Abstract
Purpose:
The purpose of this article is to raise awareness about the importance of diverting from English-centric approaches in the management of dysarthria associated with Parkinson's disease (PD) in the United States, and embracing a language- and culture-specific perspective when working with linguistically and culturally diverse populations within the context of culturally responsive, precision medicine.
Method:
This tutorial is divided into two primary components: a critical review of language universal and language-specific characteristics of dysarthria associated with PD and their relationship with speech intelligibility, and a practical guide to culturally responsive evidence-based practice for speech-language pathologists.
Conclusions:
We offer a framework for linguistically and culturally appropriate considerations when working with clients with dysarthria associated with PD. While “universal” representations of dysarthria may be part of the big picture, language-specific contributions to speakers' intelligibility should be carefully examined to maximize treatment outcomes. Additionally, an evidence-based model that fully embraces clients' wishes and values within the context of culturally responsive, precision medicine should be prioritized, a practice that may include the use of interpreters.
Linguistic diversity is a defining characteristic of the United States, with over 350 languages spoken in homes (U.S. Census Bureau, 2015). According to the U.S. Census, over 67 million people speak a language other than English at home, a number that almost tripled in a matter of a few decades (U.S. Census Bureau, 2015). Over 100 languages are spoken in the 15 largest metropolitan areas in the United States, with areas such as New York City reaching close to 200 (U.S. Census Bureau, 2015). Additionally, bilingualism and multilingualism represent our global reality (De Houwer, 2021; Rothman et al., 2022), given that over half of the world's population is bilingual (Grosjean, 2010). What is more, recent data have shown that close to 23% of the population in the United States (approximately 70 million individuals) is bilingual, a number that encompasses not only those who speak both a language other than English and English at home but also those children under 5 years of age, and those who may speak a second or even third language regularly but only speak English at home (Grosjean, 2021). These numbers may be driven by the increase in immigration observed in the last decades, as well as by the fact that the number of heritage language speakers has seen a steady growth over time (Nagano, 2015).
Despite the large number of speakers of different languages, as well as of bilingual speakers in the country, not all areas within the rehabilitation sciences have been equally invested in cross-linguistic and/or bilingual work. Within the field of motor speech disorders, for example, cross-linguistic research has been traditionally overlooked, potentially as a result of the seeming universality of the neurophysiology of motor control (Miller et al., 2014). Moreover, English-centric approaches to speech disturbances have represented the canon of work when working with linguistically diverse clients, despite the inherent differences found across languages. Such differences, however, are not the only aspect that influences clinical practice. Language represents a means of cultural expression (Raikan et al., 2020); that is, it allows the communication of concepts and symbols that embody the values of any ethnic group. Therefore, potential cultural differences are to be acknowledged and honored when providing clinical services so that culturally responsive practices (i.e., those that “take the client's cultural perspectives, beliefs, and values into consideration in all aspects of education or providing a service”; Hyter & Salas-Provence, 2019) can be ensured. In this tutorial, we examine the concept of universality in dysarthria, with a focus on Parkinson's disease (PD); the importance of shifting our attention to language-specific characteristics of dysarthria to identify treatment targets appropriate to the linguistic background of our clients; the need to provide culturally responsive evidence-based practice (EBP), and the role of interpreters to ensure the culturally and linguistically valid management of those who speak a language other than English.
Language Universal Features of Dysarthria Associated With PD
Hypokinetic dysarthria associated with PD has been widely characterized in the English literature, with the most prevalent voice and speech features being hypophonia; prosodic insufficiency, which involves features such as monopitch, monoloudness, reduced stress, short phrases, and variable rate; and imprecise consonant articulation (Duffy, 2020). Other relevant features such as dysfluencies and poor voice quality have also been reported (Craig-McQuaide et al., 2014; Holmes et al., 2000).
