Culture: The missing link in health research.

Culture is essential for humans to exist. Yet surprisingly little attention has been paid to identifying how culture works or developing standards to guide the application of this concept in health research. This paper describes a multidisciplinary effort to find consensus on essential elements of a definition of culture to guide researchers in studying how cultural processes influence health and health behaviors. We first highlight the lack of progress made in the health sciences to explain differences between population groups, and then identify 10 key barriers in research impeding progress in more effectively and rapidly realizing equity in health outcomes. Second, we highlight the primarily mono-cultural lens through which health behavior is currently conceptualized, third, we present a consensus definition of culture as an integrating framework, and last, we provide guidelines to more effectively operationalize the concept of culture for health research. We hope this effort will be useful to researchers, reviewers, and funders alike.

Distress and social dysfunction following prostate cancer treatment: a longitudinal cross-cultural comparison of Japanese and American men.

We assessed the impact of bother with urinary and bowel dysfunction on social activities among men in Japan and the United States following primary therapy for localized prostate cancer. In paired longitudinal outcomes studies, we measured general and disease-specific health-related quality of life in 400 Japanese and 427 American men who underwent radical prostatectomy or brachytherapy for localized prostate cancer. Outcomes included the social function domain of the Medical Outcomes Study Short Form-36 and the University of California, Los Angeles Prostate Cancer Index, all of which are scored 0-100. Participants completed the questionnaires before and 1, 12 and 24 months after treatment. Among men who reported any urinary bother, Japanese men had slightly better urinary function than American men (84 vs 77, P<0.01). Before brachytherapy, urinary bother was weakly correlated with social function in both the countries; after brachytherapy, urinary bother was strongly correlated with social function in American but not Japanese men. After brachytherapy, bowel dysfunction had a stronger correlation with social function in American than Japanese men (P<0.05). The bother associated with urinary and bowel dysfunction after surgery or brachytherapy for prostate cancer has a greater impact on social function in American men than in Japanese men.

Sexual function following radical prostatectomy: a prospective longitudinal study of cultural differences between Japanese and American men.

We conducted a cross-cultural comparison of the recovery of sexual function and bother during the first 2 years after radical prostatectomy (RP) between American and Japanese men. A total of 275 Japanese and 283 American men who underwent RP alone were prospectively enrolled into longitudinal cohort studies of health-related quality of life outcomes. Sexual function and bother (distress) were estimated with English and validated Japanese versions of the UCLA Prostate Cancer Index before RP and 1, 2-3, 4-6, 12, 18 and 24 months after RP. Each subject served as his own control. Japanese men reported lower sexual function scores at baseline, even after adjusted for age, prostate-specific antigen (PSA) and comorbidity (38 vs 61, P<0.001). The two groups had similar baseline sexual bother (70 vs 69, P=0.84). Japanese men had a smaller improvement in sexual function (beta=0.8 vs beta=5.3) and bother (beta=0.2 vs beta=2.9) over time than did the American men postoperatively, after adjusting for baseline score, age, baseline PSA and nerve-sparing. American men were more likely than Japanese men to regain their baseline sexual function by 24 months after surgery (hazard ratio (HR)=1.60; 95% confidence interval (CI)=1.06-2.42). In contrast, American men were less likely than Japanese men to return to baseline sexual bother (HR=0.57; 95% CI=0.44-0.75). This study demonstrates that Japanese and American men experience different patterns of recovery of their sexual function and bother after RP. Ethnicity may be a contributing factor.

The illness trajectory of elderly cancer patients across cultures: SIOG position paper.

BACKGROUND: Due to the aging of the population, cancer has become a health priority worldwide. While the number of elderly cancer patients is rapidly increasing, many barriers still exist to their effective management. Compared with their younger counterparts, the elderly are less likely to receive optimal medical, psychological and spiritual treatment provided in a culturally competent manner. DESIGN: The scanty literature on cultural competence in elderly cancer patients has been reviewed. Additional material has been selected based on the authors' clinical research in medical oncology and psycho-oncology, and on their scholarly work in anthropology and bioethics. RESULTS: The aging process is a synergistic product of biological, behavioral and social issues within a cultural context. Knowledge about how older people understand, perceive and experience their illness trajectory and make choices is essential to the planning and delivering of effective cancer care. CONCLUSION: This position paper of the SIOG Task Force on Cultural Competence in the Elderly creates awareness of the influence of culture in geriatric oncology. Negotiating cross-cultural issues in geriatric oncology helps managing possible conflicts between patients, families and physicians over differing health care values, beliefs, or practices. Possible areas of future scholarly investigation and clinical research are identified.

Negotiating cross-cultural issues at the end of life: "You got to go where he lives".

