40 Trust, belonging and understanding - The experiences of families who use languages other than English (LOE) that are hospitalized on general paediatric inpatient units

BackgroundPatients who use Languages other than English (LOE) for healthcare communication in an English-dominant region are at increased risk for experiencing adverse events and worse health outcomes in healthcare settings, including in pediatric hospitals. Despite the knowledge that individuals who speak LOE have worse health outcomes, they are often excluded from research studies on the basis of language and there is a paucity of data on ways to address these known disparities. Our work aims to address this gap by generating knowledge to improve health outcomes for children with illness and their families with LEP.BodyWe describe an approach to developing a study with individuals marginalized due to using LOE for healthcare communication, specifically using semi-structured qualitative interviews. The premise of this study is participatory research—our overall goal with this systematic inquiry is to, in collaboration with patients and families with LOE, set an agenda for creating actionable change to address the health information disparities these patients and families experience. In this paper we describe our overarching study design principles, a collaboration framework in working with different stakeholders and note important considerations for study design and execution.ConclusionsWe have a significant opportunity to improve our engagement with marginalized populations. We also need to develop approaches to including patients and families with LOE in our research given the health disparities they experience. Further, understanding lived experience is critical to advancing efforts to address these well-known health disparities. Our process to develop a qualitative study protocol can serve as an example for engaging this patient population and can serve as a starting point for other groups who wish to develop similar research in this area.Plain English SummaryProviding high-quality care that meets the needs of marginalized and vulnerable populations is important to achieving an equitable, high-quality health care system. Children and families who use a Language other than English (LOE) in English dominant regions for healthcare have worse health outcomes including a significantly increased risk of experiencing adverse events, longer lengths of stay in hospital settings, and receiving more unnecessary tests and investigations. Despite this, these individuals are often excluded from research studies and the field of participatory research has yet to meaningfully involve them. This paper aims to describe an approach to conducting research with a marginalized population of children and families due to using a LOE. We detail protocol development for a qualitative study exploring the lived experiences of patients and families who use a LOE during hospitalization. We aim to share considerations when conducting research within this population of families with LOE. We highlight learning applied from the field of patient-partner and child and family-centred research and note specific considerations for those with LOE. Developing strong partnerships and adopting a common set of research principles and collaborative framework underlies our approach and initial learnings, which we hope spark additional work in this area.

Patients who use a language other than English (LOE) for health care communication are at increased risk of experiencing adverse events and worse outcomes. The objectives of this research are (1) to understand the lived experience of families who speak LOEs around the hospitalization of their child and (2) to understand the perspectives of patients and families who speak LOEs on opportunities to improve their experiences during hospitalization. This study is grounded in patient- and family-informed research. We designed a qualitative study involving children hospitalized in the general pediatric inpatient unit at a Canadian children's hospital. We conducted semistructured individual interviews with children and families with a medical interpreter. We used thematic analysis, and all interviews were coded by 2 reviewers. A total 20 families of 16 different languages participated in the interviews. Themes important to understanding their lived experience were the following: (1) communication uncertainty-families experienced inconsistent interpreter use and availability, which affected in-the-moment communication and families' ability to understand the overall clinical context, leading to increased uncertainty; (2) lack of belonging-despite communicating that they had positive experiences in the hospital, families described a lack of belonging and felt that they were "other" during hospitalization; (3) altered trust-in addition to language, each patient/family's unique and complex social contexts contribute to developing an altered trust relationship with the health system that impacts their engagement in care processes. Families described opportunities for improvement such as supporting patient-initiated interpretation, increasing workforce diversity, and tailoring concepts such as shared decision making to their realities. Patients and families also revealed that they experience communication uncertainty, altered trust, and a lack of belonging within the hospital setting. Our research builds on the current literature and serves to advance our efforts to address health inequities experienced by this population.

