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.

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.

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.