Facilitating Engagement on Family-Centered Rounds for Families With Limited Comfort With English Free

This was a cross-sectional qualitative study of Spanish-speaking parents and caregivers (referred to as parents for simplicity) of hospitalized children at a tertiary care children’s hospital in a predominantly Latinx community in New York, New York, where FCR are conducted every weekday on the hospital medicine service. In-person interpreters on inpatient floors are limited and require advanced scheduling; therefore, they are not routinely available for FCR. The emergency department has in-person interpreters on staff nearly 24/7, so most families admitted to the hospital have experienced in-person interpretation in that context. During this study period, there were no established interpretation protocols for FCR, and the decision to conduct rounds with the family present was provider dependent. Interpretation during FCR typically consists of telephone interpreters or uncertified bilingual members of the medical team serving as “ad-hoc” interpreters.

Participants were enrolled between June 2020 and February 2021. During this time, FCRs were typically held outside of patient rooms to minimize the risk of transmission of severe acute respiratory syndrome coronavirus 2. Parents were invited to join at the door, followed by a small group of providers entering the room to examine the patient and provide updates. Teams performed traditional FCR for some patients who did not have isolation precautions.

We used purposive sampling to recruit Spanish-speaking families on the hospital medicine service who designated Spanish as their preferred language in the electronic medical record and had participated in FCR at least once over the previous 3 days. Participants were provided a $40 gift card as compensation.

A semistructured interview guide (Supplemental Information) was developed after a comprehensive literature review and consultation with local experts in qualitative research, FCR, and minority health. Prompts covered 3 domains: (1) experiences with interpreters, (2) experiences with communication during FCR, and (3) recommendations for improving communication. Evidence of the validity of the guide was gathered via cognitive interviews with 3 members of the institution’s Family Advisory Council (FAC), a committee of parents of previously hospitalized children who advise hospital administrators, faculty, and residents. The interview guide was translated to Spanish by a certified interpreter and pilot-tested with 3 additional bilingual/bicultural members of the FAC.

Interviews were conducted and recorded over Zoom²⁰  by 1 of 2 bilingual investigators who did not participate in patient care. Interviews were completed during the hospital stay and lasted 30 to 60 minutes. Participants provided consent and responses remained confidential.

Audio recordings were translated and transcribed into English by certified interpreters. Using a grounded theory approach, data were coded independently by 4 investigators to generate an initial codebook (Dedoose version 8.3.43, SocioCultural Research Consultants, LLC). Subsequent transcripts were independently coded by 2 to 3 investigators to ensure intercoder reliability. Investigators met regularly to review codes and resolve disagreements through group discussion to reach a consensus. Using constant comparative method, the codebook was revised in an iterative fashion and applied to all data. Participants were recruited until thematic saturation was achieved. Investigators worked together to organize codes into common themes, select representative quotations, and create a conceptual framework. Findings were reviewed with participants and a bilingual/bicultural Latina member of our FAC in a member-checking exercise.²¹  This study was approved by the institutional review board.

Twenty-three parents were recruited and 18 participated. Participants were mostly mothers (72%) from the Dominican Republic (61%). Most families met the federal poverty threshold for a family of 4 (72%), and 61% had a high school degree or less (Table 1).

Three themes emerged: (1) importance of interpreter use, (2) understanding of medical information, and (3) participation in FCR. The themes are described below, and additional illustrative quotations are detailed in Table 2. These themes provide a framework from the parent perspective on creating an environment conducive for parent engagement and bidirectional communication in FCR, with positive and negative influences within each theme (Fig 1).

Participants felt that communication in Spanish was crucial for their understanding, although they noted challenges with remote interpretation. Two subthemes were identified: (1) the medical team consistently uses interpreters, and (2) parents prefer in-person interpreters or bilingual providers.

Most participants endorsed that the medical team asked about language preference during each encounter with the family and provided an interpreter, which alleviated stress and enhanced involvement in their child’s medical care. One participant stated, “[The use of interpreters] is very good. Because if not, we would not be able to communicate. I could never learn what they told me and understand” (Participant 12). Given parents’ desire to receive, provide, and understand medical information to participate in decision making, described further in Theme 2, the use of interpreters was seen as an essential facilitator of family engagement.

Although parents felt that the medical team’s use of interpreter services during FCR enhances the inclusion of families, they overwhelmingly preferred their experience with in-person interpretation in the emergency department or ad hoc interpreters on FCR, rather than remote telephone interpreters. Parents described frustration with frequent pauses and delays in conversation when using remote interpretation. They felt that in-person interpreters more closely resemble language-concordant interactions and minimized discomfort with interpreter services. Parents felt that the physical presence of in-person interpreters during discussions with medical providers increased their trust in the interpretation.

