Communicating With Spanish-Speaking Families of Hospitalized Children With Medical Complexity Free

This article explores findings derived both by secondary analysis of qualitative data from a large mixed-methods study²⁹  (“original study” hereafter) on family safety-reporting for hospitalized CMC, as well as additional primary data collection. We conducted semistructured, audio-recorded interviews from December 2018 to August 2022 at 2 large quaternary care children’s hospitals. In the original study, the role of language in communication and safety arose as a prevalent topic during staff and parent interviews. Therefore, our study team (English-speaking and bilingual physicians, nurses, and parents of CMC) augmented the interview guide and conducted additional interviews with Spanish-speaking parents and staff to explore this topic in depth. We used qualitative descriptive methodology³⁰  to explore communication experiences with families who use LOE for care from perspectives of staff and Spanish-speaking parents of CMC. Each hospital’s institutional review board approved the study.

We used criterion-based, purposive sampling of staff and parents in the original study and our subsequent primary data collection.^31,32  Staff included hospital leaders, physicians, nurses, social workers, and case managers caring for CMC inpatient, sampled by level and position. Primary data collection involved additional interviews with Spanish-speaking parents of hospitalized CMC and bilingual social workers. Patients currently/recently admitted to a specialized hospital medicine service for CMC with Spanish-speaking parents were eligible. Participants were recruited by phone, e-mail, or in person, and verbally consented with an information sheet.

The original study’s interview guide explored staff and parent perspectives around hospital safety reporting, including impact of using LOE on sharing safety concerns. We iteratively revised the parent interview guide during primary data collection to include in-depth questions about the role of language and culture in sharing concerns (Supplemental Table 3). We professionally translated the guide into Spanish and piloted it with a native Spanish-speaker.

Semistructured, qualitative interviews (∼60 minutes) were conducted by phone or virtually with staff and parents during/after hospitalization. Trained native Spanish-speaking researchers (B.Q.P., K.L.) conducted parent interviews in Spanish. We audio-recorded interviews, and deidentified, professionally transcribed, and translated them into English (the investigators’ shared language) using a professional transcription/translation service. Translations were verified by a bilingual researcher. Demographics were collected via questionnaires.

We primarily analyzed all transcript data from interviews with Spanish-speaking parents and bilingual social workers, and secondarily analyzed transcripts coded as LOE in the original study. Using inductive and deductive thematic analysis, we identified barriers and facilitators to inpatient communication. Two trained Latinx physician–researchers (M.L., Portuguese-speaker; B.Q.P., Spanish-speaker) independently reviewed transcripts to generate initial codes and draft a preliminary codebook, which was refined through multiple discussions, with validation by a third investigator (A.K., English-speaker). A final codebook was developed and applied to all transcripts. Interviews were dual-coded using qualitative descriptive methodology²⁹  by 3 investigators (M.L., B.Q.P., A.C.) with primary and secondary coders. Discrepancies were resolved by consensus. Data analysis began after most staff interviews were complete (except for bilingual social worker interviews), but occurred concurrently with parent interviews, allowing investigators to iteratively review emerging themes and adjust the interview guide until saturation was achieved. Dedoose³³  software facilitated analyses.

Interviews from 49 individuals (13 parents, 11 physicians, 13 nurses, 6 allied health professionals, 6 leaders) were included in the analysis (Table 1). Five major themes relating to hospital communication with parents of CMC using LOE for care emerged: (1) assumptions and bias regarding specific groups who use LOE, (2) importance of trust and relationships, (3) importance of language-concordant care, (4) workarounds to address communication challenges, and (5) the “double-edged” sword of technology (Table 2). Participants suggested strategies to improve communication with parents who use LOE for care (Fig 1).

Bias, stereotypes, and assumptions affected communication practices with parents of CMC using LOE for care. Staff made generalizations, some contradictory, about different cultures. Some perceived individuals from Hispanic/Latinx backgrounds as very vocal. One physician stated: “I worked in a predominantly Dominican population, and that population was very aggressive.” Others perceived parents as reticent to speak up for fear of being treated differently because of their background, less likely to advocate, and more likely to defer decisions to medical staff. Some assumed parents who used LOE were less educated, and thereby less effective communicators.

Parents sometimes shared these assumptions and occasionally expressed internalized biases. For example, some parents of CMC stated that being from a culture that does not typically question authority was a barrier to communicating freely with providers. Parents worried about being misinterpreted or receiving less attentive care. However, contrary to staff beliefs, most parents of CMC considered themselves strong advocates and acknowledged their willingness to speak up evolved over time as they became more familiar with the medical system and multidisciplinary teams.

