The Psychosocial Impact of Bladder Exstrophy in Adolescence

PurposeTo examine the experiences of young people living with bladder exstrophy.MethodsQualitative interviews with 16 adolescents aged 16–21 years, exploring the psychological and social impact of bladder exstrophy.ResultsParticipants described difficulties, solutions, and practical assistance needed to manage living with bladder exstrophy. Participants identified practical difficulties, their identities, and relationships as the three main areas of importance. They discussed challenges associated with disclosing the nature of their condition, being bullied, and sexual relationships. Despite the difficulties and challenges described, young people repeatedly expressed a determination to live their lives as normally as their peers did.ConclusionMany examples of difficulties experienced in the past and the present are described. Young people report a range of creative coping strategies used to respond to the demands of living with a chronic health condition.