Achieving Language Justice in Pediatric Hematology-Oncology: A Multinational Perspective for Language-Concordant Equitable Patient- and Family-Centered Care and Research Inclusion

Abstract

Language-discordant healthcare encounters—when the patient/caregiver and clinician are not able to communicate directly in the patient’s/caregiver’s preferred language—are associated with worse quality of care, increased adverse events, and research exclusion. Here, we describe the current state of language justice in clinical practice and research in the United States, Canada, and Spain, discuss the role of social determinants of health and language in patient safety and health outcomes, and review an example of culturally and linguistically concordant interventions to increase research participation. We close with practical and global strategies to increase multilingual research participation and to provide equitable patient- and family-centered care in pediatric hematology-oncology.

1 |. Introduction

In 2020, there were 281 million international migrants, mostly residing in Europe and the United States (US) [1]. Living outside of one’s native country brings unique challenges, which are compounded if the dominant language of the new country differs from the migrant’s primary language [2]. Language-discordant healthcare encounters (i.e., when the patient/caregiver and the clinician are not able to communicate directly in the patient’s/caregiver’s preferred language) [3] are associated with worse quality of care [4], increased adverse events [5], and research exclusion [6]. Embracing language justice, or the act of creating inclusive multilingual spaces where all languages are valued equally, is an essential step to improve clinical care and outcomes [7]. In this report, the collective experience of a group of investigators focused in language justice research provides illustrative examples based on research experiences and literature review, following the outline presented at the 2024 American Society of Pediatric Hematology/Oncology (ASPHO) annual meeting. We describe (i) the emerging state of language justice in clinical practice and research in the US, Canada, and Spain; (ii) the role of social determinants of health (SDOH) and language in patient safety and health outcomes; (iii) an example of culturally and linguistically concordant interventions to increase research participation; and (iv) practical strategies to increase multilingual research participation and to provide equitable patient- and family-centered care in pediatric hematology-oncology.

The proposed best practices to achieve language justice in clinical care and research will be framed by a review of key terms and definitions. Minoritized languages refer to languages less often commonly spoken in the respective region, also appreciating the influence of political, economic, and cultural power differentials [8]. Translation is the act of transferring written material from one language into an equivalent written material in another language [9]. Interpretation is the act of listening to something in one language and orally rendering it in another language [9]. Language access is the act of providing language services (e.g. interpretation and/or translation) to ensure individuals who speak minoritized languages can access services [7].

2 |. A Multinational Perspective on Language Justice

In this section, we provide a broad overview of languages spoken in the US, Canada, and Spain as well as local regulations.

2.1 |. The United States

The US is one of the few nations in the world that does not have an official language [10]. English is the most widely spoken language; however, over 69 million people speak languages other than English (LOE) [11] representing over 350 languages [10]. Spanish is the most common language other than English spoken in US homes, followed by Chinese, Tagalog, Vietnamese, and Arabic [10].

US federal regulations mandate access to language services for individuals that speak LOE or are deaf/hard of hearing at any institution receiving federal funding from the Department of Health and Human Services (HHS) [12]. Title VI of the Civil Rights Act prohibits recipients of federal funding from discriminating against individuals because of race, color, or national origin [12]. In Lau versus Nichols (1974), US Supreme Court ruled excluding individuals who use LOE is national-origin discrimination [13, 14]. The National Standards for Culturally and Linguistically Appropriate Services (CLAS) have defined standards related to communication and language access stating that healthcare institutions are expected to: (a) offer language assistance at no cost, (b) inform individuals of the availability of language assistance services, (c) ensure the competence of individuals providing language assistance, and (d) provide easy-to-understand print and multimedia materials in the languages commonly used by the populations served by the institution [15].

2.2 |. Canada

Canada has two official languages, English and French [16], and also has a distinct landscape of Indigenous languages, embracing a rich multilinguistic diversity connected to its vast history of immigration. Recent Canadian census data demonstrated that neither English nor French is the predominant language spoken at home for 13% of Canadians, nor the native language for a quarter [17]. Moreover, there is wide geographic variation among languages most commonly spoken [18].