As discussed above, universality in dysarthria may stem from the perspective that the neurophysiology of motor control in a given pathology, like PD, must be uniform or universal across languages. That is, in PD, there are certain pathology characteristics that are shared among individuals affected by the disease regardless of their linguistic background, such as underscaling and decay of movement amplitude, akinesia and bradykinesia, deficits in sensory processing, and impaired automaticity, among others (Armstrong & Okun, 2020; Sapir, 2014).
Perceptually, ease of understanding, or the degree of effort required by a listener to decode a speaker's utterance (Connaghan et al., 2021), has been shown to differ between speakers with and without dysarthria across different languages. A study with Spanish speakers with dysarthria (Moya-Galé et al., 2023) found significantly lower ease of understanding ratings for speakers with dysarthria compared to speakers without dysarthria. Ease of understanding has also been reported to be overall affected in Mandarin Chinese speakers with this motor speech impairment (Hsu et al., 2019). These data appear to evidence a common or seemingly universal perceptual deficit in dysarthria and an impairment that is likely to influence communication regardless of the primary language of the speaker. Of note, what aspects of speech contribute to the same observed decreases in this perceptual domain across two different languages warrant further exploration, as in the case of tonal versus nontonal languages, for instance. Self-perceptions of disability due to voice and speech deficits have also been reported in different languages, such as Farsi (Majdinasab et al., 2012; Saffarian et al., 2019), Spanish (Moya-Galé et al., 2018), Italian (Di Pietro et al., 2022), Korean (Sunwoo et al., 2014), or Portuguese (Guimarães et al., 2017), among others. This evidence from speakers with dysarthria around the world indicates that voice difficulties are indeed a shared concern among patients.
Acoustically, the observed sensorimotor disturbances caused by dysarthria have also been shown to impact voice and speech similarly across different languages. For example, reduced sound pressure level has been widely documented in the non-English literature (Iidaka et al., 2018; Sauvageau et al., 2015; Whitehill et al., 2011), a finding that could reflect speakers' inability to sustain the amount of effort required to increase vocal intensity (Ho et al., 2001). As regards to speakers' articulatory skills, a reduced vowel space area has been consistently reported among individuals with PD who speak languages from different language families or different branches within the same language family, such as Spanish (Moya-Galé et al., 2023), Korean (Kim & Choi, 2017), Mandarin Chinese (Hsu et al., 2017), French (Sauvageau et al., 2015), or German (Baumann et al., 2018). These findings indicate that regardless of the phoneme inventory size, there is a common tendency toward the centralization of vowel space. Similarly, consonant misarticulations due to hypokinetic articulation have also been reported; for instance, those affecting voice onset time in plosives in Korean speakers with PD (Kim & Choi, 2017) or Hindi speakers with PD, for whom retroflex sounds have been observed to be significantly affected (Saxena et al., 2014). Prosodic deficits, which constitute a hallmark of hypokinetic dysarthria associated with PD, have been reported in a variety of languages, including Cantonese (Whitehill et al., 2011), Portuguese (de Azevedo et al., 2015), Czech (Rusz et al., 2011), German (Skodda et al., 2011), Finnish (Tavi & Penttilä, 2023), or Japanese (Ikui et al., 2015). Lastly, poor voice quality, as measured by the proportion of energy below 1 kHz, has been identified in Finnish speakers with PD (Penttilä et al., 2023), as well as in Swedish speakers (Steurer et al., 2022), as measured by the Acoustic Voice Quality Index (Barsties & Maryn, 2016), an objective measure of dysphonia.
All these findings converge on the fact that motor involvement does seem to have a universal impact on overall communication for speakers of different languages. A step further, however, should be taken to explore how these common characteristics differentially affect speakers' ability to be understood based on their linguistic background.
