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 在接下来的十年里，超过50万患有自闭症谱系障碍(ASD)的青少年将进入成年期。这个 成人服务系统没有做好充分准备，以满足不断增长的人口的需求。背负着 协调照顾经常落在家庭成员的肩上。兄弟姐妹是照顾者的下一代，通常 当父母不再能够提供应有的照顾时，成为患有自闭症的兄弟或姐妹的监护人 无论是生病还是死亡。然而，兄弟姐妹很少参与成年自闭症患者的研究或支持服务。 公共卫生迫切需要制定和评估加强兄弟姐妹参与的方案 在看护过渡危机前的未来规划。拟议的项目将开发一种创新的 促进成年兄弟姐妹参与未来计划生育的计划。兄弟姐妹前进(专注于 关系、幸福感和未来的责任)针对兄弟姐妹参与家庭的常见障碍 未来规划，包括围绕困难话题改善家庭沟通，增加兄弟姐妹的 了解并有信心访问ASD服务系统，并预测和主动发现问题- 解决未来规划的障碍。该计划将与社区组织合作实施 支持患有自闭症的成年人。兄弟姐妹将参与单独的、个性化的模块。远程医疗 选择了一种方法来解决与地域隔离有关的障碍。未来的规划将包括投入 来自患有自闭症的成人。该方案将产生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)制定兄弟姐妹前进计划，(2)评估 可行性，以及(3)评估兄弟姐妹参与该计划的结果。该计划将进一步 通过社区咨询委员会的投入开发，来自兄弟姐妹和服务提供商Focus的数据 小组，以及对患有自闭症的成年人进行个别访谈。然后，一个有5个兄弟姐妹的小型公开试验将是 进行了可行性评估，并进一步完善了兄弟姐妹前进计划。最后，一名飞行员随机 对照试验(RCT)(N=36)将使用对照条件(仅供参考)进行。前、后和3- 每月的随访数据将评估兄弟姐妹的结果(改变技能和知识，发展兄弟姐妹 行动计划)和患有自闭症的成年人(未得到满足的服务需求、生活质量、家庭社会支持)。建立 兄弟姐妹前进计划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 为这一老龄化的人口服务。归根结底，更多的兄弟姐妹参与未来的计划生育将带来最佳的结果 成人自闭症患者通过在生活中更无缝地持续护理而获得的独立性和功能 成人ASD的病程。