Assessing the invariance of a culturally competent multi-lingual unmet needs survey for immigrant and Australian-born cancer patients: a Rasch analysis.

PURPOSE: The purpose of this study was to assess the invariance of a culturally competent multi-lingual unmet needs survey. METHODS: A cross-sectional study was conducted among immigrants of Arabic-, Chinese- and Greek-speaking backgrounds, and Anglo-Australian-born controls, recruited through Cancer Registries (n = 591) and oncology clinics (n = 900). The survey included four subscales, with newly developed items addressing unmet need in culturally competent health information and patient support (CCHIPS), and items adapted from existing questionnaires addressing physical and daily living (PDL), sexuality (SEX) and survivorship (SURV) unmet need. The survey was translated into Arabic, Chinese and Greek. Rasch analysis was carried out on the four domains. RESULTS: Whilst many items were mistargeted to less prevalent areas of unmet need, causing substantial floor effects in person estimates, reliability indices were acceptable. The CCHIPS domain showed differential item functioning (DIF) for cultural background and language, and the PDL domain showed DIF for treatment phase and gender. The results for SEX and SURV domains were limited by floor effects and missing responses. All domains showed adequate fit to the model after DIF was resolved and a small number of items were deleted. CONCLUSIONS: The study highlights the intricacies in designing a culturally competent survey that can be applied to culturally and linguistically diverse groups across different treatment contexts. Overall, the results demonstrate that this survey is somewhat invariant with respect to these factors. Future refinements are suggested to enhance the survey's cultural competence and general validity.

Immigrants' perceptions of the quality of their cancer care: an Australian comparative study, identifying potentially modifiable factors.

BACKGROUND: Recent data show a falling cancer mortality in the general population without a similar shift in immigrant outcomes, leading to a greater cancer burden and mortality for immigrants. Our aims were to compare perceived patterns of care in immigrants and native-born cancer patients. PATIENTS AND METHODS: This was a hospital-based sample of first-generation immigrants and Australian-born Anglo patients in the first year following diagnosis. It was restricted to Chinese, Arabic, or Greek speakers. Eligible participants, recruited via 16 oncology clinics, were over 18, with cancer (any type or stage), and having commenced treatment at least 1 month previously. Five hundred and seventy-one CALD patients (comprising 145 Arabic, 248 Chinese, and 178 Greek) and a control group of 274 Anglo-Australian patients participated. RESULTS: Immigrants had difficulty communicating with the doctor (73% versus 29%) and understanding the health system (38% versus 10%). Differences were found in 'difficulty knowing who to see' (P = 0.0002), 'length of time to confirm diagnosis' (P = 0.04), wanting more choice about a specialist and hospital (P < 0.0001); being offered the opportunity to see a counselor (P < 0.0001); and actually seeing one (P < 0.0001). There were no significant self-reported differences regarding how cancer was detected, time to see a health professional, or type first seen; however, immigrants reported difficulty knowing who to see. Previous studies showed differences in patterns of care according to socioeconomic status (SES) and educational level. Despite adjusting for age, sex, education, marital status, SES, time since diagnosis, and type of cancer, we did not find significant differences. Instead, we found that understanding of the health system and confidence understanding English were important factors. CONCLUSIONS: This study confirmed that immigrants with cancer perceive an inferior quality of cancer care. We highlight potentially modifiable factors including assistance in navigating the health system, translated information, and cultural competency training for health professionals.

Unmet needs in immigrant cancer survivors: a cross-sectional population-based study.

