key: cord-0955937-bv373nk1 authors: Russell, Eric A.; Tsai, Carmelle; Linton, Julie M. title: Children in Immigrant Families: Advocacy within and beyond the Pediatric Emergency Department date: 2020-09-09 journal: Clin Pediatr Emerg Med DOI: 10.1016/j.cpem.2020.100779 sha: c005740a169acc3174a084f92cde8b3e119d398d doc_id: 955937 cord_uid: bv373nk1 In the United States, 1 in 4 children lives in an immigrant family. State and national policies have historically precluded equitable access to healthcare among children in immigrant families. More recently, increasingly restrictive policies, political rhetoric, and xenophobic stances have made immigrant families less able to access healthcare and less comfortable in attempting to do so, thus increasing the likelihood that patients will present to the emergency department (ED). Once in the ED, language, cultural and health literacy barriers make providing high quality care potentially challenging for some families. Emergency care professionals can therefore glean critical insight regarding inequities from clinical work to inform advocacy and policy changes at institutional, community, regional, and national levels. Health insurance coverage greatly impacts access to care and health outcomes yet varies widely across states. As of January 2020, only 6 states (Washington, Oregon, California, Illinois, New York, Massachusetts) and the District of Columbia offered health coverage to immigrant children regardless of immigration status ( Figure 1) . 27 ,28 More than half of states offer Medicaid or the Children's Health Insurance Program (CHIP) to lawfully-residing children regardless of date of entry ( Figure 1) . 27, 28 Insurance coverage is intimately connected with having a usual source of care and with emergency department (ED) utilization. 29 Additionally, increased parental coverage is associated with increased utilization of preventive health care by their children. 30 However, despite improvements in insurance coverage after passage of the Affordable Care Act including through state Medicaid expansion, Latinx youth and non-Latinx Black youth are less likely to be insured than non-Latinx white peers. 31 Additionally, citizen children with an immigrant parent are still less likely than citizen children with a non-immigrant parent to have health coverage. 32 Such inequitable health coverage naturally translates into challenging inequities in the pediatric ED. Reproduced with permission of the National Immigration Law Center 28 There are many reasons why patients of any background may present to the ED for the treatment of a nonemergent condition; however, many of these disproportionately impact CIF. As discussed above, health insurance coverage in most states is directly linked to immigration status, which in turn affects access to a medical home. In most states, immigrants have limited or no access to federally funded health care. 37 Ultimately, undocumented and "lawfully present" immigrants have significantly higher rates of being uninsured and decreased healthcare utilization and expenditures as compared to US citizens. [38] [39] [40] [41] [42] CIF subsequently have significantly diminished access to health insurance, health care, and mental health care. [43] [44] [45] Barriers to Accessing Care Many barriers impair access to care for CIF. For example, the complex laws that affect healthcare coverage are unclear to many, including those assisting immigrant families, leading to confusion over eligibility. As a result, many patients who are eligible for public programs are not aware, and therefore are not registered. 37, 46, 47 The application process is often difficult to navigate, and families may experience logistical barriers such as lack of financial resources and transportation. Health literacy challenges also affect ability to access care. 4, 48 Recently arrived immigrants may face xenophobia and racism pre-migration, during migration, and postmigration. 49 Both engender fear, leading to concern over the consequences of accessing benefits, mistrust of the healthcare system, and decreased utilization of medical care for CIF. 13 Local immigration raids and deportations have also led to decreased participation in public programs, including Medicaid and Women, Infants and Children (WIC). 50 This fear is not limited to those without legal documentation and can also affect immigrant families who J o u r n a l P r e -p r o o f may fear that they will be perceived as undocumented because of their race/ethnicity. 38 When states have enacted laws threatening immigrant families, such as with Arizona's SB1070 or Georgia's HB87, healthcare utilization among immigrant families decreased. 51,52 Likewise, restrictive policies, statements, and attitudes towards immigrant families coming from the Trump administration also undoubtedly affect families' comfort level with seeking medical care 53 and willingness to trust the health care system with their personal information. 46 Most recently, the amended Public Charge rule caused confusion and fear among immigrant families, leading to decreased utilization of healthcare, even by those not directly affected by the rule change. 19, 38, [54] [55] [56] For example, some studies have demonstrated that children who are US citizens in mixed-status families, despite eligibility for federal and state programs, have comparatively low resource utilization and still make up a significant percentage of the uninsured child population. 57, 58 With over 7 million mixed-status families in the US, it is crucial that emergency physicians acknowledge the effects of xenophobia on the health of immigrant populations. 