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.

项目总结/摘要 虽然有智力和发育障碍儿童的家庭经历了更高的 家庭冲突、压力和调整问题的风险，很少有基于证据的方案来支持他们。 方案很少适应这些家庭的具体需要，现有的干预措施也不是空穴来风。 严格评估或严格评估。现有的计划未能解决家庭系统，往往忽视了家庭的重要性。 父母和发育中的兄弟姐妹（TD）的幸福。一个关键的需要存在的证据为基础的亲， 克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， 以及IDD患者。我们在本提案中的目标是测试父母、TD兄弟姐妹和 采用心理教育和沟通培训方法， 以前验证的社区家庭预防/干预方案，并审查机制 与作为4周计划的结果而发生的变更过程相关。我们的长期目标是-- 增加获得医疗支助的家庭系统办法的可获得性和可负担性， 缺碘症患者家庭压力和冲突。我们的中心假设是参与这个项目 将支持有缺碘症儿童的家庭的确定需求，改善福利和调整标准， 增加TD兄弟姐妹的情绪安全感和适应能力，并与以下方面的改善相关： 适应功能的个体与IDD。这一中心假设得到了有希望的定性证据的支持。 根据一项正在进行的试点研究的证据和初步分析， 发送提案。我们的理论基础是，提供一个家庭系统的方法来改善家庭环境， 将支持每个家庭成员的福祉，包括患缺碘症的儿童。具体目标是：（1） 确定该计划对父母的功效，（2a）确定该计划对典型地确定 兄弟姐妹，（2b）测试过程模型，由情绪安全理论（EST;戴维斯和暨- mings，1994年），以解释如何和为什么以及为谁和何时发生变化作为程序的结果， (3)研究该方案对缺碘症患者的影响。家庭（n=150），包括患有IDD的儿童 和11至17岁的TD兄弟姐妹，将被随机分配到两组之一：（1）父母 并且通常发展兄弟姐妹干预，或（2）仅资源控制。对所有家庭进行多方法评估- 将在干预前和干预后访视以及6个月和1年随访时获得ly成员。该ap- proach是创新的，因为它解决了多个家庭成员的需求，测试理论解释 模型的计划影响，并利用一个简短的，心理教育的格式和随机对照试验设计，以评估其 功效这项研究意义重大，因为它将为家庭系统创建一个廉价的模式程序， 为缺碘症儿童的家庭采取一级干预措施，使父母、兄弟姐妹和缺碘症儿童受益，包括 评估常设社区中心的方案效果。