Assessing Parents' Perceived Stress, Psychological Distress, and Health-Related Quality of Life Before and One Year After Their Child's Craniosynostosis Surgery.

ObjectiveAssessing parents' perceived stress, psychological distress, and health-related quality of life (HRQoL) before their child's craniosynostosis surgery and one year after.Setting/ParticipantsParents of children with nonsyndromic craniosynostosis, scheduled to undergo surgery at the Uppsala Craniofacial Centre, were invited to participate. Data were collected between May 2016 and February 2025. There were 157 eligible patients; 103 (66%) parents participated, and 29 (28%) provided data at both time points.Main Outcome Measures: Swedish parenting stress questionnaire (SPSQ), Hopkins Symptom Checklist (HSCL-25), EQ VAS.ResultsThe HSCL-25 total score and the subscale depression were rated higher before the surgery than one year after. There were no differences in the SPSQ total score, or EQ VAS scores before and after surgery, but parents rated their feelings of incompetence higher at follow-up. Participants did not report more parental stress on SPSQ subscales than the average population of parents, either before or after surgery. Before surgery, SPSQ subscales incompetence and role restriction were associated with symptoms of depression. After, the association between these subscales remained. Moreover, an association was found between the subscale incompetence and symptoms of anxiety.ConclusionsParents whose children underwent surgery for craniosynostosis did not seem to experience higher levels of parental stress than Swedish parents in general. There were no differences in perceived parental stress and HRQoL before and one year after surgery, while the psychological distress was higher before. A positive association between parental stress and symptoms of depression was seen both before and after surgery.