Patient- and family-centered rounds (PFCR) have become a pediatric standard of care. However, rounds experiences of families using languages other than English (LOE)-particularly languages other than English or Spanish (LOES; eg, Arabic)-receive less focus. We aimed to identify differences in PFCR communication and engagement by language. We analyzed postintervention data from a 21-center structured PFCR study, assessing communication practices, quality, and family and nurse engagement during PFCR. Logistic regression adjusted by site compared PFCR between families using (1) LOE vs English, (2) Spanish vs English, and (3) LOES vs English. Among 3051 PFCR encounters, 348 (11.4%) involved LOE (Spanish = 260; LOES = 85). Interpretation was not used in 7.2%, 5.8%, and 9.4% of encounters using LOE, Spanish, and LOES, respectively. PFCR in the following groups had lower adjusted odds (adjusted odds ratio [95% CI]) for the following domains: (1) LOE vs English: including providing verbal patient summaries (0.66 [0.46-0.95]), explaining diagnoses and differentials (0.62 [0.44-0.88]), family engagement (0.34 [0.20-0.57]), nursing inclusion (0.75 [0.60-0.93]), and nursing engagement (0.69 [0.52-0.90]). (2) Spanish vs English: diagnoses/differentials being explained (0.56 [0.37-0.85]), family engagement (0.35 [0.18-0.67]), nursing inclusion (0.77 [0.59-1.00]), and nursing engagement (0.68 [0.52-0.89]). (3) LOES vs English: families sharing concerns (0.66 [0.47-0.93]), family engagement (0.30 [0.16-0.54]), and nursing inclusion (0.74 [0.55-0.99]). Even after implementing a PFCR intervention, families using LOE-especially LOES-experienced significant disparities in communication and engagement. Future approaches to improving PFCR should emphasize language access and promote nurse and family engagement for families using LOE, particularly LOES.

ObjectivesInjury‐related visits constitute a sizeable portion of emergency department (ED) visits in the United States. Individuals with language other than English (LOE) preference face barriers to healthcare and visits for traumatic injury may be the first point of contact with the healthcare system. Yet, the prevalence of traumatic injuries in this population is relatively unknown. Our objective was to characterize the prevalence and purpose of trauma encounters, and healthcare utilization, among a LOE cohort.MethodsWe conducted a retrospective chart review of LOE patients who presented for a trauma encounter at a level 1 trauma and emergency care center between January 1, 2019 and December 31, 2021. LOE participants were identified by utilization of video‐based language interpretive services. Variables evaluated included injury patterns and primary and subspeciality healthcare utilization. Quantitative analysis of categorical and continuous variables was performed.ResultsA total of 429 patients were included. Most patients presented for one trauma encounter and the majority spoke Spanish. The most common causes of injury were motor vehicle collisions (MVCs) (28.5%, n = 129), ground‐level falls (15.9%, n = 72), and falls from heights (14.2%, n = 64). Occupational injuries made up 27.2% of trauma encounters (n = 123) and only 12.6% (n = 54) of patients had a primary care visit.ConclusionOur findings highlight the need for increased research and attention to all causes of injury, especially MVCs and occupational injuries, among those with LOE preference. Results reaffirm an underutilization of healthcare among this population and the opportunity for trauma encounters as points of access to care.

IntroductionPatients who prefer a language other than English (LOE) often face significant barriers in health care. Although national mandates require access to professional medical interpreters (MIs), studies indicate that interpreter services are frequently underutilized or used inappropriately. Moreover, many medical schools lack a formal curriculum dedicated to training students on the effective use of MIs.MethodsAn educational curriculum was developed for second- and third-year medical students to enhance effective communication using MIs to interact with patients who prefer an LOE. The curriculum included an online module (26 minutes) followed by an in-person workshop (60 minutes) featuring simulated patient encounters with an MI. Pre- and postcourse surveys were administered to assess self-reported knowledge and comfort. Descriptive statistics and the Mann-Whitney U test were used to characterize responses and analyze differences between pre- and postcourse responses.ResultsOver 1 year, 131 medical students participated in the curriculum. The precourse survey was completed by all 131 students, and the postcourse survey by 92 students. Scores on all survey items significantly changed, indicating more frequent or confident behaviors related to interpreter use. Postcourse satisfaction was high, with 90% of respondents reporting they were satisfied or very satisfied with the curriculum.DiscussionThis educational innovation successfully addressed a critical gap in medical training by introducing a structured curriculum focused on best practices for working with MIs. The hybrid approach of an online module followed by in-person practice was a time- and resource-efficient way to integrate this information into a busy medical student schedule.

An increasing number of US children have parents who prefer languages other than English (LOEs). However, many LOE families are excluded from participation in qualitative research because of English proficiency requirements. Guidance to promote inclusion of LOE populations in qualitative research is limited. To synthesize published child health cross-language qualitative research and examine trends in how studies are conducted when a language barrier exists between researchers and participants. PubMed, CINAHL, and Sociological Abstracts. US-based cross-language research studies published between January 2010 and July 2025 that included adult LOE caregivers and discussed child health topics. Two reviewers examined each manuscript to describe cross-language processes for handling qualitative data collected with LOE participants, including study design/preparation, data collection, and analysis. Fifty-two studies were included. Most studies included only Spanish-speaking participants. Studies covered a wide range of health issues and populations. Studies used varying procedures to obtain information from LOE caregivers. Most studies conducted qualitative analysis in English after translating interviews from the source language. Many relied on bilingual research study staff or community members. Few described how findings were disseminated back to the community of interest. Cross-language qualitative child health research has increased in recent years; best practices for handling language data in LOEs might be emerging. This review identified variability in methods in published qualitative cross-language child health research. We share recommendations to promote inclusive practices in cross-language qualitative research to improve the generalizability and quality of child health research in the United States.

