Publishing Collaboration Results in Second Patient-Authored Book About ICD

Newly published: ICD Connection: Living with implantable cardioverter defibrillator (ICD). A collection of stories from women and men. The book, which is available print-on-demand or freely as OER on the Open.Michigan website, focuses on life for patients with ICDs from men’s and women’s points of view.

About the size of a stopwatch, an implantable cardioverter defibrillator, ICD, is an electronic device that gives immediate therapy to life threatening arrhythmia (irregular heartbeat) via a painless pacing sequence or jolt of electricity. Some ICDs also act as pacemakers.

Book cover image for ICD Connection: Living with implantable cardioverter defibrillator (ICD). A collection of stories from women and men

After taking part in and receiving much positive feedback from both patients and healthcare providers for the collaborative ICD Connection: Living with an implantable cardioverter defibrillator. A collection of stories from patients and their families, editor Helen McFarland, R.N., was inspired to explore experiences of living with an ICD from perspectives unique to each gender.

“Although much of the experience of having an ICD implanted is shared between the genders, there are unique experiences that only another woman can understand and vice versa for men…Connecting with others who are experiencing similar situations can help us find encouragement and hope in our own situations. Thank you [contributors] for your generosity.”

An ICD has a significant impact on a patient’s life. This new book is filled with touching stories from women and men of all ages, and how the ICD implant affected their life, their challenges and struggles and what was (or wasn’t) helpful in adjusting to life with an ICD. The heartfelt stories talk about patients feeling scared or depressed (which is common), and fears that loved ones will be afraid to touch them. The book also answers some practical questions specific to women (mammogram, undergarments, pregnancy), and to men (intimacy, everyday activity, and even microwave ovens).

This is the second time McFarland has worked with Open.Michigan, and applied a Creative Commons license to her work, citing her positive experience with the first publication as well as wanting this book to have as broad impact as the first, including a global audience.

McFarland says, “The first time around I felt like I was trying to move a mountain, and Jasna Markovac, Director of Medical School Information Services Learning Design and Publishing, and her team skillfully guided me through the entire process. This time I felt empowered to produce the book.”

Purchase the ICD Connection on Amazon, or download it for free from the Open.Michigan website.

Learn more about McFarland’s first publication about ICDs on the Open.Michigan blog, “Unique Publishing Collaboration Results in Patient-Authored Book.” You might also enjoy reading the U-M Health System press release, “Unique book gives ICD patients a voice, offers hope to others” by Susan Topol, Marketing and Communications Manager, Medical School Information Services.

Digital Storytelling: Using Narrative and Technology to Enhance Learning

This blog post was co-written by Airong Luo, Ph.D., research area specialist lead, U-M Medical School Information Services Learning Program, and Stephanie Dascola, editorial assistant, Open.Michigan, Office of Enabling Technologies, a unit within the University of Michigan Medical School Information Services organization.

Storytelling is an effective medium to capture and share tacit knowledge, enhance reflective learning, and promote communities of practice. By incorporating multimedia, digital stories strengthen storytellers’ ability to make and share their narratives through multiple modes.

Palliative and end-of-life care involves addressing four dimensions of quality of life—the physical, the psychological, the social and the spiritual. Unfortunately, less than 15% of those who deliver end-of-life care have received professional training on the subject. Instead of traditional didactic and Socratic methods, innovators have called for interactive learning environments that use reflective and experiential teaching methods for addressing the attitudinal barriers that prevent application of core palliative care knowledge. This project started as a way to marry the strength of narrative and technology, and has the potential to encourage reflection and interactive learning and thereby foster students’ palliative care competencies. The process of creating, sharing, and discussing digital stories can therefore be a bridge linking abstract concepts to personal experiences that, overall, enhances the learning experience. Post graduation, nurses may be able to transfer what they learn through their storytelling experience to their professional practice.

A collaborative team including Airong Luo, Ph.D., research area specialist lead, U-M Medical School Information Services Learning Program, Steve Lonn, Ph.D., assistant director of the U-M USE Lab and library analytics specialist, Linda Strodtman, Ph.D., R.N., assistant professor emerita of nursing, U-M School of Nursing, Deborah Price, R.N., M.S., clinical instructor in nursing, U-M School of Nursing, and Elizabeth Brough, Ph.D., R.N., clinical instructor in nursing, U-M School of Nursing, conducted two pilot studies to understand how digital storytelling affects nursing students’ learning of palliative care concepts during the Fall 2012 term and Winter 2013 term. Findings from these studies were presented at U-M Enriching Scholarship 2013 and Palliative Care Collaborative, 7th Annual Regional Conference. A rich discussion was had by the approximately 50 health professionals in attendance, and they also talked about the methodology and future uses of this method for legacy work.

Dr. Luo is also a researcher at Open.Michigan, part of the Office of Enabling Technologies, a unit within the University of Michigan Medical School Information Services organization, that encourages researchers, learners, and instructors to maximize the impact and reach of their scholarly work through open sharing. One aspect of the digital storytelling project was that students learned how to find and properly attribute openly-licensed images for use in their assignments. Many mentioned that they found it helpful, including one of the students, “I liked that I was allowed to integrate a personal story and apply it to concepts that we learned. I also enjoy making the visual presentations.”

“We hope to develop a repository of digital stories that enable collaborative learning for students and health professionals from different countries. Digital storytelling will offer learners opportunities to acquire tacit knowledge including communication skills, understanding and respecting different cultures, which they cannot learn from lectures and textbooks. After talking to our collaborators in China and South Africa, we decided to start with the pilot projects at U-M to understand the impact of digital storytelling on teaching and learning and how instructors, researchers and technologies can enhance educational impact of digital storytelling,” said Dr. Luo.

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