2005 © Oxford University Press
Ensuring Access to Education and Services on Infertility for the Underserved
Correspondence to: Rosell L. Jenkins, PhD, 700 Rockmead, Suite 246, Kingwood, TX 77339 (e-mail: drrjenkins{at}earthlink.net).
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ABSTRACT |
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 Top Abstract IntroductionINFERTILITY DATA AND INFERTILITY...ACCESS BARRIERS TO INFERTILITY...METHODS OF DEALING WITH...CONCLUSIONSReferences |
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Race, culture, ethnicity, and socioeconomic status (SES) all influence how men and women cope with cancer-related infertility and whether they use infertility services. Unfortunately, these variables have not yet been studied in samples of cancer survivors. This article provides an overview of Medline-cited studies from 1980 to the present that examine the influence of ethnicity and socioeconomic status on the use of infertility services. Although underserved groups are disproportionately at risk for infertility in the United States, they are also less likely than middle- to high-SES Caucasians to seek medical treatment for this problem. Barriers to their use of infertility treatment include lack of knowledge, lack of financial resources, and cultural norms. It is very important for oncology care providers to take ethnicity and SES into account when counseling patients about infertility and to be aware of cultural and religious values with regard to assisted reproductive technology.
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INTRODUCTION |
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TopAbstractIntroductionINFERTILITY DATA AND INFERTILITY...ACCESS BARRIERS TO INFERTILITY...METHODS OF DEALING WITH...CONCLUSIONSReferences |
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Many cancer patients have concerns about infertility resulting from cancer treatment. Few studies have surveyed cancer survivors about attitudes or experiences regarding infertility, and those published have included few minorities in their samples (1–3). Thus, little is known about the use of infertility services by underserved and ethnic minority cancer patients. On the basis of a MEDLINE search from 1980 to the present, this article provides an overview of the literature. Although data directly relevant to cancer-related fertility are not available, this information can aid the cancer health professional in providing culturally sensitive care to underserved and underrepresented patients who are concerned about their reproductive potential.
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INFERTILITY DATA AND INFERTILITY SERVICES–SEEKER CHARACTERISTICS |
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TopAbstractIntroductionINFERTILITY DATA AND INFERTILITY...ACCESS BARRIERS TO INFERTILITY...METHODS OF DEALING WITH...CONCLUSIONSReferences |
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The most comprehensive data on infertility rates and use of infertility services are collected by the National Center for Health Statistics (4). The National Survey of Family Growth data consist of personal interview–based surveys that were conducted in 1973, 1976, 1988, 1995, and 2002. As 2002 infertility data are not yet available, 1995 survey data, with a national sample of women aged 15–44, living in the United States, are discussed here (4). According to National Survey of Family Growth data, in 1995, 60.2 million women were of reproductive age. Fifteen percent (9.3 million) reported that they used some kind of fertility service in their lifetime, including medical advice, tests, drugs, surgery, or other treatments. Excluding women who were surgically sterile, rates of infertility were 7% for Hispanic women, 6.4% for white women, 10.5% for African American women, and 13.6% for women of other ethnicities.
The women most likely to seek fertility services were characterized as follows: non-Hispanic white, married, income 300% above poverty level, private health insurance holders in the last year, and college graduates (5). They were most likely to seek advice, use diagnostic tests, or use medical help to prevent miscarriage. The survey also found that non-Hispanic white women were twice as likely as Hispanic women and African American women to receive ovulation drugs. However, most women, regardless of race, were more likely to seek advice and diagnostic testing rather than undergo actual infertility treatment.
In one of the few studies reporting the U.S. demographic characteristics of those seeking infertility treatment, Green et al. (6) reviewed the records of 756 couples seeking fertility services at two centers in Cincinnati from 1998 to 1999. The racial/ethnic identification of these patients was as follows: whites, 85.4%; African Americans, 10.2%; and other racial/ethnic groups, 4%. (Cincinnati's population is 87.2% white, 11.7% African American, and 1.1% other.) African American women were significantly less likely to have insurance and significantly more likely to have salpingitis. Even when insurance status was controlled, African American women still had higher rates of tubal disease.
Few studies have examined the influence of ethnicity or socioeconomic status on the success of infertility treatment. Sharara and McClamrock (7) investigated differences in in vitro fertilization outcome between white and African American women in an inner-city program. In this study, African American women made up 28% of the patients.
