A longitudinal study identifying psychological and service delivery targets to improve daily living skills and quality of life outcomes among transition-age autistic youth

一项纵向研究，确定心理和服务提供目标，以提高过渡年龄自闭症青少年的日常生活技能和生活质量

• 批准号: 10719680
• 负责人: LAUREN KENWORTHY
• 金额: $ 83.91万
• 依托单位: CHILDREN'S HOSP OF PHILADELPHIA
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-06-01 至 2028-03-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10719680
• 关键词: Accounting; Address; Adolescence; Adult; Advocate; Age; Automobile Driving; Caregivers; Childhood; Cognitive; Communities; Data; Development; Documentation; Employment; Employment Opportunities; Enrollment; Ensure; Environmental Risk Factor; Equity; Ethnic Origin; Family; Gender; Happiness; Health Promotion; Health Services Accessibility; Health education; Healthcare; Home; Income; Independent Living; Individual; Instruction; Insurance; Intervention; Knowledge; Legal; Link; Longitudinal Studies; Neighborhoods; Outcome; Participant; Persons; Play; Policies; Privatization; Productivity; Psychological Factors; Public Health; Quality of life; Race; Research; Research Priority; Resources; Role; Sampling; Sampling Biases; Schools; Secondary Schools; Self Care; Self Determination; Service provision; Services; Site; Social Justice; Societal Factors; Societies; System; Talents; Teenagers; Testing; Time; Visit; Work; Youth; access disparities; adolescent with autism spectrum disorder; adult with autism spectrum disorder; age group; autism spectrum disorder; autistic; caregiver education; community living; emerging adult; ethnoracial; evaporation; executive function; experience; gender diversity; high school; improved; independent self care; indexing; intervention delivery; longitudinal, prospective study; non-verbal; prevent; psychologic; recruit; service delivery; service engagement; sex; sex assigned at birth; skills; social engagement; social health determinants; targeted delivery

PROJECT ABSTRACT Approximately 1 million autistics will turn 18 in the next decade, many without the skills they need to achieve the quality-of-life that they and their families’ desire. Without effective supports, autistic youth struggle with daily living skills, regardless of their intellectual abilities. Daily living skills are fundamental to independence, paid employment, and better quality-of-life for autistic adults. Existing daily living skill interventions for this age group have only modest effects or show poor generalization to real world settings. Current treatments rely on explicit instruction of specific daily living skills (e.g., the steps for taking a shower), and they lack inclusion of mutable psychological factors that support the development and generalization of daily living skills. Treatments are further limited by inadequate knowledge of how social determinants of health (e.g., family income, community resources) contribute to daily living skills. Identification of mutable psychological factors and social determinants of health driving change in daily living skills for transition-age autistic youth is a vital to improving public health and social justice. This knowledge will identify pivotal intervention and service delivery targets for improving daily living skills. Better executive function and self-determination skills are associated with more advanced daily living skills, and both factors improve with treatment in autism. Our central scientific premise is that interventions for daily living skills, and the service delivery systems that promote them, will be enhanced with greater knowledge of psychological and systemic factors that directly impact these skills. Further, enhanced daily living skills will result in downstream improvements in quality-of-life and productivity. This project will address gaps in our knowledge with a prospective longitudinal study that evaluates psychological factors that drive change in daily living skills during the time when autistic youth exit high school (AIM 1), as well as the impact of daily living skills on quality-of-life (AIM 2). We will also explore the influence of both individual- (e.g., family income) and neighborhood-level (childhood opportunity index) factors on daily living skills (AIM 3). Finally, there is a general need for large representative samples (i.e., IQ range, speaking/nonspeaking, sex-assigned-at-birth, gender, race, ethnicity). The proposed longitudinal study will contain 3 visits (T1: baseline, T2: +1 yr., T3: +2 yrs.; final N=170). Our recruitment strategy will ensure all participants have at least one timepoint pre- and post-high school exit. We predict: AIM 1, H1) executive function and self-determination will explain significant variance in concurrent daily living skills above covariates; AIM 1, H2a,b) executive functioning and self-determination at baseline will predict daily living skills at T3 and change in daily living skills over time above covariates; AIM 2, H3a,b) larger increases in daily living skills will predict better objective and subjective quality-of-life and better change in quality-of-life over time. In AIM 3, we explore both direct and indirect effects of social determinants of health. This project will generate critical knowledge for enhancing daily living skills interventions and delivery systems that will improve long-term outcomes for autistic adults and increase equitable access to services.

项目摘要