Let's Care HD
Designing a social network for caregivers of those with Huntington’s Disease and other rare diseases.
Class: General Assembly User Experience Design course
Timeframe: March 2016 - May 2016
Platform: Responsive Web
My tasks and responsibilities:
- User research and synthesis
- Information architecture
- Sketching and wireframing
- Usability testing
- High-fidelity mockups
Imagine your loved one gets diagnosed with Huntington’s Disease. They inherited this neurological disorder from their family that will cause their cognitive and physical abilities to generate over the next 10-25 years. They might experience mood swings, depression, and sudden bursts of violence and rage. As time goes on they will have trouble communicating and experience involuntary body movements called chorea.
Because there’s no cure for Huntington’s (aka HD), there’s not much you can do besides provide care for them until they pass away. So as you can imagine, there’s a lot of responsibility and tremendous emotional burden put on caregivers to ensure people with HD are able to live a safe and comfortable life.
But they shouldn’t have to go through it alone. Let’s Care HD is a social network that connects caregivers to each other so they can share knowledge and best practices about day-to-day caregiving needs.
This was developed through a research process that involved interviewing 4 caregivers, getting expert perspective from a scientific researcher and neurologist, and conducting a competitive analysis.
Some assumptions before research included - most patients are cared for at a facility, caregivers are exhausted by their job, and the main difficulty about caregiving is communicating patient needs.
After interviewing caregivers, I synthesized my research and realized that many caregivers are close family members who prefer to care for their loved one at home, and that caregivers are indeed exhausted by their work but the difficulties vary from person to person because every patient is different and experiences symptoms differently.
I also learned that facebook groups and online forums are the main competitors, because not every caregiver has access to a good neurologist but they all really value and seek community online.
Based on my findings, I created two user personas to focus on - a first-time caregiver who is new and overwhelmed by this commitment and an experienced caregiver who wants to facilitate conversation and support in the HD community.
How might we leverage the knowledge and experience of the HD community to help first-time HD caregivers learn how to provide personalized care and feel emotionally supported?
The design went through two iterations. The first was a question/answer style forum that addressed the need for specific information. I took this concept through user flows, creating a sitemap, and wireframes that I was able to test with two caregivers I interviewed.
I received great feedback to improve the design to better serve caregiver needs and differentiate it from other online forums. I reevaluated the design to be less about isolated instances of specific problems and more about helping caregivers who are in a constant state of mind to learn about topics that are directly relevant to them.
I prioritized features to align directly with the goals of my personas.
I created a user flow for the first-time use scenario to include signing up, selecting topics that they’d be interested in viewing, and prompting them to introduce themselves.
Based on a card sorting exercise and some direct feedback from caregivers on content, I created a sitemap of the information architecture and navigation of the site.
I made some rough sketches of some key frames to determine UI features.
I turned those sketches into wireframes and annotated some specific interactions.
Lastly, I turned these wireframes into mockups and a clickable prototype at https://invis.io/XH77Z3832. Though there are many interactions and screens yet to be fleshed out, this gives users a general feel of what the website would be like.
Project status: I am in contact with a couple HD and JHD organizations to see if this is a project they’d like to pursue, or if any of the research and strategy work would be of use to them.
Reflection: This was an amazing learning process. Some key takeaways:
- It’s helpful to think of the user flow as a “happy path” that the UI guides them through, rather than an outline of all the possibilities available.
- esting early with users is essential for creating a product of value.
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