Perceived severity and parental distress after positive expanded newborn screening: parent-clinician concordance and...

Receiving a positive expanded newborn screening result is highly stressful for parents. This study aimed to examine parent-clinician concordance in perceived severity, to investigate its association with parental emotional distress at baseline and six months after communication, and to explore the interdependence between perceived severity and perceived control within parental dyads. A total of. 171 mothers and 168 fathers reported parental distress and completed the Impact of Event Scale-Revised and the Emotion Thermometers. Perceived severity and control were measured using single-item Likert scales reflecting subjective appraisals at the time of disclosure. For 147 parents (74 mothers and 73 fathers), a clinician-rated severity score was available. An Actor-Partner Interdependence Model with indistinguishable dyads was applied to 115 parental couples. Most parents (61.9%) rated their child's condition as more severe than the clinician. At baseline, higher parental severity ratings relative to clinicians were associated with higher distress and post-traumatic symptoms. No differences were observed at 6 months. Higher perceived severity in one parent was associated with lower perceived control in the partner (β = - 0.207, p = .004).

Differences between parental and clinician perceptions of severity are common following positive ENBS communication and are associated with elevated early parental distress. Psychosocial support may benefit from adopting a dyadic perspective, acknowledging that each parent's appraisal of the situation can shape the partner's adjustment.

• Receiving communication of positivity at the ENBS can be highly stressful for parents. • Parents' perceptions of disease severity play an important role in their psychological adjustment.

• Parent-clinician misalignment in perceived severity is frequent after positive ENBS communication and is associated with higher early parental distress. • Parental perceptions of severity and control show significant dyadic interdependence within couples, high lighting parental adjustment as a relational process.