肌萎缩侧索硬化症患者的子女所受影响：一项病例对照研究。
Impact on children of a parent with ALS: a case-control study.
作者信息
Calvo Vincenzo, Bianco Francesca, Benelli Enrico, Sambin Marco, Monsurrò Maria R, Femiano Cinzia, Querin Giorgia, Sorarù Gianni, Palmieri Arianna
机构信息
Department of Philosophy, Sociology, Pedagogy and Applied Psychology, University of Padova Padova, Italy.
Department of Medical, Surgical, Neurological, Metabolic and Aging Sciences, Second University of Naples Naples, Italy.
出版信息
Front Psychol. 2015 Mar 17;6:288. doi: 10.3389/fpsyg.2015.00288. eCollection 2015.
BACKGROUND
Numerous studies have explored how patients and their caregivers cope with amyotrophic lateral sclerosis (ALS), but the literature completely lacks research on the psychological impact of the disease on patients' children. The aim of our study was to investigate the emotional and psychological impact of a parent with ALS on school-age children and adolescents in terms of problem behavior, adjustment, and personality characteristics.
METHODS
The study involved 23 children (mean age = 10.62 years, six females) with a parent suffering from ALS, and both their parents. Children were matched for age, gender, and birth-order with a control group of children with healthy parents. They were administered the Youth Self Report (YSR) questionnaire and the Rorschach Comprehensive System, and their healthy parent completed the Child Behavior Checklist (CBCL).
RESULTS
Findings clearly showed that, compared with controls, children with a parent who had ALS had several clinically significant adverse emotional and behavioral consequences, with emotional and behavioral problems, internalizing problems, anxiety and depressive symptoms. Children of a parent with ALS scored higher than controls for the Total Problems, Internalizing Problems, Anxious/Depressed and Withdrawn/Depressed scales in the YSR. A relevant percentage of children fell within the clinical range (42.9%) and borderline range (28.6%) for Internalizing Problems. The Rorschach CS confirmed the substantial impact of ALS in a parent on their offspring in terms of internalizing behavior and depression, with adjustment difficulties, psychological pain, and thought problems.
CONCLUSION
Our findings indicate that school-aged children and adolescents with a parent who has ALS are vulnerable and carry a substantially higher risk of internalizing behavior, depressive symptoms, and reactive problems than children with healthy parents. Families affected may need support to cope with such an overwhelming disease.
背景
众多研究探讨了患者及其照料者如何应对肌萎缩侧索硬化症（ALS），但文献中完全缺乏关于该疾病对患者子女心理影响的研究。我们研究的目的是从问题行为、适应情况和人格特征方面，调查患ALS的父母对学龄儿童和青少年的情绪及心理影响。
方法
该研究纳入了23名父母患有ALS的儿童（平均年龄 = 10.62岁，6名女性）及其父母双方。将这些儿童与父母健康的对照组儿童在年龄、性别和出生顺序上进行匹配。对他们进行了青少年自我报告（YSR）问卷和罗夏综合系统测试，他们的健康父母完成了儿童行为检查表（CBCL）。
结果
研究结果清楚地表明，与对照组相比，父母患有ALS的儿童有若干临床上显著的不良情绪和行为后果，包括情绪和行为问题、内化问题、焦虑和抑郁症状。父母患有ALS的儿童在YSR的总问题、内化问题、焦虑/抑郁和退缩/抑郁量表上的得分高于对照组。相当比例的儿童在内化问题方面处于临床范围（42.9%）和临界范围（28.6%）。罗夏综合系统证实，父母患ALS对其子女的内化行为和抑郁有重大影响，表现为适应困难、心理痛苦和思维问题。
结论
我们的研究结果表明，父母患有ALS的学龄儿童和青少年比父母健康的儿童更容易受到伤害，内化行为、抑郁症状和反应性问题的风险要高得多。受影响的家庭可能需要支持来应对这种极具挑战性的疾病。
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