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

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.