The Perceived Ostomy Educational Needs of Pediatric Patients With Inflammatory Bowel Disease and Their Caregivers
Jennie G David1, Steffany Moreno2, Rhea Daniel3
1Nationwide Children's Hospital, Columbus, OH.
Insights
Pediatric patients with inflammatory bowel disease (IBD) need better ostomy education. Understanding their medical and psychosocial needs is crucial for improving care and support during ostomy surgery.
Area of Science:
- Gastroenterology
- Pediatric Surgery
- Health Psychology
Background:
- Inflammatory bowel disease (IBD) is a chronic gastrointestinal condition requiring significant medical management.
- Ostomy surgery is sometimes necessary for pediatric IBD patients to improve health outcomes.
- Limited understanding exists regarding the specific educational needs of pediatric IBD patients undergoing ostomy surgery.
Purpose of the Study:
- To assess the perceived medical and psychosocial educational needs of pediatric patients with IBD who have undergone or will undergo ostomy surgery.
- To identify patient and caregiver preferences for ostomy-related education.
- To explore concerns associated with ostomy surgery in this population.
Main Methods:
- A mixed-methods approach was employed, combining qualitative interviews with quantitative data from medical records.
- Eight pediatric patients and their caregivers participated in semi-structured interviews.
- Interviews were transcribed and analyzed using qualitative coding to identify key themes and concerns.
Main Results:
- Pediatric IBD patients demonstrated limited understanding of ostomy devices and procedures.
- Key concerns included unfamiliarity with ostomies, preoperative and postoperative anxieties, and social implications.
- Patients expressed a preference for receiving education directly from medical providers.
Conclusions:
- Pediatric IBD patients possess a significant knowledge gap regarding ostomy surgery and care.
- Developmentally appropriate and accessible educational strategies are essential to address patient needs.
- Integrating psychosocial support into ostomy education can improve patient adaptation and well-being.
Abstract:
Inflammatory bowel disease (IBD) is a chronic disease causing inflammation of the gastrointestinal tract. Some patients require ostomy surgery to optimize their health. This study assessed perceived medical and psychosocial educational needs related to ostomy surgery in pediatric patients with IBD. This mixed-methods study included qualitative interviews of pediatric patients and caregivers with demographic/medical variables obtained from medical records. Participants (n = 8) had an average age of 15.62 years (standard deviation = 2.97). Mean length of diagnosis was 4.5 years (standard deviation = 3.6 years). Interviews were transcribed and coded. Qualitative coding of narratives identified main codes of Ostomy Surgery, Preoperative Concerns, Postoperative Concerns, Education Preferences, and Social Concerns, with various subcodes. Codes captured unfamiliarity with the ostomies, preferences for education from a medical provider, and psychosocial concerns. Results suggest pediatric patients with IBD have limited understanding of ostomies and limited insight into educational preferences. These findings highlight the importance of developmentally appropriate information for accessible ostomy education.
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