Toward a Language-Specific Appreciation of Dysarthria
Despite shared cross-linguistic speech deficits associated with PD, the relative impact of those on speech intelligibility, or their ability to predict the degree of functional impairment, depends on the language of the speaker and the listener (Kim & Choi, 2017). Hence, research (and also clinical practice) should move away from an English-centric view of dysarthria (Liss et al., 2013), which, when applied to all languages, may only account for the universal speech deficits observed. Instead, the relative contributions of language-specific speech features to intelligibility should be acknowledged in any given speaker with dysarthria. This means embracing a language-specific approach to the description and management of the observed speech deficits. In other words, although we may describe a universal impact on communication, how dysarthria influences different elements of speech and how those ultimately affect speakers' interactions are unique to each individual language (Pinto et al., 2017). Furthermore, cross-language comparisons are also needed to establish the extent to which findings from anglophone countries can be generalized to speakers of other languages. In a recent study with Finnish speakers with dysarthria, for example, male speakers with PD were found to have more difficulty expressing prosodic prominence than male controls. This may pose a particular challenge to intelligibility and naturalness as perceived by Finnish listeners, as fundamental frequency is a relevant acoustic cue to signal word boundaries in this language, which is characterized by exceptionally long words (Penttilä et al., 2023). In another recent study with Spanish speakers with dysarthria, the formant centralization ratio, which has a strong validity as a vowel centralization measure (Fletcher et al., 2017) and is strongly correlated with intelligibility (Lansford & Liss, 2014) in English speakers with dysarthria, was not found to significantly predict ease of understanding in Spanish (Moya-Galé et al., 2023), as rated by 15 listeners on a visual analogue scale. This measure, nonetheless, was significantly different between speakers with PD and controls (i.e., it was larger in speakers with dysarthria), a finding that replicated those in other languages. Hence, the relative weight of vowel centralization on ease of understanding may be less for Spanish speakers with dysarthria than for English speakers with dysarthria, whose vowel inventory is larger. In a study directly comparing acoustic predictors of speech intelligibility between Korean and English, Kim and Choi (2017) reported that acoustic vowel space made the largest contribution to the variance in speech intelligibility, which was measured on a 10-point equal appearing interval scale, for both languages, while voice onset time contrast was a significant contributor to the Korean regression model only. This finding reflects language-specific speech contributions to intelligibility as Korean has three voicing cognates for plosives (lax, tense, and aspirated), whereas English has only two (voiced and voiceless; Kim & Choi, 2017). Based on the findings and adding to the emerging literature, the authors speculated that the basis of an intelligibility deficit in dysarthria is, therefore, likely to depend on the given language of the speaker and listener.
Another language-specific consideration arises with tonal languages, such as Cantonese or Mandarin Chinese, which use lexical tone to signal word meaning (Whitehill, 2010). Tones produced by Cantonese-speaking individuals with PD, for instance, have been found to be more difficult to identify than those produced by controls (Wong, 1999). Tonal languages require precise control over small temporal units (i.e., syllables) through fundamental frequency modifications (Whitehill & Wong, 2007). Inability to exert such control may then lead to decreased intelligibility and ease of understanding (Hsu et al., 2017). Therefore, contributions of tone to intelligibility should be carefully explored to inform clinical decisions. These language-universal and language-specific considerations carry important clinical implications for treatment and may reflect a hybrid approach to intervention, one in which global aspects of the disease are addressed first, as the individual language-specific needs of a given patient are also met (Levy & Moya-Galé, in press).
Managing linguistically diverse speakers with dysarthria also entails understanding and honoring cultural differences that may exist between the client and the clinician. Cultural barriers have been reported as one of the primary barriers in rehabilitation services, together with language access and limited resources (Grandpierre et al., 2018). Cultural barriers include, but are not limited to, clinician and client interactions, establishing rapport, diagnosis, treatment-related decision-making processes, and client engagement in therapy (Grandpierre et al., 2018). In the next section, the intersection between language and culture is discussed with a focus on the need to develop culturally responsive EBP and the involvement of interpreters in speech and language rehabilitation services.
