1.1 Interpreter challenges in genetic counseling

Medical interpreters are necessary to provide genetic counseling services in a patient's preferred language. However, incorporation of interpreters into genetic counseling sessions has challenges. While limited to in-person appointments, current literature suggests interpretation affects rapport building, verbal listening cues (number of questions asked in a session), and diminishes the levels of interactive communication (Ault et al., 2019). This study also found that Spanish-speaking patients were asked fewer open-ended questions, more words were used in English sessions, and although session duration was comparable, the amount of information exchanged was not (Ault et al., 2019). Other difficulties identified in a discourse analysis for in-person cancer genetic result disclosures with an in-person interpreter present found that interpreters adapt clinicians' language through empathetic tools such as terms of endearment and softening (Gutierrez et al., 2019). Softening is defined as instances when “interpreters softened statements from clinicians to be more polite and less direct” and acknowledged these actions “may be considered controversial” because doing so “may remove the emotional gravity necessary to accept diagnoses and treatment implications” (Gutierrez et al., 2019). Nevertheless, interpreters positively contribute to the provision of culturally sensitive information during appointments. For example, a qualitative study found that in-person medical interpreters help GCs navigate cultural differences and “culture bumps” during in-person appointments (Gutierrez et al., 2019; Rosenbaum et al., 2020). The challenges and nuanced benefits of in-person, interpreter-mediated genetic counseling sessions must be considered as the additional layer of telehealth is introduced.

Various studies illustrate additional challenges during in-person interpreted appointments when the interpreter is accessed through telephone, including interpreters changing what was said, raising the register of complexity, reinforcing misconceptions, or interpreters “feeling dumb” when there is no direct translation in a particular language or feeling their training is inadequate (Cheng et al., 2018; Joseph et al., 2023; Joseph & Guerra, 2015; Krieger et al., 2018; Lara-Otero et al., 2019). There were instances where interpreters would omit information, which impacted the shared decision-making process or would provide misleading information (Gene Hallford et al., 2020; Kamara et al., 2018).

1.2 Genetic counseling and telehealth

Since the COVID-19 pandemic, more providers conduct visits via telehealth, which includes telephone and video communication (Green et al., 2023). However, utilization rates vary among different patient groups. Research conducted on adults in California indicated that patients with LEP had half the odds of using telehealth services, even when accounting for various socio-demographic factors and health status (Rodriguez et al., 2021). Similar findings are evident in genetic counseling as identified in Steyer et al. (2023) publication, particularly among Spanish-speaking prenatal patients who preferred in-person over virtual visits. The authors suggested that prior experiences with a virtual interpreter may influence this preference, with only one-third of Spanish speakers believing they would have sufficient time to discuss their concerns in a virtual appointment (Steyer et al., 2023). Interestingly, facilitators typically associated with telehealth, such as removing transportation barriers, eliminating need to take time off work, and childcare barriers did not factor as greatly for Spanish-speaking patients' preferences for in-person versus telehealth visits (Steyer et al., 2023). If a patient thought the mode of delivery would make their experience with an interpreter easier, then that was the preferred mode (Steyer et al., 2023). As such, it is imperative to ensure that the field continues “to offer in-person appointments and [works] to eliminate any real or perceived barriers” related to telehealth (Steyer et al., 2023). This demonstrates the importance of exploring ways in which the GC-interpreter-patient appointment can be improved, especially via telehealth. Furthermore, the evidence-based telehealth practice guideline from the NSGC concedes that although telehealth increases access and is comparable to an in-person appointment, it can create additional challenges when patients need an interpreter, and “efforts should be made to address these barriers to provide equal access to services” (Green et al., 2023).

1.3 Significance

Providing an interpreter may not suffice in bridging language barriers as the quality of interpreting can vary. Potential issues that can impact the quality of interpretation include interpreter inserting their own opinions, omission of information, not asking for clarification, and challenges with genetic terminology, among others (Gene Hallford et al., 2020; Joseph et al., 2023; Joseph & Guerra, 2015; Kamara et al., 2018; Krieger et al., 2018). Recommendations have been made to enhance the GC-interpreter experience by speaking in short phrases, avoiding jargon, asking comprehension questions, orienting the interpreter to the goals of the session, encouraging them to ask for clarification, and limiting analogies or metaphors (Gutierrez et al., 2019; Joseph et al., 2023).

