Promoting Language Justice for Children With Medical Complexity and Their Families: An Urgent Call to Action
Year: 2024
Type: article
Abstract: People who use languages other than English (defined as those whose primary language identity is something other than English)1 comprise nearly 9% of the US population.2 Sixty percent of children who are first- or second-generation immigrants (1 or more parents born outside of the United States) have at least 1 caregiver who use languages other than English.3 These caregivers and their children experience health and health care disparities, including worse health care access, lower health care quality, and higher experiences of adverse medical outcomes.4,5 To address these disparities, health care systems must implement a language justice approach,6 whereby the responsibility of provision of linguistically affirming services is shouldered by health care systems rather than patients, and where language services are seamlessly interwoven into all parts of a patients’ health care experience.In this edition of Hospital Pediatrics, Luercio et al take a step to further elucidate how best to implement language justice in health care settings by conducting interviews around inpatient hospital communication challenges and opportunities with Spanish-speaking parents of children with medical complexity (CMC) and hospital staff members.7 Trust emerged as a cross-cutting facilitator to optimal communication. Trust in the medical system is critical and deeply interwoven with improved health care access, quality, and health outcomes.5,8 However, mistrust of health care is often well justified because of historical and current day harm perpetrated against marginalized communities, including families who use languages other than English. Trustworthiness, or actions taken by health care clinicians and systems to show they are deserving of trust, is an important paradigm shift9,10 and aligned with a language justice approach.Luercio et al noted how participants shared that caregivers would ask for interpreters if not provided. To foster trustworthiness, health care systems should implement strengths-based and affirming strategies to identify patients who use languages other than English and provide them with linguistically affirming services. Universally screening all families on registration with a question such as “What language would you like for your care today? We have free and confidential interpreter services available” will ensure that families do not need to advocate for language services and that they will receive services seamlessly throughout their health care experience. Individuals within a family may have different language identities (ie, the child, caregivers); therefore, in pediatric settings, it is critical to ask and document each caregivers’ (and for children and adolescents, the patient’s) language identity.11Use of certified, professional interpreters is required in health care settings under Title VI of the Civil Right Act, Executive Order 13166, and Section 1557 of the Affordable Care Act. However, similar to other studies, Luercio et al uncovered the use of “workarounds” when language services are unavailable or underused, including ad hoc interpreters, families being asked to use English, or use of nonverbal cues. Ad hoc interpreter use (eg, bilingual staff, use of family members) is associated with suboptimal communication,12 which can be particularly dangerous for CMC who have lower reported health-related quality of life,13 independent of language. It may also be traumatizing for the family member who interprets (eg, interpreting for a sibling’s care) or for the person themself (eg, a survivor of partner violence having their abusive partner interpret). Past studies have also demonstrated how clinicians may use their language skills, even if they are not fluent,14 or may attempt to speak in English with a person who uses languages other than English. Language is complex; although some caregivers may be able to use English in some contexts, it may not be the primary language identity they wish to use when they are in a health care setting or at their most vulnerable. Systems-level solutions are needed to ensure provision of linguistically affirming services, such as universal training for all staff, interpreters being part of mock codes (as it may be harder to remember to use linguistically affirming services during emergencies), review of all clinical protocols and policies to ensure inclusion of provisions around language justice, and integration of language documentation in the electronic medical record.Another systems-level opportunity is hiring and training a culturally diverse and multilingual workforce. Although Luercio et al found that interpreters were highly acceptable, families also desired linguistically concordant staff. Physician–patient language concordance is associated with increased patient satisfaction, patient–physician trust, and medication adherence.15,16 Although ethnoracial concordance is important, language concordance among non-Hispanic White health care workers can still be impactful. The call for workforce diversity is not new and takes time, resources, and long-term investment to recruit, retain, and promote culturally and linguistically diverse staff. High school and university pipeline programs for individuals from racial and ethnic populations underrepresented in medicine, as well as bilingual individuals can foster support and mentoring for those interested in the health care field. Health care training should more broadly offer language courses and assessments to support interest in multilingual learning among medical students, physicians, nurses, medical assistants, and social workers (eg, Clínica Hispana