8, 9, 33 All of these factors, and more, influence the likelihood that families will have a regular source for preventive and illness health care needs, and the likelihood that they will present to an ED instead. Emergency physicians should consider the relationships between immigration status, insurance status, race/ethnicity, and health care access in the context of health equity within the ED and beyond. In the case of CIF presenting to the ED for a non-urgent medical condition, opportunities for advocacy exist at the institutional, community, state, and federal levels. Advocacy in such cases begins with delivery of high quality and compassionate care, including addressing non-emergent needs, identifying barriers to primary care, and referral to culturally-relevant community-based resources. Many of these opportunities are in line with existing American Academy of Pediatrics (AAP) policies. 4, 5, 11, [59] [60] [61] [62] [63] Suggested advocacy action items for ED physicians are included at the end of each section (Box 1 Providing high quality and compassionate care to CIF in the ED requires purposeful attention to mitigating barriers such as language, cultural discordance, and health literacy difficulties, and augmenting strengths such as community and family support. In 2018, 22% of people in the US (67 million) reported speaking a language other than English at home. 2 Of those, 62% reported speaking Spanish at home. Among all CIF, 4% live in a home where neither the child nor parents have been in the US for greater than 5 years. 65 Without the use of professional interpretation, language barriers have a negative impact on treatment adherence, admission rates, resource utilization, repeat emergency visits, length of stay, medical errors, patient satisfaction, patient trust, and perceptions of received care. 4, 66, [75] [76] [77] [78] [79] [80] [81] [82] [67] [68] [69] [70] [71] [72] [73] [74] However, inclusion of professional interpreters is associated with improved understanding of diagnosis, treatment plan, and discharge instructions; increased filling of prescriptions; decreased return visits; decreased resource utilization; decreased admission rates; and reduction in medical errors. Interpreter use also improves patient satisfaction, perception of provider friendliness/respectfulness, and quality of care received. 66, 80, 91, 92, [83] [84] [85] [86] [87] [88] [89] [90] Despite this, pediatricians often rely on family members or non-professional interpreters, increasing the risk for negative outcomes. 4, [92] [93] [94] [95] [96] Addressing language barriers is a legal and ethical requirement, and essential to providing appropriate care to CIF. 66 Barriers can be overcome through utilization of best practices, development of programs and partnerships, and flexibility. 97 In caring for CIF, it is crucial to underscore protective cultural factors, including strength, resilience, support from extended families and communities. 4, 43, 48, 98 Providing culturally-relevant care is challenging, rewarding, ultimately vital to advancing health equity. Failure to do so may lead to mistrust of the provider or healthcare system, decreased patient compliance, and poorer outcomes. Effective communication often requires bridging cultural differences between patients, their families, and physicians. Each immigrant family comes from a unique cultural framework, informed by their life experiences, values, behaviors, beliefs, religions, languages, and understandings of illness and the role of the healthcare system. Therefore, to effectively communicate, physicians must approach their patients with cultural humility. This includes recognizing their own cultural assumptions and biases, the systemic and historical underpinnings to existing power differentials and health inequities, and their patient's cultural perspectives. 33 Physicians may have implicit racial biases that impede effective interpretation of patients' symptoms, decision making, and provider understanding of patients' ethnic and cultural disease models and expectations. 99 Failing to negotiate cultural divides may lead to improper diagnoses, improper pain management, underutilization of prescription medications, and challenges with obtaining informed consent. In the aforementioned case, the family's choice to decline admission likely encompassed factors beyond the language barrier. Additional considerations may have included J o u r n a l P r e -p r o o f the family's interpretation of the risks of declining further workup, their understanding of the disease process or treatment options, preferences regarding traditional versus Western therapies, fear of being mistreated, not having the culturally appropriate decision-making authority present, or any other number of factors. Health literacy is described as an individual's ability to "obtain, process, and understand basic health information needed to make appropriate health decisions." 100 It also reflects the complexity of the healthcare system with which the individual is interacting and the degree to which they are attempting to do so. [100] [101] [102] Health literacy affects a patient's or family's ability to understand written material, health related information, communicate effectively, and make appropriate health related decisions. 110 An estimated 1 in 3 patients/family members have low health literacy, therefore affecting most ED encounters. 103 Limited health literacy disproportionately affects people with lower socioeconomic status, minority groups, and those with limited English proficiency. Poor health literacy has been associated with higher rates of ED visits for non-emergent care, higher rates of hospitalizations, and worse preventive care and health outcomes in children. 