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Issues to consider when planning cancer control interventions for women
Issues to Consider When Planning Cancer Control Intervenvtions for Women Claudette Division National Bethesda,
G. Varricchio,
of Cancer Prevention Cancer Institute Maryland
DSN, RN, OCN,
FAAN
and Control
T
his paper addresses the topic of cancer control for women in the Pacific Basin. Cancer control is defined and a brief overview of the incidence of breast, cervical, and uterine cancers and overall cancer rates for women in various Pacific Basin countries, compared with the incidence for these groups in Hawaii and in Los Angeles County, is presented. This information provides a frame of reference for discussion of issues related to cancer prevention, early detection/screening efforts, and symptom control in culturally diverse groups.
CANCER
CONTROL
Cancer control is the reduction of cancer incidence, morbidity, and mortality through an orderly sequence from research on interventions and their impact in defined populations to the broad, systematic application of the research results. This is the definition used by the Division of Cancer Prevention and Control of the National Cancer Institute.’ Cancer control is interpreted to be any action taken to prevent cancer, to promote the early detection of cancer, and to provide supportive care throughout treatment to reduce morbidity and promote rehabilitation in its broadest sense. During treatment, cancer control is action taken to reduce symptoms, improve quality of life, and make it possible for the patient to complete the planned course of treatment and regain a life style as close to the premorbid state as possible.
CANCER
INCIDENCE
Cancer is a group of diseases that vary greatly in incidence and in prognosis. The incidence of three cancers that are specific to women and the overall incidence of cancer in women in six countries around the Pacific are shown in Tables 1-7. There is variety, not only between countries, but within countries.2,3 These tables give some idea of the scope and diversity of the problem. 64
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Table 1. CANCER INCIDENCE IN THE UNITED STATES BETWEEN 1983 AND 1987 AMONG ALL AGES BY RACE* (AVERAGE ANNUAL INCIDENCE PER lOO,OOO)*
White Black *From the Surveillance, base are a representative
Breast
Uterus
89.2 65.0
19.2 9.7
Epidemiology and End sample of an estimated
All
Cervix
277.0 227.1
7.3 11.7
Results database.” The geographic 9 6% of the U.S. populations.
areas
covered
by the data-
This paper makes no attempt to present reasons for the diversity of incidence and no attempt to go into the possible etiology of cancer in these different countries and cultures. The etiology of cancer is complex. It is theorized that diet and other environmental factors play an important role in carcinogenesis. There are many competing hypotheses that try to explain the variation in incidence among different populations. Some ascribe the differences to environmental carcinogens, others to differences in diet, in health practices, in hygiene, in genetic predisposition, etc. Other researchers have pointed out that cancer incidence in a given cultural group that moves to a different country or cultural area comes to be similar to the indigent group as the immigrants become more acculturated and take on the dietary habits and life style of the new country. The frequent example used is the incidence of breast cancer in Japan versus the incidence of breast cancer in second generation Japanese women living in the United States. Causation hypotheses directly influence the approaches to be taken in cancer control research and in the translation of research findings to clinical practice or to public health initiatives.
CANCER
PREVENTION
A major part of cancer control is prevention’-prevention of disease and of treatment-associated morbidity. In order to have an impact on overall cancer incidence, it is logical to target prevention to the most prevalent cancers. Prevention research targets healthy people, who may or may not be at high risk for a specific cancer. Alternatively, a group of diseases, one of which is cancer, may be the target of a single intervention. The largest clinical trial for the prevention of breast cancer is the Breast Cancer Prevention Trial.” This trial targets 16,000 women at high risk for breast cancer, ie, women age 60 or older or younger women of equivalent or higher risk than that calculated for the 60 year old. The agent being tested is tamoxifen. The basis for the trial was the finding that, in an adjuvant trial for Table 2. CANCER INCIDENCE IN LOS ANGELES COUNTY BETWEEN 1983 AND 1987 AMONG ALL AGES BY RACE/ETHNICITY2 (AVERAGE ANNUAL INCIDENCE PER 100,000)” Breast
Black Japanese Chinese Filipino Other white
73.1 72.7 48.7 52.2 88.5
*From the Surveillance, Epidemiology, database are a representative sample
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Uterus
Cervix
10.4 12.0 7.1 9.1 19.0
12.2 4.5 12.3 8.4 7.2
and End Results database.’ The geographic of an estimated 9.6% of the U.S. population.
