Literature DB >> 15842091

Step into my zapatos, doc: understanding and reducing communication disparities in the multicultural informed consent setting.

Christian M Simon1, Eric D Kodish.   

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.

Entities:  

Keywords:  Biomedical and Behavioral Research; Empirical Approach

Mesh:

Year:  2005        PMID: 15842091

Source DB:  PubMed          Journal:  Perspect Biol Med        ISSN: 0031-5982            Impact factor:   1.416


  12 in total

Review 1.  A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders.

Authors:  Sheba George; Nelida Duran; Keith Norris
Journal:  Am J Public Health       Date:  2013-12-12       Impact factor: 9.308

2.  The Development of a Communication Tool to Facilitate the Cancer Trial Recruitment Process and Increase Research Literacy among Underrepresented Populations.

Authors:  Samantha Torres; Erika E de la Riva; Laura S Tom; Marla L Clayman; Chirisse Taylor; Xinqi Dong; Melissa A Simon
Journal:  J Cancer Educ       Date:  2015-12       Impact factor: 2.037

3.  Ethical considerations in the collection of genetic data from critically ill patients: what do published studies reveal about potential directions for empirical ethics research?

Authors:  B D Freeman; C R Kennedy; H L Frankel; B Clarridge; D Bolcic-Jankovic; E Iverson; E Shehane; A Celious; B A Zehnbauer; T G Buchman
Journal:  Pharmacogenomics J       Date:  2009-12-08       Impact factor: 3.550

Review 4.  Recommendations for enhancing clinical trials education: a review of the literature.

Authors:  Karen A Stepan; Amy P Gonzalez; Vivian S Dorsey; Debra K Frye; Nita D Pyle; Regina F Smith; Terry A Throckmorton; Louise A Villejo; Scott B Cantor
Journal:  J Cancer Educ       Date:  2011-03       Impact factor: 2.037

5.  Informed consent and genomic incidental findings: IRB chair perspectives.

Authors:  Christian M Simon; Janet K Williams; Laura Shinkunas; Debra Brandt; Sandra Daack-Hirsch; Martha Driessnack
Journal:  J Empir Res Hum Res Ethics       Date:  2011-12       Impact factor: 1.742

6.  Improving informed consent with minority participants: results from researcher and community surveys.

Authors:  Sandra Crouse Quinn; Mary A Garza; James Butler; Craig S Fryer; Erica T Casper; Stephen B Thomas; David Barnard; Kevin H Kim
Journal:  J Empir Res Hum Res Ethics       Date:  2012-12       Impact factor: 1.742

7.  Using animation as an information tool to advance health research literacy among minority participants.

Authors:  Sheba George; Erin Moran; Nelida Duran; Robert A Jenders
Journal:  AMIA Annu Symp Proc       Date:  2013-11-16

8.  Advancing the field of communication research in pediatric oncology: A systematic review of the literature analyzing medical dialogue.

Authors:  Erica C Kaye; Ashley Kiefer; Kristina Zalud; Melanie Gattas; Ian Snyder; Holly Spraker-Perlman; Justin N Baker
Journal:  Pediatr Blood Cancer       Date:  2018-08-01       Impact factor: 3.167

9.  Perceived Institutional Barriers Among Clinical and Research Professionals: Minority Participation in Oncology Clinical Trials.

Authors:  Soumya J Niranjan; Jennifer A Wenzel; Michelle Y Martin; Mona N Fouad; Selwyn M Vickers; Badrinath R Konety; Raegan W Durant
Journal:  JCO Oncol Pract       Date:  2021-05

10.  Active choice but not too active: public perspectives on biobank consent models.

Authors:  Christian M Simon; Jamie L'heureux; Jeffrey C Murray; Patricia Winokur; George Weiner; Elizabeth Newbury; Laura Shinkunas; Bridget Zimmerman
Journal:  Genet Med       Date:  2011-09       Impact factor: 8.822

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