MP51-10 UNEXPECTED CHALLENGES FOR CAREGIVERS OF CHILDREN WITH NEUROGENIC BLADDER

Abstract

You have accessJournal of UrologyPediatric Urology IV (MP51)1 Sep 2021MP51-10 UNEXPECTED CHALLENGES FOR CAREGIVERS OF CHILDREN WITH NEUROGENIC BLADDER Kassie Flewelling, Vijaya Vemulakonda, Cindy Buchanan, Gemma Beltran, and Sarah Hecht Kassie FlewellingKassie Flewelling More articles by this author , Vijaya VemulakondaVijaya Vemulakonda More articles by this author , Cindy BuchananCindy Buchanan More articles by this author , Gemma BeltranGemma Beltran More articles by this author , and Sarah HechtSarah Hecht More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000002077.10AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: Neurogenic bladder is a chronic medical condition requiring multifaceted care. Due to the complexity of care in a pediatric population, nonadherence to medical recommendations is associated with increased morbidity, mortality, and medical costs. To ensure understanding and adherence to recommendations, the implications of the disease and its management for patients and caregivers must be clear. The purpose of this study was to characterize challenges faced by caregivers of children with neurogenic bladder which may affect their adherence to recommendations. METHODS: A multidisciplinary team of qualitative researchers conducted semi-structured phone interviews with primary caregivers of children with neurogenic bladder, all of whom were patients in the pediatric urology department of a large, tertiary pediatric referral center. Purposeful sampling was used to ensure representation based on race, gender of the child and of the primary caregiver, primary language, distance from the medical center, and medical complexity of the child. Interviews were recorded, transcribed and, when applicable, professionally translated. Transcribed data were analyzed using a team-based inductive grounded-theory approach. Thematic analysis of coded data was facilitated by ATLAS.ti software. RESULTS: Primary caregivers for 25 patients with neurogenic bladder were interviewed (20 in English, 5 in Spanish), at which point thematic saturation was reached. Three themes emerged surrounding the topic of unexpected challenges: 1. caregiver sacrifice, 2. issues related to supplies, and 3. the chronic nature of the disease. While most were aware of the need for catheterization and potential for surgical management, caregivers overwhelmingly felt that managing the neurogenic bladder was more difficult than anticipated. CONCLUSIONS: Caregivers of children with neurogenic bladder report their role is more difficult than they expected. In particular, many identify feeling unprepared for the level of sacrifice required, issues surrounding medical supplies, and the chronicity of the disease. Identifying the unexpected challenges as perceived by caregivers will help pediatric urologists address gaps in counseling and expectation-setting and has the potential to improve adherence to recommendations, thereby improving patient outcomes. Source of Funding: Center for Children's Surgery Ponzio Award © 2021 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 206Issue Supplement 3September 2021Page: e900-e900 Advertisement Copyright & Permissions© 2021 by American Urological Association Education and Research, Inc.MetricsAuthor Information Kassie Flewelling More articles by this author Vijaya Vemulakonda More articles by this author Cindy Buchanan More articles by this author Gemma Beltran More articles by this author Sarah Hecht More articles by this author Expand All Advertisement PDF downloadLoading ...