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

IF 0.5 Q4 PEDIATRICS Egyptian Pediatric Association Gazette Pub Date : 2024-04-05 DOI:10.1186/s43054-024-00273-3

Bahram Aminmansour, Samaneh Fatehi, Ali Mokhtari, Ali Riazi, Donya Sheibani Tehrani

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Abstract

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.

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了解颅骨发育不良的治疗方案：患者和家属指南

与颅骨发育不良相关的功能和结构复杂性给患者家庭带来了挑战。此外，这些患者在儿童时期接受的手术对家庭/照顾者的角色产生了重大影响。因此，多个治疗团队提供了各种指南，最新版本于 2023 年推出了患者/家属指南。本研究旨在评估患者家属/护理人员对治疗计划的认知程度。这项描述性分析研究的样本包括 117 名在 2013 年至 2023 年期间被诊断为颅骨发育不良患儿的护理人员（家长），他们都是被方便地挑选出来参与研究的。自行设计的问卷以 2023 年指南为基础，并进行了信度和效度测试。问卷包括 14 个章节，均来自文献，共有 55 个 "是/否 "问题。根据研究结果，总正确回答率为 62.3%。受访者对第 12 章的认知度最高，正确回答率为 69%。受访者对第 10 章的认知度最低，为 41.8%。最好使用适当的教育辅助工具，如根据最新的颅骨发育不良指南制作的教育播客来教育家长。

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来源期刊

Egyptian Pediatric Association Gazette PEDIATRICS-

自引率

0.00%

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审稿时长

9 weeks

期刊介绍： The Gazette is the official journal of the Egyptian Pediatric Association. The main purpose of the Gazette is to provide a place for the publication of high-quality papers documenting recent advances and new developments in both pediatrics and pediatric surgery in clinical and experimental settings. An equally important purpose of the Gazette is to publish local and regional issues related to children and child care. The Gazette welcomes original papers, review articles, case reports and short communications as well as short technical reports. Papers submitted to the Gazette are peer-reviewed by a large review board. The Gazette also offers CME quizzes, credits for which can be claimed from either the EPA website or the EPA headquarters. Fields of interest: all aspects of pediatrics, pediatric surgery, child health and child care. The Gazette complies with the Uniform Requirements for Manuscripts submitted to biomedical journals as recommended by the International Committee of Medical Journal Editors (ICMJE).