The awareness of treatment plans of craniosynostosis: guideline for patient and family version

Functional and structural complexities associated with craniosynostosis present challenges for families of affected individuals. Additionally, these patients undergo childhood surgeries that significantly impact the role of the family/caregiver. Consequently, multiple therapeutic teams have provided various guidelines, with the most recent version in 2023 introducing the patient/family guide. The objective of this study was to evaluate the level of awareness among the patient’s family/caregiver regarding the treatment plan.

The descriptive-analytical study sample consisted of 117 caregivers (parents) of children diagnosed with craniosynostosis between 2013 and 2023, who were conveniently selected for participation. The self-designed questionnaire was based on the 2023 guidelines and underwent reliability and validity testing. It comprised 14 chapters derived from the literature, with a total of 55 yes/no questions.

Based on the results obtained from this study, the total correct response rate is 62.3%. The highest level of respondent awareness was associated with Chapter 12, with a correct response rate of 69%. The lowest level of awareness, at 41.8%, was related to Chapter 10.

It is better to use appropriate educational aids such as educational podcasts based on the latest guidelines for craniosynostosis to educate parents.