Additionally, participants believed that information sharing was more complete with a bilingual provider. One participant stated, “It's a lot better [with] the doctor than the interpreter because, often, I feel [the interpreters] don't tell you all they know” (Participant 4). Parents also felt more comfortable asking questions during FCR with a bilingual provider. One participant stated, “[I feel] a little uncomfortable because my preference would be that [the doctors] speak to me in my language. But I understand that the primary language in this country in which I find myself is English. For that reason, it doesn’t bother me, I simply adapt to it” (Participant 16). Participants frequently recommended having more bilingual providers or in-person interpreters during FCR to maximize the ease and efficiency of communication and collaboration.

Parents expressed the importance of knowing and understanding many aspects of their child’s medical care to make informed decisions and advocate for their children. Two subthemes emerged: (1) desire for information and comfort in asking questions and (2) difficulty understanding due to language barriers.

Many participants stated that it is critical to include parents in medical decision making, given their expertise regarding their child. Parents felt that to participate in decision making, they needed to be given frequent updates about their child’s care and understand important information such as laboratory results and changes in vital signs. Parents also noted the importance of gaining knowledge from the medical team, such as symptoms to be monitored or instructions for caring for their children after discharge.

FCRs were seen as an important opportunity for information sharing between parents and the medical team. However, parents noted that the medical team often completed the FCR presentation in English and subsequently used an interpreter to provide a summary to the family. Summarizing caused parents to feel that they were missing information discussed. One participant stated, “When they do rounds…there are things that they talk to each other about that they don’t share with the parents. It’s really important to know all parts, whether it hurts or not. The family needs to know what’s happening” (Participant 8).

Parents’ desire for information from the team and participation in decision making was critical for family engagement. The majority of parents felt empowered to ask questions when they were not provided with all desired information or did not understand aspects of the care plan. One participant stated “I do it because I care about my son. When they come, I ask, ‘how’s it going?’ If they take his blood pressure, ‘is everything ok?’ Because right now, it could be that everything is fine, but things could go backwards without anyone telling me” (Participant 7).

Language was sometimes a barrier to participating in a conversation and asking questions. One participant noted, “There are times when someone would want to ask a question, and how you’re going to do it and what risk it could bring, but you can’t” (Participant 5). The language barrier impeded parents’ engagement with the medical team during moments when they wanted to participate but lacked an interpreter.

Parents valued feeling included in FCR, which was viewed as an opportunity to communicate directly with the medical team, share concerns, and receive real-time information. However, negative emotions surrounding the language barrier challenged parents’ participation. Two subthemes were identified: (1) appreciation for FCR, and (2) settling for less involvement.

Parents viewed FCR as an important opportunity for collaboration with the medical team. When the FCR presentation was done at the bedside, parents believed that it provided valuable insight into the team’s approach to care. They felt reassured by the number of providers thinking critically about their child and appreciated witnessing the teamwork in formulating care plans. Observing FCR also allowed parents to interpret nonverbal cues as valuable information. One participant stated, “I want to listen, even though I don’t understand much. I like it better to listen to what they are saying at the moment, not to have them talk outside and then say less inside… I don’t understand a lot of English, but maybe their expression might give me a hint if the kid is very sick or not so sick” (Participant 4).

In response to having LCE, some parents adjusted their expectations of participation in FCR. A few parents limited their participation out of concern for the time or patience required to navigate 2 languages during FCR, thereby negatively impacting their engagement. One participant stated, “It’s hard because it’s an entire team, so not everyone speaks Spanish… if someone on the team knows Spanish, they won’t repeat everything that each person says… So that’s why it’s better…that they do their rounds, their plan, and then they come with an interpreter to tell it to me…I understand that here… it’s not the same as in my country, because if I was in my country, it’s all the same language” (Participant 5).

Parents viewed communication in English to be the default language for relaying medical information. Interpreter use was often viewed as a temporary solution, whereas a personal mastery of English was the preferred and permanent solution to bridging the language gap. One participant noted, “I know that I have to learn the language because I am in a country where the language is English… while I learn it, the interpreter is fine for me” (Participant 6). Parents often felt that their experiences during FCR would be enhanced by an ability to communicate effectively in English. Multiple parents felt that the language barrier was their fault and therefore were not upset about their decreased involvement in FCR.

Spanish-speaking parents with LCE voiced a desire to have consistent access to in-person interpreters during FCR, understand medical information, and participate in decision making. Currently, certain aspects of FCR facilitate family engagement, whereas others present challenges. These findings may help providers create an environment conducive to family engagement during FCR, which may reduce communication-related health care inequities.

