PURPOSE: The purpose of this study was to investigate the mechanisms by which a child’s short bowel syndrome (SBS) shapes parent self-reported quality of life (QoL). METHODS: A disease-specific pilot survey was developed collaboratively by SBS community members and clinicians and included both closed- and open-ended items. The cross-sectional survey was administered to a convenience sample of caregivers to children with SBS. Basic descriptive and thematic analyses of parent responses were conducted. RESULTS: Twenty caregivers completed the survey. Of the children in the sample, 80% and 60% were currently receiving parenteral or enteral nutrition respectively; 45% had an ostomy and 55% had comorbidities secondary to SBS. Items least frequently selected as having a strong negative impact on parents’ QoL were PN management or central line care (19% respectively) and the child’s toileting (20%). The most frequently selected items were worries about the child (68%), social isolation (50%) and parents’ poor sleep (50%). Analyses of open-ended responses revealed psychological burdens (e.g., worries, hypervigilance, trauma associated with medical procedures) rather than logistical burdens (management of PN, ordering of supplies, attending medical appointments) as being particularly salient for parent respondents. CONLUSIONS: These results highlight three prominent interconnected themes as possible mechanisms by which a child’s SBS negatively impacts parent QoL: parent mental health, difficulty accessing support, and chronic sleep deprivation and its associated consequences. Better understanding how pediatric SBS shapes QoL for children and their families is crucial for the development of targeted interventions and the provision of patient- and family-centered care.
