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Recommendations for neonatologists and pediatricians working in first level birthing centers on the first communication of genetic disease and malformation syndrome diagnosis: consensus issued by 6 Italian scientific societies and 4 parents' associations.关于在一级分娩中心工作的新生儿科医生和儿科医生在遗传疾病和畸形综合征诊断的首次沟通方面的建议:6 个意大利科学协会和 4 个家长协会发布的共识。
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Parent-Rated Severity of Illness and Anxiety among Caregivers of Children Born with a Disorder of Sex Development Including Ambiguous Genitalia.父母对患有性发育障碍(包括生殖器模糊)的儿童的严重程度和焦虑的评价。
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Psychological Adjustment of Parents of Children Born with Atypical Genitalia 1 Year after Genitoplasty.儿童外生殖器畸形整形术后 1 年父母的心理调整。
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因性别发育差异导致的非典型生殖器外观与不良生育经历及父母适应相关。

Adverse Birth Experiences and Parent Adjustment Associated With Atypical Genital Appearance Due to Differences of Sex Development.

机构信息

Department of Psychology, Center for Pediatric Psychology, Oklahoma State University, USA.

Department of Urology, University of California San Francisco Medical Center, USA.

出版信息

J Pediatr Psychol. 2023 Sep 20;48(9):759-767. doi: 10.1093/jpepsy/jsad042.

DOI:10.1093/jpepsy/jsad042
PMID:37500595
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10516460/
Abstract

OBJECTIVE

Differences/disorders of sex development (DSDs) are rare, congenital conditions involving discordance between chromosomes, gonads, and phenotypic sex and are often diagnosed in infancy. A key subset of parents of children newly diagnosed with a DSD experience clinically elevated distress. The present study examines the relationship between perinatal factors (i.e., gestational age, delivery method) and trajectories of parental adjustment.

METHODS

Parent participants (mothers = 37; fathers = 27) completed measures at baseline, 6- and 12-month follow-up. Multilevel linear regression controlled for clustering of the data at three levels (i.e., time point, parent, and family) and examined the relationship between perinatal factors and trajectories of depressive and anxious symptoms. Two-way interactions between perinatal factors and parent type were evaluated.

RESULTS

Overall depressive and anxious symptoms decreased over time. There were significant interactions between gestational age and parent type for depressive and anxious symptoms, with younger gestational age having a stronger negative effect on mothers vs. fathers. There was a significant interaction between time and gestational age for depressive symptoms, with 36 weeks' gestational age demonstrating a higher overall trajectory of depressive symptoms across time compared to 38 and 40 weeks. Findings for the delivery method were not significant.

CONCLUSIONS

Findings uniquely demonstrated younger gestational age was associated with increased depressive symptoms, particularly for mothers compared to fathers. Thus, a more premature birth may predispose parents of infants with DSD to distress. Psychosocial providers should contextualize early diagnosis-related discussions within stressful birth experiences when providing support.

摘要

目的

性别发育障碍(DSD)是一种罕见的先天性疾病,涉及染色体、性腺和表型性别之间的不一致,通常在婴儿期诊断。一组关键的 DSD 患儿的父母经历了临床显著的困扰。本研究探讨了围产期因素(即胎龄、分娩方式)与父母适应轨迹之间的关系。

方法

父母参与者(母亲=37;父亲=27)在基线、6 个月和 12 个月时完成了测量。多水平线性回归控制了数据在三个层次(即时间点、父母和家庭)上的聚类,并检查了围产期因素与抑郁和焦虑症状轨迹之间的关系。还评估了围产期因素和父母类型之间的双向交互作用。

结果

总体而言,抑郁和焦虑症状随时间推移而下降。胎龄和父母类型之间存在显著的交互作用,对于抑郁和焦虑症状,胎龄越小对母亲的负面影响越大,而对父亲的影响则越小。胎龄和时间之间存在显著的交互作用,36 周的胎龄在整个时间内表现出更高的抑郁症状轨迹,而 38 周和 40 周的胎龄则较低。分娩方式的结果不显著。

结论

这些发现独特地表明,胎龄越小与抑郁症状增加有关,尤其是对母亲而言。因此,早产儿可能使 DSD 婴儿的父母更容易感到困扰。当提供支持时,心理社会服务提供者应该在与早期诊断相关的讨论中考虑到有压力的分娩经历。