title: Step into my zapatos, doc: understanding and reducing communication disparities in the multicultural informed consent setting.
abstract: Current informed consent standards are aimed at promoting an equitable and ethical environment for conducting research across diverse patient populations. This paper explores the possible effects of ethnicity and culture on the consent process for pediatric cancer clinical trials. Informed consent discussions were observed, recorded, transcribed, and coded. Question asking by parents and clinician/parent word ratios were used to create an interactivity measure, or "I-score." Visual analog scales were used to rate the clarity of specific explanations. Cases were sorted into two groups on the basis of parents' self-reported ethnicity: Caucasian (n=79, 56%) and minority (predominantly Latino) parents (n=61, 44%). Chi-square and t-tests were used to compare the groups. A series of logistic regression analyses (controlling for ethnicity and SES) were run for variables that showed statistically significant differences (p < 0.05). Our findings suggest that the content and quality of the informed consent process is linked to parental ethnicity, or clinician attitudes toward parental ethnicity. These findings are discussed in terms of current perspectives on culture and "cultural competence" in health care. Further research is needed to understand how cultural factors affect outcomes such as parental understanding, decision making, mutual trust, and satisfaction within the informed consent process.
authors.affiliation: Department of Bioethics, Case Western Reserve University, Cleveland, OH 44106-4976, USA. cxs66@po.cwru.edu
authors.forename: Christian M
authors.initials: CM
authors.lastname: Simon
authors.forename: Eric D
authors.initials: ED
authors.lastname: Kodish
mesh_terms: D000293:Adolescent; D000328:Adult; D001291:Attitude of Health Personnel; D003144:Communication Barriers; D018864:Cultural Diversity; D005006:Ethnicity; D005260:Female; D006297:Health Services Accessibility; D006801:Humans; D007938:Leukemia / Q000628:therapy; D008297:Male; D008875:Middle Aged; D033282:Parental Consent; D010290:Parents / Q000523:psychology; D010372:Pediatrics; D010817:Physician-Patient Relations; D016032:Randomized Controlled Trials as Topic; D012044:Regression Analysis; D035842:Research Subjects / Q000523:psychology