Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a "CBPR-Nested Delphi Process".

IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL
Autism Pub Date : 2025-06-05 DOI:10.1177/13623613251322082
Christina Nicolaidis, Mirah Scharer, Dora M Raymaker, Joseph Vera, Todd Edwards, Ian Moura, Mary Baker-Ericzén, Joelle Maslak, Liu-Qin Yang, Rachel Kripke-Ludwig, Steven K Kapp, Andrea Joyce, Anna Wallington
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引用次数: 0

Abstract

People are increasingly recognizing the need for service interventions to improve the lives of autistic adults. However, less is known about how to best evaluate such services. We aimed to identify (1) which self-reported outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) what survey instruments would be needed to measure them. We nested a traditional researcher-driven "Delphi process" within our community-based participatory research approach in what we are calling a "CBPR-Nested Delphi Process." The process allowed us to reach a full consensus among 53 experts with professional and lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers. The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available instruments to measure these outcomes would need adaptations to be used with autistic adults (or proxies). Researchers and service providers should consider targeting interventions to these measurable outcomes and evaluating them using instruments that have been co-developed with autistic adults.Lay abstractWhy was this project done?People are starting to recognize the need for services to improve the lives of autistic adults. But less is known about how to best evaluate such services.What were the goals of the project?To identify (1) which outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) how we can successfully measure them using surveys.What did the researchers do?We used a method called a "Delphi process" that gets input from lots of different experts. We used that method inside our own long-standing community-based participatory research (CBPR) process so that we could share power between the academic and community members of our team. We reached a full consensus (agreement) among 53 experts. These experts had professional and/or lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers.What does this study add?The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available surveys that try to measure these outcomes would need adaptations to be used with autistic adults (or if needed, with their caregivers).What are the implications?Researchers and service providers should consider targeting services to these outcomes. They should evaluate the effectiveness of services using surveys that have been created with and for autistic adults.

在自闭症成人服务评估中使用的高优先级结果的共识:来自“cbpr -嵌套德尔菲过程”的结果。
人们越来越认识到需要服务干预来改善自闭症成年人的生活。然而,人们对如何最好地评估这些服务知之甚少。我们的目的是确定(1)在评估自闭症成人服务的有效性时,哪些自我报告的结果是最重要的衡量标准;(2)需要什么样的调查工具来衡量它们。我们将传统的研究人员驱动的“德尔菲过程”嵌套在我们基于社区的参与式研究方法中,我们称之为“cbpr嵌套德尔菲过程”。这一过程使我们能够在53位具有专业和生活经验的专家、自闭症成年人、家庭成员、健康和残疾服务提供者、自闭症社区领袖和研究人员之间达成全面共识。最终的结果包括生活质量、整体健康、情绪健康、焦虑、抑郁、自杀倾向、自闭症倦怠、社会支持、就业满意度、社区参与、自决、获得沟通、日常生活活动、对社会服务的满意度和对医疗保健服务的满意度。专家们认为,几乎所有可用来衡量这些结果的工具都需要对自闭症成年人(或代理)进行调整。研究人员和服务提供者应考虑针对这些可衡量的结果进行干预,并使用与自闭症成年人共同开发的工具对其进行评估。为什么要做这个项目?人们开始认识到需要提供服务来改善成年自闭症患者的生活。但人们对如何最好地评估这些服务知之甚少。这个项目的目标是什么?确定(1)在评估自闭症成人服务的有效性时,哪些结果是最重要的衡量标准;(2)我们如何通过调查成功地衡量这些结果。研究人员做了什么?我们使用了一种叫做“德尔菲过程”的方法,从许多不同的专家那里得到输入。我们在我们自己的长期社区参与性研究(CBPR)过程中使用了这种方法,这样我们就可以在我们团队的学术和社区成员之间分享权力。我们53位专家达成了完全的共识。这些专家具有作为自闭症成年人、家庭成员、健康和残疾服务提供者、自闭症社区领袖和研究人员的专业和/或生活经验。这项研究补充了什么?最终的结果包括生活质量、整体健康、情绪健康、焦虑、抑郁、自杀倾向、自闭症倦怠、社会支持、就业满意度、社区参与、自决、获得沟通、日常生活活动、对社会服务的满意度和对医疗保健服务的满意度。专家们认为,几乎所有试图衡量这些结果的现有调查都需要进行调整,以便适用于自闭症成年人(或者如果需要的话,适用于他们的照顾者)。这意味着什么?研究人员和服务提供者应该考虑针对这些结果提供服务。他们应该通过调查来评估服务的有效性,这些调查是为自闭症成年人创建的。
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来源期刊
Autism
Autism PSYCHOLOGY, DEVELOPMENTAL-
CiteScore
9.80
自引率
11.50%
发文量
160
期刊介绍: Autism is a major, peer-reviewed, international journal, published 8 times a year, publishing research of direct and practical relevance to help improve the quality of life for individuals with autism or autism-related disorders. It is interdisciplinary in nature, focusing on research in many areas, including: intervention; diagnosis; training; education; translational issues related to neuroscience, medical and genetic issues of practical import; psychological processes; evaluation of particular therapies; quality of life; family needs; and epidemiological research. Autism provides a major international forum for peer-reviewed research of direct and practical relevance to improving the quality of life for individuals with autism or autism-related disorders. The journal''s success and popularity reflect the recent worldwide growth in the research and understanding of autistic spectrum disorders, and the consequent impact on the provision of treatment and care. Autism is interdisciplinary in nature, focusing on evaluative research in all areas, including: intervention, diagnosis, training, education, neuroscience, psychological processes, evaluation of particular therapies, quality of life issues, family issues and family services, medical and genetic issues, epidemiological research.
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