Equitable Family-Centered Care for Patients Who Prefer Languages Other Than English

Kerri Machut, MD, and Jessica Fry, MD, both serve as attending physicians for the Division of Neonatology at the Ann & Robert H. Lurie Children's Hospital of Chicago and Prentice Women's Hospital, as well as associate professors of pediatrics for the Northwestern University Feinberg School of Medicine. Together, they are the medical directors of Patient and Family Experience at Lurie and the cofounders and coleaders of the Lurie Children's Neonatal Intensive Care Unit Family Partnership Council. They also both serve as Executive Council members of the National Family-Centered Care Taskforce. Drs Machut and Fry collaborate in research examining the equitable provision of family-centered care in neonatal intensive care units: how it is defined and practiced, how the human factors inherent in a unit's local culture may impact family experiences, and how family-centered care practices affect neonatal outcomes.A 675-g, 24-week gestational female infant was born via emergent cesarean delivery to a 40-year-old Gravida 5 Para 4 Hispanic female. The pregnancy was uncomplicated until immediately prior to delivery, when the pregnant patient presented with a 3-day history of feeling unwell, dysuria, and high fever and was found to have gram-negative sepsis. After delivery, the infant's initial neonatal intensive care unit (NICU) course was complicated by profound respiratory distress syndrome with pulmonary hypertension requiring high-frequency oscillatory ventilation and nitric oxide. The infant's condition gradually improved, and she was successfully extubated at age 4 weeks. When the infant was 6 weeks old and over 1 kg in body weight, the neonatologist talked with the mother in Spanish, her primary and preferred language, about her infant's ongoing care. The mother asked if it would be possible for her to hold her daughter. When further queried, the mom reported that she had not yet held or done skin-to-skin care with her baby.Put yourself in the perspective of a parent who has a primary or preferred language other than English (LOE), is unexpectedly coping with her infant's NICU admission, has been experiencing a significant illness herself, and has not been able to hold her daughter throughout her child's 6 weeks of life. What would be the biggest challenges around communication that you would experience?Parent's perspective (the mother elected to remain anonymous, but provided answers to the reflection question in Spanish with translation by Dr Franco Fuenmayor): "After a frightening birth experience with an expected long NICU stay, as a non-native English speaker, the importance of feeling included in my child's care would be key in voicing my concerns. The staff is cordial and friendly, but I am not able to as readily ask my questions when I visit at night and there may not be an interpreter. I am thankful of the care that my daughter has received, but I worry that I could cause her stress by handling her too much and I'm not sure how to ask her nurse."Clinician's perspective: "As a Latina female neonatologist whose primary language is Spanish but is fully bilingual, I empathize strongly with the mother and her feelings of discomfort because my family and I also have experienced similar feelings when navigating the health care system. It is frightening to be surrounded by others whom you do not understand and may not understand you, especially since they essentially have control of the medical situation happening to you or your family. This provokes feelings of gratitude for the care provided but also uncertainty. Though sub-optimal, I would accept ad hoc communications if that meant at least an update. I would feel the most comfort in being addressed directly by the team caring for my baby in my preferred language without always having to be the one to request the interpreter."Trainee's perspective (fourth-year medical student): "The NICU can be an intimidating, confusing place and can bring about many questions for both families and trainees. Both family members (and medical students) may feel hesitant to participate in a neonate's care out of fear of harming the baby. Because of this, many families of babies in the NICU experience feeling lack of control, and I think that the addition of a language barrier would just exacerbate this feeling. This is why I think having a provider who can speak a patient's preferred language is so valuable, bringing peace during such an eventful and frightening experience."Experts' perspective: "As clinician leaders and researchers in family-centered care, the gaps in care for families with preferred LOE are heart-wrenching. This mother, like every NICU parent, should be empowered to be and feel close to her infant. If the mother is not able to fully understand the diagnosis or management in the time approaching discharge, she could be scared to take her infant home. She may worry about appropriately caring for medical needs throughout infancy and childhood and could even fear harming her child. Parents are natural advocates for their children and being unable to easily communicate about what is best for a child, whether about unmet post-operative pain or feeding difficulties, can leave them anxious and frustrated. These emotions can all compound each other and further exacerbate the mental health and bonding challenges that accompany a traumatic NICU journey. As clinicians, we recognize that parents know their children better than anyone and we rely on their expertise to shape neonatal medical care, in both day-to-day details and for longitudinal aspects. Not having this crucial perspective from parents due to language barriers can undermine care delivery and infant outcomes."Additional reflection questions: Has your team made family-centered care (FCC) for all infants and families a priority? What would it look like to foster a culture of compassionate care by promoting FCC for all, regardless of language barriers? How would this practically look for your medical team? What are some barriers that your team faces in achieving this goal and how can these barriers be overcome?Raise awareness and identify opportunities for FCC and families directing care at various periods of stability for infants whose families speak and prefer LOE.Identify the importance of access to culturally and linguistically appropriate