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Pre- and Post-Operative Experiences of Children and Parents Undergoing Major Reconstructive Surgery for Continence: A Qualitative Study
ZoŽ G. Baker, PhD, Michelle SooHoo, PhD, Hannah Dillon, BS, Zorash Montano, PhD, Evalynn Vasquez, MD, MBA.
Children's Hospital Los Angeles, Los Angeles, CA, USA.

BACKGROUND: Relatively little research addresses pediatric patient and parent motivations or experiences following major reconstructive continence surgery. This study aims to identify patient and parent motivations for major urologic reconstruction, experiences post-surgery, and family impacts among a cohort of pediatric patients who had previously undergone major reconstructive surgery for continence including Mitrofanoff appendicovesicostomy, bladder augmentation, and/or bladder neck reconstruction.
METHODS: In-depth interviews (IDIs) were conducted with pediatric patients who underwent major reconstructive bladder surgery at our institution within the past five years. Primary caregivers were also interviewed separately. Questions for both patients and caregivers focused on motivations for surgery, social support, and short- and long-term positive and negative outcomes following surgery. Interviews were transcribed verbatim and analyzed using Grounded Theory with recurrent themes identified.
RESULTS: Fifteen individuals - seven children and eight parents - completed IDIs from 2019-2022. Children and parents frequently cited desire to be dry as a motivator for surgery. Parents often referred to exhaustion of other treatment options, while children frequently discussed wanting to fit in with peers. Both children and parents faced challenges in determining whether to disclose the upcoming surgery to social networks, weighing needs for social support with desires for privacy. Parents' most common short-term challenges following surgery included managing their child's pain, their child's difficulties learning to catheterize, and greater parent responsibilities in providing both medical care and emotional support. Children most frequently reported short-term pain following surgery, difficulty learning to catheterize, and social isolation while recovering. In the long-term, parents reported a large continued role in their child's medical management, improved child responsibility in their own medical care, and varying degrees of success in achieving continence. Children reported improved continence, reduced social anxiety surrounding incontinence, and overall positive experiences despite post-operative challenges.
CONCLUSIONS: This study provides an improved understanding of the difficulties parents and children face in preparing for continence surgery and the challenges in adjusting to new regimens post-surgery. These findings may be used to improve pre-operative preparation and offer additional resources to assist families after surgery. Future studies will also address preoperative assessment of patients to ensure psychologic understanding and preparedness.


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