The Perceived Ostomy Educational Needs of Pediatric Patients With Inflammatory Bowel Disease and Their Caregivers

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.

Biosociodemographic and Digital Profile of Participants in an Online Educational Intervention on Colostomy

“…Among caregivers, women were predominant, in line with findings in the literature. 6,19 . The mean age of 41.9 years corroborates with a previous study 19 .…”

“…Online educational interventions seem adequate for people with stomas who have difficulties in adaptation, self-care, social interaction and return to periodic consultations due to economic and transport barriers 4,5 . Furthermore, caregivers must receive health education and ongoing support from preoperative to home care 6 .…”

Perfil Biossociodemográfico E Digital De Participantes De Uma Intervenção Educativa Online Sobre Colostomia

“…Entre os cuidadores, houve predomínio de mulheres, em consonância com os achados na literatura 6,19 . A média de idade de 41,9 anos corrobora com estudo anterior 19 .…”

“…Outrossim, os cuidadores também precisam receber educação em saúde e suporte contínuo desde o pré-operatório até os cuidados domiciliares 6 .…”

“…Consideraram-se os que responderam à questão; Md: mediana; P25-P75: intervalo interquatil intervenção educativa online foi acessada predominantemente do celular por 85% das pessoas com colostomia e 84% dos cuidadores. A PDB foi para a maioria dos participantes baixa (40; 76,9%), seguida da moderada(9,6), conforme Tabela 3.…”