Pathways Project for Parents of Youth with Down Syndrome
Project Description:
The Institute for Community Inclusion (ICI) at the University of Massachusetts Boston, in collaboration with the Down Syndrome Program at Boston Children's Hospital, and in consultation with the Institute for Human Development at the University of Missouri-Kansas City (UMKC-IHD), will develop, pilot, and evaluate a Pathways Demonstration for at least 40 parents of youth with Down syndrome ages 10–14. The ten-month intervention will support parents to prepare for a positive transition from high school to daily life and integrated employment. A transition planning portfolio based on content from UMKC's Charting the LifeCourse will provide tools and resources, weekly electronic outreach via Facebook as a platform for family networking, connections to companion resources, and a standardized clinician protocol for engaging parents in a guided conversation about post-school life during patient encounters. Through provision of brief prompts or nudges (Dechausay & Anzelone, 2016), content will be chunked apart in micro-learning opportunities (Buchem & Hamelmann, 2010). Project goals include increasing the frequency with which hospital clinicians address transition preparation, strengthening the capacity of the Down Syndrome Program to deliver transition content, and improving parents' visions for the future of their young adult. Pre- and post-test surveys administered to parents will measure their short-term and long-term expectations; their attitudes and beliefs about community and workplace inclusion; and their ability to identify and implement incremental actions that support the achievement of goals. Post intervention key informant interviews with parents, youth, and clinicians will focus on participants' experiences, facilitators and barriers to engagement, and recommendations for refining the intervention in preparation for scaling up.
Keyword(s):
Down Syndrome, transition planning, parent engagement
Core Function(s):
Performing Research or Evaluation, Other Direct/Model Services, Demonstration Services
Area of Emphasis
Health-Related Activities, Employment-Related Activities, Housing-Related Activities, Recreation-Related Activities, Quality of Life
Target Audience:
Family Members/Caregivers, Children/Adolescents with Disabilities/SHCN
Unserved or Under-served Populations:
Racial or Ethnic Minorities, Geographic Areas, Urban, Specific Groups
Primary Target Audience Geographic Descriptor:
Mulit-County, State
COVID-19 Related Data:
N/A
