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: 9213200
• 负责人: Kristin Ann Long
• 金额: $ 24.68万
• 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/9213200
• 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.

项目总结/摘要 在未来十年中，超过50万患有自闭症谱系障碍（ASD）的年轻人将进入成年期。的 成人服务系统的准备不足，不能满足不断增长的人口的需要。的负担 协调护理的工作往往由家庭成员福尔斯承担。西塞尼奥是未来一代的照顾者， 当父母不再能够提供应有的照顾时， 生病或死亡。然而，兄弟姐妹很少参与研究或为ASD成年人提供支持服务。 有一个关键的公共卫生需要制定和评估计划，加强兄弟姐妹参与， 在过渡危机之前的未来规划。该项目将开发一种创新的 促进成年兄弟姐妹参与家庭未来规划的方案。Sixth Forward（聚焦于 关系、幸福感和责任感课程针对的是兄弟姐妹参与家庭生活的常见障碍 未来的规划，包括改善家庭围绕困难话题的沟通，增加兄弟姐妹的 了解并有信心访问ASD服务系统，并预测和主动解决问题- 解决未来规划的障碍。该计划将与社区组织合作交付 支持自闭症患者的机构SIEMENS将参与个人化的个性化模块。远程医疗 选择这种办法是为了解决与地域分隔有关的障碍。未来规划将包括投入 自闭症的成年人。该计划将导致由兄弟姐妹编写的未来行动计划，包括 具体的下一步。具体目标是：（1）制定SixtyForward计划，（2）评估 可行性，以及（3）评估兄弟姐妹参与计划的结果。该计划将进一步 通过社区咨询委员会的投入、兄弟姐妹和服务提供者的数据制定了重点 小组和与ASD成年人的个人访谈。然后，一个有5个兄弟姐妹的小型开放试验将在 进行了评估的可行性和进一步完善的SixtyForward计划。最后，一名飞行员随机 对照试验（RCT）（N=36）将使用对照条件进行（仅供参考）。术前、术后和3- 一个月的随访数据将评估兄弟姐妹的结局（技能和知识的变化，兄弟姐妹的发展 行动计划）和ASD成年人（未满足的服务需求，生活质量，家庭社会支持）。建立 SIBRISFORWARD项目的可行性和评估结果将为未来更大规模的临床试验提供信息。 基于证据的未来规划计划的可用性将使社区组织能够更好地 为老龄化人口服务最后，兄弟姐妹更多地参与家庭未来规划将导致最佳的 通过在整个生命中更无缝的连续性护理， 成人ASD患者的病程。