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ICU StoryWeb: Harnessing the power of storytelling to help ICU families heal

What is ICU StoryWeb?

ICU StoryWeb is a digital storytelling platform designed to help people share their stories about making life support decisions for loved ones in the intensive care unit (ICU). At ICU StoryWeb, you are not alone. We invite users to listen to and read other people‚Äôs stories. Using our storytelling guide, users can record and share their own unique story. We encourage users to visit our Resources section for helpful information about crisis support, grief & loss, making medical decisions, and storytelling traditions.

Why Storytelling?

The intensive care unit (ICU) experience is often chaotic and traumatic for the families who find themselves there. Unfamiliar sights and sounds and challenging decisions can leave families feeling overwhelmed and alone. Decades of research show that storytelling after a traumatic event, such as making a decision about life support for a loved one in the ICU, can decrease symptoms of post-traumatic stress disorder (PTSD), anxiety, depression, and complicated grief. By connecting and sharing with other storytellers, users may find things in common or get different perspectives that help them make sense of their unique situation.

Our Team

Amber Barnato, Founder
Dr. Amber Barnato is a physician and researcher at the University of Pittsburgh School of Medicine. She developed an interest in end-of-life issues as a medical student, but only began to understand the family perspective when she took her own mother off life support following a catastrophic stroke. She has devoted her career to studying end-of-life decision making in the intensive care unit.

Rachel Butler, Executive Director
Rachel A. Butler is Senior Research Coordinator to Dr. Amber Barnato at the University of Pittsburgh's Center for Research on Health Care and directs all aspects of ICU StoryWeb. She developed a passion for studying end-of-life issues and medical decision making as a graduate student at the Richard M. Fairbanks School of Public Health at Indiana University and is currently a doctoral student in the Health Services Research and Policy program at the University of Pittsburgh Graduate School of Public Health. She is also a dedicated hospice and bereavement support volunteer and co-organizer of Death Cafe Pittsburgh.

Our Progress

To date, the ICU StoryWeb team has conducted almost 50 interviews with family members and clinicians about their experiences making decisions in the ICU. The ICU StoryWeb team works with an independent producer to edit the longer interviews into shorter clips that emphasize a predominant theme. The stories are then categorized by theme and uploaded to the website, which is publicly available and free to use anywhere in the world. Our website was created by three, senior computer science students at the University of Pittsburgh who also helped to conduct limited user testing to ensure ICU StoryWeb was aesthetically pleasing, easy to use, and that storytellers were comfortable listening to emotionally activating stories. Stories have been recorded in and around Pittsburgh, PA, Newport Beach, CA, and Nashville, TN, and the team is looking for ways to expand geographic reach and storyteller diversity.

ICU StoryWeb has received piecemeal funding from the National Palliative Care Research Center, the University of Pittsburgh's Clinical and Translational Science Institute, the Gordon and Betty Moore Foundation, and individual donors (see our crowdfunding campaign video, posted below).

The Need

We've heard from our storytellers that they wish ICU StoryWeb had existed when they made their decision about life support for a loved one. Many storytellers report feeling isolated and alone in their experience and unsure of where to find helpful resources. ICU StoryWeb was created to fill that gap and empower decision makers to share their stories. We recognize that storytelling is a powerful way to connect, to learn, and to heal. We have a mission, but we still have room for improvement.

As a recipient of UpPrize funding, ICU StoryWeb will seek to improve the website's user experience, accessibility, and administrative back-end. We will work with a web developer to improve ICU StoryWeb's features and functionality, paying special attention to design elements that make the website accessible to users of all computer literacy levels (including adding closed captioning to all audio content). Additionally, the ICU StoryWeb team has identified a special need to create a more user-friendly Share app, where users can go to share their own story from the comfort and convenience of their home, using their smartphone or computer. In addition to website improvements, we would like to create an ICU StoryWeb app (compatible with both iOS and Android), allowing users to take ICU StoryWeb on the go and enabling access regardless of internet availability. 
 

ICU Storyweb is part of a national revolution to change the conversation about end-of-life decision making. We need your help to do it.
















Submitted

Nov 22 2016

Organization Organization Type

Nonprofit

Challenge

Technology

Product Name

ICU StoryWeb

Product Stage

Production


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