Purpose: To ascertain the primary caregiver's postdischarge perceptions of infant care issues after neonatal heart surgery.
Study Design and Methods: Fifteen primary caregivers of infants who had neonatal heart surgery for complex congenital heart disease (CHD) participated in this study. We conducted two focus groups and four individual phone interviews using a structured interview guide. The topics included parent feeding management, infant caloric intake, parental acceptance of nasogastric tube, infant feeding behaviors, and issues of parenting stress. We audio recorded focus group sessions, made detailed notes and key quotes were recorded verbatim by a certified impartial focus group facilitator.
Results: Feeding problems were present in both infants who were on full oral feeds and infants who were dependent on supplemental feeding tubes. Mothers of infants with feeding problems expressed concern over infant weight gain and caregiver sleep deprivation, which largely contributed to parental stress.
Clinical Implications: In this small study of infants who experienced neonatal surgery for complex CHD, parental stress over feeding and weight gain were identified as important areas to be addressed during hospitalization. Future studies are needed to address increased at-home parental support.