Cancer Control Research5R03CA099453-02
Simon, Christian Michael
LANGUAGE AND INFORMED CONSENT IN CHILDHOOD CANCER
DESCRIPTION (provided by applicant): Communication is the fabric of medical care. Nevertheless, it has recently been estimated that more than 31 million people in the United States are unable to communicate in the same language as their health care providers. Pressure to recruit interpreters in order to facilitate communication between clinicians and patients has followed, a factor that introduces into health care communication such issues as interpreter inaccuracy, role conflict, and other complexities of language interpretation. This two-year study investigates language interpretation in the context of informed consent for cancer clinical trials, where effective communication is vital to the optimal disclosure and understanding of information, and the decision-making competency of patients and their families. It focuses on informed consent discussions involving parents with children who were newly diagnosed with leukemia. The study's objectives are to: 1. Examine how interpreters function during informed consent discussions for cancer clinical trials, and how their behaviors shape the consent process; 2. Assess the impact of interpreter behaviors on parental understanding of informed consent; and, 3. Tie the above findings to first-hand data on the concerns and needs of key stakeholders in interpreted informed consent. The study plans to meet the first two objectives through a structured, sentence-by-sentence analysis of the English and Spanish portions of a sample of audiotaped informed consent discussions. Structured questionnaires will be used to meet the third objective. These will be administered to a sample of interpreters, parents, and clinicians who have previously participated in multilingual informed consent discussions for cancer clinical trials. Little research exists on the use of interpreter services in informed consent for cancer trials, even though it is clear that informed consent obtained without competent language interpretation is unlikely to be truly informed. The proposed study will identify aspects of language interpretation that may require improvement, or that may serve as a model for enhanced communication and understanding in informed consent discussions for cancer trials, both within and beyond the pediatric setting.