Lastrucci Elisa, Daniotti Marta, Procopio Elena, Scaturro Giusi, Tubili Flavia, Martin Rosanna, la Marca Giancarlo
Department of Experimental and Clinical Biomedical Sciences, University of Florence, 50019 Florence, Italy.
Metabolic Diseases Unit, Neuroscience Department, Meyer Children's Hospital IRCCS, 50139 Florence, Italy.
Int J Neonatal Screen. 2023 Jul 14;9(3):38. doi: 10.3390/ijns9030038.
The assumption of this study is strictly connected to the need to focus and to know more about the impact on the psychological state of the parents whose newborn babies get a positive result at Expanded Newborn Screening (ENS). As clinical experience shows us, this aspect seems to have a potentially lasting resonance on the way the disease will be managed and handled in the family, leading to potential negative effects and repercussions on the child's wellbeing and on the quality of life within the family. On the basis of this and on the evidence emerging from a review of the literature, this study aims to investigate and objectify possible distress indicators elicited at the moment of the communication of a positive result at ENS. Questionnaires containing the Beck Depression Inventory-II, the State-Trait Anxiety Inventory-Y, and the Short Form 36 Health Survey tests were administered to the parents of 87 newborns who received positive results at ENS. The parents of 32 babies expressed the presence of discomfort potentially related to the communication of a positive result at ENS.
本研究的假设与聚焦并深入了解新生儿在扩大新生儿筛查（ENS）中结果呈阳性对其父母心理状态的影响这一需求紧密相关。正如临床经验所示，这方面似乎会对家庭中疾病的管理和处理方式产生潜在的长期影响，进而对孩子的幸福以及家庭生活质量产生潜在的负面影响和后果。基于此以及文献综述中出现的证据，本研究旨在调查并客观确定在告知新生儿筛查结果呈阳性时可能引发的痛苦指标。对87名在ENS中结果呈阳性的新生儿的父母进行了包含贝克抑郁量表第二版、状态-特质焦虑量表-Y以及简明健康调查36项测试的问卷调查。32名婴儿的父母表示存在可能与告知ENS结果呈阳性相关的不适。
