Forgone Family Employment and Care Coordination in Children With Medical Complexity.
Document Type
Article
Publication Date
9-2026
Identifier
DOI: 10.1542/hpeds.2025-008788
Abstract
BACKGROUND AND OBJECTIVES: While the relationship between family income and child health care needs has been studied in children and youth with special health care needs, this dynamic in children with medical complexity (CMC) remains underquantified. To address this gap, we examined the association between child-household characteristics and caregiver time spent on care coordination with forgone family employment (FFE) among families of CMC.
METHODS: Cross-sectional surveys of parents/caregivers of CMC receiving care at a children's hospital were conducted (2015-2020). FFE was defined as a parent/caregiver stopping work and/or decreasing work hours due to the child's health. Child-household characteristics, such as out-of-pocket costs and hours spent on care coordination, were examined by FFE status. Logistic regression was used to evaluate the association between caregiver-provided care coordination and FFE.
RESULTS: FFE (all types) occurred in 71% of previously employed families of CMC; stopping work occurred more frequently (38%) than decreasing work hours (29%). Most caregivers reported high out-of-pocket costs (>$1000/y for 87% of respondents). We found a strong association between FFE and hours of family-provided care coordination, with an adjusted odds ratio of 4.0 (95% CI, 1.4-11.5) for 5 or more vs less than 5 hours per week. FFE was not associated with family income.
CONCLUSIONS: FFE frequency among families with CMC was substantial and associated with care coordination hours. Expansion of policies and programs to support CMC caregiving and improve care coordination delivery may support these families' economic stability.
Journal Title
Hosp Pediatr
Volume
16
Issue
9
First Page
733
Last Page
741
MeSH Keywords
Humans; Cross-Sectional Studies; Child; Employment; Male; Female; Caregivers; Children with Disabilities; Adolescent; Child, Preschool; Health Expenditures
PubMed ID
42448345
Keywords
Cross-Sectional Studies; Employment; Caregivers; Children with Disabilities; Health Expenditures; Child Health Financing; Disabilities; System-Based Practice
Recommended Citation
Wright SM, Zaniletti I, Colvin JD, Goodwin EJ, Plencner LM, Foster C. Forgone Family Employment and Care Coordination in Children With Medical Complexity. Hosp Pediatr. 2026;16(9):733-741. doi:10.1542/hpeds.2025-008788
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