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

Umme Khan1, Rose Watson2, Janice Elizabeth Pearse3

  • 1School of Psychology, Newcastle University, UK.

Research in Developmental Disabilities
|March 1, 2022
PubMed

Insights

Parental experiences with perinatal stroke reveal significant distress due to uncertainty and lack of information. Improved support strategies are needed for families navigating this challenging diagnosis.

Area of Science:

  • Neuroscience
  • Developmental Biology
  • Pediatric Neurology

Background:

  • Perinatal stroke involves focal brain damage from cerebrovascular disease around birth.
  • It presents unique etiologies, clinical features, and progression compared to adult stroke.
  • Understanding early parental experiences is crucial for family-centered care.

Purpose of the Study:

  • To explore early parental experiences of having a child diagnosed with perinatal stroke.
  • To investigate the impact on parental psychological wellbeing.
  • To identify areas for improving support services for affected families.

Main Methods:

  • Qualitative research design utilizing in-depth interviews.
  • Study included 16 parents of 11 infants with perinatal stroke (5-6 months corrected age).
  • Thematic analysis was employed for data interpretation.

Main Results:

  • Parents reported distress stemming from insufficient information on likely outcomes.
  • Confusion surrounding the term 'stroke' and feelings of guilt/self-blame were common.
  • Information seeking was a coping strategy for some, but overwhelming for others.

Conclusions:

  • Perinatal stroke diagnosis significantly impacts parental psychological wellbeing.
  • Uncertainty following diagnosis creates substantial emotional challenges.
  • Timely, paced information delivery and psychological support are recommended interventions.
Abstract

Keywords:
CommunicationDiagnosisInfantParentPerinatal strokePsychological wellbeingUncertaintyUnilateral cerebral palsy

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