The Language and Culture Intersection: Culturally Responsive EBP Within Precision Medicine and the Case of Interpreting
The EBP triad includes the following components: (a) evidence (internal and external), (b) clinical experience, and (c) client perspectives (American Speech-Language-Hearing Association [ASHA], 2023c). The third component of the triad has been highlighted in recent literature (e.g., Brown et al., 2012; Cohen & Hula, 2020; Mahendra, 2012; Roulstone, 2015), reinforcing that the clinical community recognizes the value in collaborating with clients and caregivers/care partners on treatment outcomes. How client perspectives are integrated into EBP, however, can take place in myriad ways. Here, we suggest that culturally responsive treatment approaches, emphasizing linguistic access to treatment, result in optimal precision medicine (Allison-Burbank & Reid, 2023). Culturally responsive approaches to speech and language clinical service delivery center multiple ways of knowing (Allison-Burbank et al., 2023). That is, the clinical knowledge and experiences of the speech-language pathologist (SLP) represent one way of knowing, whereas lived experiences of our clients provide equally valid ways of knowing. Integrating the knowledge of both clinician and client allows us to engage in culturally responsive care and satisfy the client perspectives third of the EBP triad.
Engaging in culturally responsive EBP may involve the use of interpreters when working with linguistically diverse populations. The following sections introduce the notion of interpretation within its legal context, as well as within the context of precision medicine, which also includes patient preferences for interpretation.
Interpretation Policy
The Civil Rights Act of 1964 and Executive Order No. 13,166 (2000) both mandate the use of interpreters in clinical services that take place in medical settings that receive federal funding from the U.S. Department of Health and Human Services (Gracia-García, 2002). The Individuals with Disabilities Education Act (1990) requires the use of interpreters during evaluation and diagnosis in the public education setting, but not during treatment (ASHA, 2023a). The Americans with Disabilities Act (1990) provides American Sign Language interpreters for hard of hearing individuals upon request (for an SLP interpreting framework related to deafness, see Pretto, 2012).
Interpretation as Precision Medicine
Precision medicine has been traditionally defined as assessment and treatment designed for individuals based on an individual's genetic susceptibility to disease or disability (National Research Council, 2011). More recently, its definition has been expanded to include disabilities related to communication (Peter et al., 2022) and applied in a public health model (Allison-Burbank & Reid, 2023). Developing an approach to speech and language treatment that integrates the linguistic environment and individual communication needs of the client contextualizes cultural responsivity within precision medicine. Interpreters can scaffold this integration. If the client and clinician can communicate with one another, the bridge between multiple ways of knowing can be built. Listening to clients' perspectives in their own words, in the language most comfortable to them for communication, allows us to integrate both their linguistic and cultural wisdom into their treatment plan.
Language Access as Precision Medicine
Allison-Burbank and Reid (2023) place precision medicine in a public health model, with indigenous ways of knowing as the foundation of service delivery. Placing the client or caregiver/care partner's worldview as central to the goals and structure of treatment helps to tailor care to the individual. For example, indigenous children are overrepresented as disabled individuals according to the National Center for Education Statistics (2021). Allison-Burbank and Reid (2023) suggested that, in a public health precision care model, the educational spaces of indigenous children should reflect the child-rearing practices of their indigenous communities. Within this culturally responsive approach, the indigenous cultural value of connectedness in the educational environments of indigenous children will serve to prevent misidentification of disability. The construct of connectedness is based on “understanding how all spirit-beings, including family members, other people, and the natural environment, are related and equally demanding of respect” (Mohatt et al., 2011, p. 11). Respecting clients' unique heritages, different ways of learning, and integrating their cultural beliefs into our services is at the core of precision medicine. Decolonizing our educational spaces means indigenous ways of knowing will be recognized and valued. This concept can be extended to our medical and skilled nursing clinical contexts as well. Cultural responsivity is as important to our adult population as it is for pediatrics. Serving our diverse society across the life span using EBP is indeed our charge as SLPs (ASHA, 2023b).
