Community voices

The SBS community is integral to what the gutsy perspective aims to do. Not only is our project team made up of SBS community members, but we also commit to providing many avenues for others in the community to participate and shape the project. We see our engagement with the community as an ongoing conversation; results from community engagement opportunities will be featured on this page and accessible to all. 

Information access and support needs survey

This 10-15 minute survey is currently open until November 1, 2022, for adults who are an SBS/IF patient or parent/caregiver. The survey includes questions about your needs and how & where you find information and support and your unmet needs. Click here for link to survey.

We are currently writing an invited manuscript in the Journal of Clinical Nutrition and Practice on patient/caregiver needs.  By taking this 15-minute survey we created, you will contribute to a scientific publication read by clinicians and help them improve how they support patients and families affected by SBS/IF.

gutsy secret campaign for SBS awareness month

Thank you to everyone who sent us their pictures. We are grateful for your vulnerability and willingness to share.

 

Our campaign for SBS awareness month in August 2022 recognized the different ways patients and caregivers adapt to and cope with SBS life. We asked people to write down an action, thought, habit, or behavior they do that relates to life with SBS,  or something they wish others understood about them. 

Each photo speaks to the various ways we adapt to and cope with life with SBS- they speak to challenges and struggles but also to strength and resilience! Remember you are not alone in your experiences!

We are committed to continuing to shed light through community-driven research in hopes of increasing awareness and fostering a better understanding of SBS experience.

Focus groups for kids and teens with SBS completed!

Kids' voices matter. That's why we were thrilled to have focus groups with kids and teens with SBS in August & September 2022! The conversations in these groups helped us better understand how kids and teens experience life with SBS, and will ultimately shape our quality of life survey. For kids, the focus groups were great opportunities to meet other kids their age with SBS. 

Image by Compare Fibre

Rare Disease Day campaign

We are so excited to share this video in recognition of the short bowel syndrome community on Rare Disease Day. Thank you to all of those who sent us their pictures!

These photos speak to the multidimensional nature of the SBS experience- they speak to challenges and struggles but also to strength, resilience, and gratitude.

We are committed to continuing to shed light on the SBS experience and bringing the SBS community together through community-driven research.

On this day, and all other days, let's remember we are powerful when we come together.

SBS/IF mini community survey results

Having completed our exploratory quality of life study, which was only available to the members of our stakeholder committee (see some of those study results here), we wanted to ensure that the broader SBS/IF community has the opportunity to share what matters to them in terms of quality of life. Amazingly, we received a total of 128 responses in just a few weeks! The infographic below provides an overview of who completed our survey. Detailed results of the community survey can be found here.

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