Changes in Rates and Modality of Interpreter Use for Pediatric Emergency Department Patients in the COVID-19 Era

Increasing representation in clinical trials is a priority for the National Cancer Institute and Children's Oncology Group (COG). Our survey of COG-affiliated institutions revealed that many sites have insufficient processes and resources to enroll children whose parents use languages other than English (LOE). We describe reported barriers and facilitators to enrolling children in clinical trials when parents use LOE and propose opportunities for improvement. We sent a 20-item survey to COG-affiliated institutions. Five items allowed respondents to expand on replies to questions about (a) local institutional review board (IRB) requirements regarding translation of consent documents, (b) contributors to provider discomfort consenting parents who use LOE, (c) available language services and resources, and (d) barriers to enrolling children whose parents use LOE or offer ideas about approaches to improvements. Two pairs of researchers independently coded free-text responses and compared results for concordance. A total of 139 (N=230; 60%) institutions returned the survey. Respondents were mainly physician principal investigators (n=79/139; 57%) at the United States sites (n=118/139; 85%) serving less than 100 newly diagnosed children per year (n=99/139, 71%). They described challenges at multiple levels. Proposed approaches to improvements included centralized provision of translated materials and video educational materials in various languages, and collaborating with IRBs on regulatory processes that protect families and facilitate equitable clinical trial access. Clinical trial consortia, such as COG, face challenges in enrolling representative samples. Further research is required to design and implement multilevel interventions to ensure equitable access for all, regardless of language used, and mitigate disparate research participation.

Robust evidence demonstrates inequities in communication during family-centered rounds for families who use a language other than English (LOE) for health care. This study aimed to characterize the type of interpreter alterations occurring on family-centered rounds and identify medical team communication practices associated with alterations. In this observational study of interpreter-supported family-centered rounds, we recorded and transcribed family-centered rounds encounters for Spanish-speaking families. We assessed measures of medical team communication behaviors and interpreter alterations (omissions, additions, and substitutions) using previously described instruments. We used a content analysis approach to apply defined codes to each interpreted segment and to characterize the nature of interpreter alterations. We assessed the association between medical team communication behaviors and interpreter alterations using χ2 tests. We recorded, transcribed, and coded 529 interpreted segments of 10 family-centered rounds encounters. At least 1 alteration was present in 72% (n = 382/529) of interpreted segments. Omissions were the most common alteration (n = 242/529, 46%) followed by substitutions (n = 177/529, 34%) and additions (n = 71/529, 13%). Interpretation resulted in a potentially negative alteration in 29% (n = 155/529) and a positive alteration in 9% (n = 45/529) of segments. Greater number of sentences in the segment preceding interpretation was associated with an increase in loss of information (P < .001), loss of social support (P = .003), and loss of partnership (P = .020). To improve communication with families that use an LOE, medical teams must abide by best practices for using an interpreter such as frequent pausing to prevent loss of both biomedical and psychosocial information.

Introduction: Children with cancer whose parents speak languages other than English (LOE) experience disparities including underrepresentation on clinical trials and decreased access to resources. Few studies in pediatric oncology have investigated the communication experiences of families who speak LOE, particularly for languages other than Spanish. The primary objective of this study was to characterize the experiences of parents of children with cancer who speak LOE. Methods: Parents of children recently diagnosed with cancer who spoke LOE were enrolled concurrently in two cohorts, Spanish speaking and non-English/non-Spanish speaking. Semi-structured interviews were conducted about parent perceptions of medical care, communication and support from the medical team within 3 months of a new cancer diagnosis and 6-12 months post-diagnosis. Inductive content analysis was performed, with iterative transcript review and memo-writing informing the development of codes. Code frequency, temporal duration and distribution across language subtype were calculated and reported as descriptive statistics. Analysis was organized in MAXQDA, a mixed-methods data analysis software. Results: Of the 28 parents enrolled, 20 spoke Spanish and 8 spoke other languages including Dari, Nepali, Karan, Cantonese, Chuukese and French. All parents completed first interviews and 14 have completed second interviews to date. All parents described challenges with interpretation, but difficulties were reported more often by non-Spanish speakers: 67% of non-Spanish speakers encountered interpreters who spoke a different dialect (vs. 35% of Spanish speakers), 33% had interactions where no interpreter was available via any modality (vs. 0%), and 75% of their children were asked to interpret by the medical team (vs. 12%). Additionally, non-Spanish speakers lacked access to written educational materials or hospital documents in their language and they were unable to build rapport with interpreters, whereas Spanish speakers described regular access to these resources. Spanish speakers also frequently reported incorrect interpretation that was recognized by providers who understood some Spanish. This was never reported by non-Spanish speakers as no medical team members spoke their languages. Conclusion: Nearly 40% of the United States population speaks a language other than English or Spanish at home, yet their needs are significantly underrecognized and understudied. Our findings demonstrated that challenges related to interpretation are pervasive, and non-English/non-Spanish speakers may face greater difficulties. Overall, parents who speak LOE report receiving disparate care and deficient resources. An urgent need exists to provide equitable communication and resources, particularly for non-Spanish speakers who report significant obstacles in receipt of high-quality pediatric cancer care. Citation Format: Melanie Stall, Naomi Winick, Erica Kaye. Comparing experiences of Spanish and non-English/non-Spanish speaking parents of children with cancer [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 824.

