Living with an ostomy: A needs assessment in pediatric inflammatory bowel disease
Meghan K Ford1, Peter C Church2,3, Dean A Tripp1,4
1Department of Psychology, Queen's University, Kingston, Ontario, Canada.
Insights
Adolescents with inflammatory bowel disease (IBD) undergoing ostomy surgery need holistic care addressing psychosocial needs. Patient recommendations highlight the importance of support during care transitions for a positive experience.
Area of Science:
- Pediatric gastroenterology
- Adolescent health
- Psychosocial oncology
Background:
- Inflammatory bowel disease (IBD) presents significant psychosocial challenges.
- Ostomy surgery is a treatment option for IBD, yet psychosocial implications, especially for adolescents, are understudied.
- Adolescent experiences with ostomy surgery may differ significantly from adult experiences.
Purpose of the Study:
- To explore the perspectives and perceived needs of adolescents with IBD and their caregivers regarding stoma surgery.
- To gather insights that can inform clinical practice in IBD care and improve patient outcomes.
- To understand the unique challenges faced by adolescents undergoing or anticipating ostomy surgery.
Main Methods:
- Purposive sampling of patients and caregivers from a pediatric hospital.
- Virtual semi-structured interviews were conducted with 12 patients and 13 caregivers.
- Inductive content analysis was employed to analyze qualitative data.
Main Results:
- Four main themes emerged: fear of the unknown, perceived barriers, the importance of support, and recommendations for a positive experience.
- Participants identified the transition from pediatric to adult care as particularly intimidating.
- A supportive and inclusive handover process was crucial for facilitating this transition.
Conclusions:
- A holistic approach is vital, addressing the physical, emotional, and social needs of adolescent ostomy patients.
- Patient-driven recommendations can enhance age-specific care for adolescents with ostomies.
- Improving the transition process and providing comprehensive support are key to a positive patient experience.
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.
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