project news

February 7, 2022: Results of community mini survey available now!
 

Remember that community survey we shared back in December? The results are in and we received an amazing 128 responses from adult patients with SBS/IF since childhood and parents of kids with SBS/IF! To all of you who participated and shared the survey, thank you!

The full survey report can be accessed here.

December 20th, 2021: Two abstracts to be presented as posters at ASPEN 2022!
 

The gutsy perspective team has had two abstracts accepted to be presented as posters at the ASPEN 2022 Nutrition Science & Practice Conference in March 2022! These posters are based on the exploratory data we collected from adult patients with SBS/IF since childhood and parents of children with SBS. More information will follow soon!

November 17, 2021: Big news-- our first scientific publication is out!

We are excited to announce the publication of our first journal article titled A beautiful struggle: parent-perceived impact of short bowel syndrome on child and family wellbeing, forthcoming in The Journal of Pediatric Surgery! The article is based on pilot data we collected from 17 parents of children with SBS (we extend our sincere gratitude to the parents who took the time to complete the survey). While this study has a number of limitations (including a small sample lacking in diversity), the findings nonetheless provide evidence for what many of us in the SBS community already know:  living with SBS is a complex, multidimensional experience for parents and children, and should not be reduced to the management of illness symptoms and lack of functionality alone. We see this publication as a first stepping stone to expanding the narrative on what life can look like for children with SBS and their families. Read more about the article here

 

December 10, 2021: SBS/IF community mini survey is live!
 

The gutsy perspective recognizes patients and families as experts in their own experience and believes that the community should be involved in all stages of the research process. That’s why our project is set up so differently than traditional research projects-- in this project, community voices are at the center of everything we do!

 

We are excited to announce the first large-scale opportunity for community involvement: the launch of an SBS/IF community mini survey to give you the opportunity to share with us what matters most to you and your overall wellbeing. If you are a member of the SBS/IF community, take this anonymous 5 minute survey and contribute your perspective. Not only will your voice shape the development of our final SBS/IF quality of life survey, it will send a strong message to the wider research community that patients and parents have something to say!

 

You can be a part of driving a new way of doing research. Take our survey. Share our survey. And stay tuned for future opportunities to get involved.