All
257.1 219.3 179.7 153.4 273.6 areas
covered
by
the
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Table 3. AGE-ADJUSTED (WORLD POPULATION STANDARD) CANCER INCIDENCE BETWEEN 1983 AND 1986 IN HAWAII BY ETHNICITY AND SEX25 (PER 100,000) Ethnic Group
Male
Female
Caucasian Hawaiian Japanese Filipino Chinese
370.8 296.0 251.3 204.9 203.7
339.7 274.7 203.0 212.0 236.8
breast cancer, women who were on maintenance doses of tamoxifen had a reduced rate of new cancers in the contralateral breast. Another trial of tamoxifen is being done in a sample of women with proliferative breast disease.’ 4-HPR is an agent being studied to see if progression and recurrence of disease can be prevented in women who are status post-stage I breast cancer.’ There are currently five trials underway for the prevention of cervical cancer.’ Some of the agents being examined are B-trans retinoic acid, folic acid and J3carotene. Additional trials consisting of dietary and life style changes with or without a prevention agent are also underway. The Harvard Women’s Health Trial uses vitamin E, aspirin, and B carotene versus placebo. The subjects are nurses and professional women. The Women’s Health Initiative5 plans to enroll approximately 63,000 postmenopausal women and to follow them over 9 years. Three interventions, alone or in combination, are being tested: the effect of a low-fat diet on the prevention of breast and colon cancer and heart disease, the effect of hormone replacement therapy on the prevention of coronary heart disease and osteoporotic fractures, and the effect of calcium and vitamin D supplements on the prevention of fractures and colon cancer. Table 4. CANCER INCIDENCE AT ALL SITES BETWEEN 1983 AND 1987 AMONG ALL AGES2 (AVERAGE ANNUAL INCIDENCE PER 100,000 WOMEN) Location/Ethnic
Group
Australia Capital territory New South Wales China Qedang City Shanghai Teanjin Hong Kong
incidence 232.7 230.9 107.5 147.5 145.1 224.7
Japan Hiroshima Nagaski Osaka New Zealand (non-Maori) Philippines Manila Singapore Chinese Malay Indian
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183.1 170.7 156.1 248.0 204.6 193.0 120.8 149.2
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Table 5. CERVICAL CANCER AMONG ALL AGES’ 100,000 WOMEN) Location/Ethnic
INCIDENCE (AVERAGE
Group
Australia Capital territory New South Wales China Qedang City Shanghai Teanjin Hong Kong
Japan Hiroshima Nagaski Osaka New Zealand (non-Maori) Philippines Manila Singapore Chinese Malay Indian
BETWEEN 1983 AND ANNUAL INCIDENCE
1987 PER
Incidence
9.4 11.0 3.7 4.3 8.9 19.2 18.5 13.2 13.2 11.8 25.8 17.5 8.8 12.7
One of the difficulties in the design and implementation of these large prevention trials that use healthy women as subjects is the recruitment and retention of minority women. It is important that representative samples of all of the minorities and subpopulations of those minorities be included in sufTable 6. UTERINE CANCER INCIDENCE BETWEEN 1983 AND 1987 AMONG ALL AGES’ (AVERAGE ANNUAL INCIDENCE PER 100,000 WOMEN) Location/Ethnic
Group
Australia Capital territory New South Wales China Qedang City Shanghai Teanjin Hong Kong
Japan Hiroshima Nagaski Osaka New Zealand (non-Maori) Philippines Manila Singapore Chinese Malay Indian
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Incidence
7.4 8.6 0.4 2.8 2.8 6.9 4.9 2.7 2.7 9.3 4.3 6.4 4.2 3.2
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INCIDENCE BETWEEN AMONG ALL AGES* (AVERAGE ANNUAL 100,000 WOMEN)
Table 7. BREAST CANCER
Location/Ethnic
1983 AND 1987 INCIDENCE PER Incidence
Group
Australia Capital territory New South Wales China Qedang City Shanghai Teanjin Hong Kong
59.0 59.6 9.5 21.2 21.5 32.3
Japan 25.2 25.0 21.9 64.3
Hiroshima Nagaski Osaka New Zealand (non-Maori) Philippines Manila Singapore Chinese Malay Indian
49.7 31.6 23.2 34.0
ficient numbers to provide a meaningful statistical analysis of the data. The types of problems in the design of and recruitment to these trials are the same as those to be addressed when designing trials and recruitment strategies in any of the Pacific Basin countries or for a specific cultural group in its home territory or in a country other than its native one.6 In a dietary-based intervention trial, for example, is the research diet adaptable to the food preferences and cooking style of the subjects? What are the added costs or other barriers presented by the need to comply with the study design?
