Hispanic Children with Special Health Care Needs and Family Centered Care: How Often Do They Get It and Does It Improve Outcomes

Background/Purpose: In the U.S., nearly 20% of all children and 22.6% of Hispanic children have at least one special health care need; that is, a chronic physical, developmental, behavioral, or emotional condition that requires health and related services. Disparities in care exist for Hispanic children with special health care needs (CSHCN), and cultural barriers between families and health care providers may play a role. The Maternal and Child Health Bureau promotes family centered care (FCC) as a way to reduce disparities among CSHCN. FCC is defined as a partnership between families and health professionals in which families and professionals work together in the best interest of the child and the family. Cultural competence is a core component of FCC. FCC is associated with better outcomes for CSHCN. 

The purpose of this study was to examine the prevalence of FCC among Hispanic CSHCN and whether FCC was associated with better outcomes. The following three hypotheses were tested: 1) Hispanic CSHCN are less likely to receive FCC; 2) Hispanic CSHCN with FCC are less likely to have unmet needs for medical care; and 3) Hispanic CSHCN with FCC are less likely to have unmet needs for family support.

Methods: Data and sample: Data came from the 2009-2010 US National Survey of Children with Special Health Care Needs. In total, 40,242 detailed CSHCN interviews were completed, 4395 of which were with Hispanic CSHCN.

     Measures: CSHCN with one or more doctor visits in the past 12 months were asked five questions on a 4-point Likert scale ranging from “Never” to “Always” about FCC in regard to those doctors visits. CSHCN were considered to have received family centered care if they responded “Usually” or “Always” to all five questions. CSHCN who had a need for at least one of 14 different health care services or equipment in the past 12 months were asked if the they got all the care was needed in that area. Respondents were asked about unmet needs for family support including respite care, family genetic counseling, and family mental health care.

     Data analysis: Binary logistic regression was used to estimate the odds of receipt of family centered care for CSHCN based on ethnicity. Binary logistic regression was also used to estimate the odds of unmet needs based on receipt of FCC in the subgroup of Hispanic CSHCN.

Results: Hispanic CSHCN were less likely than non-Hispanic CSHCN to receive FCC when controlling for sociodemographic variables (OR= .807, CI .748-.870). Those Hispanic CSHCN who did receive FCC were less likely to have unmet care needs (OR = .476, CI .898-1.21) and less likely to have unmet family support needs (OR = .393, CI .308-.501).

Conclusions and Implications: FCC is associated with improved health outcomes for Hispanic CSHCN, but they are less likely than their non-Hispanic counterparts to receive FCC. Efforts should be directed at increasing the prevalence of FCC among Hispanic CSHCN. Reducing the FCC disparity may reduce unmet needs among Hispanic CSHCN leading to overall better outcomes for this growing population.