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脊柱裂患儿照料者的心理健康与养育特征

Mental health and parenting characteristics of caregivers of children with spina bifida.

作者信息

Malm-Buatsi Elizabeth, Aston Christopher E, Ryan Jamie, Tao Yeun, Palmer Blake W, Kropp Bradley P, Klein Jake, Wisniewski Amy B, Frimberger Dominic

机构信息

Department of Urology, Section of Pediatric Urology, University of Oklahoma Health Science Center, Oklahoma City, OK, USA.

Center for Adherence and Self-Management, Cincinnati Children's Hospital Medical Center, OH, USA.

出版信息

J Pediatr Urol. 2015 Apr;11(2):65.e1-7. doi: 10.1016/j.jpurol.2014.09.009. Epub 2015 Feb 24.

Abstract

INTRODUCTION

Within the chronic medical illness literature, associations exist between caring for an affected child and parent mental health. The few studies examining both mothers and fathers provide mixed results. The purpose of this study is to examine associations between caregiver anxiety, depression, and parenting variables in caregivers of youth with SB as these relate to marital status, age, education, household income, work status, and child's severity of SB.

OBJECTIVE

The aim of this study is to examine associations between anxiety, depression, and parenting variables in caregivers of youth with spina bifida and how they relate to demographic and disease variables. Exploratory analyses examined the relationship between participation in support activities and depressive and anxious symptomatology and parenting characteristics.

STUDY DESIGN

Eighty-four primary caregivers (49 mothers) of 51 youth with spina bifida completed measures of depressive and anxious symptomology, parenting stress, parent overprotection, and perceived child vulnerability.

RESULTS

There were differences between mothers and fathers on several parenting characteristics; however, these were related more to marital status and employment than to gender of the caretaker per se. In the 33 married/remarried couples for whom both spouses participated, stress for the mothers was correlated with stress for the fathers. This correlation was strongest in the 12 married couples in which the mother works. Higher perceived vulnerability scores were reported in parents of SB patients in the younger age group, especially preschoolers (0-4 years). Parents of children with shunts reported more anxiety, depression and perceived child vulnerability. Both male and female caregivers of younger children reported significantly higher protectiveness scores. Involvement in recreational activities with other families affected by SB was associated with more positive parenting characteristics for mothers.

DISCUSSION

Stress and protectiveness were found to be positively correlated (r > 0.6); depression, anxiety, and perceived vulnerability were not (0.3 < r < -0.3). Overall, mothers reported more stress and anxiety than fathers. Higher perceived vulnerability scores were reported in parents of SB patients in the younger age group, especially preschoolers (0-4 years). Parents of children with shunts reported more anxiety, depression and perceived child vulnerability. Both male and female caregivers of younger children reported significantly higher protectiveness scores compared to caregivers of older children. Involvement in recreational activities with other families affected by SB was associated with more positive parenting characteristics for mothers. There were differences between mothers and fathers on several parenting characteristics; however, these were related more to marital status and employment than to gender of the caretaker per se. Limitations to the current study qualify our results and conclusions. Associations do not prove causation. Our measure of parent protection had a lower Cronbach's alpha score for male caregivers (0.68) than female caregivers (0.83), consistent with an examination of the factor structure of the PPS that found the measure to have a poor factor structure and limited reliability in samples with a chronic medical condition.

CONCLUSION

Anxiety, depression, and parenting characteristics were differentially impacted by variables such as caregiver and child age, shunt status, and employment status/income for parents of youth with SB. Interventions to improve parenting skills and mental health of these caregivers can be designed to target specific needs of parents. Groups such as the Greater Oklahoma Disabled Sports Association (GODSA) offer real-world support to improve the lives of caregivers of SB children, and should be studied further to optimize outcomes for children.

摘要

引言

在慢性疾病文献中,照顾患病儿童与父母心理健康之间存在关联。少数对父母双方都进行研究的结果不一。本研究的目的是探讨患有脊柱裂(SB)青少年的照顾者的焦虑、抑郁与养育变量之间的关联,以及这些关联与婚姻状况、年龄、教育程度、家庭收入、工作状况和儿童SB严重程度的关系。

目的

本研究旨在探讨脊柱裂青少年照顾者的焦虑、抑郁与养育变量之间的关联,以及它们与人口统计学和疾病变量的关系。探索性分析考察了参与支持活动与抑郁和焦虑症状及养育特征之间的关系。

研究设计

51名患有脊柱裂青少年的84名主要照顾者(49名母亲)完成了抑郁和焦虑症状、养育压力、父母过度保护及感知到的儿童易损性的测量。

结果

父母在几个养育特征上存在差异;然而,这些差异更多地与婚姻状况和就业情况有关,而非照顾者本身的性别。在夫妻双方都参与的33对已婚/再婚夫妇中,母亲的压力与父亲的压力相关。这种相关性在母亲工作的12对已婚夫妇中最强。年龄较小的SB患者的父母,尤其是学龄前儿童(0 - 4岁)的父母,报告的感知易损性得分更高。有分流装置的儿童的父母报告有更多的焦虑、抑郁和感知到的儿童易损性。照顾年幼儿童的男性和女性照顾者报告的保护得分均显著更高。与其他受SB影响的家庭一起参与娱乐活动与母亲更积极的养育特征相关。

讨论

压力和保护欲呈正相关(r > 0.6);抑郁、焦虑和感知到的易损性则不然(0.3 < r < -0.3)。总体而言,母亲报告的压力和焦虑比父亲更多。年龄较小患者的父母,尤其是学龄前儿童(0 - 4岁)的父母,报告的感知易损性得分更高。有分流装置的儿童的父母报告有更多的焦虑、抑郁和感知到的儿童易损性。与照顾年龄较大儿童的照顾者相比,照顾年幼儿童的男性和女性照顾者报告的保护得分均显著更高。与其他受SB影响的家庭一起参与娱乐活动与母亲更积极的养育特征相关。父母在几个养育特征上存在差异;然而,这些差异更多地与婚姻状况和就业情况有关,而非照顾者本身的性别。本研究的局限性使我们的结果和结论具有一定条件性。关联并不证明因果关系。我们对父母保护的测量中,男性照顾者的克朗巴哈系数(Cronbach's alpha)得分(0.68)低于女性照顾者(0.83),这与对父母保护量表(PPS)因子结构的一项研究结果一致,该研究发现该量表在患有慢性疾病的样本中因子结构不佳且可靠性有限。

结论

焦虑、抑郁和养育特征受到照顾者和儿童年龄、分流状况以及患有SB青少年父母的就业状况/收入等变量的不同影响。可以针对这些照顾者的特定需求设计干预措施,以提高他们的养育技能和心理健康水平。像俄克拉荷马州残疾人体育协会(GODSA)这样的团体为改善SB儿童照顾者的生活提供了实际支持,应该进一步研究以优化儿童的治疗效果。

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