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囊性纤维化患儿父母压力的调查研究。

An investigation on parenting stress of children with cystic fibrosis.

机构信息

Department of Translational Medical Sciences, University Federico II of Naples, Naples, Italy.

Department of Molecular Medicine and Medical Biotechnology, University Federico II of Naples, Naples, Italy.

出版信息

Ital J Pediatr. 2020 Mar 18;46(1):33. doi: 10.1186/s13052-020-0795-7.

Abstract

BACKGROUND

The management of chronic diseases, particularly in children, requires an integrated physical and psychological approach to both sick children and their family. This is the case of Cystic Fibrosis (CF), a complex genetic chronic disease, where, a comprehensive evaluation of the emotional impact and an effective multidimensional approach are indicated.

AIM

This study investigates on parenting stress in children and adolescents with CF and its determinants related to parents, children and the disease severity.

METHODS

The study involved 34.04% adult males and 65.96% adult females (range 21-55 years) and 47 children with CF, 54.35% males and 45.65% females (range 1-17 years). The data were obtained through a Parenting Stress Index - Short Form (PSI-SF) questionnaire. According to the PSI-SF scoring system, three types of stress were detected: a typical stress pattern (normal), a high stress pattern (increased) and a defensive response, which may be considered as a high stress feature in children which requires monitoring and clinical evaluation.

RESULTS

This study shows a significant presence of stress in females (60.23%), of subject married (84.62%), unemployed (69.23%) and with education level such as "middle School" (61.54%). Concerning children of parents with high stress, it resulted most frequent children with one sibling (53.85%). Finally, by univariate analysis, it resulted a significant positive correlation between parenting stress and disease degree of children. Instead by multivariate analysis, we found that the variables: Number of siblings and Birth order were a significant positive and negative predictor of parenting stress respectively.

CONCLUSION

An increased stress level was detected in less than one third of parents of subjects with CF. These data may be related to the psychological support which is part of the routine management of CF care team. However, as children's features seem to act as a determinant of stress more than parental ones, the parental-child dysfunction should be the target for further integrated interventions.

摘要

背景

慢性病的管理,尤其是儿童慢性病,需要对患病儿童及其家庭采取身体和心理的综合治疗方法。囊性纤维化(CF)就是这样一种复杂的遗传性慢性疾病,需要全面评估其情绪影响,并采取有效的多维治疗方法。

目的

本研究旨在探讨 CF 患儿及其父母的压力源,并分析与父母、患儿和疾病严重程度相关的决定因素。

方法

该研究共纳入 34.04%的男性成年人和 65.96%的女性成年人(年龄 21-55 岁)和 47 名 CF 患儿,其中 54.35%为男性,45.65%为女性(年龄 1-17 岁)。采用父母压力指数-短式量表(PSI-SF)进行问卷调查。根据 PSI-SF 评分系统,检测到三种压力类型:典型压力模式(正常)、高压力模式(增加)和防御反应,后者可能被视为儿童的高压力特征,需要监测和临床评估。

结果

本研究表明,女性(60.23%)、已婚(84.62%)、失业(69.23%)和中学学历(61.54%)的父母压力显著升高。高压力父母的子女中,兄弟姐妹最多的(53.85%)最为常见。最后,通过单变量分析,发现父母压力与子女疾病程度呈显著正相关。而通过多变量分析,我们发现兄弟姐妹数量和出生顺序是父母压力的显著正向和负向预测因素。

结论

不到三分之一的 CF 患儿父母压力水平升高。这些数据可能与 CF 护理团队常规管理中的心理支持有关。然而,由于儿童的特征似乎比父母的特征更能决定压力水平,因此父母-子女功能障碍应成为进一步综合干预的目标。

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