Canada affirms the importance of protecting multicultural diversity broadly in legislation such as the Canadian Charter of Rights and Freedoms [19], the Canadian Human Rights Act [20], and the Canadian Multiculturalism Act [21]. Legislation relevant to multilinguistic diversity includes the Official Languages Act and the Indigenous Languages Act [22, 23]. In healthcare, the Canada Health Act establishes a primary objective: “To facilitate reasonable access to health services without financial or other barriers” [24]. In a landmark case in 1997, the Supreme Court of Canada ruled that hospitals are obligated to provide interpretation services to deaf/hard of hearing persons, highlighting that “effective communication is quite obviously an integral part of the provision of medical services” [25]. The importance of interpretation in providing high-quality, language-concordant care has been recognized by the Canadian Paediatric Society [26], the Canadian Medical Protective Association [27], and the National Newcomer Navigation Network [28].

2.3 |. Spain

Spain is a multicultural country with 17 independent regions and three co-official regional languages other than Spanish: Catalan, Galician, and Basque [29]. Spain is the fourth country in Europe by immigration numbers and the 10th worldwide, attracting significant immigration from Latin America, Africa, and Eastern Europe [30]. Therefore, increasing concerns regarding language discordance are structural in Spanish society. For example, in the Pediatric Cancer Center of Barcelona, the largest in Spain and one of the largest in Europe, approximately one-third of patients are non-Spanish. Predominant languages among foreign patients include Russian, Chinese, Arabic, Polish, and English [31]. The Council of the European Union states that “Healthcare systems of the Member States should respond to the needs of the populations and patients that they serve and provide patient-centered care that ensures that no patient is discriminated against because of their cultural background, religion, or race” [32]. However, Spain laws do not mention the obligation for public authorities to provide interpreting services in the healthcare setting, and medical interpretation is not yet an established profession in Spain [33].

3 |. Role of Social Determinants of Health and Language in Patient Safety and Disparate Clinical Outcomes

Inadequate healthcare systems, structural discrimination, and adverse SDOH are intertwined as drivers of health disparities [34]. SDOH are nonmedical factors that contribute to disease risks and healthcare outcomes. They include conditions in the environment where people are born, live, learn, work, play, and age that affect health, functioning, and quality of life [35]. Social advantages in language fluency, income, education, neighborhood, health literacy, and work opportunities are associated with improved resources, nutrition, health behaviors, and overall health outcomes. For children, it is essential to consider the entire family when addressing SDOH.

Medical errors are a leading cause of death in the US [36], and communication failures are identified as a key contributing factor [37]. Patients who speak minoritized languages face a heightened risk of these errors [5, 38–41]. For instance, hospitalized children in the US whose parents use a language other than English for medical communication experience over twice the rate of adverse events as their counterparts [5]. Patients who speak minoritized languages are also at higher risk of hospital-acquired infections, prolonged length of stay, and readmissions [38]. These safety gaps stem from several factors, including implicit bias, discrimination, and systemic barriers such as inadequate use of interpreters [42], and limited access to translated discharge instructions and patient education materials [43–47].

4 |. Culturally and Linguistically Concordant Interventions to Improve Research Inclusion and Informed Consent for Clinical Trials

In this section, we summarize available literature regarding research exclusion for individuals who speak minoritized languages (from all three countries) and provide illustrative examples that promote research inclusion based on our collective experiences.

Of over 14,000 studies registered on ClinicalTrials.gov, less than 3% mention multilingual translation [48]. In the US, 90% of pediatric research studies only include English-speaking participants [6], with the remainder predominantly including Spanish only [6]. This exclusion leads to biased research results, lack of generalizability of findings, and perpetuates mistrust in research. Such exclusion in federally funded research and clinical care is proscribed under US Federal Regulations [12–14]. In Canada and in Spain, additional considerations include more than one official language, which can result in speakers of an official language still facing language barriers when navigating healthcare depending on their geographic location [49] and on multiple nondominant languages spoken across the countries [29].

To expand multilingual inclusion in clinical research, Coffin et al. developed and applied a translation methodology that balances rigor, equity, and feasibility [50]. This methodology involves the following steps to translate and culturally adapt materials: (I) identify target population, languages, and scope based on timeline and budget; (II) professionally translate materials; (III) engage bilingual community members fluent in English and the target language: (a) to independently review professional translations for accuracy, tone, and cultural considerations, and then (b) meet as a group to review and reconcile edits; and (IV) conduct cognitive interviews and revise translations with patients and/or community members before making final edits. This methodology has been used to translate and culturally adapt multilingual materials for two ongoing pediatric research studies (R01HS028930 [51] and PCORI AD-2021C3-24848 [52]) and is an illustrative example of our research experience in this field. While translation methodologies vary, and can be adapted based on intent, audience, and scope, having a systematic approach to multilingual inclusion in research and clinical practice is essential.