Culturally Responsive Practice and the Role of Language Access
A total of 91.3% of ASHA-certified SLPs identify as White, non-Latinx, and 91.8% identify as monolingual English speakers (ASHA, 2021). Hwa-Froelich and Vigil (2004) discuss culture on a continuum of cultural attributes, including responsibility relationships, interpersonal relationships, and risk management. Cultural values can vary in terms of interdependence and independence, power structure, individualism and collectivism, and risk aversion. Importantly, culture values exist on continua, and families within the same culture can differ in how their values are ranked.
Generally speaking, White, middle-class Americans value independence, low power/distance, and weak uncertainty/avoidance. Power/distance relates to interpersonal relationships and how differences in power determine social distance through a greater or lesser degree of formality, while uncertainty/avoidance refers to how individuals within a cultural group view risk management and change (Hwa-Froelich & Vigil, 2004). White American English culture prioritizes the nuclear family at the center of decision-making processes, encourages risk-taking, and promotes equality among members of the family (Grandpierre et al., 2018; Hwa-Froelich & Vigil, 2004). Cultures on the opposite end of those continua may conduct decision-making on health care issues among multiple members of the extended family, may warn against risk-taking, and may operate in a hierarchical power structure (i.e., there is a specified decision-maker in the family; Hwa-Froelich & Vigil, 2004). With the majority of SLPs identifying as White, middle-class, monolingual English-speaking women, cultural attributes and values of the clinician often align with the institutional structures in which we make treatment decisions (i.e., hospitals and skilled nursing facilities). The tendency for treatment design and implementation to mirror that of the clinician, and not to integrate client perspectives (especially when they conflict significantly from the clinic and clinician) is often the norm (Sadusky et al., 2023; Woods-Giscombe et al., 2016). To take a precision medicine approach, it is integral that clinicians develop an individualized approach to treatment that identifies the drivers of patient well-being (i.e., cultural values, feelings of connectedness, level of family support, or interaction style; Allison-Burbank & Reid, 2023).
Let's contextualize the notion of precision medicine with a specific ethnic group: the Latinx/Latine/Hispanic community. Hispanics represent the largest minority group in the United States (Velasco-Mondragon et al., 2016) and have one of the highest incidence rates of PD in the country (Van Den Eeden et al., 2003; Willis et al., 2010). Cultural sensitivity has been reported as one of the major barriers to health care access in this population, which results in decreased access to rehabilitation and preventive health services (Velasco-Mondragon et al., 2016), both key aspects of, for example, dysarthria management. Within the premise of precision medicine, therefore, core cultural values would be emphasized and bestowed relevance in the therapeutic process. Familism, for instance, reflects a common value of Latinx culture and refers to high levels of social support within extended family networks (Franzini et al., 2001), although factors like socioeconomic status may also be important determinants of social support (Almeida et al., 2009). Overall, however, and especially for foreign-born Hispanic immigrants, family ties for support represent a highly valued cultural aspect (Almeida et al., 2009), which should be, therefore, placed at the center of patients' care.
Cultural and linguistic gaps exist between SLPs and patients in our diverse U.S. society. The skills that SLPs lack, however, can be scaffolded using interpreters. To adapt this precision model of care to adults with PD, or motor speech disorders in general, the SLP must identify the core cultural values of the patient, a process that is facilitated by language access. Approximately 30% of SLPs, however, report no training in the use of interpreters for clinical practice (Santhanam et al., 2019, p. 137). This lack of skill creates a clinical challenge because treatment goals that integrate client perspectives directly into treatment plans allow SLPs to engage in EBP, regardless of language background. SLP understanding of the patient's linguistic environment, motivators for treatment, and contributors to overall well-being will all contribute to successful treatment outcomes (Allison-Burbank & Reid, 2023). Teaching SLPs culturally responsive EBP practices is another way to scaffold SLPs' competence when serving clients from nonmainstream backgrounds (Horton & Muñoz, 2021). Clinicians should be educated in (a) cross-cultural communication, which involves both verbal and nonverbal aspects of communication; (b) relationship building, so that clinicians demonstrate the knowledge, awareness, and sensitivity to engage with families; (c) client orientation to ensure clients' understanding of treatment objectives; (d) complex intersections of identity, which may include religion, race, or gender; (e) cultural beliefs of disability; and (f) any cultural factors involving sociopolitical and structural barriers that could impact the outcomes of treatment (Horton & Muñoz, 2021; Hwang, 2006).