101, [103] [104] [105] Recognizing and addressing the complexities of poor health literacy is vital to appropriately and effectively treating children in the ED, continuing quality care after discharge, and connecting them to a medical home. PEM physicians can work at institutional, community, state, and federal levels to develop systems-level approaches to advancing linguistically-and culturally-relevant care for CIF (Box 2). Box 2. Advocacy opportunities for advancing linguistically and culturally relevant care. Institutional  Explore opportunities to create welcoming spaces for CIF (e.g. signage, culturallyappropriate nutrition options, etc.)  Ensure written materials are available in common languages for your community and written at an appropriate level. Consider audiovisual or other forms of information delivery  Educate ED physicians and staff on the importance and proper use of interpreters. Ensure the availability of in-person or telephonic interpretation. Discourage the use of family, friends, or other non-professional interpreters. Children should never be used as interpreters  Integrate prompts into the medical record system to remind physicians to ask families for their preferred language  Educate ED physicians on the importance of cultural humility and the complexities of cross-cultural communication with immigrant families  Partner with interpreters, social work, and community organizations to ensure patient care is being delivered in the most culturally sensitive manner  Make health literacy an integral part of the ED's mission and operations. It should be factored into planning, evaluation measures, patient safety, and quality improvement 101 Educate ED physicians and staff on the importance of delivering diagnosis, health information, and discharge instructions to families with varying levels of health literacy  Design processes and assist patients to navigate the local health system. Provide easy access to navigation assistance 101 Community  Partner with local community-based organizations working with immigrant families to seek feedback on care provided in the ED  Offer community-based educational materials in multiple languages and in multiple platforms including signage, social media, radio, and local television State  Advocate for insurance coverage of medical interpretation through state Medicaid and the Children's Health Insurance Program (CHIP) Federal  Advocate for insurance coverage of medical interpretation through the Affordable Care J o u r n a l P r e -p r o o f Act A 16-year-old male from El Salvador who is residing in a local shelter for unaccompanied minors presents with a peri-rectal abscess that requires admission for surgical intervention and further evaluation for underlying medical conditions. Concerns are raised regarding a potentially incomplete history, ability to obtain informed consent, and language and cultural barriers. The numbers of forcibly displaced people around the world has risen to alarming levels, reaching an estimated 70.8 million in 2018. 106 There are many ways by which a family might seek safe haven in the United States, including with temporary or special visas, applying for refugee status before traveling to the US, or requesting asylum on arrival. 4, 107 According to the US Customs and Border Protection, 851,508 people were apprehended on the Southern US border in Fiscal Year 2019 (Oct 2018 -Sept 2019). 108 While the criteria and legal definitions for this complex system are beyond the scope of this paper, families seek asylum and other forms of legal protection for complex reasons, including abject poverty, interpersonal and community violence, and lack of state protection. 5 As described in a Medecins San Frontieres (Doctors Without Borders) report, 39% of migrants report direct attacks or threats to themselves or family, extortion, or gang-forced recruitment as their primary motivation for escaping. Forty-three percent have had a family member die due to violence in the preceding 2 years (notably, 56% of Salvadorans). As many as 75% report witnessing a murder or seeing a corpse in the preceding 2 years. 109 Continued violence is common during the arduous journey or even after arrival. In fact, 68% of migrants report being victims to violence during their journey and one third of women reported sexual abuse while in transit. 110 Violence may be even worse in certain higher risk populations such as unaccompanied minors or migrants who identify as lesbian, gay, bisexual, transgender, questioning, and/or intersex (LGBTQI). Under the MPP instituted in 2019, most asylum seekers approaching the US from Mexico are returned to Mexico pending their immigration hearing, regardless of their country of origin. This has led to overcrowded and unsafe makeshift camps along the border as asylum seekers from different countries and people groups-some who may have been fleeing the very people they are sent to Mexico with-are sent with limited legal protections and lack of access to counsel. Human rights organizations have documented high levels of violence, including kidnapping, rape and murder in these camps. The MPP has also compelled Mexican authorities to increase their southern border and internal enforcement where many more health and safety concerns exist. 111 When caring for recently arrived asylum seeking patients in the ED, one must consider that a patient has likely been a victim of or exposed to violence. Additional considerations include the toxic stress associated with detention and family separation. 