“VOICES OF EXPERIENCE” New Video Series
“Voices of Experience” is a new 10-part video series that focuses on the questions, issues and concerns most important to patients in the early days after a spinal cord injury. It will be completed this fall.
Here’s an advance look at the first two videos in the series:
What was your greatest fear at first?
What was the hardest part of the first days in the hospital?
At the heart of the project is the understanding that a spinal cord injury often leads to a profound sense of isolation. Most patients don’t know anyone else with an SCI. Members of the healthcare team often report being told: “I feel like I’m the only person experiencing this.”
The “Voices of Experience” video series offers intensely honest shared moments from a diverse group of people who are successfully living with spinal cord injuries. The series is designed to introduce newly-injured patients to a wide-ranging group of people who share the world they are now entering.
The videos cover the kinds of personal subjects—dating, sex, fertility, relationships, fears and feelings—that patients are often unwilling or uncomfortable about bringing up during peer counseling sessions or even in face-to-face talks with medical and rehab professionals.
The series is designed for distribution to Spinal Cord Injury Model Systems in-hospital television networks, as well as online and to other healthcare institutions.
The full series includes 10 highly-watchable short videos, each dealing with a single question. The answers are drawn from FacingDisability.com’s library of more than 2,000 videos of people coping with SCI.
A focus group of SCI team members at the Shirley Ryan AbilityLab reviewed and refined the final list of topics/questions. They are:
1. What was your greatest fear at first?
2. What was the hardest part of the first days in the hospital?
3. What do you wish you had known at the beginning?
4. Can I still have sex? (Men)
5. Can I still have sex? (Women)
6. Can I still have children?
7. How do you handle anger?
8. How do you handle guilt?
9. Can I still participate in sports?
10. How do I deal with my friends and family?
“Voices of Experience” is a joint project of FacingDisability.com and the Shirley Ryan AbilityLab, created in fulfillment of the outreach component of SRALab’s current Model Systems NIDILRR grant. Drs. Allen Heinemann, Director of Center for Rehabilitation Outcomes Research and Professor, Department of Physical Medicine and Rehabilitation, Feinberg School of Medicine, Northwestern University and David Chen, Section Chief of Spinal Cord Injury, Shirly Ryan AbilityLab, are the co-directors of the grant.