EARLY
DETECTION
AND
SCREENING
The purpose of early detection and screening in cancer control is to decrease mortality and morbidity by beginning treatment before there is a significant tumor burden. The most common cancer screening and early detection activities are mammography and Papanicolaou smears. Some new approaches include genetic screening (colon and breast) and tumor markers (prostatespecific antigen, carcinoembryonic antigen, etc). Tumor markers are most often used to monitor response to treatment. Efforts are being made to develop markers of precancerous transformation to be used as very early detection. If precancerous transformations are detected by biomarkers and effective prevention agents are identified, then interventions can be proposed that are tailored to the individual. Genetic screening to identify cancer risk has its own associated psychological morbidity. Science will soon be able to identify individual carriers of the genetic marker or defect for a specific cancer.7 Specific recommendations for action to correct the gene defect are not possible in most instances. Definite determination of absolute risk is not possible at this time, nor can genetic testing determine when an individual will develop the cancer. Genetic testing is currently an area of great concern for bi0ethics.s
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MORBIDITY
CONTROL
Issues to consider in the prevention or limitation of disease- and treatmentassociated morbidity include symptom management, quality of life, and psychosocial responses. This is the area in which nurses are having the greatest impact. It is also an area in which cultural and ethnic differences probably have the greatest influence on what we, as health care professionals, do, how we do it, and how the patient responds to our efforts. Beliefs about health and attitudes toward fate, the will of God, and social conventions play important roles in how persons from a given cultural environment will respond to illness.9P12 Cancer may have a special response set that is fatalistic or seen as an act of God in response to some shortcoming or sin. These beliefs may make resistance to accepting treatment the expected behavior. These beliefs may also cause the person to delay acknowledging the disease and seeking treatment until the only option is supportive care, and this may not be acceptable either. Quality of life is a concept that drives much of the effort for symptom control and the decisions about treatment choices based on efficacy versus toxicity. Yet quality of life is a concept that does not exist in some cultures. It is important to know what motivates people to seek and maintain health when planning any intervention.‘“,14 Many interventions that have been proposed to reduce psychological morbidity in cancer have been aimed at fostering adaptation to life with cancer or life after cancer. The acceptable level of symptoms, visual manifestation of disease, or physical limitations resulting from the disease or its treatment may vary greatly from one ethnic/cultural group to another. The implication is that before designing interventions or choosing a therapeutic approach, the practitioner must be very familiar with the cultural norms, taboos, religious practices, sick-role behaviors, and acceptable ways to show responses to pain, sickness, etc, in the given cultural/ethnic group. This has to be done without buying into stereotypes that may not be accurate or that may have been attenuated by acculturation to the country and culture of immigration.‘5-1y Table 8 lists common Asian beliefs and practices.“’ Can all Asians be clumped this way? How widespread and ingrained are these beliefs? How long and strongly do they persist after an individual has moved away from the home culture? How can the knowledge that these beliefs have some relevance in the formation of an individual’s response to illness be incorporated in a plan of care that is likely to be responsive to that individual’s situation?
CULTURAL
ISSUES
IN ASSESSMENT
AND
INTERVENTIONS
These considerations lead to the central issue of culturally appropriate assessment and interventions. This is a very complex area that is beginning to Table 8. COMMON
ASIAN
BELIEFS AND
PRACTICES17*22
0 Respect for authority l Respect for elders l Self control l Stoicism l Humility l Fear of hospitalization l Family orientation l Fear of bodily intrusive procedures l Use of traditional medicines
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receive attention beyond the literature of cultural anthropology. Our colleagues who have studied cultures and how people express themselves, beliefs about health, expectations of appropriate illness behaviors, etc, have provided us with the beginnings of knowledge we can use in developing effective and appropriate cancer-control interventions. 15*19,21 A first step is to understand what “health’ means in a specific culture. Is it the ability to continue to do work? Is it to feel good? What is the cultural norm or expectation of how an individual can express the subjective experience of “not feeling well”? Is it considered proper to express pain or is stoicism the expectation? It is vital to know the subtle variations in what the accepted behavior is if one is to make an accurate assessment of the situation. Another significant area is the interplay of health and religion in the culture. What are accepted or taboo practices related to the human body and its functions? What is acceptable physical touching by a health practitioner? What kinds of questions can you ask or not ask? A schema base on Fong’s work, the CONFHER model, is presented in Table 9 as a guide to cultural assessment.22 This model can provide guidance for practitioners and researchers who are coming into contact with cultural/ethnic groups that are foreign to them or in situations in which they are somewhat familiar with beliefs and values but want to individualize the information for a specific patient. Researchers have other problems when they are working across cultures or in a mixed cultural environment. One of the main stumbling blocks is usually language. This is especially true when designing a study in which the goal is to have results that can be compared with other research findings but not to go through the agony of designing and developing a new set of measures. The method that is often advised is to use a standardized measure and translate it or adapt it to the current group.‘5,‘9 Adaptation may be to put it into a different form of the original language, a regional dialect for example,
Table 9. A CULTURAL Cultural
PROFILE-FONG’S
Component
Variable
Communication style preference
Orientation
Nutrition Family relationships
Health
Education
Religion Reprinted
70
with
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permission
CANCER
from
Fong
CONTROL
CM.
Ethnicity
INTERVENTIONS
Language and dialect Nonverbal behaviors Social customs Ethnic identity Acculturation Value orientation Symbolism of food Preference and taboos Family structure and roles Family dynamics and decision making styles Life style and living arrangements Alternative health care Health, crisis, and illness beliefs Response to pain and hospitalization Disease predisposition and resistance Learning style Informal and formal education Occupation and socioeconomic level Preference Beliefs, rituals, and taboos and
nursing
practice.
Top Clin
Nurs
1985;7:1-10.
