Understanding Cervical Cancer Prevention and Screening in Chuukese Women in Hawai‘i

Abstract

Background

Cervical cancer is the primary cause of death due to cancer in women in Chuuk State, Federated States of Micronesia. The Chuukese population is the fastest growing segment of the Micronesian community in Hawai‘i. Little is known about the health beliefs or practices of this population in Hawai‘i. The purpose of this project was to describe the knowledge, attitudes, and beliefs of Chuukese women in Hawai‘i regarding cervical cancer prevention and screening.

Methods

Research assistants from the Chuukese community were recruited and trained as members of the research team. A culturally sensitive survey tool was developed and piloted by the research team and used to interview ten key informants from the Chuukese community in Honolulu, Hawai‘i.

Results

There is limited knowledge about cervical cancer, especially the association with human papillomavirus (HPV). This may be indicative of a lack of health information in general. Fear, privacy concerns, lack of awareness and cultural beliefs represent the main barriers mentioned when discussing cervical cancer. Education, done in a group setting with other women, is the most recommended method of informing this community and improving preventive and screening services for cervical cancer in these women.

Introduction

Cancer ranks as the second leading cause of death in nearly all the United States Affiliated Pacific Islands (USAPI), which is comprised of the US territories of American Samoa and Guam, the Commonwealth of the Northern Mariana Islands (CNMI), the Republic of the Marshall Islands (RMI), the Republic of Palau (ROP), and the Federated States of Micronesia (FSM).¹ FSM is comprised of the four states of Chuuk, Kosrae, Pohnpei and Yap, with nearly half of the population residing in Chuuk.

The FSM, RMI and ROP have Compacts of Free Association (COFA) with the United States and are often referred to as the Freely Associated States (FAS). These compacts provide for financial assistance in health and education, military defense and uninhibited travel for COFA citizens to the United States in exchange for strategic access to lands and waterways.^2,3 Despite the compacts, the FAS struggle with inadequate resources and poor infrastructure in many of the basic systems to become self-sufficient, including health care and education, which has contributed to significant out-migration. Between 1990 and 1998, there was a 251% increase in the number of Micronesians in Hawai‘i.⁴ Most recent estimates put the number of migrants settling in Guam, CNMI and Hawai‘i at 18,305, 2,100 and 12,215 respectively.⁵ In Hawai‘i, the fastest growing group of migrants is from Chuuk while the Marshallese remains the largest community.⁶

There is little in the literature regarding the issue of health disparities in the USAPI population. In 1998, the Institute of Medicine (IOM) published Pacific Partnerships for Health acknowledging that the peoples of the USAPI suffer tremendous disparities in nearly all health indicators compared to their counterparts on the continental US. These disparities are even more pronounced for the citizens of the FAS.⁷ The IOM further reported in 1999 in The Unequal Burden of Cancer, that there are also significant disparities in cancer for ethnic minority groups and the poor.⁸ The total USAPI population is small, approximately 460,000; consequently, the disparities may be hidden by the practice of aggregating Asian American and Pacific Islander data.^9,10

In recent years, there has been effort to document and disseminate data on Micronesian health, particularly in the area of cancer.⁶ With funding support from the Office of Minority Health and the National Cancer Institute, needs assessments were conducted and the growing cancer problem in the USAPI was finally documented. The findings, based primarily on mortality data, found cancer to be the second leading cause of death in nearly all the USAPI.¹ Additionally, cervical cancer was often the primary cause of cancer death for women in these islands.^11,12 Little is known about the health beliefs or practices of the Chuukese community in Hawai‘i. The purpose of this pilot project was to describe the knowledge, attitudes, and beliefs related to cervical cancer prevention and screening of Chuukese women living in Hawai‘i. Findings provide additional data to inform future research and interventions that will positively influence their cervical cancer prevention practices.^13,14

Background

Worldwide, cervical cancer continues to be the leading cause of cancer death in women, especially in parts of Africa, Asia and the Pacific Region.¹⁵ The majority of cervical cancers that are diagnosed in the United States are in women who have either never had a Pap smear or have not been screened within the last 5 years. Populations especially at risk include ethnic minorities and low-income women.¹⁶ In the FSM, the utilization of cervical cancer screening is less than 15 percent.¹¹ There is very limited data addressing the cervical cancer screening practices of women from the USAPI residing in Hawai‘i.

The project sought to 1) increase community capacity by training community research assistants and involving them in the research process; 2) develop and pilot test a culturally sensitive survey to collect information on cervical cancer prevention and screening; 3) conduct semi-structured interviews of key informants regarding cervical cancer prevention and screening among Chuukese women in Honolulu, Hawai‘i, and 4) describe knowledge, attitudes, and beliefs of the women interviewed.

Methods

The protocol was submitted to the University of Hawai‘i Committee on Human Studies and was granted exemption from the Institutional Review Board (CHS No. 16687).

Increase Community Capacity

Two women from the Chuukese community in Hawai‘i were recruited as research assistants (RAs) for the project, and were involved in refinement of the survey tool and consent form, recruitment and interviews of the key informants and validation of the results.

