Parent experiences and developmental outcomes following neonatal stroke.

OBJECTIVE: Parents of children with neonatal stroke offer critical insight into potential avenues to direct neuropsychological care from the time of diagnosis through the early years. The aims of this study were to (1) describe what parents remember about early prognostic discussions with the medical team and (2) to examine the relationships between initial prognoses and the child's current neurodevelopmental status and parents' mental health. Method: Thirty parents of children with neonatal stroke completed the Depression Anxiety Stress Scales (DASS) and Parent Experiences Questionnaire (PEQ). The children of these parents were also seen for neurodevelopmental/neuropsychological assessments. Results: Parents recalled discussions with the medical team about motor, language, cognitive, and academic outcomes, with fewer discussions about the impact of neonatal stroke on their child's social skills, behavior, attention, mental health, and adaptive functioning. Many parents recalled poor initial prognoses following their child's diagnosis, with better than expected outcomes 3 years later. Parent self-reported depression, anxiety, and stress were associated with higher ratings of externalizing symptoms in their child. There were no significant correlations between parent mental health and their perception of their child's internalizing symptoms, neurodevelopmental functioning, or any of the child's medical/demographic factors. Conclusions: This study highlights the role of the neuropsychologist in the child's care in educating families and monitoring outcomes, emphasizes mental health support for parents of children with a history of neonatal stroke, and reiterates how environmental factors outside of the neonatal stroke itself can impact the child's functioning.