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or to make a picture version for nonliterate subjects or for use with a cultural/ ethnic group that does not relate well to a written language. There is extensive literature on this topic. This process is not as simple as a direct translation of language. The debate that rages among people in the field is that of linguistic translation versus conceptual translation. The predominant view currently seems to favor conceptual equivalence, in which the idea is the same, but the words used to express it may be very different. This is especially true if words for an idea do not exist in the target language. Any changes to a standardized measure require that reliability and validity be established for the new version. In the case of a translation or adaptation to another language or culture, equivalence of the two versions is also important. Cancer control across cultures is complex, but not impossible.23’24 The challenges of working with cultural diversity are exciting but demanding. It cannot be assumed that an approach that worked in one group will translate easily to another culture. This paper has probably raised more questions and issues than it has answered. This is because questions and issues have to be addressed from knowledge of the cultural/ethnic group being targeted. If you are a part of that group this will be easier, but it will not be accomplished without effort. If you are an outsider to the group, then you must involve members of that group who are informed and can speak for the group in all involvement through phases of your project from day one.24 Community consultation, focus groups, or any other means appropriate to that culture will be an important factor in the success of cancer control efforts.
REFERENCES 1. Division of Cancer Prevention and Control. 92 Annual report. Bethesda (MD): National Cancer Institute, 1992. 2. Parkin DM, Muir CS, Whelan SL, Gao Y-T, Ferlag J, Powell J (eds). Cancer incidence in five continents, vol VI [Pub. No. 1201. Lyon (France): IARC Scientific Publications, 1992. 3. Miller BA, Ries LAG, Hankey B, et al (eds). SEER cancer statistics review 19731990 [NIH Pub. No. 93-27891. Bethesda (MD): U.S. Dept. of Health and Human Services, National Cancer Institute, 1993. 4. Varricchio C, Johnson K. The use of tamoxifen in prevention and treatment of breast cancer. Curr Issue Cancer Nurs Pratt Update 1993;2:1-10. 5. Office of Research in Women’s Health. Overview statement, Women’s Health Initiative. Bethesda (MD): National Institutes of Health, 1994. 6. Varricchio C. Measurement issues concerning linguistic translations. In: FrankStromborg M, Olsen S (eds). Instruments for clinical nursing research, 2nd ed. Boston (MA): Jones and Bartlett Publications, 1995. 7. Weinberg RA. Oncogenes and tumor suppressor genes. CA 1994;44:16&70. 8. Lerman C, Rimer BK, Engstrom PF. Cancer risk notification: psychosocial and ethical implications. J Clin Oncol 1990;9:127%82.
9. Harwood A. Ethnicity and medical care. Cambridge (MA): Harvard University Press, 1981. 10. Henderson G, Primeaux M. Transcultural health care. Menlo Park (CA): AddisonWesley Publishing Co., 1981. 11. Gaston-Johansson F, Albert M, Fagan E, Zimmerman L. Similarities in pain descriptions of four different ethnic-culture groups. J Pain Sympt Management 1990;5:94-100. 12. Park KB, Upshaw HS, Koh SD. East Asians’ responses to western health items. J Cross Cultural Psycho1 1988;12:51-64. 13. Marshall PA. Cultural influences of perceived quality of life. Semin Oncol Nurs 1990;6:27&84. 14. Varricchio C. Relevance of quality of life to clinical nursing practice. Semin Oncology Nurs 1990;6:25!%9. 15. Lonner WJ, Berry JW. Field methods in cross-cultural research. Beverly Hills (CA): Sage Publications, 1986.
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16. Nielsen BB, McMillan S, Diaz E. Instruments that measure beliefs about cancer from a cultural perspective. Cancer Nurs 1992;15:109-15. 17. Olsen SJ, Frank-Stromborg M. Cancer prevention and early detection in ethnically diverse populations. Semin Oncol Nurs 1993;3:198209. 18. Roman-Franc0 AA. Some thoughts on the sociology of cancer: a Hispanic perspective. Int J Cell Cloning 1990;8:2-9. 19. Marin G, Marin BVO. Research with Hispanic populations. Newbury Park (NJ): Sage Publications, 1991. 20. Lasky EM, Martz CH. The Asian/Pacific Islander population in the United States: cultural perspectives and their relationship to cancer prevention and early detection. In: Frank-Stromborg M, Olsen S (eds). Cancer prevention in minority populations. St. Louis (MO): Mosby, 1993:8&112. 21. Frank-Stromborg M, Olsen SJ. Cancer prevention in minority populations. St Louis (MO): Mosby, 1993. 22. Fong CM. Ethnicity and nursing practice. Top Clin Nurs 1985;7:1-10. 23. Cohen MZ, Tripp-Reimer T. Research in cultural diversity. West J Nurs Res 1989; 11:4957. 24. McCabe MS, Varricchio CG, Padberg RM. Efforts to recruit the economically disadvantaged to national clinical trials. Semin Oncol Nurs 1994;10:1239. 25. Hussey LOL, Itano JK, Taoka KN, Houng YC. Cancer prevention and early detection in native Hawaiians. In: Frank-Stromborg M, Olsen SJ (eds). Cancer prevention in minority populations. St Louis (MO): Mosby, 1993:11438.
