Maternal time and the care of disabled children

Caring for disabled children has become increasingly the responsibility of parents, even when the medical care is complex. To assess the time commitment required, 133 mothers of disabled children were asked to estimate by specific task categories the extra time required to care for the children. Total average daily care time was reported at 12 hours and 6 minutes, with 6 hours and 30 minutes consumed in "vigilant" tasks (i.e., watching a child who cannot be left alone and/or providing emotional support). Multiple regression analysis showed an increase in total caregiving hours associated with a younger child who was more physically and mentally impaired, and who required more medical treatments. The amount of time required by parents to care for their chronically ill children of necessity results in lost opportunities. Because this burden is experienced primarily by women and because professional nurses could alleviate some of the burden, this issue deserves further study.