services (CLAS) as well as potential barriers regarding language services.Review the importance of equity in standardized protocols for skin-to-skin (STS) care along with unique barriers and opportunities in the NICU.FCC: A partnership-based approach to making health care decisions between a patient's family and the health care provider. Guiding principles include "open information sharing, respect for and honoring differences, partnership and collaboration, negotiation, and care in the context of the family and community."1–3STS: The placement of the undressed infant ventrally on the caregiver's bare chest.2,4Kangaroo care: The practice of holding preterm infants STS with their parents/caregivers.5Language services: A broad term to describe activities that help people communicate across linguistic and cultural barriers. This includes interpretation, translation, and other services.6Medical interpreter: A person who can orally translate between a patient and a health care provider who speak different languages. In contrast, medical translators work with written materials and can assist in rewriting information from one language to another.7Primary language: Language one learns from birth.Preferred language: A more inclusive term that can be used instead of "limited English Proficiency" (LEP) to describe individuals who prefer to communicate in a non-English language.8LOE: Terminology that "allows for the contextual nature of language, promoting a patient-centered approach that acknowledges the nuances and diversity of language needs within a medical setting" in the United States.8CLAS: "The National CLAS Standards are intended to advance health equity, improve quality, and help eliminate health care disparities by establishing a blueprint for health and health care organizations."9The 2022 American Community Survey indicated that almost 22% of the population in the United States spoke a LOE, with an additional 8.2% indicating limitations with English proficiency.10 Evidence-based strategies to improve health care outcomes, reduce medical errors, and decrease disparities for families who prefer LOE include the incorporation of professional medical interpreters as required by law.10–12 Studies focused on the pediatric population have indicated that families who prefer LOE have higher odds of receiving at least 1 intervention contrary to evidence-based medicine recommendations.13 These additional interventions may inequitably expose patients to harm, including higher health care costs, higher risk of nosocomial infections, higher stress, and disruptions in feeding routines.14 Such disparities may be associated with decreased family-centered communication secondary to language barriers between caregivers and health care teams.14,15 Interpretation modalities include a spectrum of in-person, video, and telephone encounters. NICUs have significant variability in intercenter use of specific interpretation modalities and availability (eg, weekend, day, and nighttime coverage). Of note, families with hospitalized children report being most satisfied with in-person or video interpreters.16Despite the known benefits in aiding families who prefer LOE, recent estimates demonstrate that only 63% of NICUs consistently documented preferred language and only 41% reported using interpretation modalities at least 75% of the time.17 NICUs that were larger and had academic affiliations and higher levels of care were associated with more consistent language documentation. However, many NICUs reported the use of ad hoc interpreters, including bilingual staff during regular and off hours with in-person interpreters primarily limited to family conferences and discharge teaching.17 Routine interpreter use limited to these instances is a missed opportunity as families deserve and require longitudinal interactions with their health care team. NICU families who prefer LOE often lose out on the opportunity for routine "chatting" that can bolster relationships and allow for bidirectional knowledge-sharing between families and health care teams.18 Families who prefer LOE also are often unable to initiate discussion with clinicians to raise their thoughts, questions, and concerns at times they would like or need; rather, interpreted communication typically occurs when directed by clinicians on their schedule. Failure to provide adequate communication that overcomes language barriers has been associated with decreased family understanding of prognoses, increased feelings of anxiety, fear, frustration, and poor patient pain management.19–21 Even with the use of a professional interpreter, families with a preferred LOE have been shown to feel less emotionally validated and receive less prognostic information in comparison with their primarily English-speaking counterparts.15,22,23Expanding the scope of language access services in the NICU remains an area of improvement nationwide. Incorporation of access to language services will need to include broader education of providers regarding available resources at their institutions and best practices in using them, as well as advocacy regarding identifying families who prefer LOE and then for their routine and comprehensive application. Nevertheless, health care teams may be significantly challenged by access to resources that allow for consistent in-person interpreter use, and further exploration regarding how best to meet the needs of families requires collaboration and support from institutional leadership.The NICU serves as a necessary yet dynamic, complex, and uncertain environment for critically ill infants and their families. It is essential that all NICU team members recognize the impact of this environment on the typical patterns of parental-infant attachment and development.24–27 Many families experience admission to the NICU as a life-altering, traumatic event.24,28–30 For example, families who are unable to visit with their infant in the first 24 hours after birth experience a uniquely high degree of stress when queried using both the Parental Stressor Scale: NICU and the Spielberger State-Trait Anxiety Inventory.31 Ongoing, cumulative stresses encountered by families result in an increased incidence of perinatal mood and anxiety disorders.30The provision of personalized FCC is one way to counteract the negative emotional and psychosocial impacts of NICU care. FCC, which incorporates principles of