Having to Be the One: Mothers Providing Home Care to Infants With Complex Cardiac Needs

Background Early diagnosis of complex congenital heart disease and advances in surgical interventions have resulted in remarkable improvements in prognoses and hospital survival. Although studies have provided insight into children’s experiences with complex congenital heart disease after hospitalization, few have addressed parents’ experiences providing care for infants with complex congenital heart disease who are discharged home with complex care needs after surgical palliation. Objectives To describe the perceptions and lived experiences of mothers of infants who were discharged from the hospital after surgery for complex congenital heart disease but were then readmitted to the hospital. Methods Data collection and analysis for this pilot study were guided by grounded theory. From February through October 2017, interviews were conducted with 10 mothers about their experiences caring for their infants at home after surgery for complex congenital heart disease. Results Analyses led to development of 1 category, “having to be the one,” which had 3 properties: having no choice but to provide complex care at home, handling unexpected roles, and grappling with the possibility of death. Conclusions The category of “having to be the one” highlighted mothers’ experiences providing medicalized care at home to their infants after complex cardiac surgery while managing other responsibilities, such as employment, busy households, and parenting other school-age children. The role of the caregiver is vital but demanding. Mothers’ caregiving at home may be enhanced by nursing interventions such as routine screening for infant distress plus assessment for alterations in family coping or relational challenges that threaten family function.