Grappling with uncertainty – Experiences of parents of infants following perinatal stroke

Background: The term perinatal stroke describes focal damage to the developing brain due to cerebrovascular disease and occurring either before or shortly after birth. Aetiology, presentation and evolution differ from stroke in adults. Aims: We aimed to explore early parental experiences related to having a child with perinatal stroke, including how parental psychological wellbeing had been impacted, to consider how support for families could be improved. Methods and procedures: We undertook a qualitative research study, using in-depth interviews of parents of infants with perinatal stroke when the infants were 5–6 months corrected gestational age. Sixteen parents (11 female, 5 male) of 11 infants with perinatal stroke took part. Thematic analysis was used in data interpretation. Outcomes and results: Parents described distress related to the lack of information regarding likely outcome following perinatal stroke, as well as confusion around the term ‘stroke’. Guilt and self-blame were expressed, with increased emotional sensitivity. Seeking information about stroke to reduce uncertainty was a useful strategy for some, but overwhelming for others. Conclusions and implications: The diagnosis of perinatal stroke led to psychological distress in parents. Uncertainty following diagnosis produced significant emotional difficulties. Recommendations for practice include providing timely, paced information and psychological support.