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本文引用的文献

1
Development of an evidence-based individualized transition plan for spina bifida.制定基于证据的个体化脊柱裂过渡期计划。
Neurosurg Focus. 2019 Oct 1;47(4):E17. doi: 10.3171/2019.7.FOCUS19425.
2
A Systematic Review of Behavioral Intervention Technologies for Youth With Chronic Health Conditions and Physical and Intellectual Disabilities: Implications for Adolescents and Young Adults With Spina Bifida.行为干预技术在慢性健康状况和身体及智力残疾青少年中的系统评价:对脊柱裂青少年和青年的启示。
J Pediatr Psychol. 2019 Apr 1;44(3):349-362. doi: 10.1093/jpepsy/jsy097.
3
Parental Distress and Stress in Association with Health-Related Quality of Life in Youth with Spina Bifida: A Longitudinal Study.父母的困扰与青少年脊柱裂患者健康相关生活质量的关联:一项纵向研究。
J Dev Behav Pediatr. 2018 Dec;39(9):744-753. doi: 10.1097/DBP.0000000000000603.
4
Co-morbidities Associated With Early Mortality in Adults With Spina Bifida.合并症与成人脊柱裂患者早期死亡率的相关性。
Am J Phys Med Rehabil. 2018 Dec;97(12):861-865. doi: 10.1097/PHM.0000000000000964.
5
A Longitudinal Study of Depressive Symptoms, Neuropsychological Functioning, and Medical Responsibility in Youth With Spina Bifida: Examining Direct and Mediating Pathways.青少年脊柱裂患者抑郁症状、神经心理学功能与医疗责任的纵向研究:直接和中介途径的检验。
J Pediatr Psychol. 2018 Sep 1;43(8):895-905. doi: 10.1093/jpepsy/jsy007.
6
In the Eye of the Beholder? Parent-Observer Discrepancies in Parenting and Child Disruptive Behavior Assessments.在观察者眼中?父母-观察者在育儿和儿童行为障碍评估中的差异。
J Abnorm Child Psychol. 2018 Aug;46(6):1147-1159. doi: 10.1007/s10802-017-0381-7.
7
Parental Perceptions of Child Vulnerability in Families of Youth With Spina Bifida: the Role of Parental Distress and Parenting Stress.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。
J Pediatr Psychol. 2018 Jun 1;43(5):513-524. doi: 10.1093/jpepsy/jsx133.
8
The association between parent-reported and observed parenting: A multi-level meta-analysis.父母报告的教养方式与观察到的教养方式之间的关联:一项多层次元分析。
Psychol Assess. 2018 May;30(5):621-633. doi: 10.1037/pas0000500. Epub 2017 Jun 19.
9
Efficacy of illness perception focused intervention on quality of life, anxiety, and depression in patients with myocardial infarction.针对心肌梗死患者的疾病认知聚焦干预对生活质量、焦虑和抑郁的疗效。
J Res Med Sci. 2016 Dec 26;21:125. doi: 10.4103/1735-1995.196607. eCollection 2016.
10
Long-time sickness absence among parents of pre-school children with cerebral palsy, spina bifida and down syndrome: a longitudinal study.对患有脑瘫、脊柱裂和唐氏综合征的学龄前儿童父母长期病假情况的纵向研究。
BMC Pediatr. 2017 Jan 18;17(1):26. doi: 10.1186/s12887-016-0774-8.

母体因素与青少年脊柱裂相关责任之间的关联途径。

Pathways by which Maternal Factors are Associated With Youth Spina Bifida-Related Responsibility.

机构信息

Psychology Department, Loyola University Chicago.

Marcella Niehoff School of Nursing, Loyola University Chicago.

出版信息

J Pediatr Psychol. 2020 Jul 1;45(6):610-621. doi: 10.1093/jpepsy/jsaa020.

DOI:10.1093/jpepsy/jsaa020
PMID:32337548
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7306684/
Abstract

OBJECTIVE

Achieving condition-related autonomy is an important developmental milestone for youth with spina bifida (SB). However, the transfer of condition-related responsibility to these youth can be delayed due to parent factors. This study aimed to investigate two potential pathways by which maternal factors may be associated with condition-related responsibility among youth with SB: (a) Maternal adjustment → perception of child vulnerability (PPCV) → youth condition-related responsibility; and (b) Maternal PPCV → overprotection → youth condition-related responsibility.

METHODS

Participating youth with SB (N = 140; Mage=11.4 years, range = 8-15 years) were recruited as part of a longitudinal study; data from three time points (each spaced 2 years apart) from the larger study were used. Mothers reported on personal adjustment factors, PPCV, and overprotection. An observational measure of overprotection was also included. Mothers, fathers, and youth with SB reported on youths' degree of responsibility for condition-related tasks. Analyses included age, lesion level, IQ, and the dependent variables at the prior wave as covariates.

RESULTS

Bootstrapped mediation analyses revealed that PPCV significantly mediated the relationship between maternal distress and youth responsibility for medical tasks such that higher levels of distress at Time 1 predicted higher levels of PPCV at Time 2 and lower youth medical responsibility at Time 3. Furthermore, self-reported maternal overprotection significantly mediated the relationship between maternal PPCV and youth responsibility for medical tasks.

CONCLUSIONS

Maternal personal distress, PPCV, and self-reported overprotection are interrelated and affect youth's condition-related responsibility. Interventions for mothers of youth with SB that target these factors may improve both maternal and youth outcomes.

摘要

目的

实现与病情相关的自主是脊柱裂(SB)青少年的一个重要发展里程碑。然而,由于父母因素,这种与病情相关的责任可能会延迟转移给这些青少年。本研究旨在探讨两个潜在途径,即母亲因素可能通过这些途径与 SB 青少年的与病情相关的责任相关联:(a)母亲的适应→对孩子脆弱性的感知(PPCV)→青少年与病情相关的责任;(b)母亲的 PPCV→过度保护→青少年与病情相关的责任。

方法

作为一项纵向研究的一部分,招募了患有 SB 的青少年参与者(N=140;平均年龄=11.4 岁,范围=8-15 岁);使用来自更大研究的三个时间点(每 2 年间隔一次)的数据。母亲报告了个人适应因素、PPCV 和过度保护情况。还包括对过度保护的观察性测量。母亲、父亲和患有 SB 的青少年报告了青少年对与病情相关任务的责任程度。分析包括年龄、病变水平、智商以及前一波的因变量作为协变量。

结果

Bootstrapped 中介分析显示,PPCV 显著中介了母亲困扰与青少年对医疗任务责任之间的关系,即第 1 时间点的困扰水平较高,预测第 2 时间点的 PPCV 水平较高,第 3 时间点的青少年医疗责任较低。此外,自我报告的母亲过度保护显著中介了母亲 PPCV 与青少年对医疗任务责任之间的关系。

结论

母亲的个人困扰、PPCV 和自我报告的过度保护是相互关联的,会影响青少年的与病情相关的责任。针对 SB 青少年母亲的这些因素的干预措施可能会改善母亲和青少年的结果。