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

Abstract

Prior research suggests language concordance positively affects physician-patient communication and their relationship, but few studies have investigated language concordance in genetic counseling sessions for Spanish-speaking patients. This study explored Spanish-speaking genetic counselors' experiences and perceptions of the effects of Spanish language concordance on session processes and outcomes using the Reciprocal-Engagement Model (REM) of practice as a conceptual framework.There are 17 REM goals associated with four goal factors. A secondary purpose was to explore whether perceived effects are modified when the genetic counselor identifies as Latinx. Ten Latina and nine non-Latina Spanish-speaking genetic counselors who practice in the U.S. participated in semi-structured phone interviews. Directed content analysis yielded four themes reflecting how spoken language concordance promotes REM goal factors (Understanding and Appreciation, Support and Guidance, Facilitative Decision-Making, and Patient-Centered Education) and individual goals within each factor. Six additional themes also emerged: Patients feel grateful/relieved to have a genetic counselor who communicates directly in Spanish; Challenges are lessened (e.g., no need for an interpreter); Language interacts with other cultural similarities to achieve REM goals; Use of Spanish conveys genetic counselor is 'going above and beyond' for patients; Communicating medical information is difficult even when Spanish proficient; and Genetic counselor still able to achieve REM goals without language concordance. There were no apparent thematic differences between Latina and non-Latina genetic counselors. Results suggest language concordance positively influences relationship building and communication and facilitates achievement of REM goals. Proficiency in more than one language is 'value added' for genetic counseling services and should be encouraged in genetic counseling graduate programs and continuing education opportunities. Future research could assess patient perceptions of genetic counseling sessions in which the genetic counselor and patient use the patient's preferred language.

Beyond race: Recruitment of diverse participants in clinical genomics research for rare disease

“…Our results align with literature on the role of communication in clinical research, and the extent to which the quality and consistency of communication may influence patient identification and enrollment practices ( Sae-Hau et al, 2021 ) Language-concordant engagement has been shown to facilitate navigation of clinical genetic services for individuals with limited English proficiency ( Pacyna et al, 2021 ; de Leon et al, 2022 ) Our study suggests that resources for communication may be equally important in genomics research, where concepts and terminology are very complex and non-native English speakers who do not typically need an interpreter may struggle with communication. Given that nearly one in 10 adults in the United States have limited English proficiency, language-concordant research services are an essential tool for inclusive research ( Ryan, 2013 )…”

“…Our results align with literature on the role of communication in clinical research, and the extent to which the quality and consistency of communication may influence patient identification and enrollment practices (Sae-Hau et al, 2021) Language-concordant engagement has been shown to facilitate navigation of clinical genetic services for individuals with limited English proficiency (Pacyna et al, 2021;de Leon et al, 2022) Our study suggests that resources for communication may be equally important in genomics research, where concepts and terminology are very complex and non-native English speakers who do not typically need an interpreter may struggle with communication. Given that nearly one in 10 adults in the United States have limited English proficiency, language-concordant research services are an essential tool for inclusive research (Ryan, 2013) Our findings also intersect in unexpected ways with the literature on the role of trust in recruitment of historically marginalized communities in clinical genomics research (George et al, 2013;Claw et al, 2018;Kraft et al, 2018;Lee et al, 2019;Armstrong and Ritchie, 2022) While this literature has emphasized trust-and specifically mistrust-as a barrier to clinical genomics research participation, Hispanic parents in our study expressed more trust in providers to identify and refer them to clinical genomics research than other parents.…”

Perspectives on Spanish language concordant cancer genetic counseling sessions from the Spanish‐speaking population

“…The Reciprocal Engagement Model of genetic counseling highlights the significance of relationship between GC and patient by having this relationship at the core of the counseling process: “The relationship serves as the conduit, providing an alliance in which the patient feels supported, cared about, connected, and validated.” (McCarthy Veach et al, 2007). The results of the present study suggest that language concordance between the GC and patient allowed patients to feel emotionally supported, empowered, and comfortable in sessions, a finding that has been supported in recent genetic counseling studies (Carmichael et al, 2021; de Leon et al, 2022; Garza et al, 2020). Furthermore, while not directly studied here, cultural concordance could have also played a role, which is suggested by previous research as highlighted by this quote: “Women from ethnic minorities may find it difficult to develop a trusting relationship with health‐service providers of different cultural backgrounds, especially ones with whom they have had no prior relationship” (Browner et al, 2003).…”

“…All study participants received healthcare via medical interpreters in the past and most stated they preferred Spanish‐speaking providers due to the absence of a language barrier, a finding consistent with previous literature which supports that provider language concordance is preferred among Spanish‐speaking patients (Carmichael et al, 2021; de Leon et al, 2022; Gonzalez et al, 2010). Two participants in our study did highlight the significance of having no language barriers in the session, with one of these participants also emphasizing that cultural concordance plays a role in successful communication.…”

“…A recent study found that bicultural, and oftentimes bilingual, GCs thought patients felt more comfortable asking questions to GCs with whom they shared aspects of identity (i.e., race, ethnicity, or culture; Carmichael et al, 2021). Another recent study found that bilingual GCs also felt that language concordance allowed them to build a relationship with their Spanish‐speaking patients more quickly and enhanced the exchange of information in the session (de Leon et al, 2022). The positive communication responses received by participants in the present study highlight the role of language‐concordance in achieving successful communication between patient and provider.…”