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

基本信息

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
项目类别：
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

项目摘要

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.

项目概要/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) 较低。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拟议的项目将开发并启动可扩展的以人为本的规划（PCP）干预措施的测试。支持患有 FASD 的青少年和成人的生活质量是一项针对残疾人的循证干预措施。研究表明，PCP 非常适合 FASD；但是，在该项目中，它尚未经过调整或测试。我们将使用严格的科学框架来系统地调整和测试 PCP 干预措施鉴于社会支持网络在 PCP 中的重要性，我们还将利用不断增加有关社交网络干预的文献和团队专业知识，为社交网络干预措施的开发和评估提供信息与我们实验室的其他干预措施一致，我们预计拟议的干预措施将利用技术来实现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”，仔细调整干预措施的核心原则和方法针对 FASD 的 PCP 和社交网络干预这个 6 步流程涉及一个由 FASD 患者和患者组成的规划团队。其他利益相关者并认真关注理论和逻辑模型，以指导我们的适应决策。根据初步逻辑模型，自决理论与我们目前提出的干预措施非常吻合目标 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，开发材料并最终确定评估具体而言，在目标 1a 中，我们将对患有以下疾病的青少年和成人进行个人和小组访谈。 FASD 及其社交网络成员描述其支持网络的关键特征，这些特征可能是顺从的初步制作干预材料后，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在成功实现 R61 里程碑后，我们将进行 R33 阶段的随机对照试验 (RCT)。开发的 Thrive 干预 (R33) 的 1 型混合有效性实施试点随机对照试验 (R33)。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为了未来更大规模的试验和更快地转化为社区环境，我们将招募 60 名青少年和成年人。（15-30 岁）患有 FASD 参加试点随机对照试验，随机分配到 1) Thrive PCP 干预或 2) 对照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。将更加重视计算的可行性，以指导全动力大型 RCT 的设计例如R01应用，除了干预本身的可行性之外，我们还会评估以下项目的可行性。招募和试验程序、措施对干预变化的敏感性以及干预过程。 PCP 干预对于改善 FASD 患者在向成年过渡的关键时期的生活质量具有很大潜力。