Nationwide Children's Hospital, Columbus, OH.
Drexel University College of Medicine.
J Pediatr Gastroenterol Nutr. 2020 Jun;70(6):849-852. doi: 10.1097/MPG.0000000000002665.
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.
炎症性肠病（IBD）是一种导致胃肠道炎症的慢性疾病。一些患者需要进行造口手术来优化他们的健康状况。本研究评估了儿科 IBD 患者对造口手术相关医学和心理社会教育需求的认知。这项混合方法研究包括对儿科患者和照顾者的定性访谈，从病历中获得人口统计学/医学变量。参与者（n=8）的平均年龄为 15.62 岁（标准差=2.97）。平均诊断时间为 4.5 年（标准差=3.6 年）。访谈进行了转录和编码。对叙述的定性编码确定了造口手术、术前关注点、术后关注点、教育偏好和社会关注点的主要编码，以及各种子编码。这些编码捕捉到了对造口术的不熟悉、对医疗提供者教育的偏好以及对心理社会问题的关注。结果表明，患有 IBD 的儿科患者对造口术的了解有限，对教育偏好的了解也有限。这些发现强调了为可访问的造口术教育开发适合发展阶段的信息的重要性。
