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Forgone Family Employment and Care Coordination in Children With Medical Complexity
S Margaret Wright1,2, Isabella Zaniletti3, Jeffrey D Colvin1,2
1Children's Mercy Kansas City, University of Missouri-Kansas City School of Medicine, Kansas City, Missouri.
Insights
Caregiver time spent coordinating care for children with medical complexity (CMC) is linked to forgone family employment (FFE). Increased care coordination hours significantly increase the likelihood of FFE, impacting economic stability.
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.
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.
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