trauma-informed care, seeks to ensure that caregivers are encouraged to serve as integral, engaged team members in collaboration with medical staff throughout their NICU journeys.31 In addition to improving caregiver mental health outcomes, FCC interventions have been shown to improve multiple measures of infant health, such as earlier time to full feedings, greater weight gain, earlier hospital discharge, better performance on neurobehavioral examinations, and fewer readmissions.32–34 Awareness of the benefits of incorporating and empowering families in the care of their infants has increased over the past few decades, but further progress requires identification of opportunities to implement and strengthen FCC.31,35–40Disparities in health care have been identified as factors that may present barriers to family engagement and render families vulnerable to suboptimal care.41 Families may be affected by neglectful care, judgmental care, or systemic barriers to care that can further exacerbate feelings of isolation.41 Families who prefer LOE may be especially vulnerable to gaps in FCC as they may be inhibited by language barriers to express their wishes and concerns regarding their infants. Analogous to the mindset that discharge planning begins at admission, family engagement and participation should begin as early as possible for all families, including prenatally with education and shared decision-making if NICU care is anticipated.STS care is one mechanism for involving families directly in the care of their infants. There is strong evidence that STS care benefits NICU infants both immediately after birth and throughout infancy. Very preterm infants who receive STS directly following delivery have improved cardiovascular stabilization.42 Low-birth-weight infants in the NICU who receive STS care have higher breastfeeding rates throughout their NICU stays and after discharge.43,44 Additionally, STS care helps facilitate infant and caregiver bonding, can strengthen a family's role in their infant's care, and can reduce feelings of helplessness experienced by caregivers.44 Infants who receive STS care may have improved sleep organization and duration of quiet sleep and decreased pain. This practice has been noted to reduce statistically significant mortality worldwide during hospitalization and at 12 months' corrected follow-up.45Despite the myriad benefits, NICUs face challenges in delivering STS care to infants. To transfer a patient from a bed to their parent, a member of the health care team must be present to help maneuver the infant and their support devices to prevent dislodgement.46 Clinicians may be hesitant to offer STS to parents because of the infant's size, age, or health status.46 There is a wide array of unit practices regarding policies surrounding and contraindications for STS, including therapeutic hypothermia, high-frequency ventilation, and umbilical lines. Perspectives regarding the importance and access to STS is variable. In one NICU cohort, 18% of nurses compared with 63% of mothers believed STS should be offered daily.47 Strikingly, 61% of non-white mothers, as compared with 39% of white mothers, identified that this practice was not something they were offered.47Many parents balance competing demands both inside and outside of the hospital, challenging their ability to spend extended periods of time in the hospital, which might be necessary to consistently coordinate STS with the infant's nurses.46,48 These barriers can further be exacerbated by language differences between parents and health care workers. Families who prefer LOE experience STS in reduced amounts, lower frequencies, and shorter durations and are exceedingly vulnerable to limited involvement in this beneficial practice.49 It is important to note that these differences remained even when controlling for gestational age or frequency of visitation.49Families who identify their preferred language as a LOE are particularly vulnerable to health care disparities, including limited access to identified practices of FCC in NICUs. Clinicians must be cognizant of their important roles in engaging the family through their infant's hospitalization and the subsequent impact of FCC in short- and long-term outcomes for their patients. Underutilization of language services further exacerbates existing systemic barriers, and better outcomes have been linked to equitable access to language services. Health care teams should be encouraged to advocate for the consistent use of certified language services. The equitable implementation of FCC practices across NICUs necessitates acknowledgment of the varying needs of families, including those who may be most at risk of being isolated or marginalized. Table 1 shares reflections and recommendations for individual clinicians, health care teams, and medical systems seeking to improve NICU care, experiences, and outcomes for families who prefer LOE and their infants.As members of the health care team, we each play a crucial role in empowering families and providing equitable and evidence-based FCC. Clinicians should be aware of the ways language barriers may inhibit parental voices and further perpetuate feelings of isolation and fear. All families, irrespective of their preferred language, need to be empowered with opportunities to engage with their infants. This engagement, including STS practices, has far-reaching benefits for both infants and their families. Comprehensive use of language access services will address this key gap. Language access services should be standardized and promoted throughout routine care during the NICU course rather than limited to discharge teaching or family meetings. Families who prefer LOE deserve the same opportunity to ask questions regarding care at any time. A focus on health equity is inherent in the principles of FCC and inclusive policies are an essential component to delivering equitable FCC. When institutions prioritize and recognize the optimization in language services, they enhance FCC and move toward optimizing outcomes for all. American Board of Pediatrics Neonatal-Perinatal Content SpecificationRecognize health equity and health disparities (eg, access, social determinants of health, implicit bias, systemic racism).Understand the need for advocacy for the unmet health care needs of the maternal-infant dyad.Drs Daria Murosko and Katie Paul served as Content Consultants.