most Chinese women to accept a Pap test screening if they aren’t sexually active, even if they have reached age 18. Furthermore, most Chinese health care providers also have concerns of performing this routine screening if a woman is still a “virgin.” Some Chinese parents may feel angry and even sue a health care provider if their daughter is given a Pap exam if she is not married.
Considering the conservative and traditional value of Chinese culture on sexuality and virginity, the screening guidelines recommended by USPSTF may be more appropriate and relevant for this population.
It’s recommended that women who are past menopause still need to have regular Pap tests. However, women who have undergone a hysterectomy don’t require Pap screening unless the hysterectomy was performed because of cervical cancer or its precursors.
Although vaginal smears are often done for follow-up of women who had a hysterectomy, some studies suggest little or no benefit of routine vaginal screening for women with a hysterectomy for benign conditions (Pearce et al., 1996). Prevalent recommendations on regular Pap screenings for women with hysterectomy even due to benign conditions indicate that many health care providers are either still not clear about the screening guidelines or do not keep up with recent research evidence. Although it seems appropriate to be conservative, the adverse effect of these unnecessary screenings may result in increased health care dollars, resource abuse, and false alarms.
Screening Among Chinese Women
According to U.S. Census data (U.S. Census Bureau, 2000), Chinese com- pose the largest subgroup (25 percent) of the Asian American population. However, the cancer screening needs of women within this group have largely been ignored by the health care community.
Despite the proven efficacy of Pap testing, screening rates are low among Asian populations in the U.S. The percentage of Asian women living in the U.S., who have had at least one Pap test, ranges from 46 percent to 56 per- cent (Hiatt et al., 1996; Yi, 1994). In contrast, Hiatt et al. (1996) found that the prevalence of women having at least one Pap test was above 95 percent among whites, blacks, and Latinos. Although a more recent study on Chinese immigrants (Do et al., 2001) showed higher Pap screening prevalence (75 percent), only 60 percent had been screened recently.
According to the CDC’s National Breast and Cervical Cancer Early Detection Program (NBCCEDP), common barriers to Pap test screening reported among women in the U.S. include (CDC, 1998),
- Fear
- Embarrassment
- Cost
- Transportation
- Communication barriers
- Lack of health care provider referral
- Complications with child care
- Lack of time
Whether these reasons are true for Asian women may be unclear because Asians composed only 2 percent to 3 percent of the sample of the NBC- CEDP report. In recent years, there have been only a few studies identifying factors hindering Asian women in the U.S. from obtaining a Pap test. While Asian women share some similar concerns as other women, such as access, communication and embarrassment, the few existing studies suggest other barriers are more prominent, such as (Hou, Fernandez, Baumler, & Parcel, 2002; Yi, 1994; Yu et al., 2001),
- Marital status
- Sexual behavior
- Perceived risk
- Gender of health care provider
Marital Status & Sexual Activity
Marital status has been shown to be strongly associated with cervical can- cer screening among Asian women (Do et al., 2001; Hou, 2002; Yi, 1994). Compared with women who were nev- er married, currently married women had higher Pap screening adherence. Yi (1994) suggested that unmarried Asian women are less sexually active than unmarried U.S.-born women and, therefore, may not perceive themselves at risk for cervical cancer.
The relationship between marital status and Pap screening may be con- founded by women’s sexual experience. In fact, qualitative results from Hou’s study (2002) indicated a strong relationship between marital status and women’s sexual experience (see Table 1). Sexual activity was typically mentioned along with marital status by more than 85 percent (12/14) of the Chinese participants in Hou’s study.
Women said that they would get a Pap test after they were married, that is, after they started to engage in sexual activities. Values toward virginity may partially explain the low screening prevalence among unmarried Chinese women. Qualitative data from Hou’s study showed common concerns from Chinese women in the pre- contemplation stage (women who had never had a Pap test, and who did not intend to have one in the coming year). For example, one woman said, “I think culturally I want to keep my body as a ‘whole.’” In Chinese culture, virginity is an important value before marriage. Several study participants stated, “I feel bad to have a Pap screening if I am not sexually active,” or, “Americans begin their sex earlier, and most of them are sexually active before marriage. Therefore, they may not have the same concern.”