The decision for families to proceed with botulinum toxin-A (BoNT-A) injections for managing childhood conditions involving hypertonia can be complex. Family-centred care is a service model that facilitates supporting families in this decision-making process. Understanding families' experiences of services is critical to developing family-centred care. The aim of this project was therefore to increase understanding of the experiences of families of children attending a BoNT-A service in order to improve the service and its family-centred approach to care. Sixteen staff of a BoNT-A service participated in a patient journey mapping exercise. Nine families of the service participated in in-depth interviews. Interviews were audio-recorded and transcribed verbatim. Data from the staff session and interviews were analysed independently using grounded, hermeneutic thematic analysis. Staff sessions revealed 5 core themes that related to impacting on the family experience. Family interviews revealed 4 core themes, with 7 subthemes and 1 latent theme. Areas of importance identified by families relating to BoNT-A treatment included acknowledgement of individual needs, care coordination, empowerment of families and patients, consistency in service delivery, and the distressing nature of appointment and decision-making. Comparison of the data from the staff patient journey mapping and family interviews suggested that staff have a good but incomplete understanding of the factors important to families, highlighting the need for consumer engagement in establishing family-centred care. The themes identified can guide the provision of family-centred BoNT-A injection clinics.

Introduction: Children with cancer whose parents speak languages other than English (LOE) experience disparities including underrepresentation on clinical trials, decreased access to resources and inadequate interpretative services. Few studies in pediatric oncology have investigated the communication experiences of families who speak LOE, and rarely have studies sought parental recommendations for improvement. In this study, we aimed to characterize the experiences of parents of children with cancer who speak LOE and identify stakeholder-driven interventions to improve deficiencies. Methods: We enrolled parents of children with cancer who spoke any LOE and conducted semi-structured interviews about perceptions of medical care, communication and support from the medical team within 3 months of a new cancer diagnosis and 6-12 months post-diagnosis. Inductive content analysis was performed, with iterative transcript review and memo-writing informing the development of codes. Code frequency, temporal duration and distribution across language subtype were calculated and reported as descriptive statistics. Analysis was organized in MAXQDA, a mixed-methods data analysis software. Results: Twenty-eight parents, representing 7 different languages, were enrolled. All parents completed first interviews and 14 have completed second interviews to date. Parents described frequent problems with interpretation and felt their child’s care would be improved if they spoke English. Parents made suggestions on how to improve their experience and understanding of their child’s medical care (Table 1). Conclusion: Challenges related to language interpretation are pervasive and parents who speak LOE believe their child’s cancer care would be improved if they spoke English. Parents identified preferred communication practices and specific interventions that may be useful in promoting understanding of their child’s medical care and overall enhance supportive resources. Parent-endorsed communication practices and potential interventions to improve language disparities Preferred communication practices Use simple terms Limit conversations between providers when no interpreter present Speak to English and non-English speakers equally Always automatically use professional interpreters Take your time Repeat Demonstrate Rephrase Use drawings Point Ask for preferred language Be specific and detailed Speak slowly Use short phrases Allow time for interpretation Requested resources in preferred language Educational videos Written educational materials Translated hospital documents List of supportive resources List of financial resources List of reliable websites Language matched parent buddy support system Side by side instructions in English and preferred language System-level changes Increased in-person interpreter staffing Staff education on approach to LOE encounters Patient advocate to review medications and check labels Interpreter use at all points of contact Provision of language concordant providers Citation Format: Melanie Stall, Naomi Winick, Erica Kaye. Parent-endorsed potential interventions to improve language disparities in pediatric cancer [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 823.