Culture fundamentally shapes how individuals make meaning out of illness, suffering, and dying. With increasing diversity in the United States, encounters between patients and physicians of different backgrounds are becoming more common. Thus the risk for cross-cultural misunderstandings surrounding care at the end of life is also increasing. Studies have shown cultural differences in attitudes toward truth telling, life-prolonging technology, and decision-making styles at the end of life. Using 2 case studies of patients, one of an African American couple in the southern United States and the other of a Chinese-American family in Hawaii, we outline some of the major issues involved in cross-cultural care and indicate how the patient, family, and clinician can navigate among differing cultural beliefs, values, and practices. Skilled use of cross-cultural understanding and communication techniques increases the likelihood that both the process and outcomes of care are satisfactory for all involved.

Using a stages of readiness model to address community capacity on tobacco control in the Asian American and Pacific Islander community.

OBJECTIVES: This paper describes the Asian Pacific Partners for Empowerment and Leadership (APPEAL) Stages of Community Readiness Model, a framework for assessing and evaluating tobacco control in the diverse Asian American and PaCific Islander (AAPI) communities. METHODS: This model extends the work of existing community capacity models by applying a "stage of readiness" continuum of the five stages of pre-contemplation, contemplation, preparation, action and maintenance in terms of developing, launching and sustaining AAPI tobacco control efforts. FINDINGS: The APPEAL Model allows communities to diagnose, then address their unique needs through appropriate technical assistance, training and resources. The APPEAL Model benefits both communities and funders through its ability to better understand their readiness to conduct tobacco control and have realistic expectations on the outcomes of those efforts. CONCLUSIONS: This paper describes the elements of the Readiness model for AAPIS, particularly those addressing research and data issues, current applications of the model in specific AAPI ethnic communities, and the lessons learned thus far regarding the model's applicability to, and support of, the development of AAPI tobacco control efforts nationally.

Gender differences in health perceptions and meaning in persons living with heart failure.

OBJECTIVE: The goal of this study was to determine whether gender differences exist in health perceptions, psychosocial adjustment to illness, and concerns related to illness in patients with heart failure (HF). DESIGN: Thirty-two patients (50% women) from a single outpatient HF clinic were asked to complete standardized tools to assess health perceptions and psychosocial adjustment to illness. Open-ended questions were used to obtain data on concerns related to HF. RESULTS: The women had higher health perceptions than men did; they also demonstrated better psychosocial adjustment to illness. The qualitative data further suggest that women ascribed more positive meanings to their illness than men did. CONCLUSION: The current study underscored the importance of gender differences in health perceptions related to HF. Patient teaching and counseling can be tailored to address the gender-specific concerns of men and women suffering with this condition to improve patient outcomes.

Is there a menopausal syndrome? Menopausal status and symptoms across racial/ethnic groups.

In recent years, research on menopausal symptomalogy has focused on identifying symptom groupings experienced by women as they progress from premenopausal to postmenopausal status. However, most of these studies have been conducted among Caucasian women from western cultures. This leaves open the question of whether the findings from these studies can be extended to women of other racial/ethnic groups or cultures. Furthermore, many of the previous studies have been conducted on relatively small samples. This paper addresses the diversity of the menopause experience by comparing symptom reporting in a large cross-sectional survey of women aged 40-55 years among racial/ethnic groups of women in the United States (Caucasian, African-American, Chinese, Japanese, and Hispanic). Evaluation of the extent to which symptoms group together and consistently relate to menopausal status across these five samples provides evidence for or against a universal menopausal syndrome. The specific research questions addressed in this paper are: (1) How does the factor structure of symptoms among mid-aged women compare across racial/ethnic groups? (2) Is symptom reporting related to race/ethnicity or menopausal status? and (3) Does the relation between menopausal status and symptoms vary across racial/ethnic groups? Analyses are based on 14,906 women who participated in the multi-ethnic, multi-race, multi-site study of mid-aged women called the Study of Women's Health Across the Nation (SWAN). Study participants completed a 15-min telephone or in-person interview that contained questions on a variety of health-related topics. Items of interest for these analyses include symptoms, menstrual history (to assess menopausal status), health status, and sociodemographics. Factor analysis results showed that across all five racial/ethnic groups, two consistent factors emerged; one consisting of clearly menopausal symptoms -- hot flashes and night sweats -- and the other consisting of psychological and psychosomatic symptoms. Results of regression analyses showed racial/ethnic differences in symptom reporting, as well as differences by menopausal status. Controlling for age, education, health, and economic strain, Caucasian women reported significantly more psychosomatic symptoms than other racial/ethnic groups. African-American women reported significantly more vasomotor symptoms. Perimenopausal women, hormone users, and women who had a surgical menopause reported significantly more vasomotor symptoms. All of these groups, plus postmenopausal women, reported significantly more vasomotor symptoms than premenopausal women. The pattern of results argues against a universal menopausal syndrome consisting of a variety of vasomotor and psychological symptoms.

