595 - Facilitating Flourishing For Youth With Intellectual and Developmental Disabilities (IDD) Throughout Healthcare Transitions Using Human-Centered Design

Poster Number: 595
Publication Number: 595.309

Danielle A. Kapustin, Duke University, Charlotte, NC, United States; Cameron Love, Duke University, Durham, NC, United States; Hannah S. Zelinger, Duke University, Durham, NC, United States; Riddhi Patel, Duke University, Durham, NC, United States; David Ming, Duke University School of Medicine, Durham, NC, United States; Richard Chung, Duke University School of Medicine, Durham, NC, United States

Background: Transitions of care to adulthood are especially challenging for youth with intellectual and developmental disabilities (IDD) and their families. Existing guidelines for transitions to adulthood are not tailored to meet the needs of youth with IDD. Understanding system-level gaps that impact patients and result in inadequate transitions for youth with IDD can be addressed by employing a human-centered design (HCD) approach that invites individuals who are directly affected to participate at every stage of a structured problem-solving process.

Objective: The objective of this study is to describe how we applied HCD methods to explore how health systems can facilitate flourishing for youth with IDD during transitions to adulthood. This project is part of a broader, multidisciplinary initiative called the Open Design Studio which aims to promote flourishing across the Durham community.

Design/Methods: Our work to-date has focused on empathizing and understanding, two stages foundational to the HCD process. To facilitate these HCD stages, we applied qualitative descriptive methods to conduct and analyze semi-structured interviews. Using snowball sampling, we recruited and interviewed 20 key informants— 8 family members/caregivers of youth with IDD, 7 community partners, 1 student advocate, 10 health professionals, and 3 individuals with IDD. Each 45-60 minute interview was conducted virtually via Zoom. Detailed notes were taken and interviews were recorded and transcribed. We applied thematic content analysis to identify key themes from interviews. Interview data were organized using Mural, a virtual brainstorming platform for HCD teams.

Results: Five themes emerged from key informant interviews: healthcare navigation, gaps between healthcare and non-healthcare settings, communication, access to resources and acknowledgement of socioeconomic factors, and cultural understanding. See table 1. Conclusion(s): HCD methods were successfully implemented to identify recommendations about how to facilitate flourishing through healthcare transitions for youth with IDD. We will use these findings to co-design potential solutions with stakeholders during subsequent ideating and prototyping HCD stages. HCD offers a promising approach to design better systems and support flourishing for youth with IDD and their families during health transitions.
Human-Centered Design ProcessDiagram depicts the 6 stages of the iterative human-centered design process. We have completed the first two stages and will embark on the next 4 in the coming months.
Mural PlatformMural Board.jpegThe virtual brainstorming platform we used to record and visually organize qualitative data from interviews.