(338) Education Through Video Demonstration: A Parent Advisory Council Initiative

Background: The patient and family advisory council (PFAC) at the Michigan Medicine, University of Michigan (U-M) pediatric cystic fibrosis (CF) program is a group of parents who meet every 8-12 weeks to provide input and elevate the care of people with CF in our center. Each year, our PFAC lists ideas for improvement efforts, ranks the ideas, and selects an area of focus. In 2021, the select process revealed that parents desire digital media as resources for various topics of education. This can be easily shared with immediate and extended family and friends and could provide a missing piece to the education currently available through our center. Demonstration of specific procedures were identified as the most useful areas to start.


We aimed to create 5 videos in one year’s time and have them posted on the U-M Health social media. These including learning how to swallow pills, performing spirometry in the clinic, using and troubleshooting a home spirometry device, and huff coughing and autogenic drainage direction.

Methods: Steps in this creation process have included:

1. 
   Lead CF Parent Advisor (a U-M Video Producer) coordinate with our CF Program Coordinator, Respiratory Therapist, and Physical Therapist to design the video content and scripts.
   
   


2. 
   CF Program Coordinator connects with parents and content experts to gain permissions and plan filming logistics.
   
   


3. 
   Lead CF Parent Advisor and patient and staff meet for filming.
   
   


4. 
   Lead CF Parent Advisor edits videos and gains U-M approvals and CF center approvals for final videos.
   
   


5. 
   Lead CF Parent Advisor posts to Michigan Medicine YouTube channel and assists in Blog Post creation and sharing on U-M social media.
   
   


6. 
   Lead CF Parent Advisor adds closed captions and subtitles for 7 different languages.
   
   

Results: In the first 6 months of the project, one video providing instruction on how to practice pill swallowing has completed all steps. In the first two weeks after posting on the U-M Health Blog, the video received over 500 views. This video will also be added to the CF Education materials in our clinic.
Video link: https://www.youtube.com/watch?v=yjqU9ZxUcHo
Blog link: https://healthblog.uofmhealth.org/childrens-health/how-to-help-kids-swallow-pills-7-easy-steps
The other video topics have completed step 1 but are working on recruiting patients for participation in the videos as of April 2022. Our group is actively searching for patients with a variety of races and ethnic backgrounds for better representation of all people with CF in our video content.

Conclusions: Use of PFAC member skills and ideas have resulted in one video, with more in the making, to add to our education materials for our CF patients as well as patients with other diseases who have similar challenges. Sharing publicly allows for a broader reach, and highlights people with CF as ambassadors for CF, health, and wellness.

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