Breast cancer screening among Hmong women in California.

BACKGROUND: Breast cancer is the leading cause of cancer incidence and mortality among Asian American and Pacific Islander (AAPI) women in the United States. Hmong women are among those at the highest risk for health problems, due to high rates of poverty, language isolation, and cultural barriers. METHOD: One-on-one survey interviews were completed with 201 Hmong women aged 20 years and older in Fresno, Long Beach, Orange County, and San Diego to determine their breast cancer screening behaviors--breast self-examination (BSE), clinical breast examination (CBE), and mammography. RESULTS: Overall, 51% of all respondents had ever performed BSE. Among respondents aged 40 or older, 52% had ever had a CBE and only 30% had ever had mammography. DISCUSSION: Significant correlates of CBE and mammography screening are presented, and implications of findings for research and education are discussed.

End-of-life decision making: a qualitative study of elderly individuals.

OBJECTIVE: To identify the desired features of end-of-life medical decision making from the perspective of elderly individuals. DESIGN: Qualitative study using in-depth interviews and analysis from a phenomenologic perspective. SETTING: A senior center and a multilevel retirement community in Los Angeles. PARTICIPANTS: Twenty-one elderly informants (mean age 83 years) representing a spectrum of functional status and prior experiences with end-of-life decision making. MAIN RESULTS: Informants were concerned primarily with the outcomes of serious illness rather than the medical interventions that might be used, and defined treatments as desirable to the extent they could return the patient to his or her valued life activities. Advanced age was a relevant consideration in decision making, guided by concerns about personal losses and the meaning of having lived a "full life." Decision-making authority was granted both to physicians (for their technical expertise) and family members (for their concern for the patient's interests), and shifted from physician to family as the patient's prognosis for functional recovery became grim. Expressions of care, both by patients and family members, were often important contributors to end-of-life treatment decisions. CONCLUSIONS: These findings suggest that advance directives and physician-patient discussions that focus on acceptable health states and valued life activities may be better suited to patients' end-of-life care goals than those that focus on specific medical interventions, such as cardiopulmonary resuscitation. We propose a model of collaborative surrogate decision making by families and physicians that encourages physicians to assume responsibility for recommending treatment plans, including the provision or withholding of specific life-sustaining treatments, when such recommendations are consistent with patients' and families' goals for care.

Asian American and Pacific Islander breast and cervical carcinoma screening rates and healthy people 2000 objectives.

BACKGROUND: Breast carcinoma is the number one cause of cancer-related mortality among Asian American and Pacific Islander (AAPI) women, and for certain subgroups cervical carcinoma is among the top three causes. Yet AAPI women have the lowest cancer screening and early detection rates of all ethnic groups. The practice of merging AAPI data hides significant variation among AAPI groups, and the groups at highest risk for late presentation of disease become invisible. To the authors' knowledge, this study is the first report of disaggregated national data for breast and cervical carcinoma screening in AAPI subpopulations. The authors used data from the National Health Interview Survey (NHIS 1993 and 1994) and evaluated major socioeconomic and access variables associated with screening practices. METHODS: Healthy People 2000 (HP2000) criteria were used to evaluate the most recent NHIS screening rates for AAPIs as one group and for six distinct subgroups compared with HP2000 criteria. The sample included 2756 non-Hispanic AAPI and 64,196 non-Hispanic white women age 18 years or older in the 1993 and 1994 NHIS. The effects of socioeconomic and access-to-care indicators on screening were explored. RESULTS: Breast and cervical carcinoma screening rates for AAPIs were below those for white women and well below national goals and guidelines. Lack of insurance, low income, and lack of a usual source of care had a significantly greater negative impact on AAPIs than on white women, indicating that AAPIs may be more vulnerable to structural barriers to cancer control efforts. CONCLUSIONS: AAPI women have very low rates of breast and cervical screening, which increases their chances of later stage disease presentation. To reach the Healthy People 2000 objectives, targeted efforts are needed to increase cancer screening among AAPI women overall and specific subgroups in particular.

Conceptualizing menopause and midlife: Chinese American and Chinese women in the US.

