A Mixed Methods Analysis of Parental Perspectives on Diagnosis and Prognosis of Neonatal Intensive Care Unit Graduates With Cerebral Palsy

Katherine Guttmann, John Flibotte, Sara B. DeMauro, Holli Seitz

Research output: Contribution to journalArticlepeer-review

6 Scopus citations

Abstract

This study aimed to evaluate how parents of former neonatal intensive care unit patients with cerebral palsy perceive prognostic discussions following neuroimaging. Parent members of a cerebral palsy support network described memories of prognostic discussions after neuroimaging in the neonatal intensive care unit. We analyzed responses using Linguistic Inquiry and Word Count, manual content analysis, and thematic analysis. In 2015, a total of 463 parents met eligibility criteria and 266 provided free-text responses. Linguistic Inquiry and Word Count analysis showed that responses following neuroimaging contained negative emotion. The most common components identified through the content analysis included outcome, uncertainty, hope/hopelessness, and weakness in communication. Thematic analysis revealed 3 themes: (1) Information, (2) Communication, and (3) Impact. Parents of children with cerebral palsy report weakness in communication relating to prognosis, which persists in parents’ memories. Prospective work to develop interventions to improve communication between parents and providers in the neonatal intensive care unit is necessary.

Original languageEnglish
Pages (from-to)336-343
Number of pages8
JournalJournal of Child Neurology
Volume35
Issue number5
DOIs
StatePublished - 1 Apr 2020

Keywords

  • communication
  • expectations
  • function
  • neonate
  • outcomes

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