African American women presented with a significantly longer duration of infertility than white women. African American women also had a higher incidence of tubal disease, a higher body mass index, and required more aggressive ovarian stimulation than white women. Further, African American women had a lower implantation rate and were almost three times less likely than white women to become pregnant. Sharara and McClamrock (7) speculated that the lower implantation rate and pregnancy rate might be related to the longer duration of infertility and the higher body mass index.
Because gynecologic cancer can cause infertility, it is important to note that cervical cancer is more prevalent among African Americans and Hispanics than whites, and that women in these racial groups may be affected at an earlier age than whites (8). The association of invasive cervical cancer with poverty is pronounced in the United States and around the world and is certainly related to access to pap smear screening.
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ACCESS BARRIERS TO INFERTILITY SERVICES |
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TopAbstractIntroductionINFERTILITY DATA AND INFERTILITY...ACCESS BARRIERS TO INFERTILITY...METHODS OF DEALING WITH...CONCLUSIONSReferences |
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A number of factors influence whether a person will seek treatment for infertility. These can include cultural, religious, or economic factors. These factors are often interrelated and are important to consider when providing infertility treatment options.
Cultural Factors
The cultural beliefs that affect the use of infertility services by underrepresented and underserved groups likely originated and were passed generationally from one's country of origin.
African Americans. Some African Americans may be at high risk for infertility because of economic conditions and lack of access to health care (4,9). However, data seem to indicate that they are also reluctant to seek infertility treatment (4–6). They may believe that infertility treatments such as assisted reproductive techniques are counter to God's wishes (9,10). They also may be reluctant to use medical technologies because of a distrust of the medical community, stemming from past mistreatment of blacks (e.g., involuntary sterilization of black women, Tuskegee experiment). However, some suggest that the extended family ethos in African American families places more emphasis on nurturing and sharing than reproducing (10). Thus, African Americans may not opt to undergo infertility treatments that result in a biological offspring and may choose other means of parenting (e.g., informal or formal adoption).
Hispanic Americans. Little research has examined infertility in Hispanics. It is believed that acculturation and religion may play a role in their beliefs regarding fertility treatment (9). For example, a Catholic Mexican-American male may object to tests like masturbation or looking at sexual visual aids in an examination room. In general, Hispanic Americans also may be more inclined to turn to priests or traditional healers—they may believe that infertility is God's will. Also, Hispanic males and females may view infertility treatment as a female domain, as a diagnosis of infertility may be perceived as a masculinity threat (9). However, in a study in which nonwhites and Hispanics made up 18% of the sample, men reported less distress than women about infertility (11). Unfortunately, sample size did not provide enough power to evaluate the association between ethnicity and distress.
Asian Americans. The Asian American community consists of many ethnic groups, and little infertility research has been conducted with any of these groups inside the United States (9). However, research conducted in Asian countries indicates that those who are infertile are often stigmatized and that there are few acceptable methods to deal with infertility (9,12). For example, a study conducted in India indicated that, as infertility is negatively viewed in that society, infertile couples resort to "secret" gamete donation and shun adoption (12). Asians residing in the United States may be reluctant to discuss sexual issues or bodily functioning even with a health professional (9). They may find diagnostic tests too invasive and may be more comfortable turning to a family member for advice.
Native Americans. Research on Native Americans and infertility is practically nonexistent. The infertility rate in this group is high, probably because of the prevalence of diseases associated with infertility (i.e., diabetes, cervical cancer) and lack of access to medical care (8). Molock (9) indicates that Native Americans view infertility treatment as unnatural, preferring to accept childlessness. However, adoption is culturally sanctioned.
Religious Barriers
Religion often intersects with culture to influence attitudes about infertility (9,10). For example, using donor gametes is forbidden in some religions (9). In Islam, religious law dictates the preservation of the genetic line. Thus, only a married couple's eggs and sperm may be used in procedures to treat infertility. Orthodox Jews worry about violating incest taboos and laws about legitimacy and may only use donor eggs from a non-Jewish woman. Islam also forbids surrogacy and adoption. The Vatican does not endorse any assisted reproductive technique—even insemination with the husband's own sperm. Some cancer survivors may view their illness, as well as its consequence of infertility, as a punishment from God (9). Religious/spiritual counseling may help counter these self-blaming beliefs.
Economic Barriers
Economic barriers also present treatment difficulties (9,13). Assisted reproductive technology is expensive. Members of underserved groups may also be economically disadvantaged and are often under- or uninsured. In a study reporting the 1982 NFSG data for infertility services, 22% of unmet needs for infertility services were concentrated among the poor, and 6% among Medicaid recipients (14). In 1995, the socioeconomic characteristics of those seeking fertility services had not significantly changed, indicating that the infertility services needs of lower-socioeconomic groups remain unmet (5).
