父母与唇腭裂患儿之间的关系:第一次手术修复前延迟的重要性

B. Grollemund, A. Danion-Grilliat, I. Kauffmann, C. Bruant‐Rodier, W. Bacon
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引用次数: 0

摘要

任何细心的观察者,如果他们的孩子患有唇裂,无论是否与腭裂有关,他们的人际交往的心理背景的重要性以及亲子关系破裂的风险对孩子的发展产生不利影响,都会给他们留下深刻的印象。一个唇裂孩子的出生不可避免地成为父母痛苦、紧张和创伤的事件。在临床研究医院计划(PHRC)的框架内,我们在一项多学科、多群体的前瞻性研究中评估了唇腭裂患者父母在孩子出生后第一年的心理感知。我们的目标是分析孩子的精神痛苦和亲子关系。我们比较了四个医院中心使用不同手术方案获得的结果,区分了从子宫检查中得知缺陷的父母和直到孩子出生才意识到缺陷的父母的亚组。我们为父母分析畸形及其矫正的心理和心理层面,涉及产前诊断的重要性,与孩子关系的发展,自我形象,生活质量,以及关注婴儿的痛苦和最终从中恢复。这项研究的结果应该使卫生保健工作者能够建立新的方法,尽可能地减轻残疾对父母及其子女的心理影响,并改善对这些患者的长期护理。
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Relationships between parents and children with labio-palatal clefts: the importance of a delay preceding the first surgical repair
Any attentive observer of families who have a child afflicted with a cleft lip whether or not associated with a palatal cleft would be certain to be impressed by the importance of the psychological context of their interpersonal exchanges and the risks of a breakdown in the parent-child relationship adversely affecting the child’s development. The birth of a child with a cleft lip inevitably becomes a painfully stressful and traumatic event for its parents. In the framework of the Programme Hospitalier de Recherche Clinique (PHRC) we have evaluated the psychological perceptions of parents of cleft lip and palate patients during the child’s first year of life in a multi-disciplinary and multi-group prospective study. Our goal is to analyze both the child’s psychic suffering and the parent-child relationship. We compared the results obtained in four hospital centers using different surgical protocols, distinguishing between the sub-groups of parents who had learned of the defect from an in utero examination and parents who did not become aware of the cleft until the child was born. We analyze for the parents the psychic and psychological dimensions of the deformity and its correction, touching on the importance of a prenatal diagnosis, the development of a relationship with the child, self-images, and the quality of life as well focusing on the infant’s distress and eventual recovery from it. The results of this study should make it possible for health care workers to construct new ways of attenuating, insofar as possible, the psychological impact of the deformity on parents and their children and to improve long term care for these patients.
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