Chen Jih-Yuan
School of Nursing, Kaohsiung Medical University, Kaohsiung, Taiwan.
Kaohsiung J Med Sci. 2008 Oct;24(10):514-22. doi: 10.1016/S1607-551X(09)70010-5.
Most families of children with Duchenne muscular dystrophy (DMD) first receive professional information about the disease at the time of their child's diagnosis. Generally, as the families begin to build a supportive care system for their children, the parents will research DMD on their own or gather formal knowledge about the disease from professionals. However, gaining access to care is a major challenge because they often do not know how to ask the right questions. In particular, vulnerable populations may experience difficulties in assisting their child's emotional adjustment to the disability and use of available services. The purpose of this study was to test the possible effects of psychosocial mediators of parental health, family hardiness and family support on family function in relation to the age at diagnosis of children with DMD. One hundred and twenty-six Taiwanese parents of children with DMD who are members of the Taiwan Muscular Dystrophy Association filled out questionnaires. Subjects received a phone call before and again within the first week after we mailed them a questionnaire, a stamped return-addressed envelope, and a consent form. The questionnaires included the Family Hardiness Index, Family Assessment Device, Family APGAR, Duke Health Profile and demographic questions. Hierarchical multiple regressions were conducted to test whether family hardiness, parental health, or family support mediated or moderated the association between age at diagnosis and family function. Family hardiness positively mediated the association between age at diagnosis and family function. These findings may help the design of interventions to develop family hardiness in families of children with DMD.
大多数杜氏肌营养不良症（DMD）患儿的家庭在孩子被诊断出病情时，首次获得有关该疾病的专业信息。一般来说，随着家庭开始为孩子建立支持性护理系统，父母会自行研究DMD，或从专业人士那里收集有关该疾病的正规知识。然而，获得护理是一项重大挑战，因为他们常常不知道如何提出恰当的问题。特别是弱势群体在帮助孩子从情感上适应残疾以及使用现有服务方面可能会遇到困难。本研究的目的是测试父母健康、家庭韧性和家庭支持等心理社会调节因素，对DMD患儿诊断年龄与家庭功能之间关系可能产生的影响。126名台湾杜氏肌营养不良症患儿的父母（他们是台湾肌肉萎缩症协会的成员）填写了问卷。在我们给他们邮寄问卷、一个贴好邮票并写有回信地址的信封以及一份同意书之后，受试者在一周内收到了一个电话，并且在这之前也收到过一次电话。问卷包括家庭韧性指数、家庭评估工具、家庭APGAR问卷、杜克健康概况问卷以及人口统计学问题。进行了分层多元回归分析，以测试家庭韧性、父母健康或家庭支持是否介导或调节了诊断年龄与家庭功能之间的关联。家庭韧性对诊断年龄与家庭功能之间的关联起到了积极的介导作用。这些研究结果可能有助于设计干预措施，以培养DMD患儿家庭的家庭韧性。
