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: 10172939
• 负责人: EDWARD MARK CUMMINGS
• 金额: $ 48.49万
• 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 2024-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10172939
• 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; Expressed Sequence Tags; 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; Personal Satisfaction; Pilot Projects; Prevention; 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 intervention; design; dyadic interaction; 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.

项目摘要/摘要 尽管有智力和发育障碍儿童的家庭（IDD）经验增强了 家庭冲突，压力和调整问题的风险，很少有基于证据的计划来支持它们。 计划很少适合这些家庭的特定需求，并且可用的干预措施不是经验 基于呼叫或严格评估。现有程序无法解决家庭系统，常常忽略 父母和通常发展的兄弟姐妹的福祉。对基于证据的亲人存在批判性需求 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， 以及IDD的个人。我们在此提案中的目标是测试父母，TD兄弟姐妹和 具有适应心理教育和沟通训练方法的IDD儿童 先前已验证的针对社区家庭的预防/干预计划，并检查机制 与4周计划导致的变更过程相关。我们的长期目标是 折磨经验支持的家庭系统方法的可用性和可用性来减少家庭 IDD患者家庭的压力和冲突。我们的中心假设是参与该计划 将支持患有IDD的孩子的家庭的确定需求，改善良好的福祉和调整 ENTS，提高情绪安全性和对TD兄弟姐妹的调整，并与改进有关 IDD个人的自适应功能。这一中心假设得到了有希望的定性证据的支持 DNCE和正在进行的试点研究的初步分析，使用了预科课程中的适应课程 发送建议。我们的理由是，提供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，包括患有IDD的孩子。具体目的是：（1） 终止计划对父母的效率，（2a）确定该计划的效率通常为 在情感安全理论的指导下（EST; Davies＆cum- Mings，1994年），解释由于计划的结果以及为什么以及何时发生变化，以及 （3）检查该计划对IDD个人的影响。家庭（n = 150），其中包括一个有IDD的孩子 和11至17岁之间的TD兄弟姐妹将随机分配给两组之一：（1）父母 并且通常开发兄弟姐妹干预，或（2）仅资源控制。所有家庭的多方法评估 - LY会员将在干预前和后访问以及6个月和1年的随访中获得。 ap- PRACH具有创新性，因为它解决了多个家庭成员的需求，测试有关解释性的理论 计划影响的模型，并利用简短的心理教育格式和RCT设计来评估其 效率。这项研究很重要，因为它将为家庭系统创建廉价的模型计划 - 对患有IDD的儿童家庭的水平干预措施，使父母，兄弟姐妹和患有IDD的孩子受益，包括 评估常设社区中心的计划有效性。