Charlie Hero.jpg
Charlie, a Buddy for Children with Lupus

An education tool that teaches children with lupus about healthy self-care habits

Duration: 9 weeks (SUM20)

Senior Design Capstone, Solo Project

In collaboration with the Lupus Foundation of America

Roles: UX Researcher, UI/UX Designer, Interaction Designer

Tools: Sketch, Principle

Overview
 
Context

Lupus in Children

Lupus is a chronic, autoimmune disease that causes a person's immune system to attack itself, often causing fatigue, pain, and organ damage.

 

In children, it can be especially tough as the disease impacts them during a key moment of growth and education. This can negatively affect not only their physical health, but also their mental health, education, and relationships.

Treatments for Lupus

Due to recent advancements in technology and healthcare, many children with lupus are able to live long, fulfilling lives with

  • medications: immunosuppressants, steroids, etc.

  • healthy lifestyle habits: healthy diet, exercise, and sleep

  • preventative measures: sunblock and clothing, as exposure to sunlight can worsen lupus activity

  • and a supportive healthcare team: doctors, parents, etc.

Adopting healthy habits for lupus management can be overwhelming.

Once diagnosed with lupus, children get overwhelmed by the new demands of adopting a new lifestyle to address their disease. They have to:

  • take a variety of medications correctly and on schedule

  • sleep at least 9 hours a night

  • stay out of the sun or use sun protection (clothes & sunscreen)

  • and more

 

in order to manage disease activity and minimize discomfort.

Problem

Relying on parents for lupus care can come with challenges.

To feel less overwhelmed, children with lupus often share the responsible of care with their parents. For some parents, this can be very stressful as their children must 100% depend on them for their disease management. On the other hand, some older children feel that their parents can be overprotective and unconfident in the child's ability to manage their lupus.

 

As a result of both scenarios, these children do not get the opportunity to practice self-care frequently, which impacts their ability to become independent in the future.

How might we design an education tool 

that encourages children newly diagnosed with lupus to form healthy habits 

so that they can grow to be independent?

Solution

Charlie is an education tool for children with lupus.

Charlie is a monkey with lupus that allows children to practice healthy habits using a toy care kit, which includes items such as

  • medications, labelled by colors and shapes

  • sun protection (sunscreen & a sun hat)

  • eye mask, for sleep

Charlie teaches children the importance of disease management through an engaging, tactile experience, paired with an educational tablet app.

Benefits

Currently, there are no products in the market that are designed specifically for children with lupus. Charlie aims to fill that gap by offering support and education to children in an engaging, yet comforting way.

 

Through Charlie and the partner app, children can

  • recognize the positive results on one's physical and mental health after a period of consistent care

  • feel more knowledgeable about lupus and how to manage it

  • build confidence in their abilities to care for themselves as they grow up

  • feel less alone in their journey with lupus

Research
 

Psychology & Pediatrics: Self-care & Independence

Without independence & self-care skills, children encounter more:

With independence & self-care skills:

  • They're more involved in their communities (Source)

  • Reduces the stress of parents/care providers (Source)

The American Academy of Pediatrics recommends that children practice independence in self‐care prior to their transition to adult care. (Source)

When diagnosed with lupus at a young age, it is important that children share the responsibility of self-care with a parent, as self-care is formed by learning. The goal is to familiarize themselves with good care habits rather than doing things on their own right away. (Source)

In children, becoming independent in self-care does not necessarily mean doing things alone.

“Learning to be as independent as possible by means of self-care activities does not necessarily mean to do things without any help.“

Market Analysis

I gathered a collection of popular lupus education tools and analyzed them using a series of traits common in existing education tools for children. These criteria focus mainly on making learning experiences engaging and easy to understand.

Design Opportunities

  • Design an education tool specifically for children

  • Create a more hands-on learning experience

  • Break down/ order lupus topics into a learning sequence

Interviews

Interview Goals

Next, I conducted interviews with 3 lupus warriors who were diagnosed in their early teens* to learn more about

  • how they adapted to the demands of their new lifestyle.

  • how they became independent in caring for themselves.

Participant Pool

 

* I was unable to get interviews with children in my target age group (8 - 12) to interview with me as social media was my main source of contact during this project, amidst the pandemic. If a child with lupus had a social media presence, the account was often run by a parent who posted infrequently. Therefore, I was thankful to be able to interview these 3 lupus warriors who were diagnosed in their early teens. During our interviews, we discussed the transition period before and after diagnosis, with a focus on learning self-care.

The truth is that lupus warriors rarely get diagnosed as early as in their teenage years, let alone during childhood, due to misconceptions of pain in children and communication barriers. Fortunately, in the past decade, advancements in psychology and pediatrics have helped increase awareness for chronic/ autoimmune diseases in children. As a result, children are able to receive diagnoses and treatments much quicker but on the other hand, not many lupus education tools are designed for their age group.

