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超越诊断:对神经发育障碍和青少年特发性关节炎相关性葡萄膜炎患儿及家长影响的初步研究

Beyond Diagnosis: Preliminary Study of Impact on Children and Parents in Neurodevelopmental Disorders and Juvenile Idiopathic Arthritis-Associated Uveitis.

作者信息

Palmieri Roberta, Albano Valeria, Guerriero Silvana, Craig Francesco, La Torre Francesco, Filoni Serena, Sardella Dario, Petruzzelli Maria Giuseppina, Lecce Paola, De Giacomo Andrea

机构信息

Translational Biomedicine and Neuroscience Department (DiBraiN), University of Bari "Aldo Moro", 70124 Bari, Italy.

Department of Basic Medical Sciences, Neurosciences and Sense Organs, Institute of Ophthalmology, University of Bari, Piazza Giulio Cesare 11, 70124 Bari, Italy.

出版信息

Diagnostics (Basel). 2024 Jan 26;14(3):275. doi: 10.3390/diagnostics14030275.

Abstract

Chronic diseases are a growing problem for global health due to the large number of people they involve, the repercussions they have on the mental and physical well-being of those affected, and the costs to society. Particularly, chronic illnesses of childhood have important psychological implications, not only for affected children but also for their parents. Among these pathologies, neurodevelopmental disorders (NDDs) and uveitis associated with juvenile idiopathic arthritis (JIA-U) may affect mental and physical health, emotions, memory, learning, and socializing. This study evaluates the psychological and behavioral/emotional impact of NDDs and JIA-U on children and parents. Specifically, 30 children with active JIA-U and 30 children with NDDs and their parents completed the Child Behavior Checklist (CBCL) and Parent Stress Index-Short Form (PSI) questionnaires. Children with NDDs have statistically significant differences in all the emotional and behavioral variables compared to JIA-U children, and parents of children with NDDs experience an increased stress load compared to parents of children with JIA-U. This study emphasizes the wide range of emotional and behavioral challenges that parents face with NDDs. This study emphasizes that parents of children with NDDs not only experience higher levels of stress compared to parents of normally developing children but also experience higher levels of stress compared to parents of children with potentially debilitating chronic diseases such as JIA-U.

摘要

由于慢性病涉及的人数众多,对患者身心健康产生的影响以及给社会带来的成本,它们已成为全球健康领域日益严重的问题。特别是儿童慢性病具有重要的心理影响,不仅对患病儿童,对其父母也是如此。在这些疾病中,神经发育障碍(NDDs)和与幼年特发性关节炎相关的葡萄膜炎(JIA-U)可能会影响身心健康、情绪、记忆、学习和社交能力。本研究评估了NDDs和JIA-U对儿童及其父母的心理和行为/情绪影响。具体而言,30名患有活动性JIA-U的儿童、30名患有NDDs的儿童及其父母完成了儿童行为检查表(CBCL)和父母压力指数简表(PSI)问卷。与患有JIA-U的儿童相比,患有NDDs的儿童在所有情绪和行为变量上均存在统计学上的显著差异,并且患有NDDs儿童的父母比患有JIA-U儿童的父母承受着更大的压力。本研究强调了父母在面对NDDs时所面临的广泛的情绪和行为挑战。本研究强调,与正常发育儿童的父母相比,患有NDDs儿童的父母不仅承受着更高水平的压力,而且与患有可能导致衰弱的慢性病(如JIA-U)儿童的父母相比,他们承受的压力也更高。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d6d5/10855410/7092bb6203d2/diagnostics-14-00275-g001.jpg

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