Department of Psychology/Neuroscience, Dalhousie University, Halifax, Canada.
Maritime Medical Genetics Service, IWK Health Centre, Halifax, Canada.
Eur J Psychotraumatol. 2024;15(1):2353532. doi: 10.1080/20008066.2024.2353532. Epub 2024 May 23.
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. 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). 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). 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. 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.
22q11 缺失综合征（22q11DS）是最常见的微缺失综合征之一，具有广泛的表型变异性，导致严重的发病率和一些死亡率。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（包括医疗和发育/行为）会对患者及其照顾者的心理健康产生重大影响。与照顾其他慢性疾病儿童的照顾者一样，照顾 22q11DS 儿童的照顾者可能面临更高的创伤风险和心理健康症状。该研究的主要目的是评估 22q11DS 儿童的母亲创伤经历和心理健康症状的频率。次要目的是将他们的创伤经历与其他神经发育障碍（NDD）儿童的母亲进行比较。共有 71 名被诊断为 22q11DS 的儿童的母亲完成了一项关于他们心理健康症状和创伤经历的在线调查。描述性统计用于总结他们心理健康症状和创伤经历的流行率。逻辑回归模型用于比较 22q11DS 儿童的母亲与其他 335 名患有其他神经发育障碍（NDD）儿童的母亲的创伤经历。许多 22q11DS 儿童的母亲经历了临床显著的心理健康症状，包括抑郁（39%）、焦虑（25%）和创伤后应激障碍（PTSD）症状（30%）。与其他 NDD 儿童的母亲相比，22q11DS 儿童的母亲经历的创伤事件类型不同，因为他们更有可能观察到自己的孩子接受医疗程序、危及生命的手术，或与孩子一起在重症监护病房。22q11DS 照顾者可能需要心理健康支持和创伤知情护理，根据该人群的特定需求进行定制，因为他们与其他 NDD 儿童的照顾者相比，经历了不同类型的创伤事件。