Review question/objective The objective of the review is to synthesise the existing evidence on family and/or health providers’ experience of family-centred models of care for hospitalised children aged 0-12 years (excluding premature neonates). (*Some sections of this protocol are adopted or adapted from the Cochrane Systematic Review of family-centred care in hospitalised children 0-12 years (2007)1 and its update (2012)2 and are published here with permission from Wiley. A more detailed discussion of the development of the concept of family-centred care is available in these publications.) This review will consider studies that include hospitalised children aged 0-12 years (but excluding premature neonates), their family and/or health providers. Definitions Child/children: throughout this review, the term 'child' or 'children' is used to include all newborn infants, babies and children up to the age of 12 years being cared for in hospital; and all parts of hospitals that provide a service to children. The definitions of childhood can vary, and age limits are arbitrary. For the purpose of this review the National Library of Medicine's medical subject headings were used to define the age cut off of 12 years. However, we have excluded neonates born prematurely and who are patients in a neonatal intensive or special care nursery, as their requirements for family-centred care, and the ethics and philosophies of care around this particular group, are different to those in a ward/unit where full term infants and children are nursed.40 We have excluded studies about adolescents for similar reasons. Families: throughout the review the following definition of the family will be applied: The family is a basic social unit having as its nucleus two or more persons, irrespective of age, in which each of the following conditions are present: the members are related by blood, or marriage, or adoption, or by a contract which is either explicit or implied;the members communicate with each other in terms of defined social roles such as mother, father, wife, husband, daughter, son, brother, sister, grandfather, grandmother, uncle, aunt; and they adopt or create and maintain common customs and traditions. TRUNCATED AT 350 WORDS

Patients and families who use a language other than English (LOE) for health care communication face heightened risks for poor outcomes due to structural language barriers. Although interpreter services are increasingly available, considerable variability remains in how language access is operationalized. This study aimed to examine interpreter service infrastructure, processes for identifying language needs, and barriers to equitable care for hospitalized pediatric patients who use LOEs in Canada. We conducted a cross-sectional survey of clinical leaders from pediatric inpatient units across Canada. The survey explored interpreter service availability, language identification processes, staff training, and perceived barriers to effective communication. Quantitative data were analyzed descriptively, and open-ended responses were examined qualitatively using thematic analysis. Thirty-six tertiary academic and community hospitals participated. Only 40% of respondent hospitals reported a formal process for identifying language needs at admission, and most lacked standardized documentation in electronic medical records. Key identified barriers to optimal language support for patients and families, identified from both quantitative and open-ended responses, included time constraints, inconsistent service availability, and situations in which families declined interpreter support, potentially due to previous experiences of stigma or mistrust. Participants recommended improvements, including improved identification and documentation of patients needing interpreters, increased interpreter availability, and expanded staff training. There are persistent gaps in the equitable provision of interpreter services and supports for families who use LOEs in Canadian pediatric hospitals. To ensure that language access becomes a foundational component of safe family-centered care, interpreter services must be embedded into clinical workflows, supported by institutional infrastructure, and implemented in ways that foster trust and relational safety.

Family Presence During Resuscitation (FPDR) is increasingly recognized as a component of patient- and family-centred care, offering emotional support, fostering transparency, and strengthening trust in clinical care. However, in many Sub-Saharan African settings, including Ghana, the practice remains uncommon, undocumented, and lacks policy support. Fewer studies have examined families’ experiences with FPDR than those of clinicians. This study explored the lived experiences of Ghanaian families with witnessed resuscitation of their loved ones in a tertiary hospital in Ghana. A qualitative phenomenological approach was adopted to gain in-depth insights into the emotional, cognitive, and social experiences of family members present during resuscitation. Twelve participants were purposively sampled from the Emergency Medicine Directorate of Komfo Anokye Teaching Hospital (KATH). Data were collected through in-depth interviews and field notes and analyzed using Braun and Clarke’s Reflexive Thematic Analysis. Three major themes emerged: (1) Emotional Rollercoaster – families experienced shock, helplessness, and anxiety; (2) Uncertainty and Information Asymmetry – participants reported confusion and distress due to lack of communication and comprehension of information given; and (3) Decision Making and Consent – families encountered ethical dilemmas and emotional stress when making critical decisions under pressure. These findings reflect the core principles of patient- and family-centred care in the provision of dignity and respect, information sharing, and collaboration. It also highlights the cultural and emotional significance of FPDR in the Ghanaian context.