Families FORWARD: Development of a Family-Based Transition Planning Program for Culturally-Diverse Youth on the Autism Spectrum
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 27
- 试验地点
- 1
- 主要终点
- Families FORWARD Program Acceptability Form
研究概览
简要总结
The goal of this clinical study is to develop a community-based program to support family members of transition-aged youth on the autism spectrum to help them plan for the future. The main aims of the study are:
- To develop the Families FORWARD program
- To conduct proof-of-concept testing of the Families FORWARD program
Participants will complete surveys before and after participating in the program and will participate in exit interviews at the end of the program.
详细描述
The Families FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) program aims to increase family members' active planning for the transition to adulthood in the context of autism. The program is designed to enable flexible delivery for families of youth who are diverse across autism features, co-occurring conditions, service needs, cultural values and preferences, and readiness to engage in planning. The program will be delivered collaboratively with community organizations that support individuals on the autism spectrum and/or their families.
The current project aims to conduct proof-of-concept testing with a culturally-diverse sample of families of transition-aged youth on the autism spectrum. Parents / primary caregivers will participate in 6-7 individual, personalized sessions that incorporate aspects of skill-building (communication, goal-setting, problem-solving, systems navigation), education about services, and motivational interviewing. Youth will be invited to participate in 3 of the sessions along with their parent / primary caregiver. Participants will complete surveys before and after participating in the program and will participate in exit interviews at the end of the program. The investigators will assess indicators of acceptability, feasibility, and improvement on proposed mediators and outcomes.
研究设计
- 研究类型
- Interventional
- 分配方式
- Na
- 干预模型
- Single Group
- 主要目的
- Supportive Care
- 盲法
- None
入排标准
- 年龄范围
- 14 Years 至 —（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Family Inclusion Criteria
- •Parents or primary caregivers of transition-aged youth on the autism spectrum:
- •Have one or more child(ren) on the autism spectrum who is/are ages 14-21 years old
- •Identify as the parent, legal guardian, and/or primary caregiver of the youth
- •Speak English fluently
- •Reside in Massachusetts
- •Youth on the autism spectrum:
- •Have an autism diagnosis OR identify as autistic
- •Have ability to communicate verbally or in written format in English
- •Reside in Massachusetts
排除标准
- 未提供
研究组 & 干预措施
Families FORWARD
This is a single-arm trial of a new transition planning program for families of youth on the autism spectrum. The program includes six or seven bi-weekly parent sessions, three of which are optional for the youth to attend. The program will be facilitated by community-based service providers who work with transition-aged youth on the autism spectrum and/or their families. Baseline characteristics were not collected for service providers.
干预措施: Families FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) (Behavioral)
结局指标
主要结局
Families FORWARD Program Acceptability Form
时间窗: Within 2 weeks post-intervention (i.e., 3-4 months after enrollment).
Parents/caregivers (and youth, when applicable) completed the Program Acceptability scale which assess acceptability, appropriateness, and feasibility of the FamiliesFORWARD program. Item scores range from 1 to 5. The measure was scored by a total summation; total scores range from 12 to 60. Higher scores are associated with higher perceptions of intervention acceptability, appropriateness, and feasibility.
Transition Planning Activities Measure
时间窗: Within 2 weeks post-intervention (i.e., 3-4 months after enrollment).
The Transition Preparation Activities Measure (T-PAM) was the outcome measure used to assess parents' readiness for their youth's transition to adulthood after completing the Families FORWARD intervention. Item scores range from 1 to 5. Total scores on the measure range from 14 to 70, with higher scores associated with higher transition readiness. Parents/caregivers completed an online version of the T-PAM following completion of the Families FORWARD intervention.
次要结局
未报告次要终点
研究者
Kristin Long
Associate Professor
Boston University Charles River Campus