Previous research exploring best practices and satisfaction with interpreter-mediated genetic counseling is in the context of having both patients and interpreters in-person, or in-person patients with the interpreter over the phone or video. Since telehealth is an increasingly common delivery model of genetic counseling where patients, genetic counselors, and interpreters are over the phone or video, it is important to ensure successful communication. This study focuses on telehealth genetic counselor's experiences with interpreters to address linguistic and cultural barriers in sessions provided over telehealth. What are the ways genetic counselors who are experienced in providing interpreter-mediated telehealth sessions gained their knowledge base? Additionally, what are the specific strategies genetic counselors use to provide interpreter-mediated telehealth sessions? By narrowing our focus we can begin to take inventory of insights and strategies for overcoming language barriers.

2.1 Human studies and informed consent

The study was reviewed by the Institutional Review Board at the Medical College of Wisconsin—Milwaukee Campus and approved for registration in accordance with MCW IRB Policy: Registration Projects: Human Subject Research Projects (PRO00047995). Given that the project involved direct contact with subjects, an informed consent process utilizing an informational letter was approved. Participants were provided the informational letter in advance of interview stating responses will be confidential to the extent allowed by law and when writing about the study, participants will not be identified in publications. Verbal informed consent was obtained at the start of each interview prior to initiating audio recording for inclusion in the study.

This study used qualitative semi-structured interviews to explore how GCs gained their knowledge about working with interpreters over telehealth, as well as what strategies they use to ensure high-quality appointments.

We sought to recruit 10–12 GCs using social media posts, the NSGC listserv, flyers at the 2023 annual conference, Minority Genetics Professional Network (MGPN) Slack, American Board of Genetic Counseling (ABGC) mailing list, and Canadian Association of Genetic Counselors (CAGC) mailing list. Eligible participants met inclusion criteria if they were board-certified GCs in their respective country and had high-volume of patients with LEP seen via telehealth. We define “high-volume” as more than 5 patients per week or 25% of their telehealth patients per month requiring interpretation services. Participants received a $25 gift card for their time upon completion of the interview.

A semi-structured interview guide (Appendix S1), which was developed, reviewed, and approved by the authors, consisted of 17 open-ended questions. It focused on participants' experience as they became comfortable working with interpreters, training and resources used, and strategies employed. Interviews were conducted from September 1, 2023, to December 18, 2023, via Zoom, which was utilized for audio and video recordings. All interviews were conducted in English with an average length of 40 min, but ranged from 29 and 51 min. Data were collected using password-secured wireless networks, MCW-supplied programs (Outlook, Microsoft Office, Zoom) with 2-factor authentication via Duo. Original data were stored in a secure Box folder. Transcriptions, completed with Zoom software, was verbatim and was de-identified and filler words were omitted to aid in analysis.

Data were analyzed by MAXQDA version 24.2.0 using thematic analysis. Thematic analysis involves identifying and organizing themes across datasets and is particularly appropriate for understanding “a set of experiences, thoughts, or behaviors” with a focus on uncovering “common or shared meanings” (Kiger & Varpio, 2020). LP completed data familiarization with 8 datasets prior to initiating the coding process through reviewing all transcripts and ensuring accurate transcription. Development of the codebook was done with two members of the study team, PH and CR each reviewing one transcript, and JG reviewing 2 transcripts against the initial codebook to provide feedback. The codebook was subsequently refined based on this feedback, and codes were developed organically and openly, were periodically reviewed, condensed, and refined through an iterative process. Themes were developed and refined from codes to capture patterns of shared meaning united by a central concept or idea. Quotes selected were taken directly from interviews and edited for clarity.

3.1 Overview of themes

Three major themes and five sub-themes emerged, which are outlined in Table 2. For the first theme of exploring how GCs gained their knowledge, the sub-themes “source of knowledge” and “identified practice gap” emerged. For the theme of strategies GCs use during interpreted telehealth appointments, “known best practices”, “new strategies used”, and “assessing session quality” sub-themes were identified. The final theme of “Challenges GCs face in interpreted telehealth appointments” has no subthemes. Additional information such as participant background and challenges encountered were also collected. The complete codebook can be found in the Appendix S1 as Table S1.

3.2 Challenges GCs face in interpreted telehealth appointments

4.1 Building on prior recommendations for working with interpreters

Although none of the GCs mentioned the Genetic Counseling Cultural Competence Toolkit resource, many of them described using the recommendations set forth by the 2009 resource, including providing information in chunks, avoiding jargon, providing translated documents, using a moderate pace, contracting with the interpreter before sessions, debriefing with interpreters, and scheduling more time for an interpreted session (JEMF, 2009). Recommendations for working with interpreters during in-person appointments parallel strongly with those our participants mentioned. Strategies our participants shared that we found especially pertinent for the telehealth setting are providing a take-home message, learning from bilingual colleagues and interpreters, and seeking ways to build GC cultural competency. Aside from technical difficulties and connection issues that can occur in a telehealth appointment, many of the challenges experienced by participants can be seen with in-person visits that are conducted with an interpreter.