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G. Varricchio,
of Cancer Prevention Cancer Institute Maryland
DSN, RN, OCN,
FAAN
and Control
T
his paper addresses the topic of cancer control for women in the Pacific Basin. Cancer control is defined and a brief overview of the incidence of breast, cervical, and uterine cancers and overall cancer rates for women in various Pacific Basin countries, compared with the incidence for these groups in Hawaii and in Los Angeles County, is presented. This information provides a frame of reference for discussion of issues related to cancer prevention, early detection/screening efforts, and symptom control in culturally diverse groups.
CANCER
CONTROL
Cancer control is the reduction of cancer incidence, morbidity, and mortality through an orderly sequence from research on interventions and their impact in defined populations to the broad, systematic application of the research results. This is the definition used by the Division of Cancer Prevention and Control of the National Cancer Institute.’ Cancer control is interpreted to be any action taken to prevent cancer, to promote the early detection of cancer, and to provide supportive care throughout treatment to reduce morbidity and promote rehabilitation in its broadest sense. During treatment, cancer control is action taken to reduce symptoms, improve quality of life, and make it possible for the patient to complete the planned course of treatment and regain a life style as close to the premorbid state as possible.
CANCER
INCIDENCE
Cancer is a group of diseases that vary greatly in incidence and in prognosis. The incidence of three cancers that are specific to women and the overall incidence of cancer in women in six countries around the Pacific are shown in Tables 1-7. There is variety, not only between countries, but within countries.2,3 These tables give some idea of the scope and diversity of the problem. 64
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INTERVENTIONS
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Vol.
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1995
Table 1. CANCER INCIDENCE IN THE UNITED STATES BETWEEN 1983 AND 1987 AMONG ALL AGES BY RACE* (AVERAGE ANNUAL INCIDENCE PER lOO,OOO)*
White Black *From the Surveillance, base are a representative
Breast
Uterus
89.2 65.0
19.2 9.7
Epidemiology and End sample of an estimated
All
Cervix
277.0 227.1
7.3 11.7
Results database.” The geographic 9 6% of the U.S. populations.
areas
covered
by the data-
This paper makes no attempt to present reasons for the diversity of incidence and no attempt to go into the possible etiology of cancer in these different countries and cultures. The etiology of cancer is complex. It is theorized that diet and other environmental factors play an important role in carcinogenesis. There are many competing hypotheses that try to explain the variation in incidence among different populations. Some ascribe the differences to environmental carcinogens, others to differences in diet, in health practices, in hygiene, in genetic predisposition, etc. Other researchers have pointed out that cancer incidence in a given cultural group that moves to a different country or cultural area comes to be similar to the indigent group as the immigrants become more acculturated and take on the dietary habits and life style of the new country. The frequent example used is the incidence of breast cancer in Japan versus the incidence of breast cancer in second generation Japanese women living in the United States. Causation hypotheses directly influence the approaches to be taken in cancer control research and in the translation of research findings to clinical practice or to public health initiatives.
CANCER
PREVENTION
A major part of cancer control is prevention’-prevention of disease and of treatment-associated morbidity. In order to have an impact on overall cancer incidence, it is logical to target prevention to the most prevalent cancers. Prevention research targets healthy people, who may or may not be at high risk for a specific cancer. Alternatively, a group of diseases, one of which is cancer, may be the target of a single intervention. The largest clinical trial for the prevention of breast cancer is the Breast Cancer Prevention Trial.” This trial targets 16,000 women at high risk for breast cancer, ie, women age 60 or older or younger women of equivalent or higher risk than that calculated for the 60 year old. The agent being tested is tamoxifen. The basis for the trial was the finding that, in an adjuvant trial for Table 2. CANCER INCIDENCE IN LOS ANGELES COUNTY BETWEEN 1983 AND 1987 AMONG ALL AGES BY RACE/ETHNICITY2 (AVERAGE ANNUAL INCIDENCE PER 100,000)” Breast
Black Japanese Chinese Filipino Other white
73.1 72.7 48.7 52.2 88.5
*From the Surveillance, Epidemiology, database are a representative sample
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Uterus
Cervix
10.4 12.0 7.1 9.1 19.0
12.2 4.5 12.3 8.4 7.2
and End Results database.’ The geographic of an estimated 9.6% of the U.S. population.
