兄弟姐妹前进:开发一项新计划,让自闭症成年人的兄弟姐妹参与未来规划
Kristin A Long1, Jade LaRochelle2,3, Monica Gordillo4,5
1Department of Psychological & Brain Sciences, Program in Clinical Psychology, Boston University, 900 Commonwealth Ave., Second Floor, Boston, MA, USA. kalong@bu.edu.
Journal of autism and developmental disorders
|December 20, 2023
概括
成年兄弟姐妹经常因为服务缺口而支持自闭症家庭成员. 拟议的兄弟姐妹前进计划旨在为兄弟姐妹准备未来的计划,并为其技能培养和远程医疗方法获得积极的反.
科学领域:
- 自闭症谱系障碍 自闭症谱系障碍
- 家庭支持系统 家庭支持系统
- 护理人员计划 护理人员计划
背景情况:
- 成人服务系统不充分支持自闭症成年人.
- 兄弟姐妹经常在没有充分的准备的情况下承担对自闭症家庭成员的照顾角色.
- 需要有结构的计划来支持兄弟姐妹在未来的计划.
研究的目的:
- 评估对兄弟姐妹支持计划的感知需求.
- 收集关于拟议的兄弟姐妹前进 (专注于关系,福祉和责任aheaD) 计划概念的反.
- 评估该计划的目标,内容,设计和远程医疗服务交付模式.
主要方法:
- 来自个人访谈和焦点小组的数据的定向内容分析.
- 参与者包括成年兄弟姐妹 (n=13),自闭症成年人 (n=6) 和服务提供者 (n=17).
- 收集了关于拟议项目的需求,目标,内容和设计的反.
主要成果:
- 兄弟姐妹,自闭症成年人和服务提供者对"兄弟姐妹前进"计划概念表示高度热情.
- 参与者倾向于将技能培养和教育结合起来,以实现持续的未来规划.
- 报告了对计划概念,目标,内容,设计和远程医疗服务的积极印象.
结论:
- "兄弟姐妹前进"概念显示了改善兄弟姐妹参与自闭症成年人未来规划的巨大潜力.
- 该计划的设计,包括远程医疗,收到了积极的反,表明可行性.
- 兄弟姐妹在未来规划中的更多参与可能会提高自闭症成年人整个成年期的护理和支持的连续性.
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