Intervention Codesign in the Pediatric Cardiac Intensive Care Unit to Improve Family Meetings.

CONTEXT: Family meetings are encouraged in the pediatric cardiac intensive care unit (CICU) with the expectation of supporting parental shared decision-making (SDM). However, they often fall short of this goal. Additionally, interprofessional team and family meetings are dominated by input from physicians, under-utilizing the skillset of the full clinical team. OBJECTIVES: 1) To determine feasibility of a codesign process to optimize the preparation of the interprofessional team and parents for conducting SDM-oriented family meetings in the CICU, and 2) to describe the resulting elements of the intervention including new support documents for the team and family to prepare for the meeting, team member roles in the meeting, and optimization of communication skills. METHODS: Experience-based codesign was used with CICU clinicians and parents of children hospitalized in the CICU to develop an intervention at a single institution. Sessions were audio recorded and transcribed and analyzed using modified grounded theory. Participants were surveyed about their engagement in the codesign process to assess feasibility. RESULTS: Fifteen professionals and six parents enrolled in the codesign and endorsed engagement in the process and importance of the intervention elements. Participants identified the benefit of complementary parent and team preparation for family meetings noting five distinct types of meetings that occurred frequently. Documents, processes, and skills training were developed to improve interprofessional teamwork regarding shared decision making and support of parents in family meetings. CONCLUSION: A codesign of an intervention with clinicians and parents in the CICU is a feasible and resulted in an intervention with broad support among clinicians in the CICU.

Human milk and breastfeeding outcomes in infants with congenital heart disease.

BACKGROUND: Although human milk (HM) is the recommended form of infant nutrition, the provision of HM feeding among infants with congenital heart disease in the cardiac intensive care unit is unknown. Therefore the aim of the study was to understand the prevalence of pumping initiation, HM feeding, and breastfeeding patterns of mothers and their infants born with congenital heart disease. SUBJECTS AND METHODS: This was a prospective cohort study conducted a large children's hospital with a cardiac referral program and unit. All women with infants with congenital heart disease were approached for enrollment in order to document HM prevalence. RESULTS: The majority of women (89%) initiated lactation via pumping for their infants. On average, mothers pumped five to six times per day, and mothers were able to achieve a milk supply of over 500 mL/day. Once infants received enteral feeds, over 70% of the infant diet was HM. Very few (13%) infants fed via direct breastfeedings; rather, they received HM via gavage or bottle. There was a significant difference in pumping initiation based on where the infant was born, with mothers delivering in the hospital having a significantly higher pumping initiation rate (96% born in this hospital, 67% born in an outside hospital). CONCLUSIONS: Mothers who have infants diagnosed with congenital heart disease should be encouraged to initiate pumping for their infants. Future research is warranted regarding the dose response of HM and specific health outcomes and the need for postdischarge services for these families.

Challenges at the Bedside With ECMO and VAD.

Patients on circulatory support can be the source of multiple challenges including optimizing the circuit for specific congenital heart lesions, troubleshooting circuit failures, transporting patients on the circuit, anticoagulation and bleeding, transitioning to more mobile ventricular assist device, listing for thoracic organ transplantation, weaning from the circuit, and educating the patient and family about mechanical support. These challenges ideally require a specialized multidisciplinary team, which includes anesthesiologists, child life specialists, extracorporeal membrane oxygenation (ECMO) specialists, intensivists, nurses, nutritionists, perfusionists, pharmacists, respiratory therapists, social workers, and surgeons.