All
257.1 219.3 179.7 153.4 273.6 areas
covered
by
the
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Table 3. AGE-ADJUSTED (WORLD POPULATION STANDARD) CANCER INCIDENCE BETWEEN 1983 AND 1986 IN HAWAII BY ETHNICITY AND SEX25 (PER 100,000) Ethnic Group
Male
Female
Caucasian Hawaiian Japanese Filipino Chinese
370.8 296.0 251.3 204.9 203.7
339.7 274.7 203.0 212.0 236.8
breast cancer, women who were on maintenance doses of tamoxifen had a reduced rate of new cancers in the contralateral breast. Another trial of tamoxifen is being done in a sample of women with proliferative breast disease.’ 4-HPR is an agent being studied to see if progression and recurrence of disease can be prevented in women who are status post-stage I breast cancer.’ There are currently five trials underway for the prevention of cervical cancer.’ Some of the agents being examined are B-trans retinoic acid, folic acid and J3carotene. Additional trials consisting of dietary and life style changes with or without a prevention agent are also underway. The Harvard Women’s Health Trial uses vitamin E, aspirin, and B carotene versus placebo. The subjects are nurses and professional women. The Women’s Health Initiative5 plans to enroll approximately 63,000 postmenopausal women and to follow them over 9 years. Three interventions, alone or in combination, are being tested: the effect of a low-fat diet on the prevention of breast and colon cancer and heart disease, the effect of hormone replacement therapy on the prevention of coronary heart disease and osteoporotic fractures, and the effect of calcium and vitamin D supplements on the prevention of fractures and colon cancer. Table 4. CANCER INCIDENCE AT ALL SITES BETWEEN 1983 AND 1987 AMONG ALL AGES2 (AVERAGE ANNUAL INCIDENCE PER 100,000 WOMEN) Location/Ethnic
Group
Australia Capital territory New South Wales China Qedang City Shanghai Teanjin Hong Kong
incidence 232.7 230.9 107.5 147.5 145.1 224.7
Japan Hiroshima Nagaski Osaka New Zealand (non-Maori) Philippines Manila Singapore Chinese Malay Indian
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183.1 170.7 156.1 248.0 204.6 193.0 120.8 149.2
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Table 5. CERVICAL CANCER AMONG ALL AGES’ 100,000 WOMEN) Location/Ethnic
INCIDENCE (AVERAGE
Group
Australia Capital territory New South Wales China Qedang City Shanghai Teanjin Hong Kong
Japan Hiroshima Nagaski Osaka New Zealand (non-Maori) Philippines Manila Singapore Chinese Malay Indian
BETWEEN 1983 AND ANNUAL INCIDENCE
1987 PER
Incidence
9.4 11.0 3.7 4.3 8.9 19.2 18.5 13.2 13.2 11.8 25.8 17.5 8.8 12.7
One of the difficulties in the design and implementation of these large prevention trials that use healthy women as subjects is the recruitment and retention of minority women. It is important that representative samples of all of the minorities and subpopulations of those minorities be included in sufTable 6. UTERINE CANCER INCIDENCE BETWEEN 1983 AND 1987 AMONG ALL AGES’ (AVERAGE ANNUAL INCIDENCE PER 100,000 WOMEN) Location/Ethnic
Group
Australia Capital territory New South Wales China Qedang City Shanghai Teanjin Hong Kong
Japan Hiroshima Nagaski Osaka New Zealand (non-Maori) Philippines Manila Singapore Chinese Malay Indian
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Incidence
7.4 8.6 0.4 2.8 2.8 6.9 4.9 2.7 2.7 9.3 4.3 6.4 4.2 3.2
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INCIDENCE BETWEEN AMONG ALL AGES* (AVERAGE ANNUAL 100,000 WOMEN)
Table 7. BREAST CANCER
Location/Ethnic
1983 AND 1987 INCIDENCE PER Incidence
Group
Australia Capital territory New South Wales China Qedang City Shanghai Teanjin Hong Kong
59.0 59.6 9.5 21.2 21.5 32.3
Japan 25.2 25.0 21.9 64.3
Hiroshima Nagaski Osaka New Zealand (non-Maori) Philippines Manila Singapore Chinese Malay Indian
49.7 31.6 23.2 34.0
ficient numbers to provide a meaningful statistical analysis of the data. The types of problems in the design of and recruitment to these trials are the same as those to be addressed when designing trials and recruitment strategies in any of the Pacific Basin countries or for a specific cultural group in its home territory or in a country other than its native one.6 In a dietary-based intervention trial, for example, is the research diet adaptable to the food preferences and cooking style of the subjects? What are the added costs or other barriers presented by the need to comply with the study design?
