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德国食管闭锁患儿及青少年亲子优势与困难评估

Parent-Child Assessment of Strengths and Difficulties of German Children and Adolescents Born With Esophageal Atresia.

作者信息

Witt Stefanie, Dingemann Jens, Dellenmark-Blom Michaela, Quitmann Julia

机构信息

Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.

Center of Pediatric Surgery, Hannover Medical School and Bult Children's Hospital, Hannover, Germany.

出版信息

Front Pediatr. 2021 Sep 17;9:723410. doi: 10.3389/fped.2021.723410. eCollection 2021.

Abstract

Children and adolescents with a chronic somatic disease have a higher risk of developing psychological disorders than healthy peers. Therefore, we aim to investigate internalizing and behavioral problems in pediatric patients with esophageal atresia (EA) and compare this sample with German reference values using both childrens' self-reports and parents' proxy reports. The present cross-sectional study is part of the German-Swedish EA-QOL study developing a condition-specific instrument to assess Health-related Quality of Life in children and adolescents born with EA from both self and proxy perspectives. The current analyses use data from the German sample collected within the field test phase. Participants were enrolled from the Medical School Hannover and "Auf der Bult" Children's Hospital, Hannover. The cooperating clinicians provided the medical records while socio-demographic information was collected through the parent-report within the questionnaires. We used the to measure internalizing and behavioral problems of children and adolescents born with EA ranging from 2 to 18 years. A total of 51 families participated in the field test phase. Eighty-eight parent reports and 22 child reports were included in the analyses. While the parents' perspective from the SDQ leads to a higher percentage of abnormal or borderline behavior, there is no difference to the reference group from the children's perspective. Incorporating routine psychological assessment into pediatric health care can help improve understanding of the burden of illness, examine treatment outcomes, assess the quality of care, and tailor interventions to meet patient and parent needs. Involving the whole family can help develop appropriate and functional coping strategies. From our point of view, it is necessary to address parental needs and concerns as well in order to provide the best possible holistic development in the family system. The family is the basis for the children's successful development, especially for children with special health care needs.

摘要

患有慢性躯体疾病的儿童和青少年比健康同龄人患心理障碍的风险更高。因此,我们旨在调查食管闭锁(EA)患儿的内化问题和行为问题,并使用儿童自评和家长代理报告将该样本与德国参考值进行比较。本横断面研究是德瑞EA-QOL研究的一部分,该研究正在开发一种针对特定疾病的工具,从自我和代理角度评估患有EA的儿童和青少年的健康相关生活质量。当前分析使用了在现场测试阶段收集的德国样本数据。参与者来自汉诺威医学院和汉诺威“奥夫德布尔”儿童医院。合作的临床医生提供病历,同时通过问卷中的家长报告收集社会人口学信息。我们使用[具体工具名称未给出]来测量2至18岁患有EA的儿童和青少年的内化问题和行为问题。共有51个家庭参与了现场测试阶段。分析纳入了88份家长报告和22份儿童报告。虽然从SDQ家长视角来看,异常或临界行为的比例更高,但从儿童视角来看与参考组没有差异。将常规心理评估纳入儿科医疗保健有助于提高对疾病负担的理解、检查治疗结果、评估护理质量,并根据患者和家长的需求调整干预措施。让整个家庭参与有助于制定适当且有效的应对策略。在我们看来,也有必要关注家长的需求和担忧,以便在家庭系统中提供尽可能好的全面发展。家庭是儿童成功发展的基础,尤其是对于有特殊医疗需求 的儿童。

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State of Play: Eight Decades of Surgery for Esophageal Atresia.进展情况:食管闭锁手术八十年
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