PURPOSE: Social suffering, language difficulties, and cultural factors may all make the cancer experience more difficult for immigrants. This study aimed to document unmet needs, and variables associated with these, in a population-based sample of first-generation immigrants and Anglo-Australians who had survived cancer. METHODS: Participants were recruited via Australian cancer registries. Eligible cancer survivors had a new diagnosis 1-6 years earlier and were aged between 18 and 80 years at diagnosis. Eligible immigrant participants and parents were born in a country where Arabic, Chinese (Mandarin, Cantonese, and other dialects), or Greek is spoken, and they spoke one of these languages. A random sample of English-speaking Anglo-Australian-born controls was recruited. RESULTS: Five hundred ninety-six patients (277 immigrants) were recruited to the study (response rate, 26%). Compared to Anglo-Australians, the adjusted odds ratio of Chinese immigrants for at least one unmet information/support need was 5.1 (95% CI 3.1, 8.3) and for any unmet physical need was 3.1 (95% CI 1.9, 5.1). For Greek, these were 2.0 (95% CI 1.1, 4.0) and 2.7 (95% CI 1.4, 5.2). Arabic patients had elevated, but not statistically significant, odds ratios compared to Anglo-Australians. Written information and having a specialist, support services, and other health professionals who spoke their language were in the top ten unmet needs amongst immigrants. CONCLUSION: Immigrant cancer survivors, several years after initial diagnosis, are more likely to have an unmet need for information or for help with a physical problem than Anglo-Australians. They strongly desire information and support in their own language.

Prognostic communication preferences of migrant patients and their relatives.

OBJECTIVES: Migrant patients comprise a significant proportion of Western oncologists' clientele. Although previous research has found that barriers exist in the communication between ethnically diverse patients and health professionals, little is known about their personal preferences for communication and information, or the concordance of views held between patients and family members. METHODS: Seventy-three patients (31 Anglo-Australians, and 20 Chinese, 11 Arabic and 11 Greek migrants) and 65 relatives (25 Anglo-Australians, and 23 Chinese, 11 Arabic and 7 Greek migrants) were recruited through nine Sydney oncology clinics. Following prognostic consultations, participants were interviewed in their preferred language about their experiences and ideals regarding information and communication with oncologists. Interviews were audio-taped, translated and transcribed, and then thematically analysed using N-Vivo software. RESULTS: Consistency was found in patient preferences, regardless of ethnicity, in that almost all patients preferred prognostic information to be delivered in a caring and personalised manner from an authoritative oncologist. Contrary to previous research, migrant patients often expressed a desire for prognostic disclosure. Discordance was found between migrant patients and their families. These families displayed traditional non-Western preferences of non-disclosure of prognosis and wanted to actively influence consultations by meeting with oncologists separately beforehand and directing the oncologists on what and how information should be conveyed to patients. CONCLUSIONS: Many of the communication issues facing patients in the metastatic cancer setting are shared amongst Anglo-Australian and migrant patients alike. Understanding the dynamics within migrant families is also an important component in providing culturally sensitive communication. Future directions for research are provided.

A cohort study of 20,822 young drivers: the DRIVE study methods and population.

BACKGROUND AND OBJECTIVE: Research on young drivers directly linking risk factors to serious injury and death outcomes is required. The DRIVE Study was established to facilitate this aim. This paper outlines the study methods and describes the population that has been recruited, in order to demonstrate that the necessary heterogeneity in risk factors has been attained. DESIGN, SETTING AND PARTICIPANTS: Drivers aged 17-24 years holding their first-stage provisional driver's licence from New South Wales, Australia, were recruited into a prospective cohort study. The participants were contacted by mail and asked to complete the study questionnaire at an online site or via a mailed questionnaire. Baseline data collection involved a questionnaire with questions to drivers about their training, risk perception, driver behavior, sensation-seeking behavior and mental health. Participants gave consent for prospective data linkage to their data on licensing, crashes and injuries, held in routinely collected databases. RESULTS: 20 822 drivers completed the baseline questionnaire, of whom 45.4% were men, 74.3% resided in capital cities and 25.7% in regional or remote areas. The recruited study population showed a wide variation in the risk factors under examination. For example, almost 40% of drivers reported drinking alcohol at hazardous levels and about 32% of participants seemed to be at a high or very high risk of psychological distress. Participants reported a mean of 67.3 h (median 60 h) of supervised driver training while holding their learner's permit. CONCLUSIONS: The DRIVE Study has a robust study design aimed at minimizing bias in the collection of outcome data. Analyses of baseline data showed substantial heterogeneity of risk factors in the study population. Subsequent prospective linkages comparing relative differences in exposures at baseline with the outcomes of interest have the potential to provide important new information needed to develop targeted interventions aimed at young drivers.

Depot fluphenazine decanoate and enanthate for schizophrenia.

