使用社区参与的研究方法,为患有威廉姆斯综合征的成年人开发社会技能培训计划
Marisa H Fisher1, Rhonda S Black2, Rebecca R Kammes3,4
1Department of Counseling, Educational Psychology, and Special Education and Center for Services, Training, and Research for Independence and Desired Employment, Michigan State University, East Lansing, MI, USA.
Journal of intellectual disabilities : JOID
|April 5, 2024
概括
通过社区的投入,为患有威廉姆斯综合征的成年人开发了一项新的社会技能培训计划 (SSTP-WS). 这项远程授课计划针对患有这种罕见遗传性疾病的个体的具体需求.
科学领域:
- 发展心理学 发展心理学
- 临床心理学 临床心理学
- 遗传学 是一个遗传学.
背景情况:
- 威廉姆斯综合征是一种罕见的遗传性疾病,具有独特的认知,行为和社会现象型.
- 在患有威廉姆斯综合征的成年人中,社交技能缺陷很常见,影响他们的生活质量.
- 现有的社会技能干预措施可能无法充分满足这一群体的特定需求.
研究的目的:
- 为患有威廉姆斯综合征 (SSTP-WS) 的成年人开发一个远程交付的社会技能培训计划.
- 确保该计划与威廉姆斯综合征社区的价值观和需求保持一致.
- 创建一种支持威廉姆斯综合征患者独特特征的干预措施.
主要方法:
- 在整个六个阶段的开发过程中,采用了社区参与的方法.
- 从患有威廉姆斯综合征的成年人,照顾者,服务提供者,教育工作者和研究人员那里收集了输入.
- 该计划的开发包括需求评估,起草,试点测试和反整合.
主要成果:
- 开发过程导致了一个全面的社会技能培训计划 (SSTP-WS).
- 该计划是根据威廉姆斯综合征的特定认知和行为现象型量身定制的.
- 社区反确保了干预与目标人口的价值观和需求保持一致.
结论:
- 远程传递的SSTP-WS是威廉姆斯综合征的成年人一个宝贵的资源.
- 社区的参与对于开发针对罕见遗传疾病的有效干预措施至关重要.
- 该计划有可能改善威廉姆斯综合征患者的社会功能和生活质量.
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