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

Khan, Umme, Watson, Rose, Pearse, Janice Elizabeth, Irwin, Louise, Rapley, Tim and Basu, Anna Purna (2022) Grappling with uncertainty – Experiences of parents of infants following perinatal stroke. Research in Developmental Disabilities, 124. p. 104201. ISSN 0891-4222

Grappling with uncertainty Khan 2022 RDD Submitted Version R1.pdf - Accepted Version
Available under License Creative Commons Attribution Non-commercial No Derivatives 4.0.

Download (504kB) | Preview
Official URL:


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.

Item Type: Article
Additional Information: Funding Information: We would like to thank all the participants for the open and honest sharing of their experiences. Funding: National Institute for Health Research (Career Development Fellowship to APB). Tim Rapley is funded by the National Institute of Health Research (NIHR) Applied Research Collaboration (ARC) North East and North Cumbria (NENC)
Uncontrolled Keywords: Communication, Diagnosis, Infant, Parent, Perinatal stroke, Psychological wellbeing, Uncertainty, Unilateral cerebral palsy
Subjects: B100 Anatomy, Physiology and Pathology
C800 Psychology
L500 Social Work
Department: Faculties > Health and Life Sciences > Social Work, Education and Community Wellbeing
Depositing User: Rachel Branson
Date Deposited: 10 Mar 2022 09:19
Last Modified: 25 Feb 2023 08:00

Actions (login required)

View Item View Item


Downloads per month over past year

View more statistics