Parents and staff emphasized the importance of interpersonal relationships in fostering trust and improving communication. Parents of CMC needed to “feel comfortable” to speak up, often fostered by trust developed in longitudinal relationships with multidisciplinary care teams. Given that CMC are frequently hospitalized and have multiple providers, a cohesive team who knew parents/CMC well and addressed them by name helped build trust. Parents appreciated when staff spent time learning about their child’s often complex conditions and specific health care needs. They had greatest trust in staff with whom they developed longitudinal relationships, like social workers, who actively support families of CMC inpatient and outpatient. Staff agreed that parents were more likely to share their thoughts if they trusted their care team. For example, a Spanish-speaking social worker commented: “Latinos have… that sense of loyalty that if you were the first social worker I met, and you and I had… created a beautiful positive rapport, why would I need to meet with any other?”

Parents of CMC valued open, face-to-face, timely, bidirectional communication with their care teams. They appreciated when staff elicited their perspectives, actively listened, and considered them part of the team. Some parents trusted the system entirely despite experiencing medical errors. Others described their mistrust leading them to keep vigil at their child’s bedside. When trust in the system was broken, parents expected the institution to address issues and prevent future occurrences. Staff who noticed parental mistrust tried to identify its source and rebuild trust.

Language-concordant care, parents speaking their language with staff, also promoted trust and relationship-building. Utilizing bilingual or native Spanish-speaking staff was one way to achieve language-concordant care. Parents felt relieved when they spoke the same language as their providers. Spanish-speaking staff also agreed parents could express themselves more freely in their native language: “Spanish speakers… they just open up more [with me]… than with someone that doesn’t speak Spanish and it’s through an interpreter.” English-speaking staff added that parental concerns were occasionally relayed through bilingual, even nonclinical, staff.

In the absence of bilingual providers, staff and parents emphasized interpreters’ role in effective communication. In-person interpreters, especially those who developed relationships with families of CMC during multiple visits, were widely cherished. Staff highlighted the importance of in-person interpretation for visualizing facial expressions. Yet, staff reported not accessing interpreters consistently despite knowing when parents required them. Staff also assumed parents felt intimidated or embarrassed asking for interpreters, but most parents said they would request interpretation if it was not provided. Some families even preferred to ask for an interpreter themselves. A subset described asking for interpreters only in specific situations, like in-depth discussions, new medications, or when not being understood.

When language-concordant care was not possible because of unavailable, difficult to schedule, or underutilized interpretation resources, staff and parents of CMC alike used workarounds. Some staff reported relying on bilingual clinical or nonclinical staff (eg, housekeeping) to elicit parental concerns and act as ad-hoc interpreters. Others relied on nonverbal cues from parents who use LOE to elicit concerns. Parents also noted some staff mistakenly thought they were communicating effectively using rudimentary Spanish skills.

Workarounds by parents of CMC included using rudimentary English skills. For example, a parent reported: “[Surgeons would] always go there early in the morning; they didn’t speak Spanish. I couldn’t communicate with them so I had to write things down for them on a board in English for when they went there so… I could tell them my concerns.” Others relied on interpretation by English-speaking friends (sometimes not proficient in English themselves) or noncertified mobile translation applications (eg, Google Translate).

Technology had advantages and disadvantages as a communication aid. Both staff and parents leveraged technologies, like video interpretation, mobile translation applications, or filming videos on personal devices, to express clinical concerns and fill gaps in language access resources. They all agreed that technology, particularly video remote interpreters (VRIs), improved language access, but had challenges like technical issues, inaccurate interpretation, and delays in retrieving devices. Additionally, VRI felt impersonal, without the full range of nonverbal communication cues, like “talking to a machine.” Parents and staff also described instances when VRIs were ineffective or underutilized, like when staff did not bring them when conducting quick morning rounds. “If we’re not doing our due diligence of making sure that we have an interpreter… sometimes they nod… but they don’t understand. […] We really encourage everybody to use the VRIs,” a nurse said. VRIs’ greater accessibility, considered an asset by staff, was not always seen as advantageous by parents, because parents were unable to independently initiate conversations and required staff to bring them devices.

