Abstract
Objectives: This study examined parental care of children with medical complexity (CMC) in terms of time spent providing care and impacts on employment and career. Methods: We recruited caregivers of 153 CMC in a tertiary center complex care program to participate in a cross-sectional mail survey. Results: Among 95 respondents (62% of eligible), 75% of primary caregivers and 53% of spouses experienced employment losses and one-third experienced negative career outcomes attributed to care for CMC. On weekdays during the day (6 a.m.–6 p.m.), 55% of caregivers provided care for 8 hours or more. On weekday evenings and nights, half of caregivers provided care for at least 6 hours, including 53% of caregivers who provided care from midnight to 6 a.m.; these proportions were higher on weekends. Compared to employed caregivers, non-employed caregivers reported spending more time providing care on weekdays (P =.001), but less time providing care on weekend evenings (P =.019). On weekend days and weekday evenings/nights, employment was not associated with duration of care. Conclusions: Caring for CMC frequently impacts employment and careers of caregivers and spouses. Employed and non-employed caregivers invest substantial time in care. Research on CMC should include indirect costs of family care in terms of employment, income, and time.
