Alexandra Finless, Andrea L Rideout, Ting Xiong, Holly Carbyn, Patricia Lingley-Pottie, Lisa D Palmer, Andrea Shugar, Donna M McDonald-McGinn, Patrick J McGrath, Anne S Bassett, Cheryl Cytrynbaum, Matt Orr, Ann Swillen, Sandra Meier
{"title":"22q11DS 患儿母亲的心理健康和创伤经历。","authors":"Alexandra Finless, Andrea L Rideout, Ting Xiong, Holly Carbyn, Patricia Lingley-Pottie, Lisa D Palmer, Andrea Shugar, Donna M McDonald-McGinn, Patrick J McGrath, Anne S Bassett, Cheryl Cytrynbaum, Matt Orr, Ann Swillen, Sandra Meier","doi":"10.1080/20008066.2024.2353532","DOIUrl":null,"url":null,"abstract":"<p><p><b>Background:</b> 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.<b>Objective:</b> 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).<b>Method:</b> 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).<b>Results:</b> 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.<b>Conclusion:</b> 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.</p>","PeriodicalId":12055,"journal":{"name":"European Journal of Psychotraumatology","volume":"15 1","pages":"2353532"},"PeriodicalIF":4.2000,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11123504/pdf/","citationCount":"0","resultStr":"{\"title\":\"The mental health and traumatic experiences of mothers of children with 22q11DS.\",\"authors\":\"Alexandra Finless, Andrea L Rideout, Ting Xiong, Holly Carbyn, Patricia Lingley-Pottie, Lisa D Palmer, Andrea Shugar, Donna M McDonald-McGinn, Patrick J McGrath, Anne S Bassett, Cheryl Cytrynbaum, Matt Orr, Ann Swillen, Sandra Meier\",\"doi\":\"10.1080/20008066.2024.2353532\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p><b>Background:</b> 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.<b>Objective:</b> 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).<b>Method:</b> 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).<b>Results:</b> 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.<b>Conclusion:</b> 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.</p>\",\"PeriodicalId\":12055,\"journal\":{\"name\":\"European Journal of Psychotraumatology\",\"volume\":\"15 1\",\"pages\":\"2353532\"},\"PeriodicalIF\":4.2000,\"publicationDate\":\"2024-01-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11123504/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"European Journal of Psychotraumatology\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1080/20008066.2024.2353532\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2024/5/23 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q1\",\"JCRName\":\"PSYCHIATRY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"European Journal of Psychotraumatology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1080/20008066.2024.2353532","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/5/23 0:00:00","PubModel":"Epub","JCR":"Q1","JCRName":"PSYCHIATRY","Score":null,"Total":0}
The mental health and traumatic experiences of mothers of children with 22q11DS.
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.
期刊介绍：
The European Journal of Psychotraumatology (EJPT) is a peer-reviewed open access interdisciplinary journal owned by the European Society of Traumatic Stress Studies (ESTSS). The European Journal of Psychotraumatology (EJPT) aims to engage scholars, clinicians and researchers in the vital issues of how to understand, prevent and treat the consequences of stress and trauma, including but not limited to, posttraumatic stress disorder (PTSD), depressive disorders, substance abuse, burnout, and neurobiological or physical consequences, using the latest research or clinical experience in these areas. The journal shares ESTSS’ mission to advance and disseminate scientific knowledge about traumatic stress. Papers may address individual events, repeated or chronic (complex) trauma, large scale disasters, or violence. Being open access, the European Journal of Psychotraumatology is also evidence of ESTSS’ stand on free accessibility of research publications to a wider community via the web. The European Journal of Psychotraumatology seeks to attract contributions from academics and practitioners from diverse professional backgrounds, including, but not restricted to, those in mental health, social sciences, and health and welfare services. Contributions from outside Europe are welcome. The journal welcomes original basic and clinical research articles that consolidate and expand the theoretical and professional basis of the field of traumatic stress; Review articles including meta-analyses; short communications presenting new ideas or early-stage promising research; study protocols that describe proposed or ongoing research; case reports examining a single individual or event in a real‑life context; clinical practice papers sharing experience from the clinic; letters to the Editor debating articles already published in the Journal; inaugural Lectures; conference abstracts and book reviews. Both quantitative and qualitative research is welcome.
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