Wilson Christine J, Pistrang Nancy, Woodhouse Christopher R J, Christie Deborah
Department of Child and Adolescent Psychological Services, University College London Hospital, London, United Kingdom.
J Adolesc Health. 2007 Nov;41(5):504-8. doi: 10.1016/j.jadohealth.2007.05.021. Epub 2007 Sep 4.
To examine the experiences of young people living with bladder exstrophy.
Qualitative interviews with 16 adolescents aged 16-21 years, exploring the psychological and social impact of bladder exstrophy.
Participants 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.
Many 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.
探讨膀胱外翻患者青少年的经历。
对16名年龄在16至21岁的青少年进行定性访谈，探究膀胱外翻的心理和社会影响。
参与者描述了应对膀胱外翻生活所需面对的困难、解决方法及实际援助。参与者将实际困难、自身身份和人际关系确定为三个重要的主要方面。他们讨论了与披露病情性质、遭受欺凌及性关系相关的挑战。尽管描述了诸多困难和挑战，但年轻人一再表达了要像同龄人一样正常生活的决心。
描述了过去和现在经历的许多困难实例。年轻人报告了一系列用于应对慢性健康状况生活需求的创造性应对策略。
