PDF(Pubmed)
Abstract：
Background: 22q11 Deletion Syndrome (22q11DS) is the most common microdeletion syndrome with broad phenotypic variability, leading to significant morbidity and some mortality. The varied health problems associated with 22q11DS and the evolving phenotype (both medical and developmental/behavioural) across the lifespan can strongly impact the mental health of patients as well as their caregivers. Like caregivers of children with other chronic diseases, caregivers of children with 22q11DS may experience an increased risk of traumatisation and mental health symptoms.Objective: The study\'s primary objective was to assess the frequency of traumatic experiences and mental health symptoms among mothers of children with 22q11DS. The secondary objective was to compare their traumatic experiences to those of mothers of children with other neurodevelopmental disorders (NDDs).Method: A total of 71 mothers of children diagnosed with 22q11DS completed an online survey about their mental health symptoms and traumatic experiences. Descriptive statistics were used to summarise the prevalence of their mental health symptoms and traumatic experiences. Logistic regression models were run to compare the traumatic experiences of mothers of children with 22q11DS to those of 335 mothers of children with other neurodevelopmental disorders (NDDs).Results: Many mothers of children with 22q11DS experienced clinically significant mental health symptoms, including depression (39%), anxiety (25%), and post-traumatic stress disorder (PTSD) symptoms (30%). The types of traumatic events experienced by mothers of children with 22q11DS differed from those of mothers of children with other NDDs as they were more likely to observe their child undergoing a medical procedure, a life-threatening surgery, or have been with their child in the intensive care unit.Conclusion: 22q11DS caregivers are likely to require mental health support and trauma-informed care, tailored to the specific needs of this population as they experience different kinds of traumatic events compared to caregivers of children with other NDDS.
Mothers of children with 22q11DS experience clinically significant levels of depression, anxiety, and PTSD.Mothers of children with 22q11DS experience many and diverse trauma particularly related to medical interventions of their child.The types of traumatic events experienced by mothers of children with 22q11DS are different from those of the mothers of children with other neurodevelopmental disorders.
Mothers of children with 22q11DS experience clinically significant levels of depression, anxiety, and PTSD.Mothers of children with 22q11DS experience many and diverse trauma particularly related to medical interventions of their child.The types of traumatic events experienced by mothers of children with 22q11DS are different from those of the mothers of children with other neurodevelopmental disorders.
摘要：
背景：22q11缺失综合征（22q11DS）是最常见的微缺失综合征，具有广泛的表型变异性，导致显著的发病率和一些死亡率。与22q11DS相关的各种健康问题以及整个生命周期中不断发展的表型（医学和发育/行为）可能会强烈影响患者及其护理人员的心理健康。像其他慢性病儿童的看护人一样，22q11DS儿童的照顾者可能会经历创伤和心理健康症状的风险增加.目的：该研究的主要目的是评估22q11DS儿童母亲的创伤经历和心理健康症状的频率。次要目标是将他们的创伤经历与患有其他神经发育障碍（NDD）的儿童的母亲的创伤经历进行比较。方法：共有71名被诊断为22q11DS的儿童母亲完成了有关其心理健康症状和创伤经历的在线调查。描述性统计数据用于总结其心理健康症状和创伤经历的患病率。使用Logistic回归模型来比较22q11DS儿童母亲与335名其他神经发育障碍（NDD）儿童母亲的创伤经历。结果：许多22q11DS儿童的母亲经历了临床上明显的心理健康症状，包括抑郁症（39%），焦虑（25%），和创伤后应激障碍（PTSD）症状（30％）。患有22q11DS的儿童的母亲所经历的创伤事件类型与患有其他NDD的儿童的母亲所经历的创伤事件类型不同，因为他们更有可能观察到他们的孩子正在接受医疗程序，危及生命的手术,或者和他们的孩子一起住在重症监护室.结论：22q11DS护理人员可能需要心理健康支持和创伤知情护理，与其他NDDS儿童的照顾者相比，他们经历了不同类型的创伤事件，因此适合该人群的特定需求。
22q11DS儿童的母亲经历了临床上显著的抑郁水平，焦虑,PTSD患有22q11DS的儿童的母亲经历了许多不同的创伤，特别是与孩子的医疗干预有关。22q11DS儿童的母亲所经历的创伤事件类型不同于其他神经发育障碍儿童的母亲。
22q11DS儿童的母亲经历了临床上显著的抑郁水平，焦虑,PTSD患有22q11DS的儿童的母亲经历了许多不同的创伤，特别是与孩子的医疗干预有关。22q11DS儿童的母亲所经历的创伤事件类型不同于其他神经发育障碍儿童的母亲。
