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养育子女:患有系统性红斑狼疮的女性被遗忘的角色。

Parenting: the forgotten role of women living with systemic lupus erythematosus.

机构信息

Occupational Therapy Graduate Program, University of New Mexico, Albuquerque, NM 87131-0001, USA.

出版信息

Clin Rheumatol. 2012 Jun;31(6):995-1000. doi: 10.1007/s10067-011-1929-5. Epub 2012 Jan 12.

Abstract

This study investigates parenting and the impact of symptoms, such as pain and fatigue, on the parenting abilities of mothers with systemic lupus erythematosus (SLE). Participants were 68 mothers with SLE who had children 18 years of age and younger. The mothers completed surveys consisting of a demographic questionnaire and self-report instruments such as the Parenting Disability Index (PDI), Health Assessment Questionnaire, Pain Visual Analog Scale, and Multidimensional Assessment of Fatigue Scale. Analysis of variance was used to compare parenting abilities for women with younger children (birth -5 years) and women with older children (6-18 years) and women with children in both age groups. There were no significant differences between the three groups. However, having more fatigue, functional disability, and less education resulted in higher PDI scores in all groups. Mothers with children younger than age 5 reported that having energy to talk/listen to a child was the most difficult parenting task. Mothers with children between 6 and 18 years of age reported the most difficulties with maintaining discipline, playing games, shopping, and doing household chores. Symptoms of lupus have a significant influence on mothering roles. In daily practice, health care providers may want to consider inquiring about the impact SLE may be having on their patients' parenting roles.

摘要

本研究调查了育儿情况,以及疼痛和疲劳等症状对系统性红斑狼疮 (SLE) 母亲育儿能力的影响。参与者为 68 名患有 SLE 的母亲,她们的孩子年龄在 18 岁及以下。母亲们完成了包括人口统计问卷和自我报告工具在内的调查,如育儿障碍指数 (PDI)、健康评估问卷、疼痛视觉模拟量表和多维疲劳评估量表。方差分析用于比较有年幼子女(出生至 5 岁)、年长子女(6-18 岁)和两个年龄段都有子女的母亲的育儿能力。三组之间没有显著差异。然而,疲劳程度更高、功能障碍更多和教育程度更低会导致所有组的 PDI 评分更高。有 5 岁以下子女的母亲报告说,有精力与孩子交谈/倾听是最困难的育儿任务。6 至 18 岁子女的母亲报告说,在维持纪律、玩游戏、购物和做家务方面最困难。狼疮症状对育儿角色有重大影响。在日常实践中,医疗保健提供者可能希望考虑询问 SLE 对患者育儿角色的影响。

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