Develop and Pilot a Survey Tool

A survey tool was developed using questions from existing reliable and valid tools considered appropriate for the purpose of this study and modified for cultural appropriateness.¹⁷ The survey tool included open-ended and multiple choice questions about key informants' knowledge, attitudes, and beliefs about general health, health information and women's health. Additional questions focused on cervical cancer prevention and screening. Questions regarding personal screening practices were purposely omitted to allay fears about confidentiality and privacy.

Key Informant Interviews

Each research assistant (RA) recruited five women broadly representative of the Chuukese community in Hawai‘i, for a total of ten key informants. Important in the selection of study participants was their leadership roles within their community thus qualifying them as key informants.¹⁸

Both verbal and written informed consent was obtained from the participants. Interviews were conducted primarily in Chuukese, as the RAs noted participants' responses in Chuukese, English or a combination of the two. Each interview lasted less than 60 minutes and participants were given a $20 gift card for their time and contribution to the project. The interview notes were compiled by the RAs and translated to English as needed. Clarification was provided by the RAs when necessary, particularly with regard to interpretations of cultural expressions.

Ten key informants were interviewed and answered all survey questions. The notes from the key informant interviews were evaluated using constant comparative content analysis. The data were grouped by survey questions and according to themes generated related to knowledge about cervical cancer, barriers and facilitators to screening. The results were compiled and a group meeting was held to validate and disseminate results.

Results

Ten Chuukese women currently living in Hawai‘i consented to be interviewed for this study. Their ages ranged from 28 through 69, with a mean age of 49.5 years, (SD = 14.03). All participants had been born in Chuuk. The longest any of them had been in the United States was 15 years, with an average of 8.6 years (SD = 4.6), and one woman had immigrated as recently as 2008. All ten women spoke primarily Chuukese at home. About half of the women rated their comfort with the English language as good. All but one had health insurance and described their health as good to very good. They were all members of women's groups or church groups and all served in some leadership capacity, either in these groups or within their family structure.

General Health Issues and Health Information

Key informants were unanimous in naming diabetes as an important health concern for the Chuukese community in Hawai‘i. All but three also mentioned cancer, especially women's cancer, as a major health concern. This was followed by hypertension, heart disease and tuberculosis.

Most informants (9 of 10) said that Chuukese women in Hawai‘i were most likely to get general health information from health care facilities, naming specific locations, such as Kalihi-Palama Health Center and Kapiolani Medical Center for Women and Children, both of which employ English-Chuukese interpreters. Female family members were also cited as resources, particularly for women's health information.

All but one key informant said that the best way to disseminate women's health information was through a women's meeting or training. Radio programming was also mentioned though they cautioned this methodology because of the potential of hearing the message in the company of men as this would be inappropriate in their culture.

Knowledge, Attitudes and Beliefs

When the women were asked what most Chuukese women in Hawai‘i think when they hear the term “cervical cancer,” their responses generally focused on fear. “Some are scared to have the Pap smear.” “It makes some people scared to play around.” When asked what they themselves had heard about the disease and what caused it, key informants said it had something to do with sexual activity, including multiple partners, or poor hygiene. “It is caused from lack of cleanliness, multiple sex partners, too much sex. Too much sex is not good.”

They sit too long in stream(s), go fishing during menstrual periods, sit on the ground, have sexual intercourse. The cervix opens during the menstrual period and when they do these things, infections enter the cervix and cause cancer.

I don't know the name in English, but in Chuukese they call [it] disease in women's wombs, “semwenin nenien nouch.” I was told that when a woman has prolonged and profuse menstrual periods, it causes the cervix to become rotten.

When asked what they thought caused cervical cancer, factors associated with sexual activity including multiple partners and/or intercourse during menses were again cited. “Having sexual intercourse during menstrual period, during postpartum period. Too frequent sexual intercourse with husbands/partners. Women got from husbands/partners.”

About half of the women stated that they weren't sure what caused cervical cancer and a few pointed at poor hygiene as the culprit. “I do not know where it comes from or what causes. I want to know what cause. Does it affect the single or just the married ones? These are my problems.” “Not being clean, never shower and clean the inside.”

Half of the women said they had learned about cervical cancer from their mothers or other female family members. Others said they or other Chuukese women had gained their knowledge from medical personnel or women who had the disease. “I haven't learned about it and now that you ask, I am going to learn. I will attend if there is a training.” “My mother taught me and told me that having babies too often can cause cervical cancer. This kind of mother-daughter sharing is usually done on a one on one basis.”

Only one of the key informants said she had heard of HPV; still, she had only heard of it and not about it. Half of the women confused HPV with human immunodeficiency virus (HIV) while the others said they had never heard of it. Most key informants believed that Chuukese women in Hawai‘i would not know about HPV. “They know what is HIV but not HPV,” said one key informant. Similarly, none of the women had heard about the HPV vaccine. As such, they were unable to provide information as to whether women in their community had heard of the vaccine.

When asked what they had heard about Pap smears, those who had heard of the test (7 of 10) agreed that it was a female medical procedure, “a test for women's private parts.”

