Engaging Siblings of Adults With Autism in Future Planning
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 19
- 试验地点
- 2
- 主要终点
- Quality of Sibling Plan of Action
研究概览
简要总结
The goal of this pilot study was to develop and obtain preliminary feasibility and effectiveness data of a telehealth program (Siblings FORWARD) to help siblings of autistic adults work with their families to plan for the future. The main questions it aimed to answer were:
- Is the Siblings FORWARD program feasible to implement via telehealth in the community setting?
- Do siblings benefit from participation in the Siblings FORWARD program?
The Siblings FORWARD program involves 6-7 individualized telehealth sessions with a trained community facilitator. Researchers compared participation in the Siblings FORWARD program to an information-only control condition.
详细描述
The researchers developed a program to facilitate the engagement of adult siblings to work with their families to plan for the future of their autistic sibling. Siblings FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) targeted common barriers to sibling involvement in family future planning, including improving family communication around difficult topics, increasing siblings' knowledge of and confidence in accessing autism service systems, and anticipating and proactively problem-solving barriers to future planning. The Siblings FORWARD program was developed in collaboration with community organizations, with input from siblings, autistic adults, and community providers. Siblings FORWARD was implemented in a community setting, with trained program facilitators. A small randomized controlled trial tested participation in Siblings FORWARD compared to information about services only.
研究设计
- 研究类型
- Interventional
- 分配方式
- Randomized
- 干预模型
- Parallel
- 主要目的
- Treatment
- 盲法
- Single (Outcomes Assessor)
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Siblings of adults with autism spectrum disorder (ASD):
- •Have one or more adult brother(s) or sister(s) with ASD who are either biologically related and/or were raised in the same family of origin (e.g., adopted, step, or foster siblings)
- •English or Spanish fluency.
- •Autistic Adults:
- •Have an ASD diagnosis.
- •Have an adult sibling
- •English or Spanish fluency if verbal.
排除标准
- •Siblings of autistic adults:
- •Siblings will be excluded if they have an ASD diagnosis themselves or if they have any disability that would interfere with their ability to engage meaningfully in future planning for the autistic adult.
- •Autistic adults:
结局指标
主要结局
Quality of Sibling Plan of Action
时间窗: 4 months, 7 months
Investigator developed. Siblings from both conditions submitted a written plan of action at pre- and post-intervention. The investigators used a template on which siblings detailed their short- and long-term goals with respect to planning for the future with their autistic sibling, and their concrete next steps. Blind ratings of the quality of each plan were conducted, according specific criteria that captured the appropriateness and specificity of the plan. Scores range from 0 to 9, with higher scores representing better quality of plan.
次要结局
- Future Planning Self-Efficacy(4 months, 7 months)
- Sibling Knowledge of Family Future Plan(4 months, 7 months)
- Family Communication About Future Planning(4 months, 7 months)
- Sibling Barriers to Future Planning(4 months, 7 months)
- Sibling Knowledge of Adult Services(4 months, 7 months)
研究者
Gael Orsmond
Associate Professor
Boston University Charles River Campus