EARLY
DETECTION
AND
SCREENING
The purpose of early detection and screening in cancer control is to decrease mortality and morbidity by beginning treatment before there is a significant tumor burden. The most common cancer screening and early detection activities are mammography and Papanicolaou smears. Some new approaches include genetic screening (colon and breast) and tumor markers (prostatespecific antigen, carcinoembryonic antigen, etc). Tumor markers are most often used to monitor response to treatment. Efforts are being made to develop markers of precancerous transformation to be used as very early detection. If precancerous transformations are detected by biomarkers and effective prevention agents are identified, then interventions can be proposed that are tailored to the individual. Genetic screening to identify cancer risk has its own associated psychological morbidity. Science will soon be able to identify individual carriers of the genetic marker or defect for a specific cancer.7 Specific recommendations for action to correct the gene defect are not possible in most instances. Definite determination of absolute risk is not possible at this time, nor can genetic testing determine when an individual will develop the cancer. Genetic testing is currently an area of great concern for bi0ethics.s
68
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Issues to consider in the prevention or limitation of disease- and treatmentassociated morbidity include symptom management, quality of life, and psychosocial responses. This is the area in which nurses are having the greatest impact. It is also an area in which cultural and ethnic differences probably have the greatest influence on what we, as health care professionals, do, how we do it, and how the patient responds to our efforts. Beliefs about health and attitudes toward fate, the will of God, and social conventions play important roles in how persons from a given cultural environment will respond to illness.9P12 Cancer may have a special response set that is fatalistic or seen as an act of God in response to some shortcoming or sin. These beliefs may make resistance to accepting treatment the expected behavior. These beliefs may also cause the person to delay acknowledging the disease and seeking treatment until the only option is supportive care, and this may not be acceptable either. Quality of life is a concept that drives much of the effort for symptom control and the decisions about treatment choices based on efficacy versus toxicity. Yet quality of life is a concept that does not exist in some cultures. It is important to know what motivates people to seek and maintain health when planning any intervention.‘“,14 Many interventions that have been proposed to reduce psychological morbidity in cancer have been aimed at fostering adaptation to life with cancer or life after cancer. The acceptable level of symptoms, visual manifestation of disease, or physical limitations resulting from the disease or its treatment may vary greatly from one ethnic/cultural group to another. The implication is that before designing interventions or choosing a therapeutic approach, the practitioner must be very familiar with the cultural norms, taboos, religious practices, sick-role behaviors, and acceptable ways to show responses to pain, sickness, etc, in the given cultural/ethnic group. This has to be done without buying into stereotypes that may not be accurate or that may have been attenuated by acculturation to the country and culture of immigration.‘5-1y Table 8 lists common Asian beliefs and practices.“’ Can all Asians be clumped this way? How widespread and ingrained are these beliefs? How long and strongly do they persist after an individual has moved away from the home culture? How can the knowledge that these beliefs have some relevance in the formation of an individual’s response to illness be incorporated in a plan of care that is likely to be responsive to that individual’s situation?
CULTURAL
ISSUES
IN ASSESSMENT
AND
INTERVENTIONS
These considerations lead to the central issue of culturally appropriate assessment and interventions. This is a very complex area that is beginning to Table 8. COMMON
ASIAN
BELIEFS AND
PRACTICES17*22
0 Respect for authority l Respect for elders l Self control l Stoicism l Humility l Fear of hospitalization l Family orientation l Fear of bodily intrusive procedures l Use of traditional medicines
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receive attention beyond the literature of cultural anthropology. Our colleagues who have studied cultures and how people express themselves, beliefs about health, expectations of appropriate illness behaviors, etc, have provided us with the beginnings of knowledge we can use in developing effective and appropriate cancer-control interventions. 15*19,21 A first step is to understand what “health’ means in a specific culture. Is it the ability to continue to do work? Is it to feel good? What is the cultural norm or expectation of how an individual can express the subjective experience of “not feeling well”? Is it considered proper to express pain or is stoicism the expectation? It is vital to know the subtle variations in what the accepted behavior is if one is to make an accurate assessment of the situation. Another significant area is the interplay of health and religion in the culture. What are accepted or taboo practices related to the human body and its functions? What is acceptable physical touching by a health practitioner? What kinds of questions can you ask or not ask? A schema base on Fong’s work, the CONFHER model, is presented in Table 9 as a guide to cultural assessment.22 This model can provide guidance for practitioners and researchers who are coming into contact with cultural/ethnic groups that are foreign to them or in situations in which they are somewhat familiar with beliefs and values but want to individualize the information for a specific patient. Researchers have other problems when they are working across cultures or in a mixed cultural environment. One of the main stumbling blocks is usually language. This is especially true when designing a study in which the goal is to have results that can be compared with other research findings but not to go through the agony of designing and developing a new set of measures. The method that is often advised is to use a standardized measure and translate it or adapt it to the current group.‘5,‘9 Adaptation may be to put it into a different form of the original language, a regional dialect for example,
Table 9. A CULTURAL Cultural
PROFILE-FONG’S
Component
Variable
Communication style preference
Orientation
Nutrition Family relationships
Health
Education
Religion Reprinted
70
with
VARRICCHIO:
CONFHER
permission
CANCER
from
Fong
CONTROL
CM.
Ethnicity
INTERVENTIONS
Language and dialect Nonverbal behaviors Social customs Ethnic identity Acculturation Value orientation Symbolism of food Preference and taboos Family structure and roles Family dynamics and decision making styles Life style and living arrangements Alternative health care Health, crisis, and illness beliefs Response to pain and hospitalization Disease predisposition and resistance Learning style Informal and formal education Occupation and socioeconomic level Preference Beliefs, rituals, and taboos and
nursing
practice.
Top Clin
Nurs
1985;7:1-10.