Slightly more than half (6 of 10) disagreed with the statement that there isn't much people can do to lower their chances of getting cancer. Most women (9 of 10) agreed that cervical cancer can be prevented while 8 of 10 thought that it was caused by a virus/infection. All agreed that if found early, cervical cancer can be cured. Only 2 of the women didn't know that Pap smear was a test for cervical cancer.

Barriers

Key informants cited several reasons for Chuukese women in Hawai‘i not getting Pap smears. The most frequent reason given (7 of 10) was that women do not want to show their “private parts” to anyone. “Showing private area to others is disrespectful.” “Embarrassment if someone sees their private area. This may be a cultural thing because we made it guarded so well.” “Some husbands don't want doctor to see private parts of the wives. Some women don't want anybody, including doctor, to see their private parts.” The women also didn't want male doctors to examine them and stated that often times, the husbands would not allow them to go.

Other responses included fear of the diagnosis or of the unknown, not being interested in going for a checkup, and not wanting anyone to know that they are sick. “They are scared. Some rather die than know that they have the disease.”

Facilitators

The most frequent response (7 of 10) provided as to how to get more Chuukese women in Hawai‘i to get a Pap smear was to explain the procedure and its importance to the women themselves. Key informants stressed that this explanation must be provided by a woman, as only women should address other women concerning such sensitive issues. Women's meetings were cited as a venue through which many Chuukese women could be reached. “Train or provide awareness to them about the disease and where to go for help. The training can be done in each organization or train the leaders…and they will train the others.” Some key informants also mentioned that Chuukese men should also be educated, but again, this education must be provided by someone of the same sex. “If the husband understands the importance, then they can let their wives go for Pap smear,” said one key informant. “This kind of test, both wife and husband have to agree on whether she goes or not.”

Discussion

The results of key informant interviews indicate limited awareness regarding cervical cancer prevention and screening among Chuukese women living in Hawai‘i. Much of the information is shared amongst female family members based on what the older women had heard or were taught themselves. Not having equivalent translations for commonly used terms or phrases in Chuukese may contribute to misconceptions.¹⁹ There is no translation for “cancer.” The Chuukese term for “cervix” is awen enu which translates to mouth of the ghost, which is thought to be an old term and likely used to disguise the topic. The phrase semwenin nenien nouch, which translates to sickness of the womb, can be misleading, as symptoms associated with general female reproductive tract disorders and infections such as bleeding and discharge are also commonly used to describe cervical cancer. This may explain the large number of informants who believe that cervical cancer is caused by paiking (infection), yet the relationship of HPV to cervical cancer was unknown. The apparent lack of association between HPV and cervical cancer may also be indicative of a more generalized lack of health information in Chuuk, emphasizing the need for increased health literacy efforts in this population. In general, these findings are quite similar to studies done with other minority populations or immigrant groups.^20,21

Perceived barriers to screening include fear and shame. A previous study of Chuukese women conducted in 2006 found that the term “cancer” was equated with death.¹⁹ Pap smears, recognized among most of the key informants as being a screening method for cervical cancer, are regarded as shameful because of the necessary exposure of the private areas. Additionally, the diagnosis of cancer itself may bring shame to oneself and her family as it might be a reflection of inappropriate sexual behaviors.^13,20,22 Despite this, key informants expressed optimism that if accurate information regarding cervical cancer and the importance of screening were presented to Chuukese women in a culturally sensitive manner (i.e., by a female health professional, in a women-only setting), the women would be receptive and, perhaps, more likely to seek appropriate medical attention. The women from the current study unanimously agree that if detected early, cervical cancer can be cured. These ideas were also noted by a recent study conducted in Hawai‘i with similar groups of women.²³ The importance of educating the husbands was also mentioned by several of the women, an approach not commonly mentioned in the literature.

Unlike other minorities including some Hispanic and Southeast Asian groups, fatalism or “God's will” was not brought up by the women as a barrier to screening, despite the church having a significant role in their lives.^13,20 Language access and lack of insurance, major barriers for other immigrant groups, were also not cited by any of the women interviewed.^13,14,24 Nine of 10 women in this group were insured and most felt comfortable with English. Furthermore, the facilities mentioned as preferred sources of information have Chuukese interpreters on staff.

The sample size for this pilot project was small and the key informants selected may not be truly representative of the population. The study methodology was successfully implemented however and can serve as the foundation for a more comprehensive assessment of the knowledge, attitudes and beliefs of the larger community, as well as of other Micronesian groups in Hawai‘i and the USAPI. The research assistants who were trained in interviewing techniques may be trained in focus group facilitation, thus continuing to build the capacity of the community to participate in research.

Conclusions

The results of the study should be validated before practice implications are made. However, providers who care for Chuukese women in Hawai‘i can be educated regarding the importance of privacy and sensitivity to gender issues. Correct information related to common misconceptions is needed to provide accurate information. This information can then be shared with the next generation of women, utilizing the oral traditions of their culture. This study highlights the cultural emphasis on gender specific approaches for delivery of education and screening services, something less common in the mainstream U.S. population.