Families of Youth with Developmental Disabilities: A Theory-Based Intervention

发育障碍青少年家庭：基于理论的干预

• 批准号: 9311139
• 负责人: EDWARD MARK CUMMINGS
• 金额: $ 57.36万
• 依托单位: UNIVERSITY OF NOTRE DAME
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-08-04 至 2022-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9311139
• 关键词: 17 year old; Address; Adolescent; Age; Behavioral; Characteristics; Child; Child Rearing; Clinical Trials Design; Communication; Communities; Conflict (Psychology); Data Analyses; Development; Developmental Disabilities; Diagnosis; Dropout; Educational Curriculum; Effectiveness; Emotional; Environment; Evidence based program; Face; Family; Family member; Fathers; Feedback; Gender; Goals; High Prevalence; Individual; Intellectual functioning disability; Intervention; Knowledge; Marital Relationships; Mediating; Methods; Mission; Modeling; Mothers; National Institute of Child Health and Human Development; Outcome; Parent-Child Relations; Parents; Participant; Pilot Projects; Preventive Intervention; Process; Program Effectiveness; Program Evaluation; Public Health; Randomized; Research; Resources; Risk; Risk Adjustment; Risk Factors; Security; Siblings; Stress; System; Testing; Training; Visit; Youth; base; community center; conflict resolution; cost effective; design; dyadic interaction; effective intervention; efficacy testing; evidence base; expectation; experience; family support; improved; innovation; intervention program; member; neglect; post intervention; programs; psychoeducational; psychoeducational intervention; response; satisfaction; theories

Project Summary/Abstract Although families with children with intellectual and developmental disabilities (IDD) experience heightened family conflict, stress and risk for adjustment problems, few evidence-based programs exist to support them. Programs are rarely adapted to these families’ specific needs, and the available interventions are not empiri- cally-based or rigorously evaluated. Existing programs fail to address the family system, often ignoring the well-being of parents and typically developing (TD) siblings. A critical need exists for an evidence-based pro- gram to ameliorate the impact of family stress and conflict on the overall well-being of parents and TD siblings, as well as individuals with IDD. Our objective in this proposal is to test the efficacy for parents, TD siblings, and children with IDD of an adaptation of the psycho-educational and communication training approach used in a previously validated prevention/intervention program for community families, and to examine the mechanisms associated with change processes that occur as a result of the 4-week program. Our long-term goal is to in- crease the availability and affordability of empirically-supported family-systems approaches to reduce family stress and conflict in families of individuals with IDD. Our central hypothesis is that participation in the program will support the identified needs of families with a child with IDD, improve the well-being and adjustment of par- ents, increase emotional security and adjustment for TD siblings, and be associated with improvements in adaptive functioning for individuals with IDD. This central hypothesis is supported by promising qualitative evi- dence and preliminary analyses from an ongoing pilot study using the adapted curriculum included in the pre- sent proposal. Our rationale is that providing a family-systems approach to improving the family environment will support the well-being of each family member, including the child with IDD. The specific aims are: (1) de- termining the efficacy of the program for parents, (2a) determining the efficacy of the program for typically de- veloping siblings, (2b) testing process models, guided by the Emotional Security Theory (EST; Davies & Cum- mings, 1994), to explain how and why and for whom and when changes occur as a result of the program, and (3) examining the impact of the program on individuals with IDD. Families (n=150) that include a child with IDD and a TD sibling between 11 and 17 years of age, will be randomly assigned to one of two groups: (1) parent and typically developing sibling intervention, or (2) resource only control. Multi-method assessments of all fami- ly members will be obtained at pre- and post-intervention visits, and 6-month and 1-year follow-ups. The ap- proach is innovative because it addresses multiple family members’ needs, tests theory about explanatory models for program impact, and utilizes a brief, psycho-educational format and a RCT design to evaluate its efficacy. This research is significant because it will create an inexpensive model program for family-system- level interventions for families of children with IDD, benefiting parents, siblings and the child with IDD, including evaluations of program effectiveness in standing community centers.

项目概要/摘要 尽管有智力和发育障碍 (IDD) 儿童的家庭会经历呼吸 家庭冲突、压力和适应问题的风险，很少有基于证据的计划可以支持这些问题。 计划很少适应这些家庭的具体需求，而且可用的干预措施也不是经验性的。 现有的计划未能解决家庭系统问题，往往忽视了家庭系统的问题。 父母和正常发育（TD）兄弟姐妹的福祉迫切需要基于证据的支持。 克以减轻家庭压力和冲突对父母和 TD 兄弟姐妹整体福祉的影响， 我们本提案的目标是测试对父母、TD 兄弟姐妹和患有 IDD 的人的功效。 患有 IDD 的儿童接受心理教育和沟通培训方法的改编 先前验证的社区家庭预防/干预计划，并检查其机制 与为期 4 周的计划所发生的变革流程相关。我们的长期目标是： 提高经验支持的家庭系统方法的可用性和可负担性，以减少家庭 我们的中心假设是参与该计划会影响 IDD 患者家庭的压力和冲突。 将支持有 IDD 儿童的家庭的明确需求，改善他们的福祉和调整 增强 TD 兄弟姐妹的情绪安全感和适应能力，并与改善 IDD 患者的适应性功能得到了有希望的定性证据的支持。 使用预科课程中包含的改编课程进行的正在进行的试点研究的初步分析和初步分析 我们提出建议的理由是提供家庭系统方法来改善家庭环境。 将支持每个家庭成员的福祉，包括患有 IDD 的儿童。具体目标是：(1) 终止该计划对家长的有效性，(2a) 确定该计划对通常情况下的儿童的有效性 发展兄弟姐妹，(2b) 测试过程模型，以情感安全理论（EST；Davies & Cum- mings，1994），解释该计划如何、为何、为谁以及何时发生变化，以及 (3) 检查该计划对包含 IDD 儿童的 IDD 家庭 (n=150) 的影响。 以及年龄在 11 至 17 岁之间的 TD 兄弟姐妹，将被随机分配到以下两组之一：(1) 家长 并发展典型的兄弟干预，或（2）仅资源控制。 ly 成员将在干预前和干预后访视以及 6 个月和 1 年的随访中获得。 Proach 是创新的，因为它解决了多个家庭成员的需求，测试了关于解释性的理论 项目影响模型，并利用简短的心理教育格式和随机对照试验设计来评估其 这项研究意义重大，因为它将为家庭系统创建一个廉价的模型程序。 对患有智力障碍儿童的家庭进行水平干预，使父母、兄弟姐妹和患有智力障碍的儿童受益，包括 对常设社区中心的计划有效性进行评估。