Nearly 80 million people are estimated to have been forcibly displaced from their homes worldwide. The magnitude is staggering, accounting for nearly 1 in 100 people alive today.1 Twenty-six million of these have crossed a national border and undergone formal registration processes to become refugees, defined as “someone who owing to a well-founded fear of being persecuted for reasons of race, religion, nationality, membership of a particular social group, or political opinion, is outside the country of his nationality, and is unable to or, owing to such fear, is unwilling to avail him[or her]self of the protection of that country…”2
Children in Refugee Contexts
Children now account for almost one-half of all refugees worldwide, reaching an estimated 30 to 34 million displaced, and are, also, frequently affected by internal displacement, constituting >60% of internally displaced persons in Afghanistan, the Democratic Republic of Congo, Somalia, and Burkina Faso.1 In addition to physical threats to their well-being,3 refugee children may face additional stress and trauma exposures, malnutrition, infectious diseases, poverty, personal and family mental health conditions,4–6 and more limited access to health care and education.6–9 Those who are resettled to a new location often continue to experience poverty and limited access to health and mental health care, alongside challenges associated with stigma, language learning, and cultural adjustments.10
Developmental Needs of Refugee Children
The first years of childhood are critical for brain development.11 Poverty, trauma, malnutrition, and early adverse events have been documented to decrease the density of early neural connections and myelination patterns.12–14 Early neglect, disruptions in routine, and lack of contiguous educational and health systems incur behavior, cognitive, and social tolls.15,16 Instability and parental stress further contribute to children’s insecurity during a psychologically formative time.17 Access to needed specialized services is scarce for children with disabilities worldwide.18 Combined, these factors increase the risk for underdiagnosed developmental, neurologic, and mental health conditions. Children with neurodevelopmental disabilities may be particularly vulnerable to health and education access issues, both in refugee contexts and after resettlement. They are also more vulnerable to physical violence, abuse, and neglect and may be at increased risk for secondary trauma.18,19
After refugee resettlement, clinicians are charged with diagnosing existing medical conditions (eg, parasitic illnesses or anemia); monitoring development, mental health, and health; and assisting with integration into schools and community systems.20 Linguistic and cultural differences can contribute to the difficulty of these already challenging tasks.12,14,15 Given this complex backdrop, several centers in the United States have developed international child development clinical programs to provide neurodevelopmental care to children coming as refugees, including the International Child Development Clinic at the University of Virginia Children’s Hospital, on which we base our experience.
International Child Development Assessments
Children arriving as refugees may be referred for developmental assessment from a variety of locations, including primary care or medical homes, refugee resettlement support agencies, and school systems, or through parental concerns. Children are referred for a variety of neurodevelopmental concerns, including motor impairment (eg, cerebral palsy, myelomeningocele, or dystonia), language, learning and behavioral conditions, and significant medical challenges with accompanying developmental delays (eg, complex congenital heart disease or brain anomalies). Some children require the care of multiple specialists in addition to developmental-behavioral pediatrics, such as occupational, physical, or speech-language therapists. Common cooccurring medical conditions include serious or chronic infections, anemia, elevated blood lead levels, poor growth and/or nutrition, and microcephaly. Some children with medical complexity struggle with weight gain over time, whereas others gain excessive weight after adjusting to new local diets.21
Many families report significant stressors in their countries of origin, including violence, persecution, instability, and lack of resources, as well as stress after resettlement, including financial stress, lost health insurance, family separation, and cultural and linguistic challenges.22 Anxiety and post-traumatic stress disorders are seen in a subset of children.6 Children seen in the neurodevelopmental refugee clinic may have more medical complexity and neurologic challenges than other children referred for developmental assessment. Additionally, more subtle cognitive or behavioral challenges may not be as readily identified because of cultural or linguistic challenges. Referrals for learning challenges, inattention, or social communication challenges may be delayed while children adapt to a new culture and learn a new language.
Guidance for Primary Care Pediatric Clinicians
Care of children coming as refugees is aided by a thorough history and physical and neurologic examination, including head circumference, laboratory work (if not already completed), and assessment of family needs.23,24 Recommendations for primary care pediatric clinicians are outlined in Fig 1. Allocating additional time is useful for appointments, given the need for interpretation, possible lack of objective medical and educational records, potential cultural barriers, and complex psychosocial milieu. Developmental assessment of children coming as refugees benefits greatly from a multidisciplinary team, with interpreters playing a central role.25–27
Establishing rapport and supporting the family’s understanding of the child’s condition is key.28 This finding is supported by qualitative interviews in Kroening et al20 who reported that many participants denied having a specific word for development in their primary language and had limited awareness of developmental milestones. Speech-language delays and behavior problems were the concerns most likely to prompt family awareness.20 Once rapport is established, routine developmental-behavioral and mental health screening and queries about adverse events, trauma, and resilience opportunities for the child lead to openings for support.29,30 Standardized developmental-behavioral screening tools are useful to inform clinical decisions and support requests for early intervention and/or school-based services but should be interpreted with caution, given their lack of validation in many languages and potential for cultural barriers.27 Adaptive skills (eg, cooking, dressing, and navigating daily tasks) and previous school performance may be assessed to compare functioning with peers of a similar age.24
Prompt treatment of identified medical and mental health conditions and referral for needed subspecialty evaluations and treatment will help assure care is started for all conditions that may complicate evaluation for developmental delay and disability. However, referral for developmental assessment and treatment should not be delayed while other acute needs are met, particularly given the long wait times for these services. Such referrals may include developmentally related medical (eg, medical subspecialty and physical, occupational, and/or speech-language therapy), educational (eg, early intervention [0–3 years] and local school districts [>3 years]), and parent support agencies. As families navigate complex systems to meet their acute needs, care coordination support is necessary to assure referrals can be completed in a timely fashion (see Fig 2 for examples). Children coming as refugees will similarly benefit from guidance on care needs for children in immigrant families.31
Conclusions
It is an extraordinary privilege to work with families seeking to provide the best opportunities for their children in a new setting. In this work, we highlight the importance of early, wraparound developmental care for children arriving as refugees to promote their success and well-being. This article is focused only on refugee children resettled in the United States and, thus, represents a minority of children displaced worldwide. More extensive epidemiological and programmatic efforts for refugee children in other contexts, particularly lower-resource settings, will be vital to our understanding and support of this population.
Dr Scharf conceptualized and designed the monthly feature, looked at clinic statistics, drafted the initial manuscript, reviewed and revised the manuscript, and runs the International Child Development Clinic at University of Virginia Children’s Hospital; Ms Zheng collected data on the clinic population, examined clinic data, and contributed to manuscript writing and editing; Dr Briscoe Abath conceptualized and designed the monthly feature, looked at clinic statistics, drafted the initial manuscript, reviewed and revised the manuscript; Dr Martin-Herz contributed to conceptualization and design of the monthly feature and critically reviewed and revised the manuscript for important intellectual content; and all authors approve the final manuscript as submitted and agree to be accountable for all aspects of the work.
FUNDING: Dr Scharf had funding from Doris Duke Charitable Foundation Clinical Scientist Development Award. Ms Zheng had funding from the University of Virginia Center for Global Health.
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