Well-Being, Healthcare Utilization and Spending Among Parents of Children and Youth with Special Health Care Needs (CYSHCN) in the United States

Background and Purpose:

Approximately 20 percent of children in the United States have physical, developmental, behavioral, and/or emotional health conditions requiring specialized services and support (i.e., Children and Youth with Special Health Care Needs; CYSHCN). Parents in these families navigate convoluted health and social services pathways that hinder access to critical care for their children. These barriers to care, coupled with feelings of social isolation, contribute to parents’ emotional and physical fatigue, placing them at increased risk for chronic health conditions (e.g., depression and chronic pain). We examined the association of being the parent of CYSHCN with parental well-being, healthcare utilization, and healthcare spending to ultimately inform interventions that can alleviate burdens and reduce excess healthcare utilization and expenditure.

Methods:

We examined a representative sample of parents in the United States from the Medical Expenditure Panel Survey (MEPS) 2016-2022 (n= 41,282), which links self-reported data to provider and facility administrative records and includes family unit and CYSHCN indicators.

Outcomes included utilization and spending by service type (i.e., outpatient, emergency, inpatient, and prescription drugs). Well-being measures included depressive symptoms within preceding two weeks (Patient Health Questionnaire-2; PHQ-2), psychological distress within preceding 30 days (Kessler Psychological Distress Scale; K6), and behavioral health diagnosis within survey year (International Classification of Disease-10; ICD-10).

Linear probability models regressed being the parent of CYSHCN on measures of well-being. Two-part generalized linear models regressed being the parent of CYSHCN on spending for each healthcare service type; interaction terms were used to estimate the differential impact of the effects by measure of well-being. Pooled variance, strata and observation weight adjustments accounted for MEPS’ complex survey design in accordance with available guidance.

Results:

While parents of CYSHCN were more likely to have a diagnosis for a behavioral health condition (~10 percentage points(pp) higher), differences in likelihood of screening positive for psychological distress (K6) and depression within the past two weeks (PHQ2) were less pronounced (less than 5pp for both). Spending was highest among parents with a behavioral health diagnosis, regardless of whether or not they were the parents of CYSHCN. Parents of CYSHCN used more preventative care (e.g., outpatient and prescription). Among parents screening positive for depression, parents of CYSHCN were more likely to use an emergency department. However, parents of CYSHCN had fewer and shorter inpatient stays, and spent less on inpatient hospitalizations, regardless of indication of parental well-being.

Conclusions and Implications:

Findings suggest parents of CYSHCN have higher rates of preventative care, higher prevalence of diagnoses, and lower rates of inpatient hospitalizations. Parents of CYSHCN are more likely to be diagnosed with depression than other parents. However, differences in depression screening (PHQ-2) and recent psychological distress (K6) were minimal. Future research should investigate if parents of CYSHCN are more attuned to their mental and physical health than other parents, given the need to remain capable of supporting their children, and if expertise gained by seeking treatment for their children informs their own healthcare use.