Cross-Cultural Differences among Children and Youth with Special Health Care Needs: A Mixed-Methods Analysis of Chinese, Spanish, and English-Speaking Families

Authors

• Kathleen McGrath, Albert Einstein College of MedicineFollow
• Miriam Franco, Rose F. Kennedy CERC/UCEDD, Department of Pediatrics -- Albert Einstein College of Medicine/MontefioreFollow
• Amy Morales-Lara, Icahn School of Medicine at Mount SinaiFollow
• Karen Bonuck PhD, Albert Einstein College of MedicineFollow
• Joanne Siegel, Albert Einstein College of MedicineFollow

Abstract

One in five U.S. children has a special health care need, with prevalence rates rising each year. Children and youth with special health care needs (CYSHCN) from immigrant and/or non-English speaking families face heightened barriers to care, unmet health needs, and worsened health outcomes. This mixed-methods study explores cross-cultural similarities and differences among English-, Spanish-, and Chinese-speaking families of CYSHCN across four key domains – (1) the diagnostic process, (2) access to essential services, (3) community integration, and (4) social supports. As part of a statewide, New York State Department of Health funded initiative implemented across three University Centers for Excellence in Developmental Disabilities (UCEDDs), a series of semistructured individual interviews (n  =  19) and focus groups (n  =  23) were conducted with 136 parents of 181 CYSHCN. Participants were recruited from the New York City metropolitan area and grouped by primary language (59% English, 23% Spanish, 18% Chinese). Qualitative data were coded via Dedoose software (yielding 1,954 excerpts) and analyzed thematically across the four study domains. Families recounted mixed success in obtaining timely diagnoses and service access, with delayed diagnoses occurring more often for ‘non-visible’ conditions such as Autism and ADHD. Parent intuition and advocacy played a critical role in securing diagnoses and accessing services. Families also frequently cited difficulties in navigating health and education systems, describing them as “complex,” “fragmented,” and “confusing.” Amidst commonalities, Chinese- and Spanish-speaking families cited unique barriers including heightened family and community-based stigma, health literacy challenges, and mistrust of healthcare systems. Additionally, these families relied more heavily on parent-to-parent networks and cultural organizations, while English-speaking families were more likely to utilize healthcare and school-based providers. Future funding and efforts should prioritize trained interpreters, bilingual providers, translated resources, parent support networks, and family-centered, culturally competent care for diverse CYSHCN populations. Federal programs such as UCEDDs and LENDs are essential providers of evidence-based, culturally responsive services and supports that reduce disparities and improve outcomes for CYSHCN and their families.

Plain Language Summary

One in five U.S. children has special health care needs. This number keeps growing. This study looked at how families from different backgrounds get care for their children with special needs. The families spoke English, Spanish, or Chinese. Researchers talked to 136 parents in New York City. These parents had 181 children with special health care needs. The researchers wanted to understand four main things. They looked at getting a diagnosis, accessing services, fitting into the community, and finding support. Getting a diagnosis was often hard and slow. This was especially true for conditions you cannot see right away, like autism and ADHD. Parents had to fight for their children. They had to trust their gut feelings when they knew something was wrong. All families struggled with healthcare and school systems. These systems felt complex, broken, and confusing. But Spanish- and Chinese-speaking families faced extra challenges. English-speaking families did not deal with these problems as much. Spanish- and Chinese-speaking families had special barriers. They faced more shame from family and community members. They had trouble understanding health information. They trusted doctors and healthcare systems less. They had to rely more on other parents and cultural groups for help. English-speaking families got more help from doctors and schools. The study shows that healthcare systems need changes. They need more language interpreters and doctors who speak multiple languages. They need materials in different languages and parent support groups. Programs that provide culturally appropriate care are important. These programs help reduce inequalities and improve outcomes for all children with special needs. This research shows that all families face challenges. But language and cultural barriers create extra hurdles that need specific attention and solutions.

Creative Commons License

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Recommended Citation

McGrath, Kathleen; Franco, Miriam; Morales-Lara, Amy; Bonuck, Karen PhD; and Siegel, Joanne (2026) "Cross-Cultural Differences among Children and Youth with Special Health Care Needs: A Mixed-Methods Analysis of Chinese, Spanish, and English-Speaking Families," Developmental Disabilities Network Journal: Vol. 5: Iss. 2, Article 19.
DOI: 10.59620/2694-1104.1151
Available at: https://digitalcommons.usu.edu/ddnj/vol5/iss2/19