Hailey & Nicole

Twins with lupus, both diagnosed at 13, now 19

Struggles they faced post-diagnosis:

  • They did not quite understand the severity of lupus.

  • They were overwhelmed by the lupus-related lifestyle changes.

    • Nicole admitted she was not as thorough and consistent with her early self-care as she should have been.​

  • They felt left out by their friends at summer camp since the sun and fatigue limited their ability to participate in camp activities.

  • Noted their family was overprotective at times

    • Wanted the opportunity to prove to their mother they were capable of self-care

Takeaway pain points

  • Lack of knowledge about lupus

  • Overwhelmed by self-care routines

  • Feeling socially distant from friends

  • Little opportunity to practice self-care

Kristina

Began experiencing symptoms at 6, diagnosed at 14, now 27

Struggles she faced post-diagnosis:

  • Loved swimming but after her diagnosis, she was unable to participate in PE or swim with her friends​

  • Though a lot of her friends were curious about her absence during her diagnosis and treatment, Kristina found lupus difficult to talk about with her friends because she didn’t think her friends would know what lupus is since she didn’t really know herself

Takeaway pain points​

  • Feeling socially distant from friends

  • Lack of knowledge about lupus

  • Unsure how to explain lupus to others

Persona

Allison

Age 10, 4th grader

Background:​

  • Recently diagnosed with lupus and lupus nephritis

    • On 3 kinds of​ medications

  • Loves to play basketball with her friends during recess but has had to stop due to joint pain, fatigue, and photosensitivity

Pain points right after diagnosis:

  • Has trouble remembering instructions on how to manage lupus

  • Does not feel confident in her own ability to manage lupus

  • Scared her friends will leave her behind during recess

Goals:

  • Have a good understanding of how to manage lupus

  • Feel confident in taking on more lupus care responsibilities as she transitions to middle school

  • Find a recess activity that she can participate in with her friends

User Journey

By mapping out Allison's user journey post-diagnosis,

I uncovered some key moments:

  • Highlights: Receiving treatment, learning about lupus, feeling better post-treatment

  • Lowlights: Difficulty adjusting to a new lifestyle, feeling distant from friends, feeling "babied" by a parent

Design Opportunities based on lowlights

  • Help children adapt to the demands of living with lupus

  • Help children stay involved in their social groups

  • Give children and parents the opportunities to work together in managing lupus

Problem Framing
 

Narrowing down the user age group to ages 8-12 (school age)

I narrowed down the user group because child development occurs rapidly and even between just one grade level, there is a large difference in a child's abilities.

According to Erikson’s stage theory, children this age gain a lot of satisfaction from

  • Independent behavior

  • Feeling accepted by peers

 

As children with chronic illnesses progress through elementary school, they

  • Begin to understand the causes and effects of an illness

  • Begin to realize that chronic illnesses require continuous management

  • And develop basic reading and language skills surrounding chronic illness education

Frustrated trying to understand lupus and its impacts

Overwhelmed by new care routines

Out of place amongst friends

Research Insights

Children recently diagnosed with lupus often feel...

Keys

Help the child develop knowledge and skills

Promote confidence & independence

Form a sense of community

Make self-care education engaging

Impacts on Children

“I understand how lupus affects me and how to manage it.”

​“I feel comfortable caring for myself with the necessary assistance from my parents.”

“I feel comfortable sharing my lupus experiences with others.”

“Learning about how I can care for myself is interesting and important to me.”

Keys to Encouraging Effective Self-Care (Source)

These 3 research insights reveal that most children diagnosed with lupus struggle with the 3 highlighted keys below, explaining why self-care can be challenging for them to learn.

Help children understand the importance of healthy habits for managing lupus

Break down self-care routines into steps that are easy to follow

Encourage open discussions about lupus with friends

Design Opportunities

Based on the highlighted keys above, I listed 3 actionable design opportunities.

Educational

Comforting

Empowering

Design Principles

How might we design an education tool 

that encourages children newly diagnosed with lupus to form healthy habits 

so that they can grow to be independent?

Ideation & Iteration
 

Earlier changes in problem space

During my early stages of ideation, I was still designing for a different problem space: communication between doctors and pediatric patients. Through ideation and feedback, I realized this problem space would most effectively be tackled through changes within the medical field and due to my lack of medical training, I felt as a designer, I could not intervene as effectively in this scope as I could on the patient-side of the experience. Therefore, I focused on creating an experience for education moving forward.

Product Concept

Value of Stuffed Animals to Children

  • Helps language development

  • Added comfort and courage

  • Develop social skills

  • Teaches compassion & empathy

Feedback for Early Concepts

Feedback from Design Professor

  • Monkey companion concept seems most compelling due to its interactive experience.

  • Stuffed animal solution can be more approachable for children.