BACKGROUND: Intramuscular injections (depot preparations) offer an advantage over oral medication for treating schizophrenia by reducing poor compliance. The benefits gained by long acting preparations, however, may be offset by a higher incidence of adverse effects. OBJECTIVES: To investigate the clinical effects of fluphenazine decanoate and enanthate. SEARCH STRATEGY: For this update we searched the Cochrane Schizophrenia Group's Register (May 2002). SELECTION CRITERIA: We considered all relevant randomised clinical controlled trials focusing on people with schizophrenia comparing fluphenazine decanoate or enanthate with placebo or oral anti-psychotics or other depot preparations. DATA COLLECTION AND ANALYSIS: We reliably selected, quality rated and data extracted studies. For dichotomous data we estimated relative risk (RR) with 95% confidence intervals (CI), and, where possible, the number needed to treat/harm (NNT/H). Analysis was by intention-to-treat. We used the weighted mean difference (WMD) for normal continuous data. Tests of heterogeneity and for publication bias were undertaken. MAIN RESULTS: This review now includes 70 randomised studies. Compared with placebo, fluphenazine decanoate did not reduce relapse over 6 months to 1 year, but one longer term study found that relapse was significantly reduced in the fluphenazine arm (n=54, RR 0.35, CI 0.2 to 0.6, NNT 2 CI 2 to 4). Fluphenazine decanoate does not reduce relapse more than oral neuroleptics (n=419, 6 RCTs, RR relapse 26-52 weeks 1.46 CI 0.8 to 2.8) or other depot antipsychotics (n=581, 11 RCTs, RR relapse 26-52 weeks 0.82 CI 0.6 to 1.2). Relapse rates over 6 months to 1 year were not significantly different between standard dosage of fluphenazine decanoate over a low dose group (n=523, 4 RCTs, RR 2.09 CI 0.6 to 7.1). Movement disorders were significantly less for people receiving fluphenazine decanoate compared with oral neuroleptics (n=259, 3 RCTs, RR 0.47 CI 0.2 to 0.9, NNT 14 CI 10 to 82). For fluphenazine enanthate there were limited data but no clear difference in global change (0 to 5 weeks) when compared with oral neuroleptics (n=31, 1 RCTs, RR 0.67 CI 0.3 to 1.7), and in relapse rates over 6-26 weeks between fluphenazine enanthate and other depots. Compared with placebo, giving the enanthate caused no more people to need need anticholinergic drugs (n=25, 1 RCT, RR 9.69 CI 0.6 to 163.0) and movement disorders, tardive dyskinesia, tremor, blurred vision and dry mouth were equally prevalent when enanthate was compared with other depot neuroleptics. AUTHORS' CONCLUSIONS: There are more data for fluphenazine decanoate than for the enanthate ester. Both are effective antipsychotic preparations. In the context of trials, there is little advantage of these depots over oral medications in terms of compliance but this is unlikely to be applicable to everyday clinical practice.

Growth and feeding practices of Vietnamese infants in Australia.

OBJECTIVE: To investigate the growth and feeding practices in first-generation Vietnamese infants living in Australia. DESIGN: Cohort study. SETTING: The study was conducted between 1999 and 2002 in Sydney. SUBJECTS: A total of 239 Vietnamese women were recruited randomly from antenatal clinics, and of these 210 were initially seen. During the first year, 20 cases (9.5%) were lost to follow-up. Data were collected at 0.5, 2, 4, 6, 9 and 12 months. RESULTS: Vietnamese infants were significantly longer and heavier than reference data (both P<0.0001). The Vietnamese infants had a significant decline in weight growth with age compared with reference data (P<0.001). The Vietnamese infants had marginally higher s.d. score for ideal weight for length than reference data (P=0.044). There was a significant decline in ideal weight for length with age compared with reference data (P=0.0065). Both parents were significantly shorter (mean s.d. height scores: -1.5+/-0.8 (mother) and -1.8+/-0.8 (father)) than reference data (P<0.001). The incidence of breast feeding was 79%, but half of the breast feeding women had stopped breast feeding by 3 months. A total of 162 (79.8%) infants were given infant formula within the first week, of whom 131 (80.1%) were fed infant formula within the first 24 h after birth. CONCLUSIONS: Vietnamese infants in this study had growth comparable with reference data despite their parents being shorter than reference data. Breast feeding duration was short with infant formula being introduced early.

