家长对患有脊柱裂的青少年家庭中儿童脆弱性的看法：父母痛苦和育儿压力的作用。
Parental Perceptions of Child Vulnerability in Families of Youth With Spina Bifida: the Role of Parental Distress and Parenting Stress.
机构信息
Psychology Department, Loyola University Chicago.
出版信息
J Pediatr Psychol. 2018 Jun 1;43(5):513-524. doi: 10.1093/jpepsy/jsx133.
OBJECTIVE
This longitudinal study aimed to investigate parental distress and parenting stress in relation to parental perception of child vulnerability (PPCV) in youth with spina bifida (SB).
METHODS
Parents of 140 youth with SB (ages 8-15 years at Time 1) were recruited as part of a longitudinal study; data were collected at two time points, spaced 2 years apart. Mothers and fathers completed questionnaires assessing levels of personal distress, parenting stress, and PPCV.
RESULTS
Mothers and fathers reported similar levels of personal distress, parenting stress, and PPCV, but reports of PPCV increased over time. For mothers, both personal distress and parenting stress were significantly associated with PPCV cross-sectionally, but not longitudinally. For fathers, there were significant cross-sectional and longitudinal associations between parenting stress and PPCV. The cross-sectional association between maternal parenting stress and PPCV was moderated by age, with a significant association only for older youth.
CONCLUSIONS
For parents of youth with SB, personal distress, and parenting stress are related to parental perceptions of child vulnerability, and child age may moderate this relationship. Parental personal distress and parenting stress are important targets for future interventions.
目的
本纵向研究旨在探讨父母的困扰和育儿压力与父母对儿童脆弱性的感知（PPCV）之间的关系，研究对象为患有脊柱裂（SB）的青少年。
方法
作为一项纵向研究的一部分，招募了 140 名患有 SB 的青少年（T1 时年龄为 8-15 岁）的父母；数据分两次收集，间隔 2 年。母亲和父亲完成了评估个人困扰、育儿压力和 PPCV 水平的问卷。
结果
母亲和父亲报告的个人困扰、育儿压力和 PPCV 水平相似，但 PPCV 的报告随时间增加。对于母亲，个人困扰和育儿压力都与 PPCV 存在显著的横断面关联，但不存在纵向关联。对于父亲，育儿压力与 PPCV 存在显著的横断面和纵向关联。母亲育儿压力与 PPCV 的横断面关联受到年龄的调节，仅在年龄较大的青少年中存在显著关联。
结论
对于患有 SB 的青少年的父母，个人困扰和育儿压力与父母对儿童脆弱性的感知有关，而儿童年龄可能会调节这种关系。父母的个人困扰和育儿压力是未来干预的重要目标。
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