Evaluation of the parents' anxiety levels before and after the diagnosis of their child with a rare genetic disease: the necessity of psychological support.
Evaluation of the parents' anxiety levels before and after the diagnosis of their child with a rare genetic disease: the necessity of psychological support.
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DOI：
10.1186/s13023-021-02046-2
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发表时间：
2021-09-28
影响因子：
3.7
通讯作者：
Yesil G
中科院分区：
文献类型：
--
作者：
Kolemen AB;Akyuz E;Toprak A;Deveci E;Yesil G
罕见遗传病的诊断对于治疗多系统疾病、预防潜在并发症和估计家庭成员的疾病风险具有重要意义。获得基因检测结果的时间长短各不相同。学习诊断一种可能无法治愈的疾病的需求涉及到不确定性和终身慢性疾病之间的斗争。目前对孩子病情的不确定性和等待诊断的漫长时间可能会增加父母的焦虑程度，并在一些家庭中造成继续诊断程序的困难。本研究旨在调查患有罕见遗传病的孩子的父母诊断前和诊断后的焦虑水平。在这项研究中，父母，母亲或父亲，承认他们的孩子Bezmialem Vakıf大学医学遗传学诊所由于怀疑罕见的遗传病（n = 40）。研究人员创建了“社会人口调查问卷”，并用它来分析父母的社会人口状况。此外，他们使用状态-特质焦虑量表（STAI）来确定父母的焦虑水平。父母的状态焦虑水平在得知诊断后显著下降。然而，没有观察到特质焦虑水平的统计学显着下降。这项研究的数据显示，告知父母他们的孩子的疾病，并适当地向他们解释预期的困难可能有助于减少他们的焦虑水平。对父母的心理支持是必要的，以减少他们的长期压力，从而提高病人的治疗依从性。在线版本包含补充材料，可通过10.1186/s13023-021-02046-2获得。
The diagnosis of the rare genetic diseases has great importance in treating multisystemic conditions, preventing potential complications, and estimating disease risk for family members. The duration of obtaining genetic test results is varies. The demand to learn the diagnosis of a possible untreatable illness involves a struggle between uncertainty and a lifetime chronic disease. The current uncertainty of their child's condition and the long wait for a diagnosis may increase the parents' anxiety level and cause difficulties in the continuation of diagnostic procedures in some families. This study aimed to investigate the prediagnosis and postdiagnosis anxiety levels of parents who have a child with a rare genetic disease. The parents in this study, mothers or fathers, admitted their children to the Bezmialem Vakıf University Medical Genetics Clinic due to a suspected rare genetic disease (n = 40). Researchers created “The Sociodemographic Questionnaire” and used it to analyze the parents' sociodemographic status. In addition, they used the State-Trait Anxiety Inventory (STAI) to determine the anxiety levels of the parents. The state anxiety levels of parents decreased significantly after learning the diagnosis. However, there was no statistically significant decrease observed in trait anxiety levels. Data from this study revealed that informing parents about their child's disease and properly explaining to them the expected difficulties might help to reduce their anxiety levels. Psychological support for parents is necessary to reduce their long-term stress, thus increasing the patient's compliance with treatment. The online version contains supplementary material available at 10.1186/s13023-021-02046-2.
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影响因子：
2.6
作者：
Heidenreich T;Noyon A;Worrell M;Menzies R
通讯作者：
Menzies R
影响因子：
1.7
作者：
Beesdo, Katja;Knappe, Susanne;Pine, Daniel S.
通讯作者：
Pine, Daniel S.
影响因子：
2.7
作者：
Andre-Petersson, Lena;Hedblad, Bo;Ostergren, Per-Olof
通讯作者：
Ostergren, Per-Olof
影响因子：
4.8
作者：
Barrera, M.;Atenafu, E.;Hancock, K.
通讯作者：
Hancock, K.
DOI：
10.1590/1413-81232015205.13932014
发表时间：
2015-05-01
期刊：
Ciência & Saúde Coletiva
影响因子：
--
作者：
Lederman, Vivian Renne Gerber;Alves, Bianca dos Santos;Brunoni, Decio
通讯作者：
Brunoni, Decio