Cultural aspects of cancer genetics: setting a research agenda.

BACKGROUND: Anecdotal evidence suggests that people from non-Anglo-Celtic backgrounds are under-represented at familial cancer clinics in the UK, the USA, and Australia. This article discusses cultural beliefs as a potential key barrier to access, reviews previous empirical research on cultural aspects of cancer genetics, draws implications from findings, and sets a research agenda on the inter-relationships between culture, cancer genetics, and kinship. METHODS: The CD-ROM databases MEDLINE, PsychLIT, CINAHL, and Sociological Abstracts were searched from 1980 onwards. RESULTS: Cultural aspects of cancer genetics is the focus of an emerging body of publications. Almost all studies assessed African-American women with a family history of breast cancer and few studies included more diverse samples, such as Americans of Ashkenazi Jewish background or Hawaiian- and Japanese-Americans. Our analysis of published reports suggests several directions for future research. First, an increased focus on various Asian societies appears warranted. Research outside North America could explore the extent to which findings can be replicated in other multicultural settings. In addition, control group designs are likely to benefit from systematically assessing culture based beliefs and cultural identity in the "majority culture" group used for comparative purposes. CONCLUSION: More data on which to base the provision of culturally appropriate familial cancer clinic services to ethnically diverse societies are needed. Empirical data will assist with culturally appropriate categorisation of people from other cultures into risk groups based on their family histories and provide the basis for the development of culturally appropriate patient education strategies and materials.

Depot fluphenazine for schizophrenia.

BACKGROUND: In the years after the discovery of oral antipsychotic medications, it became clear that there was a link between stopping medication and relapse of psychotic symptoms. A series of long-acting preparations was developed. These depot preparations, are frequently used for those who find taking oral medication on a regular basis difficult or unacceptable. However, it has been a consistent concern that any reduction in relapse rate afforded by the depot preparations may be offset by an increase in undesirable side effects. There is one oral preparation and two depot forms (enanthate (Moditen) and decanoate (Modecate)). The decanoate form is more frequently used but both versions were reviewed in this work. OBJECTIVES: To compare depot fluphenazine medication to oral fluphenazine for treatment of schizophrenia. SEARCH STRATEGY: Electronic searches of Biological Abstracts, CSG's Register, EMBASE, LILACS, MEDLINE, PsycLIT, SCISEARCH, hand searching the references of all identified studies and contacting the manufacturers of the compounds. SELECTION CRITERIA: All randomised clinical trials that compared fluphenazine enanthate or fluphenazine decanoate to oral fluphenazine for people with schizophrenia or other psychoses were included. DATA COLLECTION AND ANALYSIS: One reviewer (CEA) inspected study citations and then the second reviewer (ME) independently inspected 20% of citations to ensure reliability. Full reports of the studies of agreed relevance were obtained and data extracted in the same manner by the authors. Trials were allocated to three quality categories, as described in the Cochrane Collaboration Handbook. Data were analysed on an intention-to-treat basis, and, where possible, parametric continuous data were presented. Tests for heterogeneity were undertaken. MAIN RESULTS: Data were very limited. There was no difference between fluphenazine hydrochloride and its depot form for outcomes such as global impression of functioning, relapse/re-hospitalisation, poor initial response to treatment, leaving the study early, depressed mood / suicide and side effects such as movement disorders, uncomfortable dry mouth, sleep problems and weight gain were equally common in both groups. Direct measures of mental state, social functioning and satisfaction with care were either not measured or presented in such as way as to make any analysis impossible. REVIEWER'S CONCLUSIONS: All six included studies relate to people with schizophrenia who are already stable on oral fluphenazine or seem contented to stay in the studies. How the data from this review relate to everyday psychiatric practices, where compliance with medication is more problematic, is debatable. The use of depot fluphenazine continues to be based on clinical judgement rather than evidence from methodical evaluation within trials. A large pragmatic randomized controlled trial is long overdue.

Starting mental health services in Cambodia.

