A beautiful struggle: Parent-perceived impact of short bowel syndrome on child and family wellbeing

•Using a community-driven research design, we elicit new insights into wellbeing for children with SBS and their families.•Families invest significant effort and time in managing their child’s SBS and ensuring a “normal” child and family life.•Most respondents felt their child’s quality of life today is higher than they were told to expect at the time of diagnosis.•Management by an intestinal rehabilitation program (IRP) was associated with higher child and family wellbeing.