5, 112 Health sequelae include acute physical injuries acquired during their journey and mental health concerns, especially post-traumatic stress disorder (PTSD). 113 And while most are healthy, one must be thorough with newly arrived patients as they may present with previously undiagnosed disease, poorly managed chronic diseases, or chronic diseases that have decompensated during their journey. "Children do not migrate, they flee." 114 Unaccompanied minors (UM) entering the US face added risks given their age and lack of family support. They are at high risk of having been witness or subject to physical and sexual violence, including human trafficking, rape, kidnapping, extortion, torture, and murder. According to Amnesty International, as many as 6 in 10 Central American women and girls are victims of sexual violence during their migration through Mexico. 115 Based on previous experiences with violence, history taking and physical examination can be re-traumatizing. In particular, extreme sensitivity should be utilized if a genital or rectal exam is required for any recently-arrived patient. Once in the US, UM are detained in Customs and Border Patrol (CBP) processing facilities for up to 72 hours before being transferred to the Office of Refugee Resettlement (ORR) custody. From there they are placed in ORR shelters for UM, often for several months, pending reunification with a family or community sponsor or placement in the foster care system. It is important to note that not all unaccompanied minors arrive to the US alone. Children may be separated from their family members for reasons of detention, removal or prosecution of the adult family member, thus exposing them to additional trauma. For children coming to the ED from the ORR shelter, all should have had an initial medical evaluation within 72 hours of arrival to the shelter, and all children should have access to medical care after discharge. Most shelters have daily nursing staff and access to a medical home onsite, offsite, or at times via telehealth (particularly in the setting of COVID-19). Any discharge or follow up instructions should be clearly written for the receiving shelter medical staff. If the child requires subspecialty care, this should be expedited, if possible, as there may only be a short window before the child leaves the shelter. While in ORR custody, medical care is covered by ORR, and expedited follow up may remove medical barriers for reunification. As with any patient, if the child requires hospitalization or procedures, informed consent must be obtained. As the child is in ORR custody, ORR has the full legal authority to consent; however, the minor should be a full participant in medical discussions (as is age appropriate) and full assent should be sought by the medical team. Clinicians should also feel empowered to seek speaking to the patient's family, whether they are in the US or another country, assuming that contacting the patient's family would not compromise the child's safety. While the parents do not have medical decision-making authority, obtaining a complete history and having their participation in the consent process is, in most cases, the right thing to do. By working together with the patient, the patient's family, and the ORR shelter, we can improve our ability to best care for the child while in our ED, after returning to the ORR shelter for UM, and after reunification. Immigrants undergo an intense period of unfamiliarity and uncertainty throughout the migration experience, including in country of origin, during migration, and after arrival in the U.S. Post-migration, immigrant youth have high rates of post-traumatic stress disorder and depression. Up to 85% of refugee youth experience bullying. 116 In fact, when compared with non-immigrant youth, immigrant youth are more likely to present to the ED rather than other medical facility with their first mental health crisis. 117 The ED practitioner should offer trauma-informed care, addressing psychosocial needs when possible. ED physicians can also emphasize inherent strengths that may provide a protective benefit to our patients, including extensive community and extended family support. 63 For instance, CIF often have strong cultural identification but yet are able to maneuver between the dominant US culture and that of their family and home country. 43, 49 The ED approach therefore should be holistic, understanding that addressing the child's family and support network may be an important component of doing what is best for the patient. The subset of child immigrants who identify as part of the LGBTQI community have unique healthcare access challenges that the PEM practitioner should be aware of. They are more likely to utilize the ED, to report financial barriers to medical care, and experience difficulties accessing mental healthcare. 118 Data on sexual minority immigrant youth are sparse, but non-immigrant sexual minorities have more unmet health care needs and less routine care compared to their heterosexual counterparts. 119 This is likely compounded by the additional barriers to healthcare immigrants experience. LGBTQI youth may be stigmatized or considered lower class. 120 Many report bullying and victimization. 121 In the setting of limited access to care and social ostracism, physicians caring for LGBTQI immigrant youth must recognize that an ED visit may be one of the few contacts the patient may have with the healthcare system. Sexual minority youth express need for privacy, confidentiality, inclusivity of language, and increased physician comfort with topics of LGBTQI-related health issues. 