Christina N Marsack-Topolewski, Kathryn Hughesdon, Preethy S Samuel
{"title":"自闭症成人父母照顾负担的差异水平。","authors":"Christina N Marsack-Topolewski, Kathryn Hughesdon, Preethy S Samuel","doi":"10.1177/01939459251338421","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Parents of a child with autism spectrum disorder (ASD) often continue providing care for their children across the lifespan until they are no longer able, which can cause caregiver burden and affect their quality of life (QOL). To date, most of the research focuses on parents of young children with ASD, with only a small body of research on older parents of adults with ASD.</p><p><strong>Objective: </strong>The purpose of this study was to determine whether perceived caregiver health, QOL, availability of informal support, and number of formal supports differed by 3 levels of caregiver burden.</p><p><strong>Methods: </strong>A total of 320 older parents (age ≥50 years) of adults with ASD participated in this cross-sectional survey research study that used multiple analysis of variance (MANOVA) to understand the challenges of caregivers when compared by the perceived levels of caregiver burden.</p><p><strong>Results: </strong>MANOVA indicated that better health, positive QOL, more availability of informal support, and use of fewer formal supports were associated with lower levels of caregiver burden (<i>F</i><sub>8,614</sub> = 18.48, <i>P</i> < .001, <math><mrow><msubsup><mi>η</mi><mi>p</mi><mn>2</mn></msubsup></mrow></math> = 0.19).</p><p><strong>Conclusion: </strong>Given that high caregiver burden was associated with lower caregiver health, QOL, decreased availability of informal support, and greater use of formal supports, nurses and other health professionals should be cognizant that older parents need specialized attention.</p>","PeriodicalId":49365,"journal":{"name":"Western Journal of Nursing Research","volume":" ","pages":"720-731"},"PeriodicalIF":2.0000,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Differential Levels of Caregiver Burden Among Parents of Adults With Autism.\",\"authors\":\"Christina N Marsack-Topolewski, Kathryn Hughesdon, Preethy S Samuel\",\"doi\":\"10.1177/01939459251338421\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Parents of a child with autism spectrum disorder (ASD) often continue providing care for their children across the lifespan until they are no longer able, which can cause caregiver burden and affect their quality of life (QOL). To date, most of the research focuses on parents of young children with ASD, with only a small body of research on older parents of adults with ASD.</p><p><strong>Objective: </strong>The purpose of this study was to determine whether perceived caregiver health, QOL, availability of informal support, and number of formal supports differed by 3 levels of caregiver burden.</p><p><strong>Methods: </strong>A total of 320 older parents (age ≥50 years) of adults with ASD participated in this cross-sectional survey research study that used multiple analysis of variance (MANOVA) to understand the challenges of caregivers when compared by the perceived levels of caregiver burden.</p><p><strong>Results: </strong>MANOVA indicated that better health, positive QOL, more availability of informal support, and use of fewer formal supports were associated with lower levels of caregiver burden (<i>F</i><sub>8,614</sub> = 18.48, <i>P</i> < .001, <math><mrow><msubsup><mi>η</mi><mi>p</mi><mn>2</mn></msubsup></mrow></math> = 0.19).</p><p><strong>Conclusion: </strong>Given that high caregiver burden was associated with lower caregiver health, QOL, decreased availability of informal support, and greater use of formal supports, nurses and other health professionals should be cognizant that older parents need specialized attention.</p>\",\"PeriodicalId\":49365,\"journal\":{\"name\":\"Western Journal of Nursing Research\",\"volume\":\" \",\"pages\":\"720-731\"},\"PeriodicalIF\":2.0000,\"publicationDate\":\"2025-08-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Western Journal of Nursing Research\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1177/01939459251338421\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2025/5/27 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q2\",\"JCRName\":\"NURSING\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Western Journal of Nursing Research","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1177/01939459251338421","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2025/5/27 0:00:00","PubModel":"Epub","JCR":"Q2","JCRName":"NURSING","Score":null,"Total":0}
引用次数: 0
摘要
背景:自闭症谱系障碍(ASD)儿童的父母通常会在整个生命周期中继续照顾他们的孩子,直到他们不再有能力,这可能会造成照顾者负担并影响他们的生活质量(QOL)。迄今为止,大多数研究都集中在患有自闭症的幼儿的父母身上,只有一小部分研究是针对患有自闭症的成年人的老年父母。目的:本研究的目的是确定感知照顾者健康、生活质量、非正式支持的可用性和正式支持的数量在照顾者负担的3个水平上是否存在差异。方法:共有320名年龄≥50岁的成年ASD父母参与了这项横断面调查研究,采用多元方差分析(MANOVA)来了解照顾者在感知照顾者负担水平时所面临的挑战。结果:方差分析显示,更好的健康状况、积极的生活质量、更多的非正式支持的可用性和较少的正式支持的使用与较低的照顾者负担水平相关(F8,614 = 18.48, P ηp2 = 0.19)。结论:考虑到照顾者负担高与照顾者健康和生活质量下降、非正式支持的可用性降低以及更多地使用正式支持有关,护士和其他卫生专业人员应该认识到,老年父母需要专门的关注。
Differential Levels of Caregiver Burden Among Parents of Adults With Autism.
Background: Parents of a child with autism spectrum disorder (ASD) often continue providing care for their children across the lifespan until they are no longer able, which can cause caregiver burden and affect their quality of life (QOL). To date, most of the research focuses on parents of young children with ASD, with only a small body of research on older parents of adults with ASD.
Objective: The purpose of this study was to determine whether perceived caregiver health, QOL, availability of informal support, and number of formal supports differed by 3 levels of caregiver burden.
Methods: A total of 320 older parents (age ≥50 years) of adults with ASD participated in this cross-sectional survey research study that used multiple analysis of variance (MANOVA) to understand the challenges of caregivers when compared by the perceived levels of caregiver burden.
Results: MANOVA indicated that better health, positive QOL, more availability of informal support, and use of fewer formal supports were associated with lower levels of caregiver burden (F8,614 = 18.48, P < .001, = 0.19).
Conclusion: Given that high caregiver burden was associated with lower caregiver health, QOL, decreased availability of informal support, and greater use of formal supports, nurses and other health professionals should be cognizant that older parents need specialized attention.
期刊介绍:
Western Journal of Nursing Research (WJNR) is a widely read and respected peer-reviewed journal published twelve times a year providing an innovative forum for nurse researchers, students, and clinical practitioners to participate in ongoing scholarly dialogue. WJNR publishes research reports, systematic reviews, methodology papers, and invited special papers. This journal is a member of the Committee on Publication Ethics (COPE).