  • Separate the screen from the stuffed animal for feasibility and cost reasons.

Feedback from Hailey & Nicole, the Lupus Twins

  • Most drawn to monkey companion concept as it can help

    • children feel less alone during play time with friends​

    • children familiarize themselves with care habits

    • create trust between care givers and children

Product Concept Refinement

Updated Concept

  • Separated interface from stuffed animal

    • Use partner tablet app instead​

  • Brainstormed methods of habit tracking: sensors

  • Focused more on education rather than symptom tracking according to research insights

Sleep Habit Tracker

Measuring hours by covering and uncovering light sensors in the eyes

Sun Protection

Tap the sunscreen on the monkey's cheeks to "apply" sunscreen. Protect the monkey with a hat. Both of which have sensors.

Medication

Tap the monkey's mouth with the correct colored pill.

Partner App Concept

Main Features

I chose to design for the tablet because tablets are commonly used by young children for videos and games. I have also never designed for a tablet interface before and wanted to familiarize myself with this UI.

Flow Diagram & Sketches

By sketching a flow diagram and low fidelity wireframes, I begin to piece together the app experience to include these key features. I intend for the app to be used by both the parent and the child.

User Testing & Feedback

Feedback for parent's experience

  • Provide a visual schedule when setting up a routine

  • Allow parents to create a passcode to protect accidental edits​

Feedback for child's experience

  • Wasn't sure where to go forward on the dashboard page​

    • To encourage children to click on lessons, bring it to the dashboard screen​

  • Make the quiz more fun

  • Give children an incentive to take lessons and complete quizzes

Refinement & Prototyping
 
App Refinement

Refined Flow Diagram

Based on user feedback, I added several screens to the original flow diagram to increase security for parents and fun for children.

Wireframes

Following the updated flow diagram, I built a basic wireframe on Sketch, using a UI kit from Mikołaj Dobrucki, with minimal visual design details to get the basic layout and features established.

Mock ups

Style Guide

I used purple as my main UI color as that color represents the lupus community. I also chose bright accent colors to pair with the purple to appear vibrant and engaging for children.

Typography UI Kit by Mikołaj Dobrucki

App & Product Prototype

Prototyping & Motion Design

After refining my mock ups in Sketch, I added motion design in Principle to bring the experience together.

Charlie's Prototype

I prototyped Charlie using a stuffed monkey and green screened his cheeks and mouth to imitate lights for the demo video. I also sewed their accessories out of felt.

Design Solution
 
Charlie's Features

Children can practice lupus care on Charlie,

which translates to self-care habits such as...

Taking medications

Charlie's mouth lights up with the color of the corresponding toy pill color and the child's pill bottle label. Charlie can describe the medication's color and shape when their mouth is pressed for better accessibility.

Applying sun protection

Charlie's cheeks light up to remind the child to apply sun protection when

  • exposed to sunlight without prior protection

  • it's been 2 hours since the last sunscreen application during daytime, as sunscreen wears off by then

Sleeping healthy

When Charlie's light sensor eyes are covered with an eye mask, the hours slept are recorded.

App Features

see how consistent care for Charlie leads to their better wellbeing

The partner tablet app allows children to...

learn about lupus through educational videos and quiz games

earn rewards for learning new topics and caring for Charlie

Parents can also...

set a care routine and learning curriculum best fit for their child,

as well as a passcode for safety

view their child's progress in caring for Charlie and themselves

Product Reflection

Help children understand the importance of healthy habits for managing lupus

Children can see the positive impacts of healthy care habits in Charlie on the app dashboard and get reminders/ suggestions if improvement is needed.

Break down self-care routines into steps that are easy to follow

Daily lessons are introduced to children in appropriate sequences and topics.

Encourage open discussions about lupus with friends

Design Opportunities

Charlie can accompany the child when friends aren't available or act as an icebreaker for talking about lupus.

Educational

Children can learn by doing using Charlie's lupus care kit, on top of video lessons and quizzes in the app.

Comforting

Empowering

Design Principles

Charlie can let children know that they are not alone in this and they can work through lupus together.

With more knowledge and practice, children can feel in-control of their illness.

Reflection & Takeaways
 

The ups

​It feels so rewarding to end my design undergraduate career with a project that is so personal to me. Through this experience, I have been able to meet so many strong lupus warriors all over the US to learn more about their stories and share mine as well.

The downs

​This quarter was filled with many restrictions as I was working on my project during the pandemic, especially being immunocompromised. As a result, I was able to learn how to adapt quickly and produce rapid prototypes using household items/tools.

Moving Forward

​I hope this project can help raise awareness for children living with lupus. Because most lupus tools and services are catered towards adult users, I want children to know that they are not forgotten when it comes to lupus education and advocacy. Once I get access to more tools, I hope to create a higher fidelity prototype with working lights and sensors!

©2019 by Jay Ma Design