Abi Daoud Marie S, Dooley Joseph M, Gordon Kevin E
Division of Pediatric Neurology, Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada.
Pediatr Neurol. 2004 Jul;31(1):16-9. doi: 10.1016/j.pediatrneurol.2004.01.011.
This study examined depression, self-esteem, and mastery in the family caretakers of a group of males with Duchenne muscular dystrophy in comparison to a control group. A questionnaire based on the National Population Health Survey from Statistics Canada, a survey to collect information on the health of the Canadian population and related sociodemographic information, was conducted by telephone with 42 parents. The results were compared with the national data from the National Population Health Survey (1994 and 1999), matched for province of residence, number of children in the household, age, and marital status of the respondents. Parents of children with Duchenne muscular dystrophy had a higher probability of going through a major depressive episode and had significantly lower self-esteem and mastery scores than the national control group. None of the variables investigated (age, intelligence quotient, and ambulatory status of child or sex, age, and marital status of parent) could predict the depressive episode, with two exceptions. Parents without a partner had lower scores on the mastery scale, and parents of males older than 13 years of age were more likely to experience distress that interfered with life. It is incumbent on those caring for patients with Duchenne muscular dystrophy to counsel families regarding their potential to suffer a major depressive episode and to advise on appropriate therapy.
本研究对一组杜氏肌营养不良症男性患者的家庭照料者与对照组进行了抑郁、自尊和掌控感方面的调查。通过电话对42位家长进行了一项基于加拿大统计局全国人口健康调查的问卷,该调查旨在收集加拿大人口健康及相关社会人口学信息。将结果与全国人口健康调查(1994年和1999年)的全国数据进行比较,匹配了居住省份、家庭子女数量、受访者年龄和婚姻状况。与全国对照组相比,杜氏肌营养不良症患儿的家长经历重度抑郁发作的可能性更高,自尊和掌控感得分显著更低。除两个例外情况外,所调查的变量(孩子的年龄、智商、活动能力或家长的性别、年龄和婚姻状况)均无法预测抑郁发作。没有伴侣的家长在掌控量表上得分较低,13岁以上男性患儿的家长更有可能经历干扰生活的困扰。照料杜氏肌营养不良症患者的人员有责任就家庭可能遭受重度抑郁发作的情况向其提供咨询,并就适当的治疗提供建议。