122 As such, PEM physicians must work to establish trust and promote J o u r n a l P r e -p r o o f safety, recognize the complexities of their mental health challenges, and be introspective about one's own implicit biases. 123 Children who are immigrants or undergoing migration are at increased risk of labor and sex trafficking. 124 They are uniquely vulnerable to exploitation and human rights violations due to the same risk factors (e.g. poverty, persecution, fear) that caused them to migrate in the first place. 125 ED physicians should educate themselves on red flags for trafficking and coercion, such as reluctance to give a history without deferring to the accompanying person, injuries out of proportion to stated history, lack of control of documents and identification, multiple sexually transmitted infections or multiple partners, etc. The National Human Trafficking Hotline (1-888-373-7888) offers basic procotols, and various screening tools for trafficking that are undergoing validation for the pediatric ED. 59 Victims of human trafficking may be eligible for a protective visa if they work with law enforcement and other authorities. Social services in the pediatric ED should be aware of this and know how to link victims with appropriate legal assistance in pursuing a T-visa when applicable. Special populations, including immigrant families seeking safe haven, unaccompanied minors, CIF with mental health difficulties, CIF who identify as LGBTQI, and victims of human trafficking, face unique challenges within the broader population of CIF. PEM physicians have opportunities to advocate for policy changes to support the unique health and wellness needs of CIF who are part of special populations (Box 3). process to expedite their appointments o Explore opportunities to fill in any gaps to care that the ORR shelter might not be able to provide  Collaborate with local community-based organizations who offer services to LGBTQI youth and ensure that linguistically-and culturally-relevant resources are available in the ED  Partner with community-based organizations to expand linguistically-and culturallyrelevant mental health services for referral when mental health challenges arise in the ED  Partner with and advocate for organizations providing post release services for those children who were previously detained and/or newly arrived to the community. State  Advocate for the expansion of public funding for mental health services accessible to CIF through school-based health centers and/or community-based organizations  Advocate against state-level policies that unravel protections for LGBTQI individuals  Advocate for "safe harbor" laws that recognize trafficked children as victims rather than perpetrators, and prevents them from being prosecuted for prostitution Federal  Advocate for policy makers to create an inclusive immigration policy that protects the J o u r n a l P r e -p r o o f health, well-being, and safety of all CIF, especially those requiring special protections as outlined above  Attend to guidance from professional organizations and encourage others regarding comments on rule changes that negatively affect immigrant health, such as new asylum regulations, public charge regulations, and efforts to prolong detention for immigrant families (https://www.federalregister.gov) A 3-year-old female presents to the ED with distal finger cellulitis that began during the SARS-CoV-2 outbreak. Her mother prefers to speak Vietnamese, had lost her job, and harbored significant fear of both accessing healthcare and of contracting COVID-19. She treated the finger with home remedies for two weeks until the infection continued to spread causing intractable pain and severe swelling. The child was found to have severe osteomyelitis and underwent IV antibiotic therapy and distal fingertip amputation. A pandemic such as COVID-19 places additional strain on immigrant families already facing a myriad of social and economic challenges, exposing gaping inequities in our system. 126 Many factors contribute to inequitable outcomes for CIF during the pandemic, including diminished access to care from language barriers or limited health literacy, insufficient health coverage, or decreased access to medical homes. Immigrant families may also be less likely to enroll in nutritional assistance or other social support programs. 33 In addition, immigrant children are more likely to live in multi-generational households and therefore unable to limit social contacts. Adults may have fewer financial resources and be required to work to make ends meet, or they may be more likely to be in frontline, essential jobs and therefore faced increased infectious exposure. Increasing xenophobia has also been all too present. At the start of COVID-19, Twitter was inundated with xenophobic messaging targeting Asian communities, amplified by messages of fear and anger worldwide. 127 The Asian Pacific Policy and Planning Council reporting center documented nearly 1,500 reports of verbal harassment, physical assault, and civil rights violations against Asians within four weeks of its inception. 128 Considering one quarter of Asians are immigrants and this population is growing, xenophobia against Asians affects the pediatric immigrant population profoundly. 129 Xenophobia in the setting of the pandemic may also contribute to fear to seek medical care. While there is not yet sufficient research to investigate delays to care, emerging data suggests that some are experiencing harm due to this delay. 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