Study Information—Barriers to Pap Screening Among Chinese Women in Pre-Contemplation Stage—A Qualitative Approach
Purpose:
Identify factors that hinder Chinese women in the pre-contemplation (PC) stage from considering a Pap test (contemplation stage)
Study location:
One of the largest Chinese community churches in Houston, TX
Inclusion criteria:
Chinese women (age 20 years or older) who had never had a Pap test and no intention to obtain a screening in the coming year (pre-contemplation stage)
Sampling strategies:
Criterion sampling, snowball sampling, and theory-based construct sampling
Sample description:
All women who participated in the study were unmarried women, age range 28-36. The final sample consisted of 14 Chinese women. Only two of them reported previous sexual experience
Source. Hou (2002).
Low Perceived Risk
A low perceived risk of getting cervical cancer might also influence Chinese women’s screening decisions. This could be due to feeling healthy, no family history or no symptoms. For example, some women have said, “I don’t have any family history, I don’t feel it (cervical cancer) affects me …I think that I do not fall into the risk category. I think I am still OK” (Hou, 2002).
Embarrassment
It’s common among women from all cultural and ethnic groups to dislike the supine, legs restrained position common during a vaginal exam and Pap test. Some Chinese women, however, hold a stereotype that American women are more comfortable being naked, and therefore may be less embarrassed by a vaginal exam and the submissive and exposed positions that it requires.
Gender of Physicians
In almost all research among Chinese women, a preference for female physicians for vaginal exams is expressed. Some Chinese women may forgo screening simply because a female provider is not available. This conservative attitude may also be influenced by acculturation. For example, an American-born Chinese girl stated that her mother (Chinese immigrant) would definitely need a female provider to perform the procedure.
This girl, raised in U.S. society, felt more comfortable about seeing a male health care provider, while her mother felt strongly that Pap screening was a very private procedure. Women who strongly identify with Chinese versus American culture have equally strong preferences for female health care providers (Hou, 2002) (See Table 2).
Screening Barriers—Barriers to Pap Screening Among Chinese Women in Pre-Contemplation Stage—A Qualitative Approach
- Low perceived risk
- Embarrassment
- Gender of physicians
- Lack of communication
- Lack of health care access
Source. Hou (2002).
Lack of Communication
Communication regarding Pap screen- ing and sexually related issues is lack- ing among Chinese culture. “In Chinese culture … we don’t talk about this at home. Parents would not raise this type of issueI am not comfortable with discussing my body,” one Chinese woman said, expressing very commonly held views. Chinese families seldom encourage female members to have a Pap screening. There is little or no communication about sensitive or embarrassing issues in Chinese society.
Health Care Access
Chinese, as well as other immigrant minorities, may have less access to health care in the U.S. due to language, literacy level and other socioeconomic challenges (Yu, 2001). Chinese women who immigrate to the U.S. are less likely to seek health care services. A lack of Chinese health care providers also limits accessibility for some women: “I was kind of lost in the health care system when I first came to the U.S. I was not familiar with the system or how my insurance would cover my health exams. In China, we can read magazines or newspapers, and from the media we can get health information very easily. While in America, I don’t know where to get health information. And it takes more time to read and understand” (Hou, 2002).
Clinical Implications and Recommendations
As the number of Chinese American women increases in American society, the importance of cancer screening will increase. However, a balance should be achieved between cancer screening promotion and minimization of unnecessary biopsies, false alarms and anxieties. The need to treat cancer early should also be weighed against the need to avoid overtreatment.
Cultural beliefs and attitudes toward cancer have been shown to have great influence on foeign-bornwomen’s screening practices. Therefore, cancer control interventions targeting less acculturated immigrant groups should be based on a thorough under- standing of the population. Intervention programs should also target health care providers who serve Chinese and other foreign-born communities.
Previous studies have suggested that health care provider interventions could focus on including information about strategies to help overcome patient-specific barriers, assistance with setting up reminder systems and the provision of linguistically appropriate educational materials (Lee et al., 1999; Yu et al., 2001).
Health care columns in local Chinese newspapers can also serve as an effective strategy for reaching Chinese women and their families. Knowledge of cultural beliefs and attitudes and an understanding of the characteristics of the population (age, distribution, the percentage of foreign-born adults, English fluency, and SES) are vital to the delivery of effective culturally competent nursing care in women’s health and cancer screening settings.
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