Young children with invasive mechanical ventilation (IMV), the majority of whom are survivors of extreme prematurity, have high rates of neurodevelopmental disabilities. Cohort studies of vulnerable neonates have demonstrated high rates of cerebral palsy and vision and hearing impairment; these disabilities are most often communicated with parents. Other severe neurodevelopmental diagnoses, autism and intellectual disabilities, are highly prevalent, but anecdotally noted to be less frequently discussed with parents of vulnerable infants. Additionally, disorders in speech, feeding, learning, and attention are also common, and often identified throughout early childhood. Particular to the presence of a tracheostomy is the limitation on early speech experiences, which are essential for expressive language development. The objective of this study is to obtain qualitative data on providers' perspectives about their experiences with anticipatory and diagnostic guidance for families of children with IMV. Using key informant interviews with providers: NICU, PICU, community-based therapists, and physicians (primary & subspecialty), we will describe providers' experiences and opinions on the specific habilitative needs and long-term disabilities of children with HMV assistance. The goal of this project will be to analyze interviews of providers for children with iMV. The end products will be conference presentations and manuscripts for publication in peer-reviewed scientific journals.

The objective of this study is to understand providers' perspectives about their experiences with anticipatory and diagnostic guidance for families of children with IMV. Using key informant interviews with providers: NICU, PICU, community-based therapists, and physicians (primary & subspecialty), we will describe providers' experiences and opinions on the specific habilitative needs and long-term disabilities of children with IMV assistance.

Twenty providers were interviewed from diverse disciplines: NICU- and PICU-based therapists, subspecialists and primary care providers who care for children with IMV. The interviews were focused on topics including their overall developmental and disability concerns and experiences with current therapy services and discussing disabilities with families of children with IMV.

Examples of topics covered in the interview guide include: (1) Overall perception of the current status of therapy services for children with IMV; (2) Developmental areas of greatest concern for children with IMV; (3) Current practices regarding disability diagnosis and anticipatory guidance given to families of children with who have survived neonatal illness and require ongoing IMV.

EndNote- reference manager (University of Chicago Library; provided by mentor)

MAXQDA- qualitative analysis (provided by mentor)

University of Chicago Pediatric Research Day

AACPDM - American Academy for Cerebral Palsy and Developmental Medicine

Pediatric Academic Societies Annual Meeting