{"title":"脆性X综合征患儿母亲的感知生活质量。","authors":"Anne C Wheeler, Debra G Skinner, Donald B Bailey","doi":"10.1352/0895-8017(2008)113[159:PQOLIM]2.0.CO;2","DOIUrl":null,"url":null,"abstract":"<p><p>A mixed method approach was used to explore quality of life of 101 mothers of children with fragile X syndrome. Mothers completed a self-report of personal quality of life and measures of mental health and well-being. A subset was interviewed about quality of life. The distribution of scores on the Quality of Life Inventory was similar to the norms, indicating that these mothers do not, as a whole, report a lower quality of life than does the average woman. Significant predictors of quality of life were trait hope and parenting stress. The most common positive factor was being a mother. However, they also indicated that parenting a child with fragile X presented challenges and stressors, primarily when the social environment was not supportive.</p>","PeriodicalId":76991,"journal":{"name":"American journal of mental retardation : AJMR","volume":"113 3","pages":"159-77"},"PeriodicalIF":0.0000,"publicationDate":"2008-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1352/0895-8017(2008)113[159:PQOLIM]2.0.CO;2","citationCount":"60","resultStr":"{\"title\":\"Perceived quality of life in mothers of children with fragile X syndrome.\",\"authors\":\"Anne C Wheeler, Debra G Skinner, Donald B Bailey\",\"doi\":\"10.1352/0895-8017(2008)113[159:PQOLIM]2.0.CO;2\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>A mixed method approach was used to explore quality of life of 101 mothers of children with fragile X syndrome. Mothers completed a self-report of personal quality of life and measures of mental health and well-being. A subset was interviewed about quality of life. The distribution of scores on the Quality of Life Inventory was similar to the norms, indicating that these mothers do not, as a whole, report a lower quality of life than does the average woman. Significant predictors of quality of life were trait hope and parenting stress. The most common positive factor was being a mother. However, they also indicated that parenting a child with fragile X presented challenges and stressors, primarily when the social environment was not supportive.</p>\",\"PeriodicalId\":76991,\"journal\":{\"name\":\"American journal of mental retardation : AJMR\",\"volume\":\"113 3\",\"pages\":\"159-77\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2008-05-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://sci-hub-pdf.com/10.1352/0895-8017(2008)113[159:PQOLIM]2.0.CO;2\",\"citationCount\":\"60\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"American journal of mental retardation : AJMR\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1352/0895-8017(2008)113[159:PQOLIM]2.0.CO;2\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"American journal of mental retardation : AJMR","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1352/0895-8017(2008)113[159:PQOLIM]2.0.CO;2","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
Perceived quality of life in mothers of children with fragile X syndrome.
A mixed method approach was used to explore quality of life of 101 mothers of children with fragile X syndrome. Mothers completed a self-report of personal quality of life and measures of mental health and well-being. A subset was interviewed about quality of life. The distribution of scores on the Quality of Life Inventory was similar to the norms, indicating that these mothers do not, as a whole, report a lower quality of life than does the average woman. Significant predictors of quality of life were trait hope and parenting stress. The most common positive factor was being a mother. However, they also indicated that parenting a child with fragile X presented challenges and stressors, primarily when the social environment was not supportive.