Significant Stress in Parents of Children With Short Bowel Syndrome Undergoing Intestinal Rehabilitation: Considerations for Care

Objective: This study aims to assess stress, quality of life, and mental health risk experienced by parents of children with short bowel syndrome (SBS) undergoing intestinal rehabilitation compared to a group of parents of children with common gastrointestinal complaints. Method: Eleven parents of racially/ethnically diverse children with SBS (0–5 years old) were recruited from a multidisciplinary intestinal rehabilitation program in the southeastern United States. Participants completed sociodemographic, mental health risk (PHQ-SADS), parental stress (PSI-4 Short Form), and quality of life (QoL; SF-36) questionnaires. Semistructured interviews of SBS parents were conducted, transcribed, coded, and systematically analyzed using principals of thematic analysis. Results: Significant differences with large effect sizes were found on measures of anxiety, parenting stress, and emotional well-being, indicating greater risk for SBS parents. Parent experiences in three themes were identified: navigating treatment challenges (e.g., high risk of complications), parenting role stress (e.g., respite and self-care), and support systems (e.g., peer-based support). Parents reported a lack of awareness and education surrounding intestinal rehabilitation and SBS, resulting in difficulty accessing quality medical treatment, services, and support. Conclusions: Semistructured interviews provided rich information to better understand SBS parent challenges and generated hypotheses about specific recommendations aimed at improving parent quality of life, health outcomes, and satisfaction with care, as well as the need for integration of mental health screening and evidence-based interventions that address the specific needs of parents.