Corage Case Study

A presenter stands at a podium labeled “Dell Children’s Ascension,” delivering a talk in front of a projection screen. The slide reads, “Both caregivers and care team yearn for consistency and standardization to alleviate anxiety,” alongside an image of a checklist titled “DISCHARGE PREP” and a speech bubble quote from a caregiver. The presenter appears engaged and is mid-sentence, wearing glasses and a white top with dark embroidery. The room features wooden walls and a professional setting.

Discharge care for families navigating congenital heart disease

Challenge

How might we use human-centered design to improve the congenital heart disease discharge process at Dell Children’s Hospital for single ventricle patients, families, and the care team?

Context

People who are diagnosed with congenital heart disease (CHD) often face years of complex medical care. One in every 100 babies born in the United States will be diagnosed with CHD, and a quarter of those infants will require surgery or other procedures in their first year of life. These patients receive care from a very large team, including but not limited to physicians, nurses, advanced practice providers, respiratory therapists, speech therapists, nutritionists, and social workers. With so many care providers involved—and thus multiple priorities in play—discharge can quickly become complicated.

A team of five learners in the M.A. in Design focused on Health program sought to make a positive difference in Dell Children’s congenital heart disease discharge process from hospital to home for patients, their families, and the care team.

A group of ten healthcare professionals stands in a line smiling for a group photo in front of a wooden wall. The team includes individuals in white lab coats, business attire, and clinic uniforms. One person wears a medical mask, and several are wearing ID badges. The setting appears to be a hospital or medical facility, with carpeted floors and a professional yet welcoming atmosphere.


 

A packed conference room filled with medical professionals seated at long tables, attentively listening to a presentation. Many attendees wear white lab coats and surgical masks, indicating a healthcare setting. Two presenters stand at the front facing the audience, while a third person in a lab coat stands near the screen. The space is well-lit, with cameras positioned in the back capturing the event.

Approach

Target interventions that provide a sense of progress and facilitate deeper collaboration between everyone involved in the discharge process.

A close-up image of a printed healthcare journey map showing the patient and caregiver experience from diagnosis to discharge. The timeline is color-coded into distinct phases such as ICU, Step Down, Return In, and Discharge. Icons and arrows guide the viewer through patient activities, caregiver responsibilities, and emotional milestones. Text annotations summarize key interventions and transitions, with a line graph illustrating emotional highs and lows throughout the care journey.

Insights

  1. The high stakes of caring for a medically fragile child complicate roles and responsibilities.
  2. Every child’s journey is unique, but families still need guideposts along the way.
  3. Being in the ICU means it is an emergency, even as clinical status changes.
  4. Both caregivers and the care team yearn for consistency and standardization to alleviate anxiety.
  5. Parents are grappling with complex demands and limited support, and these challenges are intensified by structural gaps in access to health-related services.
A collage of rapid prototyping activities, including annotated journey maps, wireframe sketches, and sticky note exercises. One image shows a hand marking up a printed chart with orange highlighter. Another displays a grid paper sketch of a digital interface. A third features a large sheet covered in pink, green, and yellow sticky notes arranged by section. The final image shows a group reviewing prototypes on a laptop during a collaborative work session. The title “Rapid Prototyping” appears in a bold blac
A hand holds a teal pen above a spiral-bound worksheet titled "Respiratory Pathway," part of a rapid prototyping session. The worksheet uses a grid format to track respiratory progress from surgery through various ICU and room-in stages. Colored bars illustrate steps like intubation, CPAP, and nasal cannula use. A note at the bottom explains how oxygen needs change over time and vary by patient. The black banner in the top left corner reads “Rapid Prototyping.”
A spiral-bound worksheet titled "Education Passport" is shown on a table. The page includes colorful, heart-shaped stamp icons representing different patient education milestones such as learning about CPR, car seat safety, and discharge prep. A hand holds a teal pen above an empty stamp area. A black banner in the top left corner reads “Rapid Prototyping.”
A silhouette of a person stands in front of a hospital room door with a large, bilingual patient care board prototype attached. The board includes sections for care team info, respiratory goals, nutrition plan, medications, caregiver questions, and patient preferences. A visual care progression bar on the right outlines stages from surgery through discharge. A black banner in the top left reads “Rapid Prototyping.”
A person with glasses writes staff names on a dry-erase prototype care board mounted on a wall. The board, branded with the Dell Children’s Ascension logo, includes bilingual sections such as “Today’s Updates / Actualizaciones de hoy” and “Respiratory / Respiratorio.” A black banner in the upper left corner reads “Rapid Prototyping.”

Outcome

Improved coordination between CHD families and care teams.

A complementary set of design interventions improves communication between families and providers, alleviating daily stresses for both.

A specialized workbook empowers parents to document their child’s goals and milestones. It breaks down stages of care that may be overwhelming to understand so families can engage more deeply with their child’s care.

A redesigned care board mirrors the pathway depicted in the workbook and includes interactive pieces that externalize movement through the clinical phases, supporting the exchange between families and providers.

The Dell Children’s team hopes to move forward with this pilot program, which aims to empower patient families and caregivers in what is often an unpredictable time. In addition to piloting, the clinical and project teams will be partnering on future studies and potential publication as to the success of their interventions in the context of the project’s metrics.

An illustrated diagram titled “Coordinated Ecosystem” shows three interconnected tools: a Family Workbook, a Care Board, and a Care Team Checklist. On the left, a family reviews a workbook labeled “SVCHD Workbook” and “My Journey.” In the center, a clinician updates a color-coded Care Board. On the right, a group of care team members reference a discharge checklist and review key items like respiratory and nutrition needs.
An illustration labeled "Care Board Redesign" shows two healthcare professionals wearing masks discussing updates on a redesigned care board. The board includes color-coded goal sections with progress checkmarks and directional icons, aiming to improve clarity and patient engagement.
An illustrated slide titled "Caregiver Map/Worksheet" shows a person reviewing a visual timeline with labeled milestones, emotional markers, and sections for key people, tasks, activities, and supplies. The design helps caregivers track and understand patient care journeys.
An illustrated slide titled "CHD Storybooks" shows customizable children's books designed to document a child's health journey. One open page reads “On day X Nico started breathing on his own,” while another features a space for inserting a photo and writing a personalized story. A stack of colorful books stands to the side, highlighting the format’s flexibility and emotional impact.

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Learn More

Find out more about Dell Children’s Medical Center.

Design Team

Nikolette Amoros

Chavie Cramer

Bonnie Du

Madeline Hanes

Lyndsey Wang

Project Summary

To improve the complex discharge process for families of children with congenital heart disease, students collaborated with Dell Children’s Medical Center to design tools that enhance communication and reduce caregiver stress. The resulting workbook and care board clarify next steps, support clinical collaboration, and empower families during a medically and emotionally intense transition from hospital to home.

Project Contributors

Dell Children’s Medical Center

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