Our participants emphasized the importance of having a take-home message for interpreted telehealth appointments. Having a take-home message means focusing on how the genetic information could impact their healthcare and concrete next steps, rather than allocating time to explain what a genetic counselor is, or the biological background of genetics. This recommendation agrees with previous research suggesting GCs need to tailor information and convey what is necessary and sufficient for patient understanding (Joseph & Guerra, 2015; Riddle et al., 2021). GCs conducting interpreted sessions over telehealth must consider how the information presented can be more accessible, including tailoring information and providing a key take-home message.

Many GCs interviewed discussed learning from bilingual colleagues, whether it be bilingual staff unrelated to genetics who could translate or access to in-house interpreters through feedback. A unique opportunity telehealth appointments offer is if an employer records all appointments, sessions can be reviewed to identify errors, as was the case for the pancreatic cancer patient whose mention of surgery earlier in the day did not get relayed. Thanks to a bilingual genetic counselor colleague reviewing that appointment for Participant 9, they were able to see why it went so poorly. Additionally, bilingual colleagues supported participants through translating written materials, or interpreting shorter telephone interactions. Not all GCs learned from other genetic counselors; some were genetic counselor assistants or office staff. Since having a working knowledge of a second language is useful in the genetic counseling setting, it is important to diversify the profession, as this could increase the number of bilingual GCs to serve patients with LEP.

Participant 2 described speakers from local community-based organizations presenting at their workplace as a key source for learning how to provide interpreted telehealth appointments successfully. By learning from them, GCs can become more informed about patients' cultures and learn about nuances in diverse patient populations. This aligns with other qualitative studies, which also recommend providers self-educate regarding cultures prevalent in the patient population (Gene Hallford et al., 2020; Krieger et al., 2018; Rosenbaum et al., 2020). There are benefits to increasing provider cultural competence and knowing what terms in English do not have translations in other languages, bringing awareness to avoid using the term altogether and instead explain what is meant in detail. Additionally, increasing cultural competence could inform GCs what concepts are taboo in other cultures. Insights our participants shared included knowing the translation for “forms” or “documents” could worry patients when they associate it with immigration status, or explaining risk as a “roll of a dice” could be illicit in specific cultures. These are two examples to how genetic counselors could tailor sessions to not alienate patients with LEP; there is a wealth of insights to learn from seeking feedback from interpreters and learning from community-based workers across more cultures. Another route for learning about a culture and language extensively was provided by an interviewee who took Spanish classes with a medical interpreter and traveled to Spanish-speaking countries to have a more immersive understanding of the culture.

4.2 Building a GC-interpreter relationship

Several interviewees shared a cautionary tale from their earlier interactions, ranging from important omissions, mistranslated words, and softening the delivery of bad news. These negative interactions influenced whether the GC could trust interpreters in the future. Participant 6 shared a story of the interpreter softening the delivery of bad news for a pregnancy, resulting in inaccurate information being provided. This mirrors what a previous study warned about—when interpreters employ empathetic linguistic tools, there is risk the information will not demonstrate the gravity of the situation (Gutierrez et al., 2019). The value of the empathetic tools interpreters use to provide culturally sensitive information are not to be devalued. Rather, this nuance for instances where softening would be inappropriate as in the context of communicating genetic risk is a unique challenge for genetic counseling appointments. For telehealth appointments it is unlikely GCs will work with the same interpreter more than once since most are contracted through a third-party, and it is unlikely the interpreter will be familiar with the genetic counseling profession. Therefore, it is more important than ever to reach a mutual understanding of roles to support a better working relationship.

Several participants described meeting for a few minutes with interpreters ahead of the appointment to contract with them. Often this was the space where the GC indicated the tone of the session, allowed the interpreter to research any key terminology, and encouraged the interpreter to ask clarifying questions. This is in agreement with a previous qualitative study which interviewed 19 interpreters and recommended GCs “approach a session with an interpreter with intention” and suggested they orient interpreters to the session and encourage them to ask for clarification as needed (Joseph et al., 2023). By sharing the tone of the session to expect and whether it will be emotionally heavy, interpreters could anticipate whether a particular case should not use softening.

4.3 Additional training needs for genetic counselors

This study had an unexpected finding of identifying additional training needs for GCs, not only as it pertains to working with interpreters in the telehealth space but also the implementation of teach-back as an education tool. Multiple GCs verbalized discomfort with teach-back, citing reasons as not wanting to quiz the patient and feeling a power imbalance. Since teach-back is a primarily verbal method of assessing patient understanding, it would be beneficial to explore how GCs can become more comfortable using this tool.

