One in five deaths occurs in an intensive care unit. Nine out of ten of these deaths involve a decision to limit life support. Patients are usually too sick to participate in these decisions, so clinicians ask families help, based on their understanding of what the patient would want.
Participating in life support decisions places a significant burden on families, even when they are following a loved one’s stated wishes. In the aftermath of making these decisions, most family members will experience symptoms of depression, anxiety, post-traumatic stress or complicated grief. In 2010, a task force of the Society of Critical Care Medicine proposed a new term for this cluster of symptoms: Postintensive Care Syndrome – Family (PICS-F).
ICU StoryWeb is an innovative, targeted resource that provides support for families after participating in a decision to withdraw life support for a loved one in ICU. To our knowledge, ICU StoryWeb is the first tool designed to support ICU families in the acute bereavement period. The purpose of this project is to develop and pilot test an interactive web-based tool called ICU StoryWeb to alleviate distress among recently-bereaved ICU family members.
ICU StoryWeb has three main components: Listen, Share, and Connect. First, family members can listen to short stories of other family members with similar experiences. Listening to stories will help normalize the unique grief experiences of ICU families. Second, family members can share their own story by downloading a “starter kit” with question prompts and then audio-recording or journaling. Sharing stories will help families to find meaning and make sense of their experiences. Third, family members can connect with others via local bereavement and storytelling resources and events. Enhancing social connections will help promote healthy grieving.
We invite you to visit the beta version of ICU StoryWeb: http://icustoryweb.org.
ICU StoryWeb's success depends largely on you, our generous and excited supporters.
We will recruit 25 participants to record their story. Storytelling sessions take approximately 60-90 minutes with a trained facilitator, and participants are compensated $50. The 60-90 minute sessions are then edited into 2-3 minute thematic stories by a professional producer. This intensive text review, theme research, and editing costs approximately $400 per story. We will recruit 10 participants to test the website. User testing of the website will be facilitated by the study coordinator and a University of Pittsburgh student with website and user testing experience. User testing participants will be compensated $50. All of the money raised during the crowdfunding campaign will go to research activities, production, and non-profit incorporation fees.
ICU StoryWeb was selected to boldly go where few University of Pittsburgh research projects have gone before. The ICU StoryWeb team is working with the University of Pittsburgh Clinical & Translational Science Institute and Institutional Advancement as one of the first Pitt research projects to test the idea of using crowdfunding for research. This crowdfunding campaign is an opportunity to generate awareness and excitement about ICU StoryWeb while garnering financial support to improve, grow, and sustain the tool. ICU StoryWeb hopes to become a sustainable organization that will harness the power of storytelling to help bereaved ICU families for generations to come.
Visit the website: http://icustoryweb.org
Watch our other video describing the project: https://youtu.be/DemRHFpFy9k
Every bit helps us reach our goal!
Supporters at this level fund half of one storytelling session
Supporters at this level fund one ICU StoryWeb usability test
Supporters at this level fund research and text review by a professional producer for one story
Supporters at this level fund the production of one, complete story
Supporters at this level help underwrite the incorporation of ICU StoryWeb as a non-profit organization in Pennsylvania