Navigating the Health Care System in Community: Perspective from Asian-American Immigrant Parents of Children with Special Health Care Needs

Background & Purpose

Children with special health care needs (CSHCN) face notable disparities in health care access, quality and family-centeredness, despite higher health care utilization rates. Within the population of CSHNC, there are important disparities impacting immigrants and racial/ethnic minorities. However, little is known about the experiences and needs of Asian-American immigrant families who have CSHCN in accessing care for their children, and whether these experiences might drive disparities. 

Methods

We conducted one-on-one interviews with 22 Vietnamese and Cantonese speaking parents of CSHNCs, who identified as Asian-American immigrants. Participants were recruited through community partners. Interviews were semi-structured, and followed a standardized interview guide that first collected basic demographic data and then asked participants about their experiences accessing health care and other services for their child, met and unmet needs, and their perceptions of the quality and culturally competency of their child’s care. Interviews were conducted in Vietnamese or Cantonese, by a native speaker of that language and audio-recorded, transcribed and translated by professional translators. Analysis was conducted in English, using the translated transcripts and data were analyzed using content analysis and inductive, grounded coding techniques.

Results

Qualitative analysis identified several important barriers to and facilitators of care, some of which overlapped with general population experience, and some which were more unique to Asian-American immigrants and their children with special health care needs, such as navigating the system as a newcomer. These culturally specific barriers to care were often addressed through the use of community and informal supports, but also impacted participants’ relationships with their health care providers. Language barriers, including issues with interpreters, impacted participants’ overall quality of care. In other words, participants were generally satisfied with their children’s care, and had strong relationships with their clinicians, who were often culturally “matched.” However, participants experienced several important and culturally specific barriers, including gaps in their understanding of the health care system, language barriers and a sense of alienation that they felt might be due to either their immigrant status or their child’s disability. Parents frequently turned to informal and community supports for assistance in navigating the U.S. health care system.

Conclusions & Implications

Though this study was conducted in an urban area with many resources to support its large Asian-American immigrant population, participants still reported significant difficulty in navigating the health care system and obtaining the information and supports they needed. As parents frequently relied on community support and resources, community-based programs may be a successful strategy for further engaging this population and addressing disparities. Further research to understand the drivers of health disparities and policy level solutions is warranted.