Vivienne Travlos, Shane Patman, Jenny Downs, Dana Hince, Andrew C Wilson
{"title":"患有神经肌肉疾病的不能走动的青少年的父母照顾者的生活质量和夜间出勤率。","authors":"Vivienne Travlos, Shane Patman, Jenny Downs, Dana Hince, Andrew C Wilson","doi":"10.1080/17518423.2021.1908440","DOIUrl":null,"url":null,"abstract":"<p><p><b>Purpose</b>: To describe and explore carer quality of life (QoL) and night-time attendance to their child in parents of non-ambulant youth with Neuromuscular Disorders.<b>Methods:</b> A cross-sectional population-based, comprehensive survey including the Adult Carer QoL (AC-QoL) questionnaire, measures of social context and youths' physical status. Associations between carer-QoL or frequency of parents' night-time attendance with independent variables were explored using linear and logistic regression models, respectively.<b>Results:</b> Parents' perceived lower carer-QoL (mean 76.5/120, SD 18.5) when they attended to their child twice a night or more (n = 17/35) and with shorter time since their child was prescribed noninvasive ventilation (NIV). Parental night-time attendance was not associated with youth's actual use of NIV, but was more likely when youth required assistance to turn in bed, reported frequent sleep discomfort and had more severe joint contractures.<b>Conclusions:</b> To optimize parent carer-QoL, interventions must address parents' frequency of night-time attendance and youths' sleep comfort.</p>","PeriodicalId":51227,"journal":{"name":"Developmental Neurorehabilitation","volume":"24 7","pages":"456-465"},"PeriodicalIF":1.1000,"publicationDate":"2021-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/17518423.2021.1908440","citationCount":"3","resultStr":"{\"title\":\"Parent Carer Quality of Life and Night-Time Attendance in Non-Ambulant Youth with Neuromuscular Disorders.\",\"authors\":\"Vivienne Travlos, Shane Patman, Jenny Downs, Dana Hince, Andrew C Wilson\",\"doi\":\"10.1080/17518423.2021.1908440\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p><b>Purpose</b>: To describe and explore carer quality of life (QoL) and night-time attendance to their child in parents of non-ambulant youth with Neuromuscular Disorders.<b>Methods:</b> A cross-sectional population-based, comprehensive survey including the Adult Carer QoL (AC-QoL) questionnaire, measures of social context and youths' physical status. Associations between carer-QoL or frequency of parents' night-time attendance with independent variables were explored using linear and logistic regression models, respectively.<b>Results:</b> Parents' perceived lower carer-QoL (mean 76.5/120, SD 18.5) when they attended to their child twice a night or more (n = 17/35) and with shorter time since their child was prescribed noninvasive ventilation (NIV). Parental night-time attendance was not associated with youth's actual use of NIV, but was more likely when youth required assistance to turn in bed, reported frequent sleep discomfort and had more severe joint contractures.<b>Conclusions:</b> To optimize parent carer-QoL, interventions must address parents' frequency of night-time attendance and youths' sleep comfort.</p>\",\"PeriodicalId\":51227,\"journal\":{\"name\":\"Developmental Neurorehabilitation\",\"volume\":\"24 7\",\"pages\":\"456-465\"},\"PeriodicalIF\":1.1000,\"publicationDate\":\"2021-10-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://sci-hub-pdf.com/10.1080/17518423.2021.1908440\",\"citationCount\":\"3\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Developmental Neurorehabilitation\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1080/17518423.2021.1908440\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2021/5/4 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q4\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Developmental Neurorehabilitation","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1080/17518423.2021.1908440","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2021/5/4 0:00:00","PubModel":"Epub","JCR":"Q4","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
Parent Carer Quality of Life and Night-Time Attendance in Non-Ambulant Youth with Neuromuscular Disorders.
Purpose: To describe and explore carer quality of life (QoL) and night-time attendance to their child in parents of non-ambulant youth with Neuromuscular Disorders.Methods: A cross-sectional population-based, comprehensive survey including the Adult Carer QoL (AC-QoL) questionnaire, measures of social context and youths' physical status. Associations between carer-QoL or frequency of parents' night-time attendance with independent variables were explored using linear and logistic regression models, respectively.Results: Parents' perceived lower carer-QoL (mean 76.5/120, SD 18.5) when they attended to their child twice a night or more (n = 17/35) and with shorter time since their child was prescribed noninvasive ventilation (NIV). Parental night-time attendance was not associated with youth's actual use of NIV, but was more likely when youth required assistance to turn in bed, reported frequent sleep discomfort and had more severe joint contractures.Conclusions: To optimize parent carer-QoL, interventions must address parents' frequency of night-time attendance and youths' sleep comfort.
期刊介绍:
Developmental Neurorehabilitation aims to enhance recovery, rehabilitation and education of people with brain injury, neurological disorders, and other developmental, physical and intellectual disabilities. Although there is an emphasis on childhood, developmental disability can be considered from a lifespan perspective. This perspective acknowledges that development occurs throughout a person’s life and thus a range of impairments or diseases can cause a disability that can affect development at any stage of life.