Senior Research Associate
Family-Centered Care Matters for Kids With Special Needs, but Many Families Report Challenges With Providers
Families with limited resources or inconsistent insurance are more likely to face hurdles, new study finds.
Children and youth with special health care needs (CYSHCN) who receive family-centered care generally have better health outcomes, research shows. When health care providers engage and prioritize the needs of the family, CYSHCN enjoy better overall health; better access to coordinated, ongoing, comprehensive health care within a medical home; fewer emergency department visits; and fewer unmet health needs.
Yet in the United States, CYSHCN families from disadvantaged groups face barriers to receiving high-quality family-centered care, according to a new analysis of national survey data by Paul Morgan, now at the University at Albany, SUNY, and colleagues at Penn State University and SRI International.1
The researchers assessed family-centered care by measuring the extent to which doctors or other health providers:
- Spent enough time with the child.
- Listened carefully.
- Showed sensitivity to the family’s values and customs.
- Provided the family with specific information they need concerning the child.
- Helped the family feel like a partner in the child’s care.
Data were from the 2016–2019 National Survey of Children’s Health (NSCH), which uses a five-question screener to identify CYSHCN.
The study focused on the quality of care received by CYSHCN families in visits to health professionals in the previous year and controlled for potentially confounding factors including children’s general health status and the severity of their impairments.
Socioeconomic Background Is Tied to the Quality of Family-Centered Care
Morgan and colleagues found that some CYSHCN families report greater barriers to receiving high-quality family-centered health care, including:
- Families without consistent health insurance coverage.
- Poor and lower-income families.
- Single-parent families.
- Families who usually receive care in a clinic or health center, emergency room, or other setting outside a doctor’s office.
- Families of children with autism spectrum disorders, anxiety, or depression.
By contrast, families of CYSHCN with asthma—the most commonly reported special health care need—were significantly more likely to receive family-centered care than families of CYSHCN without asthma.
The results did not show consistent racial/ethnic disparities across all the measures of family-centered care—a finding that surprised the researchers. However, families of Black and Hispanic CYSHCN reported that providers spent relatively less time with their children compared with families of white CYSHCN. Families of Hispanic CYSHCN also said that providers showed less sensitivity to their family’s culture and customs.
A Targeted Approach Could Help Improve Care
Evidence from the study suggests that socioeconomic factors, rather than race or ethnicity, are central drivers of disparities in family-centered care among CYSHCN in the United States. To address these disparities, policies and systems of care serving these young people and their families can adopt comprehensive, coordinated approaches to increase provider-family engagement, cultural responsiveness, and shared decision-making, the authors noted.
To help particularly vulnerable CYSHCN families, targeted actions should focus on care provided in emergency departments, community clinics/health centers, and other non-office settings, and on providers caring for children with autism spectrum disorders or internalizing disorders, the authors suggested.
This article was produced under a grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). The work of researchers from Penn State University was highlighted.
- Paul L. Morgan et al., “Disparities in Family-Centered Care Among U.S. Children and Youth With Special Health Care Needs,” The Journal of Pediatrics 253 (2023): 297-303.e6.