Parents of CMC and staff suggested several strategies to address communication barriers, including (1) increasing access to qualified interpreters, (2) using technology for just-in-time interpretation, (3) increasing hospital staff knowledge and diversity, and (4) providing multimodal, multilingual health information (Fig 1). Both staff and parents desired better accessibility to interpreters, recommending hiring more in-person interpreters and ensuring interpreters were present for every clinical interaction. They also suggested allowing parents to initiate interpretation requests themselves (eg, providing parents a tablet device). One parent described wanting “to have an easier accessibility to achieve communication without having to try to speak in English… to have like a faster access to the language assistance service.” Parents also suggested mobile translation applications could help ensure real-time access to interpretation/translation services. Staff advocated for widespread cultural humility training and hiring bilingual staff to promote language-concordant care. Finally, both parents and staff proposed providing multimodal/multilingual medical information to aid with communication (eg, educational videos or communication boards with illustrations/text in LOE). Other suggestions included staff continuity, frequent check-ins for families who use LOE, partnering with social workers, and ensuring a safe space for parents to communicate concerns.

This dual-center, qualitative study explores views of staff and Spanish-speaking parents of hospitalized CMC regarding challenges and facilitators of inpatient communication with families who use LOE for care. We found that staff sometimes make unfounded assumptions and have existing biases about parents of CMC who use LOE, which negatively affect communication. We also found that both staff and parents of CMC who use LOE frequently use communication shortcuts to fill in gaps in hospital language access resources and practices, and that technology has advantages and disadvantages as a language access tool.

As in previous studies,^14–19,34  we found that challenges with language access create communication barriers during hospitalization. However, our study focused on specific experiences of parents of CMC who use LOE, which have not been well-described.

Parents of CMC who use LOE for care are a particularly vulnerable and understudied population. Independently, both CMC and patients who use LOE experience higher rates of adverse events, longer lengths of stay, higher readmissions, medication errors, and discrimination³⁵  than their counterparts³⁶ ; experiencing both medical complexity and language barriers may further compound risks. Our study aimed to understand the intersectionality of communicating with parents of CMC who use LOE for care and explore potential solutions.

Although parents of CMC who use LOE face unique challenges, they also possess key strengths. Parents of CMC provide specialized care at home and navigate complex multidisciplinary care teams through frequent interactions with the health care system. These factors may make parents of CMC who use LOE more adept at overcoming communication limitations, albeit through workarounds, persistence, and “learning by doing,” than their counterparts who use LOE for care but have less frequent interactions with the health care system. Spanish-speaking parents newer to health care, including those without CMC, may be less comfortable speaking up or asking for interpreters than experienced parents of CMC. Parents of CMC expressed that their willingness to speak up evolved over time as they became familiar with the medical system, a phenomenon likely more common among CMC.

Although other studies have examined trust between hospital staff and patients in outpatient and emergency settings, few have explored trust and communication inpatient, particularly among Spanish-speaking parents of CMC and their health care teams.^37–40  Trust and relationship-building are important facilitators of effective communication, but may be less emphasized than mechanics of communication. Building staff-caregiver trust can facilitate communication, improve quality and experience, and have direct health benefits.⁴¹  Trust can be built in short interactions with any patient, but particularly for CMC, who are frequently admitted with chronic issues, having primary teams that develop meaningful relationships with families is crucial. Given time constraints, staff may rush through interactions with patients who use LOE at the expense of rapport-building behaviors (eg, asking patient’s hobby). This may be particularly true for CMC, given the complexity of management and care decisions. Building rapport does not just feel good; it can improve patient safety.⁴²  Trust allows individuals to feel comfortable speaking up, which may promote safety by increasing the likelihood that parents will alert staff to errors and clinical deterioration⁴³ ; this is particularly essential for CMC, who often cannot communicate independently.

Our study cautions staff about cultural assumptions, bias, and stereotypes. Culture was perceived to influence communication, independent of language. For instance, culture was thought, sometimes inaccurately, to affect how parents interact with the medical system, advocate, portray emotions and relay concerns. Although some parents agreed that their culture affects their willingness to speak up, this was not universal. Stereotyping cultures can impact communication and lead to inaccurate assumptions or biased behavior, which can be especially harmful for CMC who often face additional disability-based discrimination.³⁵  Rather than generalizing, staff should employ principles of cultural humility in their interactions, which involves continuous lifelong learning, power sharing, humble inquiry, and genuine attempts to understand various aspects of a person’s identity (eg, culture, language).⁴⁴  Staff do not routinely receive cultural humility training, which may be useful to improve communication and avoid unfounded assumptions.^45–47 

Our results also highlights the known importance of language-concordant care. Spanish-speaking parents of CMC reported speaking more freely with Spanish-speaking providers and nonclinical staff to relay concerns. Though language-concordant care has been shown to improve patient understanding and satisfaction,^48,49  its inappropriate use can be detrimental. For instance, nonfluent staff taking variable-quality medical Spanish classes can provide a false sense of fluency, leading them to forego interpreters when communicating with Spanish-speaking parents.^50,51 