Patient Preferences for Interpretation
Focusing in on the adult population in the realm of oral language, it is common in medical settings to observe the use of remote telephone or teleconferencing interpretation services as well as in-person interpreters that are summoned upon request (Blackstone et al., 2011; Saenz & Langdon, 2019). As the number of diverse language users grows in many parts of the United States, teleconferencing methods are commonly used in medical settings to remain in compliance with federal regulations while providing access to a wide array of languages (Seeber & Fox, 2021). Telephone interpreting, in exchange for efficiency and convenience, brings challenges to assessment and treatment of communication disabilities. Nonverbal aspects of communication are unavailable to the clinician–patient–interpreter triad during phone interpretation, so subtle cues like body language and posture are missing (Gracia-García, 2002). Teleconferencing has added the visual aspects of communication lacking in telephone interpretation and is preferred over phone interpretation (Locatis et al., 2010), but in-person interpreting services are preferred by most patients (e.g., Locatis et al., 2010; Steele et al., 2020). This suggests that communication mode (in-person vs. remote) impacts clients' perceptions of quality care and, thus, it should be an aspect under consideration when interpreting is required.
Language access preferences are not monolithic; however, some racial and ethnic groups are statistically more likely to report language preferences than others. For example, in one study with Arabic-, Urdu-, and Romani-speaking ethnic groups that focused on patients' perspectives on interpreting in primary care settings, data from semistructured interviews showed that only Arabic and Urdu speakers expressed preferences for interpreters who spoke a particular dialect of their language (Steele et al., 2020). In another study, only Asian patients (as compared to White, Black, or mixed patients) indicated treatment in their heritage language was preferred (Williams et al., 2016). In Sleath et al. (2009), 52% of Spanish-speaking patients preferred to receive verbal information without the help of an interpreter and 21.5% preferred the support of an interpreter when receiving new medication. Patient preferences for language access will not be uniform across minoritized racial and ethnic groups, therefore, taking an individualistic approach, or precision medicine approach, to clinical service delivery will better serve the needs of patients.
Conclusions
Living in a global and diverse society means that clinicians and researchers must engage in linguistically and culturally appropriate considerations when working with clients with motor speech disorders, such as speakers with dysarthria associated with PD. While “universal” representations of dysarthria may be part of the big picture, language-specific contributions to speakers' intelligibility should be carefully examined to maximize treatment outcomes. The interpretation needs and preferences of patients should be included in a culturally responsive, precision medicine approach to treatment of motor speech disorders within our diverse society. Language access is critical for incorporating client perspectives into EBP, the optimal approach to speech-language intervention services. A “one size fits all” approach to interpretation does not match with precision medicine; therefore, consideration of the individual language access needs of each patient, regardless of language ability or background, should be centered.
Data Availability Statement
No data sets were generated or analyzed for the current article.
Acknowledgments
This work is partly supported by the Michael J. Fox Foundation for Parkinson's Research (awarded to Gemma Moya-Galé) and by National Institutes of Health (NIH) Grants R01DC020468 (awarded to Yunjung Kim) and 5R01DC16624-04 (awarded to Leah Fabiano). This manuscript is the written version of the invited session at the 2022 Convention of the American Speech-Language-Hearing Association, which was organized by the Convention Planning Committee on Motor Speech Disorders and Other Speech Sound Disorders in Adults (3Ms: Management of Multilinguals with Motor Speech Disorders).
Funding Statement
This work is partly supported by the Michael J. Fox Foundation for Parkinson's Research (awarded to Gemma Moya-Galé) and by National Institutes of Health (NIH) Grants R01DC020468 (awarded to Yunjung Kim) and 5R01DC16624-04 (awarded to Leah Fabiano).
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