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METHODS OF DEALING WITH INFERTILITY |
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TopAbstractIntroductionINFERTILITY DATA AND INFERTILITY...ACCESS BARRIERS TO INFERTILITY...METHODS OF DEALING WITH...CONCLUSIONSReferences |
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Informal adoption, formal adoption, surrogacy and acceptance are some of the most common methods that the aforementioned racial/ethnic groups employ to cope with infertility (9). Specifically, research indicates that African Americans are likely to adopt or engage in informal adoption. Hollingsworth (15) found that having sought infertility treatment services was not a significant predictor of formal adoption for African Americans, but the researcher did find that African American women who were childless and surgically or nonsurgically sterile were likely to have sought formal adoption. In African American communities, it is common for childless couples to parent nieces, nephews, or other relatives for whom their biological parents may not be able to offer care (9,10). Native Americans also follow this practice (9). Hispanic Americans, Asian Americans, and Native Americans may simply accept their infertility and not attempt any treatment procedures.
To increase access for underrepresented and underserved groups to infertility services, health care providers need to increase their cultural sensitivity. Molock (9) suggests that counselors begin by asking a patient about his or her understanding of infertility and asking how other important community or family members view infertility. She cautions that it is important not to interpret differences as deficiencies and to respect patients' decisions about infertility treatment. Cancer patients may need education about the role of their cancer and its subsequent treatment in causing infertility (16). They also need timely information about reproductive treatment options such as freezing gametes or embryos before treatment.
Another way of increasing access to infertility services is to encourage and provide support groups in underserved communities and to provide services in collaboration with the networks used and established in these communities. In one study examining the role of formal and informal social support networks in patients with cancer, researchers found that African Americans and Hispanics were more likely to view informal networks (i.e., extended families, civic clubs) as helpful (17). Other research has indicated that some African Americans may prefer faith-based support groups (18). This research indicates that an important component of increasing access is providing assistance that is synchronous with the cultural values and beliefs of a particular group. This might include forming community partnerships and training cancer survivors to lead support groups and to educate others in their racial/ethnic group about cancer and infertility treatment options.
Multimedia support might be another way of increasing access. Cousineau et al. (11) investigated the effectiveness of an educational CD-ROM in delivering a psychosocial intervention addressing concerns about infertility. Their findings indicated that infertility patients as well as reproductive health professionals found the program user friendly and effective. The researchers concluded that computerized educational media, such as Web sites or CD-ROMs, might help combat problems with access, such as low literacy or difficulty with English fluency.
Finally, it is important to decrease out-of-pocket costs for care to prevent or remediate cancer-related infertility when patients are economically disadvantaged. This is a persistent problem that will likely warrant political advocacy at the state and federal legislative levels. At present, 15 states mandate insurance carriers to cover or offer to cover infertility treatment (19). The mandate to cover specifies that insurance companies must cover diagnosis and treatment of infertility. States mandated to cover infertility treatment are Arkansas, Hawaii, Illinois, Louisiana, Maryland, Massachusetts, Montana, New Jersey, New York, Ohio, Rhode Island, and West Virginia. States mandated to offer infertility treatment insurance coverage (i.e., employers must offer a policy that offers coverage but are not obligated to pay for this policy for their employees) are California, Connecticut, and Texas. Considering that the majority of states have no mandates regarding infertility treatment and that underrepresented and underserved groups have inadequate health insurance coverage, other avenues of increasing access need investigation. More funding is needed to cover infertility expenses and to offer educational and counseling services to these groups.
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CONCLUSIONS |
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TopAbstractIntroductionINFERTILITY DATA AND INFERTILITY...ACCESS BARRIERS TO INFERTILITY...METHODS OF DEALING WITH...CONCLUSIONSReferences |
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A number of factors affect the access of underrepresented and underserved groups to infertility treatment services. Although there is a paucity of infertility research with these groups in the United States, this review indicates that demographic and cultural factors are important considerations for cancer and reproductive health professionals providing infertility treatment options to underserved and underrepresented groups. It is important to consider the role of personal variables in decisions about seeking infertility services, as the factors reviewed here will not affect the decision-making process of all members of a particular group. Clearly, more research needs to be conducted examining racial/ethnic differences in use of infertility services and outcomes of infertility treatments. Along with an examination of the role of cultural and religious views on use of infertility services, the influence of gender needs to be considered. Qualitative research may be a useful tool in identifying differences in beliefs and their influence on infertility treatment–seeking behavior.
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REFERENCES |
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