Living with an augmented bladder: the experiences of young people following their surgery

Abstract

Background: Bladder augmentation (BA) is the surgical enlargement of the bladder. In childhood, BA is carried out after other conservative methods have failed in the treatment of neuropathic bladder to manage incontinence and other symptoms. The literature mainly focuses on the surgical outcome of the procedure and the incidence of complications; few studies address health-related quality of life and even fewer qualitative studies explore children’s and young people’s lived experiences of BA.
Aim: The aim of this study was to explore in detail the experiences of young people with a BA and the meaning the surgery had on their lives as they transitioned to young adulthood.
Methods: This qualitative study used semi-structured interviews and drew on Interpretative Phenomenological Analysis (IPA) to explore the subjective experiences of eight young people (aged 17-25 years) living with a BA. Analysis was undertaken in line with IPA focusing on the descriptive, linguistic and conceptual nature of the young people’s experiences.
Findings: The findings are presented within a superordinate theme, Achieving a sense of well-being, and three subordinate themes: 1) Being vulnerable; 2) Being free from incontinence and learning to live with limitations; and 3) Finding my normal. In brief, prior to BA the young people’s lives were associated with unpredictable episodes of incontinence, which left them feeling vulnerable. Following surgery, they learned to negotiate the limits of their BA and discovered a new sense of freedom. The young people achieved a sense of normal through gaining autonomy and self-acceptance that allowed them to self-transcend to a sense of well-being.