Biographic disruption in families of a child with Short Bowel Syndrome: A sibling perspective

This unique study explored how being a sibling of a child with Short Bowel Syndrome (SBS) impacts an entire family and the resultant biographic disruption (social experience of living with a chronic illness). • SBS is a serious and rare condition affecting about 2 per million in the EU, that is not often researched from a social perspective. • SBS occurs following extensive removal of the small bowel, leading to malabsorption and intestinal failure with life-changing consequences, and typically long hospital stays.