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收养唇腭裂患儿:一项关于父母经历的研究。

Adopting a child with cleft lip and palate: a study of parents' experiences.

作者信息

Hansson Emma, Ostman Jenny, Becker Magnus

机构信息

Department of Clinical Sciences in Malmö, Lund University, Plastic and Reconstructive Surgery, Skåne University Hospital, Malmö, Sweden.

出版信息

J Plast Surg Hand Surg. 2013 Feb;47(1):30-5. doi: 10.3109/2000656X.2012.736866. Epub 2012 Dec 7.

Abstract

Adoption of Chinese children with cleft lip and palate (CLP) has become increasingly more common in Sweden. The aim of this study was to examine parents' experience when adopting a child with CLP. Since 2008, 34 adopted children with CLP have been treated in our department. A questionnaire was sent to 33 of the families and 30 of them answered (91%). The parents had queued from 1 month to 8 years before they were offered a child. Eighteen families reported that they received information on CLP from the adoption agency and 87% contacted the department of plastic surgery for additional information. In 15 cases (45%) previously unknown medical conditions or birth defects other than CLP were discovered in Sweden. Most parents (67%) had been informed before the adoption that their child could be a carrier of resistant bacteria, but not all had received enough information to grasp what it implies to be a carrier. The great majority of the families did not feel that the early hospitalisation for the first operation had a negative impact on the attachment between them and their adopted child. They thought that the aesthetic and functional results of the operations were "better than expected". Seventeen families stated that people react to the cleft and four of them think that the reactions are a problem. Presumptive adoptive parents should be informed that the child might have unsuspected medical conditions, resistant bacteria, what carriage implies, and that needed treatment and long-term results are not predictable.

摘要

在瑞典,领养患有唇腭裂(CLP)的中国儿童变得越来越普遍。本研究的目的是调查领养唇腭裂儿童的父母的经历。自2008年以来,我们科室共治疗了34名领养的唇腭裂儿童。向其中33个家庭发放了问卷,30个家庭进行了回复(回复率91%)。这些父母在获得领养孩子的机会之前,排队时间从1个月到8年不等。18个家庭报告说他们从领养机构获得了有关唇腭裂的信息,87%的家庭联系了整形外科科室以获取更多信息。在15例(45%)中,在瑞典发现了除唇腭裂之外先前未知的医疗状况或出生缺陷。大多数父母(67%)在领养前被告知他们的孩子可能是耐药菌携带者,但并非所有人都获得了足够的信息来理解作为携带者意味着什么。绝大多数家庭并不认为首次手术的早期住院对他们与领养孩子之间的依恋关系有负面影响。他们认为手术的美学和功能效果“比预期更好”。17个家庭表示人们会对唇腭裂做出反应,其中4个家庭认为这些反应是个问题。应该告知准养父母,孩子可能有未被怀疑的医疗状况、耐药菌,携带者意味着什么,以及所需的治疗和长期结果是不可预测的。

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