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首页> 外文学位 >The health-related quality of life in mothers of surviving deaf-blind adult children with congenital rubella syndrome.
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The health-related quality of life in mothers of surviving deaf-blind adult children with congenital rubella syndrome.

机译：幸存的先天性风疹综合症聋哑成年儿童母亲的健康相关生活质量。

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The purpose of this study is to determine the health related quality of life (HRQOL) of mothers of surviving deaf-blind adult children with congenital rubella syndrome (CRS) and the relationship of factors that influence it. This study uses a cross sectional design with all of the study participants having surviving CRS adult children born from the 1963-1965 epidemic. Demographic information was incorporated into a self-administered questionnaire along with three established instruments: The Medical Outcomes Study 36-Item Short-Form Health Survey, Caregiver Strain Index (CSI) and the Modified Barthel Index (MBI). This study utilizes the Family Systems Theory to expand the understanding of maternal HRQOL. Analysis revealed that: (1) Maternal CSI scores were significantly associated with the HRQOL domains F (13, 273) = 67.175 p .001. Mothers who experienced high levels of caregiver stress had a poorer overall quality of life than those with lower levels of stress. (2) The deaf-blind adult child's with CRS functional ability was significantly associated with the maternal HRQOL domains F (22, 263) = 17.03 p .001. Mothers of adult deaf blind children with low MBI scores had poorer overall quality of life than those with higher scores. (3) Communication method were significantly associated with the HRQOL domains. Communication with American Sign Language (M = 80.39, SD = 20.8) demonstrated better overall maternal HRQOL scores than those with gestures (M = 31.49, SD = 32.57), F (8, 277) = 17.471, p .001. (4) Behaviors were significantly associated with the HRQOL domains with the largest difference between the adult-child demonstrating no apparent behavior (M = 89.77, SD = 11.7) to those presenting aggressive behavior (M = 30.95, SD = 30.37), F (7, 279) = 21.130 p .001. As the prevalence of children with disabilities continues to increase, so does the demand for professionals who understand the unique needs of caregivers. As these children transition to adult care, professionals must understand the impact the special needs have on the mother and by extension, the family, and be able to provide the care and resources needed to bridge the transition and support the continued care.
机译：这项研究的目的是确定尚存的先天性风疹综合症（CRS）的聋盲成年子女母亲的健康相关生活质量（HRQOL）及其影响因素的关系。本研究采用横断面设计，所有研究参与者均患有1963-1965年流行的CRS成年存活儿童。人口统计学信息与三种已建立的工具一起被纳入了自我管理的调查问卷中：《医疗结果研究36项简短健康调查》，《照顾者劳损指数》（CSI）和《巴特尔修正指数》（MBI）。这项研究利用家庭系统理论扩大了对孕产妇HRQOL的理解。分析显示：（1）孕产妇CSI评分与HRQOL域F（13，273）= 67.175 p <.001显着相关。与照料者压力较低的母亲相比，照料者压力较高的母亲的整体生活质量较差。 （2）具有CRS功能能力的聋盲成年儿童与母亲HRQOL域F（22，263）= 17.03 p <.001显着相关。 MBI分数较低的成年聋盲儿童的母亲的整体生活质量较分数较高的聋盲母亲为差。 （3）沟通方式与HRQOL域显着相关。与美国手势语（M = 80.39，SD = 20.8）的交流表现出比手势（M = 31.49，SD = 32.57），F（8，277）= 17.471，p <.001更好的总体孕妇HRQOL得分。 （4）行为与HRQOL域显着相关，其中成年子女表明无明显行为（M = 89.77，SD = 11.7）与表现出攻击行为（M = 30.95，SD = 30.37），F（ 7，279）= 21.130 p <.001。随着残疾儿童的患病率持续增加，对了解照料者独特需求的专业人员的需求也在增加。当这些孩子过渡到成人护理时，专业人士必须了解特殊需求对母亲以及整个家庭的影响，并能够提供过渡所需的护理和资源，并支持持续的护理。

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