These findings are consistent with previous research that has revealed that Latinx patients desire increased engagement and that level of engagement impacts perceptions of quality of health care. Notably, it is well-documented that significant differences in level of engagement exist between Latinx and non-Hispanic White populations.^2–9  Patients who are less acculturated, both culturally and linguistically, have reported less patient-centered decision making and lower satisfaction in their level of participation and perceived quality of health care.^3–5  In the pediatric literature, Latinx families with LCE were found to have lower engagement in care in both inpatient and outpatient settings compared with English-proficient families, although pediatric research on this topic is limited.^8,14 

Few previous studies specifically address the desire for participation in FCR among parents with LCE. One previous qualitative study from 2011 found a lack of empowerment to participate in FCR among a primarily Mexican community in Colorado.¹⁶  Two more recent surveys of Mexican populations on the east and west coast found a greater willingness to participate.^15,22  These differences could be due to cultural factors in their local communities, family-centered care practices among providers, differences in data collection methods, or external factors affecting the immigrant experience in recent years. Our findings are consistent with the 2 more recent studies suggesting a greater desire to participate in care, and our study explores this more fully using qualitative methods. Consistent with previous studies, participants endorsed a sense of responsibility for the language barrier, which fostered an obligation to learn English to engage fully in FCR.¹⁶  Despite this perception of blame for the language barrier, parents in our study reported willingness to ask questions of their medical teams and participate in care. This differed from a previous study in which recently immigrated Latinx patients with LCE hesitated to ask questions.² 

Family engagement in FCR and bidirectional communication is critical to forming therapeutic partnerships and promoting patient safety. FCR reduces parental stress by providing routine updates and education about the child’s illness and improves recognition of medication errors and adverse events; however, families with LCE experience fewer of these benefits.^13,23,24  Language barriers are likely a major cause of the higher rates of adverse events seen in hospitalized families with LCE. Providers should mitigate inequities by standardizing FCR practices to ensure that parents with LCE are equally engaged as English-proficient parents.^11,13,25  Parents with LCE, like those with English proficiency, value FCR as a venue for bidirectional communication.¹⁷  Parents in our study believed it was beneficial to observe FCR, even when conducted in English, to better understand the medical team’s process and gain information from nonverbal communication. Providers should continue to strive for family engagement during FCR by allowing parents with LCE to be as involved as possible, ideally via language-concordant communication. Future studies should evaluate the barriers that prevent providers from using interpreter services to interpret the entirety of FCR.

Our findings support well-documented preferences for in-person interpreters, which have been associated with increased parent understanding and satisfaction.^22,26,27  Providers should be trained on the effective use of interpreter services to minimize communication barriers during FCR. Hospitals with large populations with LCE might explore the feasibility and effect of incorporating in-person interpreters as routine team members during FCR. In addition, establishing a standardized protocol for identifying families with LCE and scheduling interpreters for FCR may lead to sustained use of in-person interpreters.²⁸  Additionally, parents identified bilingual providers as the ideal way to maximize their involvement, suggesting value in pairing bilingual providers with families with LCE, as has been previously described.²⁹  Medical schools should prioritize the recruitment of diverse students to add more bilingual providers to the workforce, and medical Spanish and interpreter certification courses can increase the number of bilingual providers who are qualified to serve as interpreters.

Latinx populations must not be viewed as 1 homogenous culture, as they include various groups from different countries, ancestries, languages, and religions.^30,31  Previous research notes that Dominican populations in particular have greater cultural differences compared with other Latinx subpopulations and therefore have unique experiences and perspectives.^32,33  Published studies regarding the interpretation and communication preferences of Latinx families may not represent the full geographic, cultural, and linguistic diversity of immigrant Latinx families.^15,16,19,22  Our population in northern Manhattan, New York is culturally distinct from those examined in previous studies. Understanding the perspectives of this patient population adds additional dimensionality to the existing literature and may lead to improved communication with this heterogenous Latinx population.

There are limitations to this study. This study was conducted at a single academic institution in a highly concentrated Dominican population of New York City; therefore, generalizability may be limited. Families who had Spanish denoted as their preferred language in the electronic medical record were included, and they may have a different experience than families with LCE whose preferred language is not documented. Finally, this study was conducted early during the coronavirus disease 2019 pandemic, when rounding procedures were less likely to include family participation to minimize infection spread. This may have affected participants’ experiences on rounds and willingness to participate in FCR.

Families with LCE value involvement and inclusion during FCR, but face difficulties due to language barriers. Providers can minimize the negative impact of the language barrier by empowering families’ engagement and consistently by using an interpreter. By understanding the experiences and preferences of families with LCE for participation in FCR, providers can deliver more equitable family-centered care.

The authors thank Drs. Marina Catallozzi, Teresa McCann, Dodi Meyer, and Stephanie Grilo and the members of the NewYork Presbyterian Morgan Stanley Children’s Hospital Family Advisory Council for their assistance with this study.