Funding outcome

Interstitial Cystitis/Bladder Pain Syndrome (ICBPS) is a long lasting condition impacting up to 7% of women in the United States. Symptoms include bladder pain and the need to urinate often. Women with ICBPS often have sleep issues, social isolation and anxiety. Education on health can help those affected by long-term illnesses cope. It can give knowledge, take away stress and guide choices. Also, it helps improve communication skills. Women suffering with ICBPS often go online for information. Digital resources can be great tools for understanding and management. The internet is very accessible, but it can have false information. Resource development based on research can help these tools to be reliable. Also, they should be relatable. This is done by using the thoughts and feelings of women with ICBPS during the creation process. Using lived experiences can increase the impact within the ICBPS community. Our study goal is to create health educational tools with women with ICBPS, for women with ICBPS. The project will have three phases. This summer will be dedicated to phase 1. It will include focus group discussions with women with ICBPS. We will learn about their experiences and ask for their thoughts on making effective educational materials for ICBPS. This will help to create a relevant and authentic product. Data from the discussions will be used in a co-creative process to draft an educational tool. After developing a drafted product, a second focus group will occur in phase 2. Here, opinions and feedback will refine the drafted educational tools. The last phase of the project will include a third focus group. Women with ICBPS will judge our product against others currently available. This all leads to creating new and important educational tools for women with ICBPS. Our goal is to make a reliable, relatable and relevant educational tool using a 'by patients for patients' approach.