Cambodia has undergone massive psychosocial trauma in the last few decades, but has had virtually no western-style mental health services. For the first time in Cambodia a number of mental health clinics in rural areas have been started. This experience is used to discuss the risks and opportunities in introducing these services in the present war-torn situation. Basic statistics from the clinics are presented in the context of the historical and traditional setting, and the effort to maintain a culturally informed approach is described. The contrasting results in the clinics are analyzed in relation to factors intrinsic to the health care system and those related to the local population in order to highlight the issues involved in establishing future mental health services, both locally in other provinces and in situations similar to Cambodia. The efficacy of introducing low-cost, basic mental health care is shown, and related to the need to find solutions for prevailing problems on the psychosocial level. They can be introduced with modest means, and can be complementary to local health beliefs and traditional healing. In introducing mental health services, an approach is needed which adapts to the absorption potential of the health system as well as to the patients' need to find meaningful help. Existing resources, from the traditional healing sector to rudimentary village structures, cannot be neglected in the rehabilitation of the community, or in interventions to help the individual patient.

From post-traumatic stress disorder to cultural bereavement: diagnosis of Southeast Asian refugees.

There are pitfalls in the singular application of western categories in diagnosing psychiatric disorders and distress among refugees. Based on my research with Cambodian refugees I argue that cultural bereavement, by mapping the subjective experience of refugees, gives meaning to the refugee's distress, clarifies the 'structure' of the person's reactions to loss, frames psychiatric disorder in some refugees, and complements the psychiatric diagnostic categories. Cultural bereavement includes the refugees' picture--what the trauma meant to them; their cultural recipes for signalling their distress; and their cultural strategies for overcoming it--and the cultural interpretation of symptoms commonly found among refugees that resemble post-traumatic stress disorder. Cultural bereavement may identify those people who have post-traumatic stress disorder on the Diagnostic and Statistical Manual (DSM) criteria but whose 'condition' is a sign of normal, even constructive, rehabilitation from devastatingly traumatic experiences. Cultural bereavement should be given appropriate status in the nosology.

The cultural bereavement interview: a new clinical research approach for refugees.

The large number of refugees in the world must cope with the loss of family and homeland. This paper proposes a new concept of cultural bereavement and presents a framework for its identification in the clinical interview with refugees. The cultural bereavement interview explores reactions to personal losses and to losses of both the social systems and the cultural meanings. Eleven areas are systematically explored, the first nine are indicators of bereavement and the tenth and eleventh are "antidotes" to cultural bereavement. The cultural bereavement interview can provide a clinical framework for exploring the patient's personal and cultural bereavement, clarify the "structure" of the patient's reactions to loss, complement the currently used psychiatric diagnostic categories, acknowledge the cultural system of meaning held by the patient, and provide information to be used in planning social supports or interventions.

Classification of natural and supernatural causes of mental distress. Development of a Mental Distress Explanatory Model Questionnaire.

This paper describes the background and development of a Mental Distress Explanatory Model Questionnaire designed to explore how people from different cultures explain mental distress. A 45-item questionnaire was developed with items derived from the Murdock et al. categories, with additional items covering western notions of physiological causation and stress. The questionnaire was administered to 261 people, mostly college students. Multi-dimensional scaling analysis shows four clusters of mental distress: a) stress; b) western physiological; c) nonwestern physiological; and d) supernatural. These clusters form two dimensions: western physiological vs. supernatural and impersonal vs. personalistic explanations. Natural and stress items are separated from supernatural and nonwestern physiological items along the first dimension. Brain damage, physical illness, and genetic defects have the greatest separation along the first dimension. Being hot, the body being out of balance, and wind currents passing through the body most strongly represent the non-western physiological category. The questionnaire has the potential to be used for community health screening and for monitoring patient care, as well as with students in the health sciences and with health practitioners.

Cultural consultation for cancer: astrocytoma in a Cambodian adolescent.

Although Western medicine helps people understand disease and death in scientific terms, patients often explain their illnesses very differently. The explanations held by patients and their families from 'foreign' cultures can be bewildering to the clinician. In treating immigrant patients, particularly those with terminal illness, it is essential to understand their own explanations. Clinically applied medical anthropology considers how the patient's culture shapes his understanding of disease. In an effort to apply an anthropological approach to the pediatric setting, a cultural consultation service was developed at the Royal Children's Hospital in Melbourne. This service involved a team which included a psychiatrist (with anthropological training), an anthropologist, and several Southeast Asian community members. One patient for whom the service consulted was an adolescent Cambodian boy with glioblastoma multiforme, stage IV. This case is analyzed in the light of the culturally determined problems in management and the culturally embedded meaning of the illness. The patient's belief in ancestral and house spirits as well as his belief in the Theravada Buddhist doctrine of karma is examined. The case demonstrates how belief in such religious phenomena does not necessarily preclude compliance with Western health care.

