Living with Bladderexstrophy – The Patients` Perspective

Abstract

Purpose Bladderexstrophy (BE) is a rare but severe urogenital malformation that requires complex clinical management. It can lead to physical restriction as well as to psychosocial and psychosexual malfunction. Unfortunately, little is known about the experiences of persons living with BE from childhood into adulthood. The aim of this study was to explore the experiences of persons with BE, their perception of life and the way they cope with their illness. Material and Methods In this retrospective qualitative study semi-structured interviews were conducted with four women and sixteen men (38 to 68 years). The data were analyzed by content analysis techniques. Results two major categories with two to five subcategories emerged from the data.The first major category “Living with BE” was categorized by episodes and experiences that were repeated throughout the persons life, such as “being in the hospital,”, “living with symptoms”, “being different”, “showing oneself”, and “gathering information.”. The two subcategories “parents” and “partners” demonstrate that they are affected too and provide considerable support to the person with BE. The second major category “Nonetheless, having a good life”, describes the perception of the affected persons to lead a life worth living despite the BE. Conclusions The results of this study illustrates that persons with BE can live a good life, despite repeated health related challenges, if the support provided by their caregivers permits a positive attitude toward their illness in relation to their history. For this, patients with BE and their family members require continuous and highly competent treatment, counseling and education by an interdisciplinary skilled team.