Family caregivers in later life: A longitudinal study of well-being and mental health in families of adults with autism and developmental disabilities

晚年的家庭照顾者：对患有自闭症和发育障碍的成年人的家庭福祉和心理健康的纵向研究

• 批准号: 10588105
• 负责人: Catherine Lord
• 金额: $ 65.51万
• 依托单位: UNIVERSITY OF CALIFORNIA LOS ANGELES
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-03-15 至 2028-02-29
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10588105
• 关键词: Acceleration; Address; Adult Children; Affect; Age; Aggressive behavior; Aging; Anxiety; Behavior; Behavioral; Belief; Biological; Biological Aging; Biological Process; Buffers; Caregiver Burden; Caregiver well-being; Caregivers; Caring; Characteristics; Child; Cognitive; Cognitive aging; Coping Skills; Data; Deceleration; Dementia; Development; Developmental Delay Disorders; Developmental Disabilities; Disease; Education; Elderly; Event; Exposure to; Family; Family Caregiver; Financial Support; Future; Goals; Health; Home; Income; Independent Living; Interview; Life; Link; Longitudinal Studies; Measures; Mental Depression; Mental Health; Modeling; Outcome; Patient Self-Report; Personal Satisfaction; Physical Function; Predictive Factor; Prospective Studies; Questionnaires; Race; Recording of previous events; Research; Resources; Retirement; Risk; Role; Sampling; Social Network; Social support; Specificity; Stress; Testing; Time; Work; adult with autism spectrum disorder; autism spectrum disorder; autistic; autistic children; care giving burden; caregiver education; caregiver stress; caregiving; cognitive ability; cognitive change; cognitive function; coping; demographics; depressive symptoms; developmental disease; diaries; externalizing behavior; improved; individuals with autism spectrum disorder; longitudinal, prospective study; prevent; promote resilience; prospective; resilience; social; social factors; verbal; young adult; young adult with autism spectrum disorder

Project Summary/Abstract This project aims to improve our ability to support the resilience of family caregivers of adults with autism and developmental disorders as the caregivers move into later life. Based on a 30 year longitudinal study that prospectively followed families from when their children were referred for possible autism or developmental delays, we will use a social convoy model to investigate trajectories of social connectedness and isolation over the next five years as they affect caregivers’ mental health and well-being. This model describes changes in social connectedness over time that may increase vulnerability or reduce the effects of caregiver burden. We examine additional interacting factors specifically related to family caregiver well-being and mental health in families with adult children with developmental disabilities. We will use questionnaires, app-based diaries, face to face interviews and exploratory measures of biological and cognitive aging over the course of 5 years during which our sample is in their 60’s, linked to rich behavioral data from the past 20-30 years. Our objective is to identify life milestones, such as retirement and the adult child’s moving out, as well as caregiver coping strategies that allow us to support well-being and mental health in family caregivers as they age.

项目总结/摘要 该项目旨在提高我们的能力，以支持自闭症成年人的家庭照顾者的复原力， 随着照顾者进入晚年，他们会出现发育障碍。根据一项为期30年的纵向研究， 前瞻性地跟踪了他们的孩子因可能的自闭症或发育障碍而被转诊的家庭， 延迟，我们将使用一个社会车队模型来调查社会联系和隔离的轨迹， 未来五年，因为它们影响照顾者的心理健康和福祉。该模型描述了 随着时间的推移，社会联系可能会增加脆弱性或减少照顾者负担的影响。我们 检查与家庭照顾者福祉和心理健康特别相关的其他相互作用因素， 有发育障碍成年子女的家庭。我们将使用问卷，基于应用程序的日记， 在5年的时间里， 我们的样本是60多岁，与过去20-30年的丰富行为数据有关。我们的目标是 确定生命的里程碑，如退休和成年子女的搬出，以及照顾者的应对 战略，使我们能够支持家庭照顾者的福祉和心理健康，因为他们的年龄。

项目成果

Social competence as a predictor of adult outcomes in autism spectrum disorder.

社交能力作为自闭症谱系障碍成人结局的预测因子。

• DOI: 10.1017/s0954579423000664
• 发表时间: 2023
• 期刊: Development and psychopathology
• 影响因子: 3.3
• 作者: Clarke,ElaineB;Lord,Catherine
• 通讯作者: Lord,Catherine

A longitudinal study of loneliness in autism and other neurodevelopmental disabilities: Coping with loneliness from childhood through adulthood.

关于自闭症和其他神经发育障碍的孤独感的纵向研究：应对从童年到成年的孤独感。

• DOI: 10.1177/13623613231217337
• 发表时间: 2023
• 期刊: Autism : the international journal of research and practice
• 作者: Schiltz,Hillary;Gohari,Dena;Park,Jamie;Lord,Catherine
• 通讯作者: Lord,Catherine

Marital status over 28 years of parents of individuals with autism and other developmental disabilities.

自闭症和其他发育障碍患者的父母的婚姻状况超过 28 岁。

• DOI: 10.1037/fam0001093
• 发表时间: 2023
• 期刊: Journal of family psychology : JFP : journal of the Division of Family Psychology of the American Psychological Association (Division 43)
• 作者: Bahri,Niki;Sterrett,Kyle;Lord,Catherine
• 通讯作者: Lord,Catherine

Teacher- and parent-reported trajectories of maladaptive behaviors among individuals with autism and non-spectrum delays.

教师和家长报告的自闭症和非谱系延迟个体适应不良行为的轨迹。

• DOI: 10.1002/aur.2854
• 发表时间: 2023
• 期刊: Autism research : official journal of the International Society for Autism Research
• 作者: Rosen,NicoleE;Schiltz,HillaryK;Lord,Catherine
• 通讯作者: Lord,Catherine