Cancer genetic counseling communication with low-income Chinese immigrants

Abstract

As genetics and genomics become part of mainstream medicine, these advances have the potential to either reduce or exacerbate health disparities. Relatively, little research has explored the quality of genetic counseling communication experienced by limited English proficiency patients, especially Chinese Americans. We observed and audio recorded genetic counseling appointments (n = 40) of low-income, limited English-proficient Chinese patients (n = 25) and conducted post-visit interviews (n = 17) using stimulated recall to examine patient understanding of the communication. Standard techniques based in grounded theory, including iterative data review and multiple coders, were used to analyze observation fieldnotes and interview transcripts and to identify these themes: (1) strong beliefs in environmental causes of cancer and skepticism about genetic causes, (2) willingness to undergo genetic testing despite skepticism of hereditary cause of cancer, (3) misunderstanding of key information needed to make informed decisions about testing and screening/prevention options, (4) variable quality of medical interpretation, and (5) selective family communication about cancer and genetic counseling and testing. Together, these themes describe substantial gaps in communication and identify the need for genetic counseling techniques and skills that enable counselors to communicate more effectively across language, literacy, and culture. Understanding the mechanisms of inheritance and the implications of genetic test results can be challenging for anyone, and it is exceptionally daunting for those who have limited English proficiency and/or low literacy. For Chinese immigrant patients to reap the full benefits of genetic counseling and testing, effective communication is essential. Research on interventions to improve communication is needed to ensure that disparities do not widen as genomic medicine reaches a more diverse population.

Genetic Counselor and Healthcare Interpreter Perspectives on the Role of Interpreters in Cancer Genetic Counseling

“…Based upon findings of the present and related studies in which we observed uneven interpretation quality during genetic counseling (Cheng et al, 2018;Joseph et al, 2017;Kamara et al, 2018), we developed a training workshop to provide interpreters with an overview of the key concepts in genetics in general, and cancer genetics and genetic counseling specifically; it includes bilingual glossaries, vocabulary exercises and role plays (Roat et al, 2015). Furthermore, to improve interpreter and patient comprehension, we developed a training curriculum to teach GCs how they can use plain language (Stableford & Mettger, 2007), reduce the overall quantity of information they provide, and give interpreters explicit permission to ask for clarification (Joseph, Pasick, Schillinger, Guerra, & Rubin, 2018).…”

“…LHL is thought to affect about 8 million US adults (Berkman, Sheridan, Donahue, Halpern, & Crotty, 2011) and is more common among LEP individuals compared to the general population (Sentell & Braun, 2012). Genetic counseling has been shown to have a high literacy demand (Roter, 2011) and to be challenging to patients of limited literacy (Joseph et al, 2017) and LEP (Cheng et al, 2018;.…”

“…This exploratory study examined the perspectives of both GCs and HIs on CGC sessions conducted with remote (telephone or video) interpreters. This study emerged from clinical observations conducted for a study of CGC communication in two safety net hospitals in large metropolitan areas of California serving ethnically diverse patients, nearly all of whom have Medicaid and Medicare or are uninsured (Joseph et al, 2017) Those observations revealed an uneven quality of interpretation, and challenges for GCs working with LEP patients and interpreters (Cheng et al, 2018;Jacobs et al, 2005;Kamara, Weil, Youngblom, Guerra, & Joseph, 2018). Thus, our primary research questions were: what training and expertise do interpreters bring to the CGC encounter, what are their perspectives on the CGC encounter, and what types of challenges do HIs and GCs perceive in their respective roles and their partnered working relationship during interpretermediated CGC encounters?…”

Genetic counseling among minority populations in the era of precision medicine

“…For example, Malen, Knerr, Delgado, Fullerton, and Thompson () found that none of the participants in their study of rural Mexican‐Americans could describe what “genetics” meant to them in their own words. In a study of low‐income Chinese immigrants, there was skepticism regarding genetic causes of cancer, with much stronger beliefs about environmental causes (Cheng et al, ). Further, acculturation among African immigrants has been found to be an important factor in the perception of genetic services (Sussner et al, ).…”

Effective communication in the era of precision medicine: A pilot intervention with low health literacy patients to improve genetic counseling communication

“…Researchers and healthcare practitioners have begun to explore new models of genetic counseling due to the shortage of genetic counselors, the increasing demand for their services, and the growing complexity of testing brought about by genome and exome sequencing (Bradbury et al, 2015;Hooker et al, 2014). Some have called for a shift away Our study of communication between GCs and their hereditary cancer risk counseling patients in public "safety net" hospitals assessed communication effectiveness from the patients' perspectives (Cheng et al, 2017;Joseph et al, 2017;Kamara et al, 2018;Lara-Otero et al, 2018). Through observations of 170 genetic counseling sessions with English, Spanish and Chinese-speaking patients in public hospitals and in-depth interviews with both patients and counselors, we identified a fundamental mismatch between the information provided by the GCs and the information that patients desired, deemed useful, and understood.…”