Parents of children born with congenital heart disorders (CHD) are like a library of their child’s complex heart and overall well-being. They often have to educate and update the doctors, babysitters, teachers, family members, and other caretakers in the child’s life, to make sure that the child can thrive in various settings.

Heart Journals is an app idea that allows CHD parents to set up communication journals/profiles that summarize the best ways to help their child thrive in school, during extracurriculars, or even at times of emergency. Once a journal is complete, a parent can easily share the link with any caretaker at any time. On the other side, the babysitters, teachers, and medical professionals can have the needed information in a simple interactive PDF that will help them get to know and accommodate the child better.

A tool that helps parents of children with complex hearts summarize the best ways to accommodate their children in various settings.

My role

Research | Ideation |
Visual Language| User Testing

My team

Darya Andriyenko (solo project)

Tools Used

Figma | Illustrator

Type and timeline

Product Design
July 2021- August 2021

Understanding the Target Audience

Qualitative Research | Personas

While taking a UX certification course with Brainstation, I've had an opportunity to work with 5 parents of children born with Congenital Heart Diseases (CHD). In my interviews with the parents, I found a need for improving information tracking and sharing.

CHD parents know their children like no one else, and as a result must often educate various medical, school, and home caretakers about the best ways to accommodate their child. During times of emergency, the information that a CHD parent must share with the medical team is much different than the information they give to a babysitter who takes care of the child during the day. The ability to efficiently communicate with various caretakers is challenging for many CHD parents. This is a problem I wanted to further explore.

Interview With CHD Parents

“As a CHD parent, I often have to think about how to best communicate with the various caretakers in my child’s life so that they can help my child thrive.”

CHD Parent

As I was collecting key findings in my interviews with the 5 CHD parents, I was constantly asking “how might we” questions to find a feasible problem that I wanted to focus on solving.

Communication Ballance
Some of the parents expressed their struggles with explaining their child’s condition to various caretakers and medical professionals that help take care of their children.
Over-communication of the child’s condition to people like teachers can result in their child being excluded from various activities and events.
Under communication of the child’s disorder to medical professionals can lead to improper medical care (especially at times of emergency).
How might we help CHD parents improve their communication with their children’s caretakers?
The library Parent
CHD parents often act as a library when it comes to their child's medical history. They have to educate medical professionals, and other caretakers about the details of their child’s past procedures, medicine, surgeries, behavioural traits etc.
How might we help CHD parents, efficiently store, update and keep track of their child's medical history?
The Emergency Profile
Many of the CHD parents opened up about their fear of not being there with their child during an emergency. They tried using emergency profile building apps but had little success due to the prompts being too restricting and the app being complicated for the EMTs to use during times of emergency. Many of the parents would simply put together an emergency PDF and carry a physical copy around.
How might we help CHD parents effectively communicate their child’s medical history during an emergency?

Current available products for CHD parents.

MyID Profile App

An app that allows you to store a summary of your medical history and documents.

Parents who have used the app felt that it was good for storing basic information, but the prompts weren’t detailed enough to store more specialized and complex information about their child’s condition.

22q-Portal & App

Allows CHD parents and patients to store very detailed medical history digitally. Originally used by a lot of CHD parents of children with the 22q chromosome.

Many parents in the community found it helpful, but not the most intuitive and user-friendly to use.

Medical Alert Bracelet & Profile

A medical alert system that allows the EMTs to call the Medic Alert 24/7 hotline and get access to a detailed medical history profile that the CHD parent would have filled out previously for their child.

Some of the parents who have used this during an emergency did not like it, seeing as the process of getting access to the medical ID was too complex during an emergent time.

Defining Problems and Objectives

Help with communication

Parents have a hard time explaining their child’s condition to various caretakers. Improper explanation of the child’s needs can lead to poor care and even discrimination against the child.

Keep Track of Information

CHD children have an extensive amount of medical history, that many parents have a hard time keeping track of.

User-friendly Emergency ID

Some CHD parents tried using emergency profile building apps but had little success due to the prompts being too restricting and the app being complicated for the EMTs to use during times of emergency.

Ideation

User Flows | Sketching | Wireframing

In the of ideation, I was going back and forth on creating user flows, rapid sketches and wireframes.

My goal was to build out an app that allowed CHD parents to create profiles not only for times of emergency but also for their child’s teachers, babysitters and other caretakers.

Information Architecture Summary

User flows & Wireframes

Establishing a visual language

Style Guide

I gathered inspiration from parenting and medical apps that are currently on the market, to build the visual language for the Heart Journals app. Although this app has a more serious medical side, it can also have a more playful visual language seeing as the profiles aren’t only for times of emergency, but also for school, extracurriculars, and other activities.

The final visual language has a colourful yet muted palette and uses squiggly patterns that nod to child drawings and journals. The sans serif typography is rounded and clean and highlights the child-like look and feel.

The Heart Journal App

The Solution

The heart journal app is designed to help parents children with congenital heart diseases to better explain their child’s needs to caretakers, doctors, teachers, extracurricular advisors and anyone else who looks after the child.
Through this project, I’ve decided to highlight a few key user flows, starting from the sign up process, and ending at a point of sharing the information with the caregivers.

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Sign up flow

To sign up, the parent must first answer a series of questions about their child, along with important emergency information. This process is used to form the immediate ID section of the app which is in every caretaker journal.

Journals

Once the user is signed up they can see the initial journals. Now, they can add information to the journals to customize each profile. They are also able to add new profiles and new sections in each profile to suit their child’s needs.

Add/ Edit

It is easy to add new information to each section. The user must simply open the specific accordion and add/ edit a new or existing section.

Share & Receiving

A parent can share the journals with specific people or have an option for someone to scan the Medical Emergency Journal QR code directly from their phone. The caretakers would then receive an interactive PDF on their phone that they can use as a reference to better take care of the child.

A the moment I am still exploring the limitations of the sharing and receiving process.

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Lessons Learned

I learned tons about user testing in this project. I was able to walk some of the parents through the Figma wireframes and revise the structure of the app based on their feedback.

I am going to continue more testing with various caretakers, EMTs, nurses, teachers and babysitters, to develop a better experience for both parents and caretakers.