Developing a Measure of Key Adult Outcomes in Adults with Developmental Disabilities: Conceptual Model and Item Generation of the REALS (Relationships, Employment, Autonomy, and Life Satisfaction).

IF 3.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Journal of Autism and Developmental Disorders Pub Date : 2025-02-01 Epub Date: 2024-01-30 DOI:10.1007/s10803-023-06219-9
Kristen T MacKenzie, Kelly B Beck, Shaun M Eack, Katharine N Zeglen, Caitlin M Conner, Carla A Mazefsky
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Abstract

Employment, social relationships, and autonomy are priorities to people with intellectual and developmental disabilities (IDDs). However, few validated measures exist to systematically assess these key adult outcomes in this population. This research includes first steps to develop self- and proxy report measures of life outcomes for adults with IDDs-the Relationships, Employment, Autonomy, and Life Satisfaction (REALS). A literature search identified existing adult outcome measures, and comparison of their domains informed initial conceptual model development. External consultants revised the model, and items were generated. Autistic adults (n = 15), adults with other IDDs (n = 7), caregivers of autistic adults (n = 13), and caregivers of adults with other IDDs (n = 10) completed in-depth cognitive interviews to assess comprehension of items and response categories, factors influencing how participants respond to items, and the inclusiveness of the item pool. A final conceptual model was generated with three subdomains (social relationships, employment, and autonomy), including assessment of life satisfaction within each domain. Cognitive interviews revealed that response set restructuring and item-level revisions were needed to capture the complexity of adult life and make the measure more accessible across a range of abilities. This study developed a conceptual model of relationships, work, and autonomy specific to adults with IDDs. Future work will involve collecting data from 800 + self-reporters with IDDs and 800 + caregivers of adults with IDDs to conduct psychometric analyses. Improving measurement in this area is critical to better understanding the needs of adults with IDDs and improving services available to them.

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开发一项衡量发育障碍成人主要成人成果的指标:REALS(关系、就业、自主和生活满意度)的概念模型和项目生成。
对于智力和发育障碍(IDDs)患者来说,就业、社会关系和自主性是优先考虑的问题。然而,目前很少有经过验证的测量方法来系统地评估这类人群的这些关键成人成果。本研究包括为 IDDs 成人开发自我和代理报告生活结果测量方法的第一步--关系、就业、自主和生活满意度(REALS)。通过文献检索确定了现有的成人生活结果测量方法,并对其领域进行了比较,为初步概念模型的开发提供了依据。外部顾问对模型进行了修订,并生成了项目。自闭症成人(n = 15)、患有其他 IDD 的成人(n = 7)、自闭症成人的照顾者(n = 13)以及患有其他 IDD 的成人的照顾者(n = 10)完成了深入的认知访谈,以评估对项目和反应类别的理解、影响参与者如何对项目做出反应的因素以及项目库的包容性。最终形成的概念模型包含三个子领域(社会关系、就业和自主),包括对每个领域内生活满意度的评估。认知访谈显示,需要对反应集进行重组,并对项目进行修订,以反映成人生活的复杂性,并使不同能力的人更容易接受该测量。这项研究为患有 IDD 的成年人建立了一个关于人际关系、工作和自主性的概念模型。未来的工作将包括收集 800 多名智障成人自我报告者和 800 多名智障成人照顾者的数据,以进行心理测量分析。改进该领域的测量对于更好地了解智障成人的需求和改善为他们提供的服务至关重要。
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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.
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