Developing a Scalable FASD-Informed Person-Centered Planning Intervention

制定可扩展的 FASD 知情的以人为中心的规划干预措施

• 批准号: 10644186
• 负责人: CHRISTIE Lynn McGee Petrenko
• 金额: $ 19.32万
• 依托单位: UNIVERSITY OF ROCHESTER
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-20 至 2025-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10644186
• 关键词: Address; Adolescent; Adolescent and Young Adult; Adult; Advocate; Age; Attention; Awareness; Caring; Communities; Community Participation; Competence; Complex; Data; Decision Making; Development; Developmental Disabilities; Disabled Persons; Documentation; Evaluation; Evidence based intervention; Family; Fetal Alcohol Spectrum Disorder; Fostering; Future; Geography; Goals; Group Interviews; Group Meetings; Health Sciences; Individual; Intervention; Interview; Literature; Logic; Measures; Mental Health; Methodology; Methods; Modeling; Monitor; Neurobehavioral Manifestations; Outcome; Participant; Pathway Analysis; Patient Self-Report; Persons; Phase; Population; Positioning Attribute; Preparation; Procedures; Process; Production; Protocols documentation; Psychology; Public Health; Quality of life; Randomized; Randomized, Controlled Trials; Records; Research; Research Activity; Resources; Sampling; Self Determination; Services; Social Environment; Social Network; Social support; Specific qualifier value; Structure; System; Target Populations; Technology; Testing; Translations; Work; acceptability and feasibility; barrier to care; care systems; community setting; comparison group; critical developmental period; design; digital tool; effectiveness outcome; effectiveness/implementation hybrid; effectiveness/implementation trial; empowerment; evidence base; experience; follow-up; implementation framework; implementation outcomes; implementation science; improved; intervention mapping; intervention refinement; member; multidisciplinary; person centered; physical conditioning; pilot trial; programs; recruit; satisfaction; service utilization; social stigma; support network; system-level barriers; theories; trial design; usability

Project Summary/Abstract People with fetal alcohol spectrum disorders (FASD) experience barriers to care and a lower quality of life (QOL). FASD- informed services and supports are lacking, especially during the transition to adulthood – a critical developmental period for QOL. The proposed project will develop and initiate testing of a scalable person-centered planning (PCP) intervention to support QOL for adolescents and adults with FASD. PCP is an evidence-based intervention for people with disabilities. Research suggests PCP is a good fit FASD; however, it has yet to be adapted or tested with this population. In this project, we will use rigorous implementation science frameworks to systematically adapt and test a PCP intervention for adolescents and adults with FASD. Given the importance of social support networks in PCP, we will also draw upon the growing literature and team expertise on social network interventions to inform the development and evaluation of the intervention. Consistent with other interventions in our lab, we expect the proposed intervention to leverage technology to offer scalable solutions to overcome current barriers to care. During the R61 phase of the project, we will use the implementation science framework “Intervention Mapping – Adapt” to carefully adapt the core principles and methods of PCP and social network interventions for FASD. This 6-step process involves a planning team of people with FASD and other stakeholders and careful attention to theory and logic models to guide adaptation decisions. Based on our preliminary logic models, self-determination theory is a strong fit with the proposed intervention that we are currently calling “Thrive.” Additional research activities in Aim 1 will also inform the planning group’s decision making as they refine logic models, determine intervention structure and components, develop materials, and finalize evaluation procedures. Specifically in Aim 1a, we will conduct individual and group interviews with adolescents and adults with FASD and members of their social networks to characterize key features of their support networks that may be amenable to intervention. Following initial production of intervention materials, we will complete two rounds of usability testing (5 participants per round) in Aim 1b to aid in refining intervention materials and evaluation procedures for the pilot randomized controlled trial (RCT) in the R33 phase. Following successful attainment of R61 milestones, we will conduct a type 1 hybrid effectiveness-implementation pilot RCT of the developed Thrive intervention (R33). This trial design involves gathering data on both effectiveness and implementation outcomes, which will help us optimize the intervention for future larger-scale trials and more rapid translation into community settings. We will recruit 60 adolescents and adults (ages 15-30) with FASD to participate in the pilot RCT, with random assignment to the 1) Thrive PCP intervention or 2) comparison group receiving social network and strengths assessments only. Although significance testing and effect sizes will be calculated, a larger emphasis will be placed on feasibility to guide the design of a fully powered larger-scale RCT R01 application. For example, in addition to the feasibility of the intervention itself, we will assess feasibility of recruitment and trial procedures, sensitivity of measures to intervention change, and intervention process. Our proposed PCP intervention has high potential to improve QOL of people with FASD at the critical transition to adulthood.

项目总结/摘要 患有胎儿酒精谱系障碍（FASD）的人会遇到护理障碍和生活质量（QOL）降低。FASD- 缺乏知情的服务和支持，特别是在向成年过渡期间-一个关键的发展时期 对于QOL。拟议的项目将开发和启动一个可扩展的以人为中心的规划（PCP）干预测试 支持患有FASD的青少年和成人的生活质量。PCP是针对残疾人的循证干预措施。 研究表明，五氯苯酚是一种很好的适合FASD;然而，它还没有适应或测试这一人群。在这个项目中， 我们将使用严格的实施科学框架，系统地调整和测试PCP干预措施， 患有FASD的青少年和成人。鉴于社会支持网络在PCP中的重要性，我们还将借鉴 关于社会网络干预措施的文献和团队专业知识不断增加，为发展和评估 干预与我们实验室的其他干预措施一致，我们希望拟议的干预措施能够利用技术， 提供可扩展的解决方案，以克服当前的护理障碍。在项目的R61阶段，我们将使用 实施科学框架“干预绘图-适应”，认真调整核心原则和方法， PCP和FASD的社会网络干预。这6个步骤的过程涉及一个规划团队的人与FASD和 其他利害关系方，并认真注意指导适应决策的理论和逻辑模型。基于我们 初步的逻辑模型，自我决定理论是一个强有力的适合与建议的干预，我们目前 叫“茁壮成长”目标1中的其他研究活动也将为规划小组的决策提供信息， 完善逻辑模型，确定干预结构和组成部分，编写材料，完成评估 程序.具体而言，在目标1a中，我们将对青少年和成年人进行个人和小组访谈， FASD及其社交网络成员，以描述其支持网络的关键特征，这些特征可能适用于 干预。在初步制作干预材料之后，我们将完成两轮可用性测试（5 目标1b中的每轮参与者），以帮助完善试点的干预材料和评估程序 R33期随机对照试验（RCT）。在成功实现R61里程碑后，我们将开展 开发的Thrive干预（R33）的1型混合有效性-实施试点RCT。本试验设计 包括收集关于有效性和实施结果的数据，这将有助于我们优化干预措施， 以便将来进行更大规模的试验，并更快地转化为社区环境。我们将招募60名青少年和成年人 (ages 15-30）FASD患者参加试点RCT，随机分配1）Thrive PCP干预或2） 对照组仅接受社会网络和优势评估。虽然显著性检验和效应量 将被计算，一个更大的重点将放在可行性，以指导设计一个完全动力的大规模RCT R 01应用程序。例如，除了干预本身的可行性外，我们还将评估 招募和试验程序、措施对干预变化的敏感性以及干预过程。我们提出的 PCP干预具有很高的潜力，以改善生活质量的人与FASD在关键过渡到成年。