summarizes the characteristics of 18,135 children with SHCN and their families. Over nineteen percent of the families perceived a financial burden associated the health condition of their SHCN child. Almost a quarter of the families spent over $1000 annually on their child’s medical care. Mothers completed the survey more often than fathers. A majority of families lived in urban areas and were composed of two biological or adopted parents. More than half the families were 200% of federal poverty level (FPL) or greater. English was the most common language spoken in the home, and the highest education level in the household was on average more than high school. Over 50% of the families reported that they did not provide home care, need additional income, cut work hours, or stop working because of their child’s health condition. A majority of children were male and almost 11 years old with approximately two health conditions. Sixty-three percent of the children had private insurance only and 75% were Caucasian.
Family and child demographic characteristics of study sample
displays the coefficients and odds ratios (OR) for the estimated logistic regression model of financial problems. Health care expenditures were positively associated with family perception of financial burden. The odds ratios on $250–$500 (OR 2.48, p=.001), $501–$1000 (OR 3.21, p=.001), $1001–$5000 (OR 5.59, p=.001) and greater than $5000 (OR 8.84, p=.001) were significantly and positively associated to family perception of financial burden. The odds of perceiving financial burden increased from 2 times for expenditures of $250–$500 (OR 2.48, p=.001) to almost 9 times for expenditures over $5000 (OR 8.84, p=.001) when compared to $0 expenditures controlling for family and child characteristics. The odds ratio on less than $250 (OR 1.23, p=.139) was not significant. This suggests that when family expenditures reach $250 or higher families perceive financial burden.
Logistic regression estimating family financial burden
Families with lower incomes perceived financial burden at lower level of health care expenditures than families with higher income as displayed on . For poor and low income families, the odds ratios on $250–$500, $501–$1000, $1001–$5000 and greater than $5000 were significantly and positively associated to family perception of financial burden. For moderate income families, $1001–$5000 and greater than $5000 were significantly and positively associated to family perception of financial burden. For high income families, expenditures greater than $5000 were significantly and positively associated to family perception of financial burden. This suggests that as family income decreases, lower levels of expenditures are associated with financial burden.
Logistic regression estimating family financial burden by income status
Several family characteristics were significantly associated with increased odds of family financial burden. These included providing home care (OR 1.42, p=.001), parents stopping work (OR 3.14, p=.001), cuts in parental working hours (OR 1.91, p=.001), the need for additional income (OR 7.74, p=.001), poor (OR 2.92, p=.001), low income FPL (OR 3.190, p=.001), moderate income (OR 2.36, p=.001). However, when household education level was less than high school, families had decreased odds of perceiving family financial burden (OR .60, p=.004).
Child characteristics significantly associated with family financial burden were moderately severe health conditions (OR 1.71, p=.001), severe health conditions (OR 2.87, p=.001) emotional problems (OR 1.65, p=.001) heart problems (OR 1.57, p=.012), joint problems (OR 1.57, p=.008), and multi-racial ethnicity (OR 1.36, p=.044). Controlling for other factors, rural, age, type of health conditions, number of health conditions, sex, insurance type, survey respondent, family structure, household language, and black/other race had no significant relationship with financial burden.