Relatedly, barriers to informed consent for pediatric cancer clinical trials include complex and difficult-to-understand forms [53], mistrust in the healthcare system [54], and urgency of starting cancer treatment, leaving little time for decision-making.

Patient–clinician communication during informed consent is an understudied area of research, particularly the role of SDOH, such as language, health literacy, and acculturation [53]. Health literacy is closely linked to literacy and entails the individual’s knowledge and skills to access, comprehend, and apply health information and thereby make informed health decisions [55]. Limited health literacy is associated with worse health outcomes and quality of life and limited decision-making ability [55]. Individuals who use minoritized languages for medical communication may have difficulty understanding health information in English. For example, one US cross-sectional study of caregivers of children with cancer found that Hispanic/Latinx caregivers who used Spanish for medical communication were at higher risk for limited health literacy [56]. A similar multicenter Canadian study explored the experiences of parents of children with cancer who self-reported difficulty communicating in English and identified challenges with communication and access to health services, including adequate interpretation services [4]. In Spain, colleagues report that out of21 pharma-sponsored clinical trials recruiting patients between 2017 and 2022, only two of them provided interpreters facilitated by the sponsors, and that research consents are usually only available in Spanish, and that interpretation services are not always available “after-hours” (A. Morales La Madrid, personal communication, July 4, 2024).

Limited health literacy and use of Spanish language for medical communication have been associated with lower comprehension of the essential elements of informed consent for pediatric cancer clinical trials, including risks, procedures, randomization, and alternatives [57]. In a qualitative study to assess facilitators of informed consent, parents suggested enhancing interpretation services and resources in Spanish, improving language-concordant information delivery by the physician, and having a “lay person” to provide language-concordant anticipatory guidance before the informed consent and explain complex terms [58]. Therefore, interventions designed to enhance patient–clinician communication during informed consent are urgently needed.

To address this gap, Aristizabal et al. [59] developed COMPRENDO (ChildhOod Malignancy Peer REsearch NavigatiOn), a peer-navigation intervention to improve comprehension of informed consent for childhood cancer clinical trials by providing language- and culture-concordant anticipatory guidance. Preliminary results show a significant improvement of comprehension of clinical trials among parents receiving the intervention, with greater improvements in Hispanic/Latinx individuals and those who use Spanish for medical communication. Diverse representation in clinical trials is critical to achieve equity in cancer outcomes.

5 |. Practical Strategies to Increase Research Participation and Provide Optimal and Multilingual Patient- and Family-Centered Care

Concerted efforts to collect data more consistently and robustly on language preferences alongside other SDOH are necessary to inform clinical research and ultimately improve patient- and family-centered care. In Canada, preferred language data collection is mandated by provincial health authorities [60]. Within pediatric hematology-oncology specifically, improving the collection of sociodemographic data is one key priority of ACCESS [61], the Canadian Paediatric Cancer Consortium recently formed to support a national strategy for pediatric oncology research and care in Canada [62, 63]. The Children’s Oncology Group (COG) Diversity and Health Disparities Committee and Language Equity Working Group have similar ongoing efforts to improve collection of sociodemographic data and promote language equity and clinical trials inclusion [64, 65].

We provide the following practical strategies to increase research participation and improve clinical care among multilingual communities.

5.1 |. Strategies to Increase Research Participation

Figure 1 summarizes three core targets for strategies to increase research participation among multilingual communities. (i) Informed consent: Planning for multilingual research methods at the design phase of the study, including budgeting for interpretation services and translation of study materials, consent forms, and educational resources [67–69]. Partnering with professional medical interpreters at every informed consent discussion during research recruitment is equally important [70]. (ii) Building strong community partnerships: Collaborating with community organizations, researchers, and persons with lived experience to provide input on research priorities, engagement strategies, and locally appropriate data governance policies helps to build trust, facilitates access to research in the community, and creates more inclusive research [66, 67]. (iii) Institutional language access: Developing policies that prioritize language access and promote equitable communication practices in research settings, including allocating resources for interpretation services, translation of study materials, and staff training [71]. By adopting these strategies, we can enhance research participation among linguistically diverse populations, and ultimately achieving equitable outcomes.

