A Longitudinal Mixed-Methods Characterization of Family Support from Adolescence to Young Adulthood in Autism and Other Developmental Disabilities.

IF 3.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Journal of Autism and Developmental Disorders Pub Date : 2024-09-01 Epub Date: 2023-09-05 DOI:10.1007/s10803-023-06070-y
Hillary K Schiltz, Elaine Clarke, Nicole Rosen, Sofi Gomez De La Rosa, Nina Masjedi, Kourtney Christopher, Catherine Lord
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Abstract

Although caregiving responsibilities and need for support persist and evolve across the life course in families with autistic youth or youth with other developmental disabilities (DDs), little is known about support during their child's adulthood years. Therefore, the present study used a mixed-methods approach to examine change and stability in formal and informal family support across the transition to adulthood. Caregivers of 126 individuals with autism or DDs completed a modified version of the Family Support Scale, including open-ended questions, at five time points from adolescence (age 16) into young adulthood (age 22). Caregivers reported that informal support from family members was the most frequently used, helpful, and valued source of support with relative stability across time. In contrast, the reported helpfulness, use, and value of formal support (e.g., professionals, schools) for caregivers declined over time. Qualitative content analyses revealed characteristics of highly valued support included support type (e.g., instrumental or emotional) and features of the support source (e.g., their understanding). There was a shift to valuing emotional support more than instrumental support over time, especially for caregivers of less able adults. Partnership and dependability emerged as highly valued features of the support source. These findings fit within a social convoy perspective and likely reflect the "service cliff" experienced by autistic individuals or people with DDs and their families. As social networks shrink over time and formal services are less readily available in adulthood, remaining sources of support, particularly from family members, become increasingly important.

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自闭症和其他发育障碍患者从青春期到成年期家庭支持的纵向混合方法特征。
虽然自闭症青少年或其他发育障碍(DDs)青少年家庭的照顾责任和支持需求在整个生命过程中持续存在并不断变化,但人们对其子女成年后的支持却知之甚少。因此,本研究采用了一种混合方法来考察正式和非正式家庭支持在向成年过渡期间的变化和稳定性。126 名自闭症或残疾人士的照顾者在从青春期(16 岁)到青年期(22 岁)的五个时间点填写了家庭支持量表的修订版,其中包括开放式问题。照护者报告说,来自家庭成员的非正式支持是最经常使用、最有帮助、最受重视的支持来源,而且在不同时期相对稳定。相反,正式支持(如专业人士、学校)对照顾者的帮助、使用和价值随着时间的推移而下降。定性内容分析显示,受到高度重视的支持的特征包括支持类型(如工具性或情感性)和支持来源的特征(如他们的理解能力)。随着时间的推移,情感支持比工具支持更受重视,尤其是对于能力较弱的成年人的照顾者而言。伙伴关系和可依赖性是支持来源的重要特征。这些发现符合社会护航的观点,很可能反映了自闭症患者或残疾人士及其家人所经历的 "服务悬崖"。随着时间的推移,社会网络逐渐萎缩,成年后较难获得正规服务,剩余的支持来源,尤其是来自家庭成员的支持,变得越来越重要。
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来源期刊
CiteScore
8.00
自引率
10.30%
发文量
433
期刊介绍: The Journal of Autism and Developmental Disorders seeks to advance theoretical and applied research as well as examine and evaluate clinical diagnoses and treatments for autism and related disabilities. JADD encourages research submissions on the causes of ASDs and related disorders, including genetic, immunological, and environmental factors; diagnosis and assessment tools (e.g., for early detection as well as behavioral and communications characteristics); and prevention and treatment options. Sample topics include: Social responsiveness in young children with autism Advances in diagnosing and reporting autism Omega-3 fatty acids to treat autism symptoms Parental and child adherence to behavioral and medical treatments for autism Increasing independent task completion by students with autism spectrum disorder Does laughter differ in children with autism? Predicting ASD diagnosis and social impairment in younger siblings of children with autism The effects of psychotropic and nonpsychotropic medication with adolescents and adults with ASD Increasing independence for individuals with ASDs Group interventions to promote social skills in school-aged children with ASDs Standard diagnostic measures for ASDs Substance abuse in adults with autism Differentiating between ADHD and autism symptoms Social competence and social skills training and interventions for children with ASDs Therapeutic horseback riding and social functioning in children with autism Authors and readers of the Journal of Autism and Developmental Disorders include sch olars, researchers, professionals, policy makers, and graduate students from a broad range of cross-disciplines, including developmental, clinical child, and school psychology; pediatrics; psychiatry; education; social work and counseling; speech, communication, and physical therapy; medicine and neuroscience; and public health.
期刊最新文献
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