Recognition, identification, and diagnosis announcement of neonatal arterial ischemic stroke: A combined exploratory quantitative and qualitative study on parents' lived experiences.

Abstract Objectives To examine the epidemiology of neonatal arterial ischemic stroke (NAIS) and the chronology of care from early reported manifestations to formal diagnosis obtained by imaging. To explore how parents experienced the sequence of events, their own perception of potential diagnostic delay, diagnosis announcement, and prognosis discussion, and their current view of their child's quality of life. Methods We retrospectively analyzed data of all NAIS cases that have been treated in our institution. Quantitative data came from both newborns’ and mothers’ medical records. Qualitative data were collected from parents in semi-structured interviews based on a standardized questionnaire composed of open-ended questions. Results A total of 14 neonates were treated for NAIS in our institution between January 2008 and December 2017. The incidence of NAIS during this period was one out of 4258 births. The majority of neonates presented within 48 hours with a mean of 27 h after birth, most often in the form of repetitive focal clonus (13/14). The mean time before diagnosis consideration and confirmation was 5 and 33 h, respectively. Late consideration of early reported symptoms was identified as the main source of delay. Despite good reported health outcome, NAIS was associated with significant acute and long-standing parental emotional stress. Conclusion Maternity hospital caregivers’ awareness of NAIS is crucial to reach early diagnosis. Improving this aspect would not only allow better early management, but also make it possible to set up acute neuroprotective strategies. Clinicians should be attentive to the modalities of diagnosis and prognosis announcements, which are associated with considerable stress and misconceptions.