Living with an ostomy: A needs assessment in pediatric inflammatory bowel disease

Background

Inflammatory bowel disease (IBD) is a chronic, immune-mediated inflammatory condition of the digestive tract associated with substantial psychosocial difficulties. Treatment often focuses on medications but may also include surgical approaches (e.g., intestinal ostomy). Unfortunately, literature regarding the psychosocial implications of ostomy surgeries is scarce, and even less is known about adolescent experiences, which may differ markedly from adults.

Objective

This study aimed to explore the perspectives of adolescents with IBD and their caregivers to understand their perceived needs when they have undergone, are anticipating, or have anticipated the possibility of experiencing a stoma surgery. Study findings hoped to inform clinical practice in IBD care and beyond.

Method

A purposive sample of patients and caregivers were recruited from a large pediatric hospital. Twelve patients and thirteen caregivers participated in the study. Participants completed a demographic background questionnaire and virtual semi-structured interview. Inductive content analysis was used to examine participant feedback.

Results

Qualitative results identified four overarching themes and thirteen subthemes: fear of the unknown, perceived barriers, being supported, and recommendations for creating a more positive experience. Specifically, participants described the transition process from pediatric to adult care as particularly intimidating and having a supportive and inclusive handover was a helpful piece that supported the shift to adult care.

Conclusion

This study reflects the importance of a holistic approach to care that attends to adolescent patients’ physical well-being and emotional and social needs. Patient-driven recommendations for enhancing age-specific care of adolescents with ostomies are provided.