OBJECTIVES: The purpose of this qualitative project was to describe and examine expectations and experiences of menopause and midlife in pre- and postmenopausal Chinese American and Chinese women in the United States. METHODS: Four focus groups were formed from a total of 44 women: two groups of premenopausal Chinese/Chinese American women (one conducted in English and one in Cantonese) and two groups of postmenopausal Chinese/Chinese American women (one conducted in English and one in Cantonese). Qualitative data, in the form of transcripts, were interpreted using text-based content analysis. RESULTS: The major thematic findings were: meanings of menopause are inextricably bound with meanings of midlife; the borders and timing of the menopausal transition are ambiguous; the menopausal transition represents a natural progression through the life cycle; the expectations of the premenopausal women did not match the experiences of the postmenopausal women; menopause is viewed as a marker for aging; and the menopausal transition must be prepared for and managed. CONCLUSIONS: Study findings indicate that the participants did not share the strictly medicalized view of menopause as a discrete, biological entity. Menopause was typically described as a natural transition that was virtually interchangeable with midlife. While most of the participants characterized menopause as signaling the end of fertility and virtually synonymous with old age, some women described it as a new opportunity and a second chance at life. Participants felt a sense of their own agency in addressing what they viewed as a complex life stage, the experience of which could be manipulated.

Involving minority and underrepresented women in clinical trials: the National Centers of Excellence in Women's Health.

Recent attention to reducing health disparities among population groups has focused on the need to include in clinical studies, especially clinical trials, participants who represent the diversity of the populations to which study results will be applied. While scientists generally applaud the goal of broadening the characteristics of participants in clinical trials, they are faced with multiple challenges as they seek to include historically underrepresented populations in their research. This article examines the historical and sociocultural context of participation by underrepresented groups, especially women and minorities, in clinical trials, identifies major barriers and challenges facing researchers, and suggests strategies for meeting these challenges. The article draws upon the experiences of the investigators affiliated with the National Centers of Excellence of Women's Health (CoEs).

Improving the validity and generalizability of studies with underserved U.S. populations expanding the research paradigm.

The gap in cancer incidence and mortality between ethnic minority groups and European Americans in the U.S. is significant and growing. Compared with a drop in incidence and mortality rates in the U.S. since 1992, the rates for ethnic minority groups have increased or stayed the same. A major transformation in the predominantly deductive social and behavioral research paradigm in cancer is required to reduce these disparities in cancer outcomes and improve the quality of life for ethnic minority populations with cancer. This article highlights the fundamental changes that are required to transform the prevalent paradigm for social and behavioral research in cancer care from a monocultural, Eurocentric framework to a multicultural one. Use of the expanded framework would enhance the scientific rigor, validity, generalizability, applicability, and acceptability of multicultural behavioral research. The strategies developed from such research would have a greater likelihood of success in providing optimal cancer care for underserved populations and reduce the disparities in cancer outcomes between U.S. ethnic minority populations and the white population. Examples from the cancer literature are used to illustrate each of the seven steps of the expanded paradigm.

Attitudes toward menopause and aging across ethnic/racial groups.

OBJECTIVE: Attitudes have a potential role to play in the experience of menopause. The objective of this study was to examine the degree to which attitudes toward menopause and aging vary across ethnic groups and menopausal status (ie, premenopausal through postmenopausal). METHODS: More than 16,000 women were interviewed by telephone as part of the Study of Women's Health Across the Nation. They represented five ethnic/racial groups (African American, white, Chinese American, Japanese American, and Hispanic) from seven geographical sites (Boston, MA; Pittsburgh, PA; Chicago, IL; Michigan; New Jersey; and northern and southern California). RESULTS: African American women were significantly more positive in attitude. The least positive groups were the less acculturated Chinese American and Japanese American women. Menopausal status was not a consistent predictor of attitude across ethnic groups. CONCLUSIONS: In general, women's attitudes toward menopause range from neutral to positive. Ethnic groups within the United States vary slightly, but reliably, in their attitudes toward menopause and aging. Factors other than those directly associated with menopausal status seem to play a role in attitude.

An exploratory study of social support: a cross-cultural comparison of Chinese-, Japanese-, and Anglo-American breast cancer patients.

This paper investigated the nature of social support for Asian- and Anglo-American women post breast cancer treatment. Forty-six Anglo- and Asian-American (13 Anglo-American, 18 Chinese-American and 15 Japanese-American women) women were assessed 6 months to 3 years post-treatment. Assessments consisted of a semi-structured interview plus standardized psychological tests. Three major hypotheses were developed and tested in the study. Results showed: (1) Anglo-American women indicated a greater need for social support than either of the two Asian-American groups in 66% of the categories; (2) no differences were found between the three ethnic groups in receipt of emotional or tangible social support; and (3) the network size and composition differed significantly in 83% of the categories between the Anglo group and at least one of the Asian groups. These differences were in size, mode, and perceived adequacy of social support. Implications for culturally-based clinical practice which emerge from these findings are discussed.