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.

项目摘要/摘要 患有胎儿酒精谱系障碍（FASD）的人会经历护理障碍和生活质量较低的障碍（QOL）。 fasd- 缺乏知情的服务和支持，尤其是在过渡到成年期间 - 一个关键的发展时期 用于QOL。拟议的项目将开发并启动以人为本的计划（PCP）干预的测试 为青少年和FASD的成年人提供支持。 PCP是针对残疾人的基于证据的干预措施。 研究表明，PCP是一个很好的FASD。但是，它尚未对该人群进行调整或测试。在这个项目中， 我们将使用严格的实施科学框架系统地适应和测试PCP干预措施 青少年和成年人有FASD。鉴于社会支持网络在PCP中的重要性，我们还将利用 越来越多的文学和团队专业知识知识在社交网络干预措施上为开发和评估提供信息 干涉。与我们实验室中其他干预措施一致，我们希望拟议的干预措施利用技术来 提供可扩展的解决方案来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“干预映射 - 适应”，以仔细调整核心原则和方法 FASD的PCP和社交网络干预措施。这个6步的过程涉及一个有FASD的人的规划团队， 其他利益相关者以及对理论和逻辑模型的谨慎关注，以指导适应决策。基于我们 初步逻辑模型，自决理论与我们目前所提出的干预措施非常吻合 称“蓬勃发展”。 AIM 1中的其他研究活动还将为计划小组的决策提供信息 完善逻辑模型，确定干预结构和组件，开发材料并确定评估 程序。特别是在AIM 1A中，我们将与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表征其支持网络的关键特征，这可能是可正常的 干预。在初始生产干预材料之后，我们将完成两轮可用性测试（5 AIM 1B中的参与者每轮），以帮助提炼干预材料和飞行员评估程序 R33阶段的随机对照试验（RCT）。在成功尝试R61里程碑之后，我们将进行 开发的繁殖干预措施（R33）的1型混合有效性 - 实现驾驶员RCT。这个试验设计 涉及收集有关有效性和实施结果的数据，这将有助于我们优化干预措施 用于将来的大规模试验，并更快地转化为社区环境。我们将招募60名青少年和成人 （15-30岁）与FASD一起参加飞行员RCT，并随机分配为1）PCP干预或2） 比较小组仅接受社交网络和优势评估。尽管显着性测试和效果大小 将计算出来，更大的重点将放在指导完全动力大型RCT的设计的可行性上 R01应用程序。例如，除了干预本身的可行性外，我们还将评估 招聘和试验程序，对干预变化的敏感性以及干预过程。我们提出的 PCP干预在临界过渡到成年期间的FASD患者的QoL具有很高的潜力。