FIGURE 1 |.

Practical Strategies to Increase Research Participation.

5.2 |. Strategies to Provide Language-Concordant and Optimal Patient- and Family-Centered Care

Advocating for language justice in clinical care involves a multilevel approach. At the individual/family level, we must engage patients/caregivers and their families with cultural humility (a lifelong commitment to self-evaluation and self-critique to remedy the power imbalances present in the patient–clinician dynamic) [72] and respect for linguistic diversity. Partnering with professional medical interpreters during each encounter is recommended as their participation is associated with fewer errors in communication, improved patient satisfaction, lower malpractice risk, and significantly shorter hospital stays [73, 74]. Clinicians employing best practices that facilitate the process of communicating via a professional medical interpreter are essential to minimizing interpretation errors and ensuring effective communication [75–78]. Table 1 summarizes best practices for working with interpreters. When families decline interpretation services, clinicians should explore reasons for declining, encourage interpreter use by reassuring and normalizing medical interpretation, clarify that patients and families are entitled to interpretation services for free (if applicable to the country), offer options (in-person and/or technology-based, if available), and emphasize the importance of clear and effective communication [78, 79]. At the institutional level, systematic processes to document language used by the patient/family for medical communication in the medical record, equip hospitals and clinics with professional interpretation services, translate patient educational materials, and ensure appropriate training of staff on partnering with medical interpreters are needed. An example of translated family education materials is the COG Family Handbook [80], which is available in three languages (English, French, and Spanish). An example of an institution-led intervention to support families that use Spanish for medical communication was the creation of a Limited English Proficiency Patient Family Advocate that was well received by families [81]. Lastly, at the state and federal levels, legislation and funding must advocate for language justice, and support institutions with the resources to provide language-concordant care.

TABLE 1 |.

Best Practices for Communicating with multilingual families via a professional medical interpreter.

Phase	Best practice
Prior to the encounter	• Embrace the fact that just as a complex or very ill patient requires additional time, so does a patient requiring interpretation
	• Briefly huddle with the interpreter to give pertinent background and set communication and topic goals
Start of encounter	• Introduce the interpreter as part of the medical team
	• Seat the interpreter next to or slightly behind the patient/caregiver
During the encounter	• Speak directly to the patient/caregiver
	• Speak in short sentences or short thought groups
	• Ask only one question at a time
	• Allow appropriate time for the interpreter to finish each statement
	• Avoid the use of idioms, acronyms, or jargon
	• Use “teach back” or “show me” techniques to ensure patient/caregiver comprehension
	• Summarize key points
After the encounter	• Debrief with the interpreter and encourage feedback to improve future encounters
	• Document use and name or identification number of interpreter
Recommendations on responding to families declining an interpreter
• Explore why families are declining an interpreter
• Reassure and normalize use of interpretation services
• State that the interpreter is present for clinicians, not just the patient/family
• Offer the interpreter to be present in the background as backup only if needed for the family or provider to flag if anything requires interpretation; that they can dismiss interpreter mid-encounter if truly not needed
• Clarify that they are entitled to interpretation services for free (if applicable to the country)
• Offer options (in-person and/or technology-based [audio or video], if available)
• Emphasize the importance of clear and effective communication

6 |. Summary

In summary, we provide illustrative examples centered on language justice, clinical care, and research inclusion for linguistically diverse patients in the US, Canada, and Spain that are applicable globally.

Barriers to language-concordant, patient- and family-centered care have a substantial impact on clinical outcomes and research inclusion in pediatric hematology-oncology. To address these challenges, we recommend (i) standardized methods of identifying and recording language preference of patients/caregivers; (ii) inclusive research practices from study design to dissemination of results to the public; (iii) active partnership with medical interpreters and community members with lived experience; and (iv) implementation of targeted interventions to improve healthcare and clinical outcomes for diverse multilingual populations. We hope this report provides a starting point for the local and international pediatric hematology-oncology communities to prioritize language justice for all, through patient- and family-centered care and inclusive research.

Abbreviations:

ASPHO

American Society of Pediatric Hematology/Oncology

COMPRENDO

ChildhOod Malignancy Peer REsearch NavigatiOn

HHS

Department of Health and Human Services

LOE

languages other than English

SDOH

Social determinants of health

US

United States (of America)

Data Availability Statement

Data sharing is not applicable to this article as no datasets were generated or analyzed during the current study.