Despite federal regulations requiring individuals who use LOE receive meaningful access to health care, most families still lack adequate access to interpreter services.^52–55  Interpreters have been described as crucial communication conduits, key family advocates, and cultural navigators, essential to addressing hospital health disparities.^20,56–58  In their absence, parents described utilizing unreliable workarounds for communication, including using rudimentary English to “get by” even when they had safety concerns, using English-speaking family members for interpretation, and using non-Health Insurance Portability and Accountability Act–compliant mobile translation applications that can be inaccurate^59–61  and lead to interpretation errors and negative outcomes.⁶² 

Even in high-risk situations, staff similarly felt compelled to use error-prone workarounds, like using bilingual staff to communicate with parents when interpreters were not available. Although bilingual staff are certified to speak to patients in a given language, most are not certified to interpret, which requires specialized training. Using bilingual staff with variable language skills as ad-hoc interpreters may lead to medical errors, particularly for CMC, who have more complicated medical needs and discussions. When staff are not as well-versed with medical terms as certified interpreters,^63,64  they may not be adept at having intricate medical conversations. Relying on bilingual staff to fill resource gaps also unduly taxes them and provides false reassurance that additional hospital interpretation resources are not needed.

Our study has several practical implications. Hospitals should make it easier for patients and staff to access interpretation resources, like providing point-of-care interpretation services that parents can readily access independently, as participants suggested. Given scarcity of interpreter resources, hospitals should consider pathway programs^65,66  where bilingual staff, like food services and custodians, can train to become certified medical interpreters and be compensated appropriately. This would also allow for staff career development while leveraging trust and relationship-building, particularly because many families already informally rely on these bilingual staff members. Some hospitals have successfully instituted such programs.⁶⁵  Hospitals should also dedicate resources to ensure timely (same-day) translation for all discharge instructions for patients who use LOE, which is particularly important for CMC given their prolonged length of stay and complex discharge regimens.

Systems and policy changes are also needed. For instance, staffing adjustments for families, particularly of CMC, who use LOE should include lower nurse-to-patient ratios, and additional time for interpretation encounters (eg, rounds). This will allow staff to focus on building trust and relationships with families who use LOE for care. Additionally, hospitals can implement stricter interpretation policies, like requiring interpretation for every physician encounter, a reasonable majority of nursing encounters (eg, ≥3 times in 8-hour shift), and high-risk situations (eg, medication reconciliation, discharge teaching). To ensure policies are enforced, hospitals could measure language equity metrics and tie them with provider/chief executive officer bonuses. Moreover, language equity metrics could factor into hospital rankings, accreditation, and quality designations (eg, Magnet).

Our study has limitations. It was conducted in part as a secondary analysis of a larger study on safety reporting, so we were unable to obtain the in-depth information (particularly from staff) of an exclusively primary analysis. Our staff sample was not representative of the general population, though it reflected demographics at both hospitals. Regardless, we conducted purposive, criteria-based sampling, which provides rich, contextual information about experiences of Spanish-speaking parents of hospitalized CMC. We performed primary data collection to reach thematic saturation in our sample of parents and may have reached saturation in our staff sample (though difficult to confirm because staff interviews were mostly a secondary analysis). These factors make our findings potentially transferrable to similar hospitals and patient populations.

Given our focus on CMC, families of children without medical complexity may have different experiences. This study only included perspectives of Spanish-speaking parents, though staff described experiences communicating with families who used any LOE. Both study institutions had robust in-person, telephonic, and video interpretation services expected to be used in interactions with families who use LOE; parents at institutions with less-robust services may experience even greater challenges. A recent study of hospitalized families using certain LOE described similar experiences, but excluded staff perspectives.³⁴  Further studies with both staff and parents speaking languages besides Spanish are needed to fully understand the experience of families who use languages of lesser diffusion and may have greater barriers to effective communication.

Our 2-center qualitative study explored communication between hospital staff and Spanish-speaking parents of hospitalized CMC and found that building trust, relationships, and language-concordant care facilitated communication. Conversely, staff assumptions and biases about parents’ language abilities and cultural backgrounds negatively affected communication. Both hospital staff and parents of CMC who use LOE for care devised sometimes error-prone workarounds to address communication challenges. Technology as a communication aid had advantages and disadvantages. Our findings suggest actionable strategies hospitals can implement at the provider, institution, and system level to improve communication with families who use LOE, like hiring more bilingual staff, increasing direct access to interpreter services, building trust and rapport, and widespread staff antibias and cultural humility training.