The impact of leukodystrophies on parents' lives.

IF 2.1 3区心理学 Q2 PSYCHOLOGY, DEVELOPMENTAL

Journal of Pediatric Psychology Pub Date : 2025-08-25 DOI:10.1093/jpepsy/jsaf072

Laura Zampini, Laura Cordolcini, Lara Draghi, Paola Zanchi, Ylenia Vaia, Eleonora Bonaventura, Davide Tonduti

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引用次数: 0

Abstract

Objective: Leukodystrophies are a group of genetically determined neurological disorders affecting the white matter of the central nervous system and they have a profound impact on the daily lives of patients and their caregivers. However, only a few studies have analyzed the psychological experiences of parents of children with these conditions. The main aims of the present study were to assess parental burden and parenting stress in caregivers and to evaluate the relationships between parents' experiences and the perceived clinical characteristics of their children.

Methods: Forty-one parents of children and young adults diagnosed with leukodystrophies completed an online survey specifically designed to assess: the characteristics of parents and their children (i.e., current abilities, perceived severity level, and possible regression) and the psychological experiences of parents (i.e., caregiver burden, parenting stress, and perceived social support).

Results: A significant proportion of parents who participated in the study were at risk of experiencing caregiver burden (63%) or parenting stress (49%). Regression analysis showed that perceived social support and the degree of regression (i.e., loss of competence) manifested by the children and young adults emerged as significant factors in determining caregiver burden. However, neither the severity of the child's condition nor the age of the child/young adult appeared to be a determining factor in predicting parental burden or parenting stress.

Conclusions: This study highlights the importance of considering parental well-being in both research and clinical practice, particularly for parents of children with progressive conditions.

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白质营养不良对父母生活的影响。

目的：脑白质营养不良是一组遗传决定的影响中枢神经系统白质的神经系统疾病，对患者及其护理人员的日常生活产生深远影响。然而，只有少数研究分析了患有这些疾病的儿童的父母的心理体验。本研究的主要目的是评估照顾者的父母负担和父母压力，并评估父母的经历与其子女的感知临床特征之间的关系。方法：41位被诊断患有脑白质营养不良的儿童和年轻人的父母完成了一项专门设计的在线调查，以评估父母及其孩子的特征（即当前能力、感知严重程度和可能的退化）和父母的心理体验（即照顾者负担、养育压力和感知社会支持）。结果：参与研究的父母中有很大一部分面临照顾者负担（63%）或养育压力（49%）的风险。回归分析显示，感知社会支持和儿童和青年表现出的退化程度（即能力丧失）是决定照顾者负担的重要因素。然而，儿童病情的严重程度和儿童/年轻人的年龄似乎都不是预测父母负担或父母压力的决定性因素。结论：这项研究强调了在研究和临床实践中考虑父母健康的重要性，特别是对于患有进行性疾病的儿童的父母。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Pediatric Psychology PSYCHOLOGY, DEVELOPMENTAL-

CiteScore

6.00

自引率

11.10%

发文量

期刊介绍： The Journal of Pediatric Psychology is the official journal of the Society of Pediatric Psychology, Division 54 of the American Psychological Association. The Journal of Pediatric Psychology publishes articles related to theory, research, and professional practice in pediatric psychology. Pediatric psychology is an integrated field of science and practice in which the principles of psychology are applied within the context of pediatric health. The field aims to promote the health and development of children, adolescents, and their families through use of evidence-based methods.