Medical education for a multicultural society.

Australian medical education has not kept pace with Australia's increasingly multicultural society. Feedback from ethnic community organizations suggests that medical students and specialist trainees in medicine are not learning how to understand, to interact with and to treat patients in culturally appropriate ways. The first part of this paper reviews the problem and considers some perspectives in transcultural medicine and clinically applied medical anthropology. The second part proposes some areas in which medical schools can take the initiative in developing interdisciplinary teaching programmes at undergraduate and graduate levels. These programmes should provide minimal standards to enable any medical graduate to practise with patients of any cultural background and, in addition, will encourage some students to pursue more specialized studies in transcultural medicine and medical anthropology. It is suggested that new developments should be integrated with appropriate university departments such as anthropology.

Depressed mothers and their children.

This paper reviews the current state of research on the relationship between depressed mothers and their children. Several issues are considered: how depressed women function as mothers; the possible origins of depression in the childhood experiences of the mothers; the impact of maternal depression upon the child; the potential consequences for the child's ultimate development; the induction in the child of a depression and the causes of depression in children; the interaction between depressed mothers and their children; and the question of whether there are certain children invulnerable to their mothers' depression. Based on the author's intensive case-design study of 10 mother-child dyads, a model of the interaction between the depressed mother and her child is described. The implications are considered in terms of the need for further research on outcome, risk, and vulnerability, the application to paediatrics, and the broader social and cultural considerations.

Cross-cultural aspects of bereavement. II: Ethnic and cultural variations in the development of bereavement practices.

Despite a growing interest in bereavement in cross-cultural perspective, few reports have described a comparative analysis of bereavement. By examining the social contexts in the transformations of Western bereavement practices, structures common to bereavement in a range of cultures can be identified. The paper compares the contemporary bereavement practices of several ethnic and cultural groups in North America: Blacks; ethnic Chinese; Southeast Asian refugees; Haitians; Italians; Greeks; and Spanish-speaking groups. Consideration is given to the state of widowhood in different cultural systems. The impact of modernization among traditional societies demonstrates that even though Western technologies are incorporated into the procedures followed by these modernizing societies, the deep cultural code remains intact. Five questions require further clarification: is bereavement an illness, or a rite de passage and a normal life event? How widespread and useful are protective factors, such as group support, that facilitate successful resolution of grief? How effective are mourning practices of various ethnic groups in preventing "bad grief", and might some of these practices be beneficial if taken up by other ethnic groups? How can the Western health practitioner know that a bereaved person from an unfamiliar cultural group is suffering "bad grief"? How acceptable is Western grief counseling to non-Western clients?

Cross-cultural aspects of bereavement. I: A conceptual framework for comparative analysis.

This paper reviews some key conceptual questions in the study of cross-cultural aspects of bereavement. Six questions are reviewed in cross-cultural perspective: whether individuals in all societies share the same private experience and public expression of grief; whether the stages of grief occur in the same sequence and at the same rate in all cultures; the nature of the relationship between the individual's private grief and his public mourning; the reactions of children to death, and the reactions of adults to the death of children; the role of religious belief; and the possibility that an ethnic group can experience collective grief in response to uprooting.

"Wind illness' or somatic depression? A case study in psychiatric anthropology.

A 46-year-old mother with a history of chronic headaches and other symptoms, and a clinical diagnosis (in Western terms) of depression, ascribed her condition to non-observance of Chinese postpartum ritual. The characteristic features of "wind illness' are described. Western medicine proved useless but acupuncture was beneficial. The case underlines the importance of understanding the patient's own view of his/her illness and its causes in arriving at a correct diagnosis and intervening effectively: this is particularly true when the gap between the doctor's and the patient's cultures is wide. The value of the distinction between the disease (the pathological process, which may be universal) and an episode of illness (the personal and cultural construction of disease) is emphasized.