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or to make a picture version for nonliterate subjects or for use with a cultural/ ethnic group that does not relate well to a written language. There is extensive literature on this topic. This process is not as simple as a direct translation of language. The debate that rages among people in the field is that of linguistic translation versus conceptual translation. The predominant view currently seems to favor conceptual equivalence, in which the idea is the same, but the words used to express it may be very different. This is especially true if words for an idea do not exist in the target language. Any changes to a standardized measure require that reliability and validity be established for the new version. In the case of a translation or adaptation to another language or culture, equivalence of the two versions is also important. Cancer control across cultures is complex, but not impossible.23’24 The challenges of working with cultural diversity are exciting but demanding. It cannot be assumed that an approach that worked in one group will translate easily to another culture. This paper has probably raised more questions and issues than it has answered. This is because questions and issues have to be addressed from knowledge of the cultural/ethnic group being targeted. If you are a part of that group this will be easier, but it will not be accomplished without effort. If you are an outsider to the group, then you must involve members of that group who are informed and can speak for the group in all involvement through phases of your project from day one.24 Community consultation, focus groups, or any other means appropriate to that culture will be an important factor in the success of cancer control efforts.
REFERENCES 1. Division of Cancer Prevention and Control. 92 Annual report. Bethesda (MD): National Cancer Institute, 1992. 2. Parkin DM, Muir CS, Whelan SL, Gao Y-T, Ferlag J, Powell J (eds). Cancer incidence in five continents, vol VI [Pub. No. 1201. Lyon (France): IARC Scientific Publications, 1992. 3. Miller BA, Ries LAG, Hankey B, et al (eds). SEER cancer statistics review 19731990 [NIH Pub. No. 93-27891. Bethesda (MD): U.S. Dept. of Health and Human Services, National Cancer Institute, 1993. 4. Varricchio C, Johnson K. The use of tamoxifen in prevention and treatment of breast cancer. Curr Issue Cancer Nurs Pratt Update 1993;2:1-10. 5. Office of Research in Women’s Health. Overview statement, Women’s Health Initiative. Bethesda (MD): National Institutes of Health, 1994. 6. Varricchio C. Measurement issues concerning linguistic translations. In: FrankStromborg M, Olsen S (eds). Instruments for clinical nursing research, 2nd ed. Boston (MA): Jones and Bartlett Publications, 1995. 7. Weinberg RA. Oncogenes and tumor suppressor genes. CA 1994;44:16&70. 8. Lerman C, Rimer BK, Engstrom PF. Cancer risk notification: psychosocial and ethical implications. J Clin Oncol 1990;9:127%82.
9. Harwood A. Ethnicity and medical care. Cambridge (MA): Harvard University Press, 1981. 10. Henderson G, Primeaux M. Transcultural health care. Menlo Park (CA): AddisonWesley Publishing Co., 1981. 11. Gaston-Johansson F, Albert M, Fagan E, Zimmerman L. Similarities in pain descriptions of four different ethnic-culture groups. J Pain Sympt Management 1990;5:94-100. 12. Park KB, Upshaw HS, Koh SD. East Asians’ responses to western health items. J Cross Cultural Psycho1 1988;12:51-64. 13. Marshall PA. Cultural influences of perceived quality of life. Semin Oncol Nurs 1990;6:27&84. 14. Varricchio C. Relevance of quality of life to clinical nursing practice. Semin Oncology Nurs 1990;6:25!%9. 15. Lonner WJ, Berry JW. Field methods in cross-cultural research. Beverly Hills (CA): Sage Publications, 1986.
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16. Nielsen BB, McMillan S, Diaz E. Instruments that measure beliefs about cancer from a cultural perspective. Cancer Nurs 1992;15:109-15. 17. Olsen SJ, Frank-Stromborg M. Cancer prevention and early detection in ethnically diverse populations. Semin Oncol Nurs 1993;3:198209. 18. Roman-Franc0 AA. Some thoughts on the sociology of cancer: a Hispanic perspective. Int J Cell Cloning 1990;8:2-9. 19. Marin G, Marin BVO. Research with Hispanic populations. Newbury Park (NJ): Sage Publications, 1991. 20. Lasky EM, Martz CH. The Asian/Pacific Islander population in the United States: cultural perspectives and their relationship to cancer prevention and early detection. In: Frank-Stromborg M, Olsen S (eds). Cancer prevention in minority populations. St. Louis (MO): Mosby, 1993:8&112. 21. Frank-Stromborg M, Olsen SJ. Cancer prevention in minority populations. St Louis (MO): Mosby, 1993. 22. Fong CM. Ethnicity and nursing practice. Top Clin Nurs 1985;7:1-10. 23. Cohen MZ, Tripp-Reimer T. Research in cultural diversity. West J Nurs Res 1989; 11:4957. 24. McCabe MS, Varricchio CG, Padberg RM. Efforts to recruit the economically disadvantaged to national clinical trials. Semin Oncol Nurs 1994;10:1239. 25. Hussey LOL, Itano JK, Taoka KN, Houng YC. Cancer prevention and early detection in native Hawaiians. In: Frank-Stromborg M, Olsen SJ (eds). Cancer prevention in minority populations. St Louis (MO): Mosby, 1993:11438.
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