Article

Methodological challenges in quality of life research among Turkish and Moroccan ethnic minority cancer patients: translation, recruitment and ethical issues.

VU University Medical Center, EMGO Institute, Amsterdam, The Netherlands.
Ethnicity and Health (impact factor: 1.64). 12/2008; 14(3):237-53. DOI:10.1080/13557850802398832 pp.237-53
Source: PubMed

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.

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Keywords

79 Moroccan cancer patients
 
90 Turkish
 
Additional ethical issues
 
bilingual research assistants
 
culturally sensitive
 
Dutch cancer patients
 
eligible patients
 
ethnic minority groups
 
first generation Turkish
 
health care providers
 
health-related quality
 
inappropriate questions
 
lengthy questions
 
logistical barriers
 
Moroccan immigrants
 
primary objective
 
prohibit hospitals
 
Recruiting patients
 
semantic equivalence
 
studies concern patients' problems