Parental Perceptions of Developmental Care Rounds in a Pediatric Heart Center

Abstract

Infants requiring surgery for congenital heart disease (CHD) are at an increased risk of neurodevelopmental delay. Developmental Care Rounds (DCR) have been implemented widely to support the neurodevelopment of children with CHD while admitted to the hospital. This study aims to describe caregiver perceptions of DCR at a quaternary academic children's heart center. Over 17 months, caregivers were asked to evaluate DCR by responding to Likert scale statements by level of agreement as well as free-form text responses. The Likert scales were analyzed and free-form responses were manually reviewed to identify key themes. Forty-nine families participated in the assessment. One hundred percent of caregivers reported that they "Agree" or "Strongly Agree," to the surveyed questions. These included queries regarding the benefit and utility of DCR. In the qualitative assessment, responses identified themes surrounding feeling more empowered to be active members of the care team, an increased awareness of the importance of regular developmental care during hospitalization, as well as education regarding available resources to promote appropriate developmental care. Some of the specific tools parents reported learning include reading, speaking aloud to children, limiting screen time, and engaging in skin-to-skin contact. This is one of the first descriptions of caregiver perceptions of DCR in pediatric patients with CHD. Our results indicate parental satisfaction with DCR and the identification of specific tools to aid in their children's development. DCR may offer an opportunity to improve neurodevelopmental outcomes in hospitalized children with CHD, which should be a focus of future study.

Keywords: Congenital heart disease; Developmental care rounds; Hospitalization; Infants; Neurodevelopmental outcomes; Parents.