Psychosocial Considerations in Ostomy Surgery for Pediatric IBD Patients

Is it “all in the bag?” Multidisciplinary perspectives on ostomy surgery in pediatric IBD across the ImproveCareNow network

“…Multidisciplinary HCPs in this study highlighted various psychosocial considerations related to ostomies in pediatric IBD, including worries related to body image, doing daily activities, going to school, worrying about the duration of time they would live with an ostomy, and the patient autonomously caring for an ostomy. These psychosocial considerations echo the extant literature and highlight the ongoing need to integrate psychosocial care across the perioperative spectrum, as well as ongoing development of resources to address psychosocial needs 4,5,7 . Some participants endorsed perceiving that patients can cope well with living with ostomies and that most patients with ostomies generally cope better over time; this insight is notable to shift patient and parents' focus to coping and adjustment over time.…”

“…When asked to share their perceptions of what patients navigating ostomy surgery in pediatric IBD may experience, most participants endorsed perceiving that patients view ostomy surgery as a “failure,” which may reflect how conversations about surgery and ostomies in IBD are often framed and how the term “failure” is often synonymous with lack of/poor response to treatment. This continues to emphasize the importance of how HCPs discuss care options and the language choices we make as in clinical care (e.g., “you failed medication X” may be heard as “it is your fault that you failed medication X”) 7 . This lens of “failure” may also reflect a HCP's own normative emotions about a patient not responding to a nonsurgical IBD treatment, such that a HCP may experience normative emotions of frustration and disappointment that a treatment was not effective.…”

“…This resonates with empirical knowledge of how collaboration can vary depending on many factors including surgery being elective or emergent, patient/family openness to multidisciplinary care, and variability amongst HCPs of knowing who and how other specialties can contribute to care needs (e.g., a GI who is on service and does not specialize in IBD is on service may be less familiar with a WOC nurse's role preoperatively). This highlights the importance of ongoing education across multidisciplinary services to be aware of how other specialty services can benefit the patient's whole‐person care 7 …”

“…Pediatric inflammatory bowel disease (IBD) is a chronic, immune‐mediated illness that has a growing armamentarium of treatment options, including ostomies 1–3 . The extant literature on ostomies in pediatric IBD, while somewhat limited, continues to highlight the psychosocial considerations of this complex surgical decision, limited knowledge amongst patients with pediatric IBD about ostomies, variability in multidisciplinary care for these patients, and the persistent ostomy‐related stigma that can impact patients, families, and healthcare professionals (HCPs) in nuanced ways 4–12 . For example, ostomy‐related stigma for a patient may engender worries that an adolescent may not be able to play competitive sports and contribute to a strong preference to not pursue surgery.…”

“…[1][2][3] The extant literature on ostomies in pediatric IBD, while somewhat limited, continues to highlight the psychosocial considerations of this complex surgical decision, limited knowledge amongst patients with pediatric IBD about ostomies, variability in multidisciplinary care for these patients, and the persistent ostomy-related stigma that can impact patients, families, and healthcare professionals (HCPs) in nuanced ways. [4][5][6][7][8][9][10][11][12] For example, ostomy-related stigma for a patient may engender worries that an adolescent may not be able to play competitive sports and contribute to a strong preference to not pursue surgery. Multidisciplinary care remains the gold standard in caring for pediatric patients living with IBD, 13,14 with ongoing exploration of different models of multidisciplinary care in daily practice, 14 if multidisciplinary care is equitable and accessible to this population, [15][16][17] and how surgical decisions may impact the make-up, coordination, and collaboration amongst a multidisciplinary team.…”