de Cuidados de Salud-CHiCoS program).17Language is integrally intertwined with culture, as shown in this study where participants highlighted their experiences with cultural stereotyping, leading authors to urge cultural humility when serving immigrant, refugee, and families speaking languages other than English. Cultural humility shifts away from considering culture in a superficial or stereotypical way, and instead recommends active listening, power sharing, and continuously understanding how a family’s lived experience may impact their health-related decision making.18 Cultural humility also prioritizes the strength and beauty of culture and language, rather than viewing these concepts from a deficits-based lens and highlights the heterogeneity of lived experiences rather than seeing cultural groups as a monolith. In addition to culture, health care systems must consider the intersecting impacts of structural oppressions on families who use languages other than English. Upward of 4 million US children have at least 1 parent without documentation, who may be fearful to apply for public benefits such as supplemental nutrition, Women, Infants, and Children program, subsidized housing, and social security disability insurance for their CMC.19 These intersecting vulnerabilities may create compounding challenges for families in accessing health care and achieving optimal health underscoring the urgent need for health care systems to create healing-centered spaces that address structural violence.Luercio et al also highlighted the important opportunities and challenges offered by technology to provide linguistically affirming services. Health care has experienced rapid innovation in the past decade, catalyzed by the COVID-19 pandemic, including the advent of telemedicine and the increased use of the patient portal for medical communication. These innovations, although helpful for some, may be widening health care disparities. For example, studies have shown that caregivers who use languages other than English are less likely to access telehealth services compared with caregivers who use English.20 Written communication is now a common way for patients to interact with the health care system, through patient messages, review of notes or patient instructions, and visit reminders. There is currently inconsistent translation of patient-facing written materials and limited options for clinicians to translate patient instructions in real time.21 Providing equitable access to telemedicine services and written health care materials may be even more critical for families with CMC, who need to attend health care visits more frequently and may have more complicated discharge instructions. One consideration mentioned in the article is use of artificial intelligence (eg, Google Translate) to serve as a real-time translator. A 2023 review of machine learning tools for health outreach and communication with communities who use languages other than English showed that more than half presented mixed or inclusive results regarding accuracy and readiness of machine learning for the dissemination of public health information.22 An article from 2021 examining accuracy of Google Translate in translating medication directions and counseling found varying accuracy among Arabic, simplified Chinese, and Spanish translations, with 29% of the inaccuracies considered highly clinically significant or potentially life threatening.23 Although current evidence does not support use of artificial intelligence to augment translation services in health care settings, further work in collaboration with artificial intelligence experts is needed to determine how to develop systems that can promote language justice while also ensuring thriving and longevity for the translator workforce.A critical aspect and innovation of this work is “centering on the margins” or amplifying the voices of families who use languages other than English in policy, practice, and research.24 Past studies have shown that participants who use languages other than English are often excluded from pediatric health research25 and pediatric clinical trials.26 Research representation is a powerful tool to amplify the voices of communities through science, disrupt health disparities, and foster trustworthiness of health care. Research must also align with a language justice approach, ensuring optimal spoken, written, and signed communication with participants in all phases of the research process, including reporting participants’ primary language in publications.6,27 Research with participants must particularly consider equitable inclusion of families with intersecting vulnerabilities (such as caregivers of CMC) and must be conducted in partnership with families and culturally affirming community based organizations.Language justice in health care and research is an essential step toward disrupting health disparities and promoting equity for communities who use languages other than English. Pediatric health care systems have an urgent responsibility to implement evidenced-based, equity-centered practices and policies that foster trustworthiness, provide linguistically affirming services, leverage health care innovations, and promote a thriving workforce of bilingual and bicultural clinicians, interpreters, and translators. Language justice, as a critical aspect of health equity and justice, cannot be an afterthought and must be intentionally incorporated into health care and research to radically change the health care experience for families and promote lifelong thriving for CMC.
Source: Hospital Pediatrics
Language: English
Subfield: General Health Professions
Field: Health Professions
Domain: Health Sciences
Open Access status: bronze
OpenAlex ID: W4401097446