Forgone Family Employment and Care Coordination in Children With Medical Complexity

Area of Science:

• Pediatric Health
• Health Services Research
• Caregiver Support

Background:

• Limited data exists on the economic impact of caregiving for children with medical complexity (CMC).
• Previous studies focused on children with special health care needs, leaving a gap in understanding CMC caregiver employment.
• Caregiver time for care coordination is a significant factor in family economic stability.

Purpose of the Study:

• To investigate the association between child-household characteristics and forgone family employment (FFE) among families of CMC.
• To quantify the relationship between caregiver time spent on care coordination and FFE.
• To identify factors influencing economic stability for families managing CMC.

Main Methods:

• Cross-sectional survey of parents/caregivers of CMC (2015-2020).
• Defined FFE as work cessation or reduction due to child's health needs.
• Used logistic regression to analyze the association between care coordination hours and FFE.

Main Results:

• 71% of previously employed families experienced FFE; 38% stopped working, 29% reduced hours.
• 87% reported high out-of-pocket costs (>$1000/year).
• 5+ hours/week of care coordination was strongly associated with FFE (aOR 4.0, 95% CI 1.4-11.5).

Conclusions:

• Substantial FFE occurs in families with CMC, directly linked to care coordination demands.
• Care coordination hours are a key predictor of FFE.
• Policy and program expansion is needed to support CMC caregivers and enhance economic stability.