Methodological challenges in quality of life research among Turkish and Moroccan ethnic minority cancer patients: translation, recruitment and ethical issues.
ABSTRACT The large population of first generation Turkish and Moroccan immigrants who moved to Western Europe in the 1960s and 1970s is now reaching an age at which the incidence of chronic diseases, including cancer, rises sharply. To date, little attention has been paid to the health-related quality of life (HRQOL) of these ethnic minority groups, primarily due to the paucity of well translated and validated measures, but also because of a range of methodological and logistical barriers. The primary objective of this paper is to describe the methodological challenges in conducting HRQOL research among these patient populations, based on experience gained in a project in which four widely used HRQOL questionnaires were translated into Turkish, Moroccan-Arabic and Tarifit, and administered to a sample of 90 Turkish and 79 Moroccan cancer patients in the Netherlands. Problems encountered in translating and administering the questionnaires included achieving semantic equivalence (use of loanwords), use of numerical rating scales, lengthy questions and response scales, and culturally sensitive and/or inappropriate questions. Privacy laws that prohibit hospitals from registering the ethnicity of patients hampered efficient identification of eligible patients. Recruiting patients to studies is often difficult due to low literacy levels, lack of familiarity with and distrust of research, concerns about immigration status, and inaccurate or missing contact information. This can lead to lower response rates than is the case with the population of Dutch cancer patients. Additional ethical issues that arise in such studies concern patients' problems with communicating with their health care providers, their lack of understanding of their diagnosis, treatment and prognosis, and the potential role conflict experienced by bilingual research assistants who may wish or be asked to intervene on the patients' behalf. Practical approaches to resolving these issues are presented.
Article: A qualitative assessment of implementing a cross-cultural survey on cancer wards in Denmark--a description of barriers.[show abstract] [hide abstract]
ABSTRACT: Research into migration and health is often confronted with methodological challenges related to the identification of migrants in various settings. Furthermore, it is often difficult to reach an acceptable level of participation among migrant groups in quantitative research. The aim of this study is to conduct a qualitative assessment of the barriers encountered during the implementation of a cross-cultural survey on cancer wards in Copenhagen, Denmark. Participant observation at the involved wards was combined with qualitative interviews with selected nurses and informal talks with a wider group of nurses at the wards involved in the survey. One possible way to increase the participation of migrant patients in research is through the involvement of the hospital staff in contact with patients. Involvement of nurses on cancer wards in the delivery of questionnaires to patients was challenging, despite a general willingness to participate in psychosocial research. The main difficulties were found to be both external (policy changes, general strike among nurses) and internal on the wards (heavy workload, lack of time, focus on medical aspects of cancer rather than psychosocial aspects). These factors interacted and resulted in a lower priority being given to psychosocial research. Further, nurses expressed a feeling that researchers in general did not recognize their contribution in research, making it more difficult to engage fully in studies. Involving hospital staff in research is feasible but not straightforward. Awareness of the influence of possible external and internal factors and efforts to deal with these factors are fundamental to the successful implementation of psychosocial cancer research in a hospital setting.BMC Medical Research Methodology 01/2010; 10:4. · 2.67 Impact Factor
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ABSTRACT: Negative events are abusive, potentially dangerous or life-threatening health care events, as perceived by the patient. Patients' perceptions of negative events are regarded as a potentially important source of information about the quality of health care. We explored negative events in hospital care as perceived by immigrant patients. Semi-structured individual and group interviews were conducted with respondents about negative experiences of health care. Interviews were transcribed and analyzed using a framework method. A total of 22 respondents representing 7 non-Dutch ethnic origins were interviewed; each respondent reported a negative event in hospital care or treatment. Respondents reported negative events in relation to: 1) inadequate information exchange with care providers; 2) different expectations between respondents and care providers about medical procedures; 3) experienced prejudicial behavior on the part of care providers. We identified three key situations in which negative events were experienced by immigrant patients. Exploring negative events from the immigrant patient perspective offers important information to help improve health care. Our results indicate that care providers need to be trained in adequately exchanging information with the immigrant patient and finding out specific patient needs and perspectives on illness and treatment.BMC Health Services Research 01/2011; 11:10. · 1.66 Impact Factor