When GCs discussed ways they gained their knowledge, the quality of training for working with interpreters was variable. While many mentioned experiences working with interpreters during clinical rotations, only two participants had applicable lectures during their graduate training to supplement this. Without foundational knowledge of best practices for working with interpreters, it is hard for GC students to know whether their interactions during clinical rotations were successful. Additionally, several GCs mentioned not having learned during their graduate training specifically how to work with interpreters over the telehealth modality, but think it would have been helpful to get dedicated lectures from interpreters. There is a need for GCs to better understand how interpreters are trained to foster more trust in their decision-making on the best translation type for appointments. Learning from the perspective of interpreters during graduate training could be an avenue to improve both GC comfort and the GC-interpreter relationship.

4.4 Study limitations

Although we reached thematic saturation, we interviewed a small number of individuals who met criteria of seeing a high volume of patients with LEP that required the use of an interpreter over telehealth. Since there is no threshold established for what “high volume” of patients with LEP is for genetic counseling, researchers established the threshold of 5 patients per week or 25% of patients per month requiring an interpreter. It is possible that our defined threshold for “high volume” unnecessarily excluded GCs who could have provided valuable insight, or is not high enough. Additionally, nine participants previously took language classes of varying lengths, which could overrepresent GCs who can recognize words in another language. Most of our participants that shared the interpreted language was Spanish, followed by Arabic, and Mandarin. Although other languages were represented, our study sample has an overrepresentation of experiences with Spanish interpreted sessions. Other languages not described here could make interpretation more complex and could have additional nuances.

Each GC's personal biases and world view informs the perspectives they shared during the interviews and can be prone to recall bias. Participants cannot definitively know whether their communication strategies are effective since this is based on their perspective. Four participants had between 1 and 3 years of experience as GCs in telehealth, which could influence the challenges they perceive in this modality as a newer genetic counselor. To paint a complete picture on how to best work in interpreted telehealth sessions, it would be ideal to incorporate the perspectives of interpreters and patients, which were not included in this research project. Finally, while our participants mentioned connection issues and limited access to technology occasionally being a challenge for interpreted telehealth appointments, our question guide did not assess their strategies to overcome technical difficulties.

4.5 Practice implications

By interviewing GCs who are experienced in providing interpreted telehealth appointments, insights were gathered regarding practical strategies that could be implemented to enhance patient care. This research could inform a reprioritization for how graduate trainees are taught how to work with interpreters. Additionally, since there is an increase in telehealth as a modality for genetic counseling sessions, graduate training programs could be intentional to provide clinical rotation experiences where students could practice these skills under supervision. By familiarizing students to working with interpreters during their graduate training and informing them of the acceptability to collaborate with interpreters before, during, and after appointments, it can be expected the working relationship between interpreters and GCs will improve.

For practicing GCs, strategies to improve both trust and cultural competency can be considered for before, during, and after an appointment for a patient with LEP over telehealth. Given the researchers' familiarization with the data of this study as well as review of literature, we have compiled practical considerations for interpreted telehealth genetic counseling appointment in Table 6.

4.6 Future directions

A future area of study could explore interpreters' perspectives during interpreted genetic counseling telehealth appointments. Additionally, multiple studies including our own emphasize the importance of contracting with interpreters prior to initiating sessions with patients with LEP. To the best of our knowledge, there is no discourse analysis comparing interpreted telehealth appointments with versus without the pre-session interpreter contracting. This would help inform whether it is an aspect to delivery of telehealth critical to keep, or if under time constraints, is acceptable to cut. Since this was not assessed by our study, future research could explore whether softening language is implemented by interpreters during genetic counseling appointments and how this technique affects the accuracy of the information shared. Additionally, the investigation of whether pre-session contracting with interpreters makes a difference in the working relationship and sessions would be a helpful contribution to the field.

While some GCs shared insights learned for specific patient backgrounds, the information gathered is not comprehensive of all cultures. As such, future research can explore these avenues in depth using insights from community-based representatives. Currently, analogies during interpreted appointments can be ineffective because their translation may not be culturally relevant. However, an area for future investigation could be to adapt analogies for genetics concepts to be culturally competent. GC colleagues of diverse cultural backgrounds can lend their expertise of genetics as well as their culture to develop learning aids, visual aids, and analogies that can serve these patient populations. Finally, future research can investigate how experienced GCs troubleshoot technology issues to provide equitable access during telehealth appointments.