how do we improve the at-home recovery process for stroke survivors and their families?
A stroke is unpredictable in every aspect, setting up survivors and families for an unguided recovery. With limited resources available, some people have taken matters into their own hands. Robert experienced severe aphasia post-stroke and Joy could no longer run. But while he was leaving messages on answering machine until he could get out a phrase, she was spending all her time trying to beat the crosswalk count when she walked across the street. Now he's a motivational speaker and she participates in walking marathons around the U.S. Current resources, unfortunately, lack these positive stories. The available recovery forums lack organization, community, and hope.
Please note: the names of survivors and caregivers involved in this project have been changed, but their stories remain untouched.
Please note: the names of survivors and caregivers involved in this project have been changed, but their stories remain untouched.
limitations in proper care
Our client, the Feinberg School of Medicine, immediately gave us access to professional resources. In the first week, interviews with 5 clinicians, 1 physical therapist, and 1 survivor unanimously revealed a huge obstacle to better rehabilitation. 70% of mild-moderate patients go home without outpatient care due to limited insurance plans. |
"...there are a lot of emotions going on. He's sick. We don't know what's gonna happen...we don't know what to do to help him...
-Erin, caretaker and daughter |
if there's a will, they will try
Survivors and family members are limited to online brochures and help forums. This unguided journey contributes to a feeling a hopelessness for everyone involved in the recovery process. Yet families go through everything to grasp some sense of hope.
Erin's father experienced a stroke during his surgery. She shows us printouts that she's collected from nurses and physical therapists from varying hospitals. There's no organization to the madness, but she tries everything with her father. This gives her some much needed hope, and gives him time with his daughter. For the most part, she hopes they are doing them right. |
desire for normalcy
Along with the digression, most survivors crave a sense of return. Above is a survey result from the support group we attended. John wants to walk, drive, dance, all the simple pleasures in life that we may take for granted. He filled this out with the help of Karen. They are two survivors who met through the group, and have developed an important support network between each other. Having this friendship is one of the closest thing to normal they have felt in a while.
Don is an acclaimed dentist. One of his daily exercises involves picking "which item does not belong," something he remembers from first grade. When he makes a mistake, it's painful.
Below are other survivors, who experienced simliar regression and frustration after stroke:
Mother of two Environmental engineer and author Pediatric neurologist Marathon runner Professor |
stuck in a cycleWhile meeting with support groups and individuals, we developed a journey map to piece together the recovery process. This one specifically focusses on the experience of a caregiver.
The biggest paint points lay in the post stroke, at-home recovery period. While it's different for every person we spoke with, there is clear a reoccurring cycle. At this point, hope and frustration seem to follow each other over and over. The biggest pain points that arise from the frustrating hope are common among caregivers and survivors alike. They include: Not knowing how to progress.
Not having anyone to relate with. Not knowing what recovery can look like. Not being able to do what they used to do. |
learning what we don't need
Testing mockups with survivors from a focus group and members from a local support group helped us discover a lot about the recovery process. People are doing a lot already on their own. The real thing they need is a community of people to talk with; a way to share and celebrate stories of success.
To the right are some the exercises we used during testing to uncover the key features that survivors want. |
final design
During 6 weeks of interviewing and testing, we heard incredible success stories from survivors.
A man who couldn't even say his name,
now a motivational speaker for other survivors. |
A woman who couldn't control her legs, now a walkathon participant in half marathons across the US.
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They created their own exercises to achieve incredible results. Stream is designed to highlight these stories so others may be inspired to do the same.
The images to the right show the insights that led to each page. Stream has three key functions: 1. Connect users 2. Share exercises 3. Encourage positive discussion We wanted users to be able to see what recovery can look like by showcasing the stories of others who have had success. |
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future stepsI continued the project from Summer 2016 through Winter 2017, and then passed it to a clinician at Feinberg. He used our research to develop an app, which is now being tested in focus groups at the hospital. I designed the research poster below, which he presented at this year's International Stroke Conference to share our findings and promote further research.
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