Access barriers to genetic services for Spanish‐speaking families in states with rapidly growing migrant populations

Abstract

Hispanics are among the fastest growing U.S. population segments, accounting for the majority of growth since 2000. Hispanics are heterogeneous and include foreign‐born and U.S. citizens, monolingual fluent English speakers, monolingual Spanish‐speakers, multilingual speakers, and socioeconomically and educationally diverse subgroups. States within the central United States (U.S.), referred to as the Heartland, have numerically small Hispanic populations, but rapidly growing Hispanic populations that are expanding faster than the overall U.S. Hispanic population. The Hispanic populations across the U.S. are widely known to be medically underserved. This qualitative study identifies barriers native Spanish‐speakers experience when locating and accessing genetic services for their children. After providing informed consent, 29 parents in three Heartland states were interviewed and asked about their awareness of available genetic services, utilization of available services and difficulties they encountered when using them. Interviewees reported delayed genetic service referrals, limited availability and inadequate interpretation services, verbal and written communication problems during clinic visits, culturally incongruent healthcare expectations and limited appreciation for how genetic services benefit them. Necessary efforts to understand and improve genetic service access and usefulness for Hispanic populations are underway in the Heartland and elsewhere and should continue to be expanded.

Spanish language concordance in genetic counseling sessions in the United States: Counselor experiences and perceptions of its effects on processes and outcomes

“…Lack of knowledge or competency in turn hinders the genetic counselor's ability to communicate and provide decisional support throughout the session. In a study conducted in the central United States, Hallford et al, (2020) studied Spanish-speaking parents' use of genetic counseling services for their children and found language barriers that included unavailable or inadequate interpretation services, and inadequate or inappropriate verbal communication and written materials. Even when written materials were in Spanish, parents had difficulty understanding them, given the complexity of the content.…”

“…Understanding the communication processes in genetic counseling sessions with LEP populations is important because they tend to have a significantly lower health literacy than their English proficient counterparts (Sentell et al, 2012). Multiple studies have investigated genetic counseling processes and outcomes for LEP populations, most commonly, Latina cancer patients (Eichmeyer et al, 2005;Farrell et al, 2015;Hallford et al, 2020;Joseph & Guerra, 2015;Joseph et al, 2017;Kamara et al, 2018;Kinney et al, 2010;Rajpal et al, 2017;Sheets et al, 2012;Sussner et al, 2015). Findings show that LEP individuals have less knowledge of and limited access to genetic counseling services (Cheng et al, 2018;Farrell et al, 2015;Hallford et al, 2020;Joseph & Guerra, 2015;Kinney et al, 2010;Rajpal et al, 2017;Sheets et al, 2012;Sussner et al, 2015).…”

“…Multiple studies have investigated genetic counseling processes and outcomes for LEP populations, most commonly, Latina cancer patients (Eichmeyer et al, 2005;Farrell et al, 2015;Hallford et al, 2020;Joseph & Guerra, 2015;Joseph et al, 2017;Kamara et al, 2018;Kinney et al, 2010;Rajpal et al, 2017;Sheets et al, 2012;Sussner et al, 2015). Findings show that LEP individuals have less knowledge of and limited access to genetic counseling services (Cheng et al, 2018;Farrell et al, 2015;Hallford et al, 2020;Joseph & Guerra, 2015;Kinney et al, 2010;Rajpal et al, 2017;Sheets et al, 2012;Sussner et al, 2015). Moreover, communication is often unidirectional, that is, the patient received information from the genetic counselor, but the genetic counselor did not receive information from the patient (Joseph & Guerra, 2015;Joseph et al, 2017;Kamara et al, 2018;Kinney et al, 2010;Rajpal et al, 2017).…”

Untitled

“…Racial minority populations in the United States are disproportionately affected by these healthcare disparities (73). Consistent with these findings, multiple studies have documented disparities in access to genetic services for low-income and minority patients (36,53,63,65,69,119,126). Barriers include limitations in physicians' genetics knowledge, use of genetic testing, and referral to genetic services; availability and cost of services; lack of translation services; and failure of appropriate follow-up after testing or referral occurs.…”

‘LEADERS’: A culturally tailored approach to genetic counseling for minority populations

“…The challenges of genetic counseling for a multifaceted minority group like the Arab community may be relevant to other multicultural Western countries in the 21st century, as the underuse of genetic counseling by minority groups is a phenomenon acknowledged in the research literature (Gene Hallford et al, 2019). In addition, the current ‘gold standard’ of the genetic counseling service in Western democratic countries stresses the necessity of adapting the counseling to the counselees’ cultural needs (Resta et al., 2006).…”