患有 XYY 综合征的儿童和青少年的父母对诊断的反应和父母的担忧。

IF 1.8 4区 医学 Q2 PEDIATRICS Child Care Health and Development Pub Date : 2024-08-26 DOI:10.1111/cch.13324
Laura Zampini, Paola Zanchi, Gaia Silibello, Domenica Mastromattei, Paola Francesca Ajmone, Francesca Dall'Ara, Federico Monti, Maria Antonella Costantino, Paola Giovanna Vizziello
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引用次数: 0

摘要

背景:人们越来越关注探讨父母对早期诊断的益处的看法以及对性染色体三体症的认识。然而,只有少数研究特别关注 XYY 综合征患儿父母的经历。本研究旨在评估 XYY 患儿家长对其子女病情严重程度的看法、他们对披露过程的满意度以及他们对子女目前和未来病情的担忧:这项研究在意大利全国范围内进行了在线抽样调查,共有 56 名被诊断患有 XYY 综合征的儿童和青少年的家长参加。他们填写了一份专门制作的在线调查表,该调查表评估了他们对子女的关注领域、他们在披露过程中的经历以及他们对子女病情的担忧:结果:70%的家长接受了产前诊断,30%接受了产后诊断。家长对子女病情的报告存在很大的个体差异。最常见的问题是注意力调节、情绪控制和行为控制。产后确诊患儿的情况更为严重。家长普遍对披露过程不满意,产前和产后披露过程没有差异。不过,在接受产前信息披露的父母中,有 50%以上的人表示他们孩子的病情没有他们预想的那么严重。相比之下,只有 11% 的接受产后信息披露的父母报告了这种情况。家长的担忧与对信息披露过程的总体满意度和当前状况与预期状况之间的对应关系呈负相关,但与孩子的严重程度呈正相关:结果表明,在产前和产后的沟通中,都需要在向父母披露信息的过程中提供清晰、真实的信息,这样可以减轻父母的担忧。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

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Reaction to Diagnosis and Parental Concerns in Parents of Children and Young Adults With XYY Syndrome

Background

There is a growing interest in exploring parents' views on the benefits of early diagnosis and awareness of sex chromosome trisomies. However, only a few studies focus specifically on the experience of parents of children with XYY syndrome. The present study aimed to assess, in parents of individuals with XYY, the perceived severity of their children's condition, their level of satisfaction with the disclosure process and their concerns about their children's present and future condition.

Methods

A national online sample of 56 Italian parents of children and young adults diagnosed with XYY syndrome participated in the study. They filled out a specifically developed online survey that assessed their children's areas of concern, their experience with the disclosure process and their worries about their children's condition.

Results

Seventy per cent of the parents received a prenatal diagnosis, whereas 30% received a postnatal diagnosis. High individual variability was found in the parent report of their child's condition. The most frequent areas of concern were attention regulation, emotion control and behaviour control. Individuals with a postnatal diagnosis showed more severe profiles. Parents were generally dissatisfied with the disclosure process, with no differences between prenatal and postnatal disclosure. However, more than 50% of the parents who received a prenatal disclosure reported that their child's condition was less severe than they had expected. In contrast, only 11% of the parents with postnatal disclosure reported this situation. Parents' concerns were negatively related to global satisfaction with the disclosure process and the correspondence between current and expected conditions but positively associated with the child's severity level.

Conclusions

The results suggest that clear and realistic information during the disclosure process to parents is needed in both prenatal and postnatal communication and may alleviate parents' concerns.

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来源期刊
CiteScore
3.40
自引率
5.30%
发文量
136
审稿时长
4-8 weeks
期刊介绍: Child: care, health and development is an international, peer-reviewed journal which publishes papers dealing with all aspects of the health and development of children and young people. We aim to attract quantitative and qualitative research papers relevant to people from all disciplines working in child health. We welcome studies which examine the effects of social and environmental factors on health and development as well as those dealing with clinical issues, the organization of services and health policy. We particularly encourage the submission of studies related to those who are disadvantaged by physical, developmental, emotional and social problems. The journal also aims to collate important research findings and to provide a forum for discussion of global child health issues.
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