To ascertain the primary caregiver's postdischarge perceptions of infant care issues after neonatal heart surgery.
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.
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.
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.
Caregivers of infants who had neonatal heart surgery worry about feeding problems and weight gain.
Diane M. Hartman is a Clinical Research Nurse, Department of Cardiac Surgery, The Children's Hospital of Philadelphia. She can be reached via e-mail at Hartman@email.chop.edu.
Barbara Medoff-Cooper is the Ruth M. Colket Professor of Pediatric Nursing at the Children's Hospital of Philadelphia and a Professor in the School of Nursing at the University of Pennsylvania.
Funding for this project was provided by the Cardiac Center Development Funds at The Children's Hospital of Philadelphia, the National Institutes of Health RO1 NR 02093, and CTRC funding M01-RR-000240.
The authors have disclosed that there are no financial relationships related to this article.