Infant Complex Care Program (C5418) - FY25

Abstract Background: Description of the Infant Complex Care Program The Infant Complex Care Program at Kentucky Children’s Hospital provides comprehensive medical and developmental follow-up, coordination of care, and support for parents and other caretakers of infants and young children with medical complexity. Patients are referred to the Infant Complex Care Clinic from the NICU, PICU, PCICU, Pediatric floor and community pediatricians. These infants have had complicated medical courses in the newborn period or later in infancy. Most are dependent on some type of technology (e.g. feeding tube, tracheostomy +/- chronic ventilation, ventriculoperitoneal shunt, ostomy and/or vesicostomy). They require follow-up from multiple specialists and are at high risk for emergency room visits and rehospitalization. The Infant Complex Care team is comprised of a neonatologist, pediatrician, advanced practice provider and a nurse navigator. The program presently shares a team of ancillary staff with the NICU Graduate Clinic. This team is comprised of a social worker (CSW), dietician, as well as a physical, occupational, and speech/feeding therapist. The NICU Graduate Clinic provides follow- up to all NICU graduates who are not medically complex but are still at risk for growth and developmental problems. This includes premature infants less than 32 weeks gestation, critically ill late preterm and full-term infants, infants with genetic syndromes and infants with neonatal abstinence syndrome (NAS). Many of the families of these NICU graduates have complex psychosocial problems requiring time-consuming assistance and support from the clinical social worker on the team. Objective: Need for an LCSW Families of infants with medical complexity have even more social work needs. They may be suffering from preexisting psychosocial and mental health problems which existed before their child’s birth and were exacerbated by the severity of their infant’s medical problems or new problems that developed because of their infant’s prolonged hospitalization and the anticipation of needing to deal with ongoing medical needs after discharge. Often when a parent brings home a medically complex infant, they are forced to stop working to care for their child. They are stressed physically, emotionally, and financially and are often in need of psychosocial support and counseling. The CSW in our clinic does not have the time or the training to provide this time intensive psychosocial support and counseling that many of our parents need to be able to properly care for their child. An LCSW would be able to provide the continuity of care that our families need beginning in the NICU and continuing after discharge.