An investigation into the psychological impact of bladder exstrophy

Bladder exstrophy is a congenital urological disorder, which affects the development of the bladder, genitals and pelvis. Patients undergo a series of operations throughout childhood to construct a continent bladder, which functions normally or requires self-catheterisation. Patients with bladder exstrophy are often left with considerable abdominal scarring and genital abnormalities. The literature suggests that psychosocial outcome for adults with bladder exstrophy is positive. Several studies report psychological difficulties associated with incontinence, self esteem, body image and sexuality in children and adolescents with bladder exstrophy. The literature related to these psychological constructs is considered with reference to normative ideas on adolescent developmental and discussed in relation to the current literature on psychosocial issues in bladder exstrophy. Sixteen semi-structured interviews were conducted with young people (aged between 16 and 21) who have bladder exstrophy. These were analysed using Interpretative Phenomenological Analysis, (IPA) to assist in the systematic description of their accounts. Themes emerging from this analysis were described in terms of domains: "personal impact", "coping with bladder exstrophy" and "interpersonal relationships" and illustrated using quotes from interviews. These results are discussed with reference to the previous literature and general adolescent issues. Methodological issues related to qualitative studies are considered and suggestions made for future research. Clinical implications of this research are discussed in some depth