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首页> 外文期刊>BMC Pediatrics >Relational development in children with cleft lip and palate: influence of the waiting period prior to the first surgical intervention and parental psychological perceptions of the abnormality
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Relational development in children with cleft lip and palate: influence of the waiting period prior to the first surgical intervention and parental psychological perceptions of the abnormality

机译：唇left裂患儿的关系发展：第一次手术干预前的等待时间的影响以及父母对异常的心理认知

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Background The birth of a child with a cleft lip, whether or not in association with a cleft palate, is a traumatic event for parents. This prospective, multidisciplinary and multi-centre study aims to explore the perceptions and feelings of parents in the year following the birth of their child, and to analyse parent–child relationships. Four inclusion centres have been selected, differing as to the date of the first surgical intervention, between birth and six months. The aim is to compare results, also distinguishing the subgroups of parents who were given the diagnosis in utero and those who were not. Methods/Design The main hypothesis is that the longer the time-lapse before the first surgical intervention, the more likely are the psychological perceptions of the parents to affect the harmonious development of their child. Parents and children are seen twice, when the child is 4 months (T0) and when the child is one year old (T1). At these two times, the psychological state of the child and his/her relational abilities are assessed by a specially trained professional, and self-administered questionnaires measuring factors liable to affect child–parent relationships are issued to the parents. The Alarme Détresse BéBé score for the child and the Parenting Stress Index score for the parents, measured when the child reaches one year, will be used as the main criteria to compare children with early surgery to children with late surgery, and those where the diagnosis was obtained prior to birth with those receiving it at birth. Discussion The mental and psychological dimensions relating to the abnormality and its correction will be analysed for the parents (the importance of prenatal diagnosis, relational development with the child, self-image, quality of life) and also, for the first time, for the child (distress, withdrawal). In an ethical perspective, the different time lapses until surgery in the different protocols and their effects will be analysed, so as to serve as a reference for improving the quality of information during the waiting period, and the quality of support provided for parents and children by the healthcare team before the first surgical intervention. Trial Registration ClinicalTrials.gov Identifier: NCT00993993.
机译：背景技术唇裂儿童的出生，无论是否伴有left裂，对父母来说都是一种创伤。这项前瞻性，多学科和多中心的研究旨在探讨孩子出生后一年中父母的看法和感受，并分析父母与孩子之间的关系。已经选择了四个收养中心，它们的不同之处在于首次手术的日期在出生到六个月之间。目的是比较结果，并区分在子宫内得到诊断的父母和没有在子宫内得到诊断的父母的亚组。方法/设计主要假设是，第一次外科手术之前的时间越长，父母的心理感知就越有可能影响孩子的和谐发展。当孩子是四个月（T0）和孩子一岁（T1）时，父母和孩子被看两次。在这两次中，由受过专门训练的专业人员评估孩子的心理状态及其关系能力，并向父母发布自我管理的调查问卷，以测量可能影响孩子与父母之间关系的因素。儿童的AlarmeDétresseBéBé得分和父母的育儿压力指数得分（在孩子满一年时测出）将用作比较早期手术的孩子与晚期手术的孩子以及诊断出哪些孩子的主要标准是在出生前获得的，而那些在出生时接受的人。讨论将针对父母分析与异常及其纠正相关的心理和心理维度（产前诊断的重要性，与孩子的关系发展，自我形象，生活质量），并且还将首次针对父母。孩子（遇险，退学）。从伦理的角度出发，将分析不同的手术方案所经历的不同时间，并分析其效果，以便为改善候诊期间的信息质量以及为父母和孩子提供的支持质量提供参考由医疗团队在首次手术干预之前。试用注册ClinicalTrials.gov标识符：NCT00993993。

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