Project WOW (Wear an Ostomy for the Weekend) was created to help the ImproveCareNow Community learn more about what patients wearing ostomies go through on a daily basis. The Parent Working Group (PWG) and Patient Advisory Council (PAC) wanted to create a learning opportunity where we could work together. We knew this project would only give a snapshot of what patients go through because participants wouldn’t have had surgery and the ostomy wouldn’t be functional. But we still believed it would be powerful because participants would be learning from perspective, spending some time “walking in patients’ shoes”, which is something often times difficult to accomplish and not easily seen. We had 2 main goals for Project WOW:
- Increase awareness of what patients go through when wearing an ostomy
- Increase awareness and understanding by identifying and answering questions such as: Do I need to change how I choose my clothes? How do I put a device on? How do I take it off? How do I sleep with it on? How do I shower with it? How do I exercise with it?
Of our 55 participants, 32 responded to a post-project survey and 100% of those surveyed said YES they learned something from participating in Project WOW. Additionally, 99% of those surveyed said YES the project increased their knowledge and/or awareness of ostomies. Some of the frustrations people shared were: the bag got caught on their clothing, the device irritated their skin, it was itchy, uncomfortable and they didn’t know how to sleep. When we asked what they learned we had a variety of responses, including: the bag was almost invisible under my clothes, I didn’t think about showering and drying the bag well before getting dressed, I applaud patients that deal with this everyday, it was annoying and uncomfortable under my clothes. When we asked what people would change about Project WOW if we were to offer it again, most said they’d put liquid (or applesauce) in their bag to make it more realistic. Some said they would wear it longer, and use a different adhesive that didn’t irritate their skin.
We feel that Project WOW was nothing short of success! We accomplished the two goals we set out to meet and learned much along the way. We hope to continue to offer projects like this in the future. We have been invited to speak at the United Ostomy Association of America, Central Ohio Chapter monthly support group. They’d like us to share more with the group about Project WOW and the results. They were very excited to hear we were working on this project and were very helpful in getting us supplies, along with Nationwide Children’s Hospital.
We want to thank ImproveCareNow for helping us bring this project to life! Thank you for your willingness to participate and share your reflections! Together we learned a lot about just a few of the challenges patients wearing ostomies may face, and gained some perspective by wearing an empty bag for the weekend! Assembling the materials for this project even taught us a few things, such as: how many different types and sizes of ostomy bags there are, how difficult it was to find enough donated supplies, that many patients prefer the word “pouch” over bag, and even the term “ostomates”.
Tyler & Tania Moon