Engaging Siblings of Adults with Autism in Future Planning

让患有自闭症的成年人的兄弟姐妹参与未来规划

• 批准号: 9520564
• 负责人: Kristin Ann Long
• 金额: $ 7.03万
• 依托单位: BOSTON UNIVERSITY (CHARLES RIVER CAMPUS)
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-02-01 至 2020-01-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9520564
• 关键词: Address; Adult; Advocate; Autistic Disorder; Behavioral; Brothers; Caregivers; Caring; Cessation of life; Characteristics; Clinical Trials; Collaborations; Communication; Communities; Comorbidity; Complex; Continuity of Patient Care; Data; Development; Emotional; Family; Family Planning; Family Relationship; Family member; Feedback; Focus Groups; Future; Future Generations; Geography; Goals; Human; Individual; Intervention; Interview; Knowledge; Life Cycle Stages; Literature; Measures; Motivation; Outcome; Outcome Measure; Parents; Population; Problem Solving; Procedures; Process; Program Acceptability; Provider; Public Health; Quality of life; Randomized Controlled Trials; Readiness; Recruitment Activity; Reporting; Research; Resources; Role; Self Efficacy; Services; Severities; Siblings; Sister; Social support; Socialization; System; Youth; aging population; autism spectrum disorder; behavioral health; behavioral outcome; care systems; caregiving; community organizations; design; evidence base; falls; family structure; flexibility; follow-up; functional outcomes; improved; innovation; intimate behavior; motivational enhancement therapy; preference; programs; psychoeducation; skills; social communication; telehealth

PROJECT SUMMARY/ABSTRACT In the next decade, over one half million youths with autism spectrum disorder (ASD) will enter adulthood. The adult service system is not adequately prepared to meet the needs of this growing population. The burden of coordinating care frequently falls on family members. Siblings are the future generation of caregivers and often become the guardians for their brother or sister with ASD when parents are no longer able to provide care due to illness or death. Yet, siblings are seldom involved in research or support services for the adult with ASD. There is a critical public health need to develop and evaluate programs that enhance sibling involvement in future planning before the crisis of a caregiving transition. The proposed project will develop an innovative program to facilitate adult sibling engagement in family future planning. Siblings FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) targets common barriers to sibling involvement in family future planning, including improving family communication around difficult topics, increasing siblings' knowledge of and confidence in accessing ASD service systems, and anticipating and proactively problem- solving barriers to future planning. The program will be delivered collaboratively with community organizations that support adults with ASD. Siblings will participate in individual, personalized modules. A telehealth approach was chosen to address barriers related to geographical separation. Future planning will include input from the adult with ASD. The program will result in a future plan of action written by the sibling, including concrete next steps. The specific aims are to: (1) develop the Siblings FORWARD program, (2) assess feasibility, and (3) assess the outcomes of sibling participation in the program. The program will be further developed through input from a community advisory board, data from sibling and service provider focus groups, and individual interviews with adults with ASD. Then, a small open trial with 5 siblings will be conducted to assess feasibility and further refine the Siblings FORWARD program. Finally, a pilot randomized controlled trial (RCT) (N=36) will be conducted using a control condition (information only). Pre-, post-, and 3- month follow up data will assess outcomes in siblings (changes skills and knowledge, development of a sibling plan of action) and adults with ASD (unmet service needs, quality of life, family social support). Establishing feasibility and assessing outcomes of the Siblings FORWARD program will inform future larger clinical trials. The availability of an evidence-based future planning program will enable community organizations to better serve this aging population. Ultimately, greater sibling involvement in family future planning will result in optimal independence and functioning in adults with ASD through more seamless continuity of care across the life course of the adult with ASD.

项目摘要/摘要 在接下来的十年中，超过一百万名自闭症谱系障碍（ASD）的年轻人将进入成年。这 成人服务系统没有充分准备满足不断增长的人群的需求。负担 协调护理经常属于家庭成员。兄弟姐妹是未来的护理人员，经常是 当父母不再能够提供护理时，成为其兄弟姐妹的监护人 生病或死亡。然而，兄弟姐妹很少参与ASD成年人的研究或支持服务。 公共卫生需要制定和评估计划，以增强兄弟姐妹参与 照料过渡危机之前的未来计划。拟议的项目将发展创新 计划在家庭未来计划中促进成人兄弟姐妹参与。兄弟姐妹向前（专注于 人际关系，福祉和未来的责任）针对兄弟姐妹参与家庭的共同障碍 未来的计划，包括改善围绕困难主题的家庭沟通，增加兄弟姐妹 了解和对访问ASD服务系统的信心，并预测和主动问题 - 解决未来计划的障碍。该计划将与社区组织合作 支持成年人ASD。兄弟姐妹将参加个性化的个性化模块。远程医疗 选择方法来解决与地理分离有关的障碍。未来的计划将包括输入 来自ASD的成年人。该计划将导致兄弟姐妹制定的未来行动计划，包括 混凝土下一步。具体目的是：（1）制定兄弟姐妹前进计划，（2）评估 可行性和（3）评估同胞参与该计划的结果。该计划将进一步 通过社区顾问委员会的意见，同胞和服务提供商重点的数据开发 小组以及与ASD成年人的个人访谈。然后，将进行5个兄弟姐妹的小型公开试验 进行评估可行性并进一步完善兄弟姐妹远期计划。最后，飞行员随机 对照试验（RCT）（n = 36）将使用控制条件（仅信息）进行。前，后和3- 月后续数据将评估兄弟姐妹的结果（变化技能和知识，兄弟姐妹的发展 行动计划）和具有ASD的成年人（未满足的服务需求，生活质量，家庭社会支持）。建立 可行性和评估兄弟姐妹远期计划的结果将为未来的更大临床试验提供信息。 基于证据的未来计划计划的可用性将使社区组织能够更好 服务于这个老龄化的人口。最终，更多的兄弟姐妹参与家庭未来计划将导致最佳 独立和在ASD的成年人中通过更加无缝的护理连续性在整个生活中发挥作用 成年ASD的过程。