Att leva med urinläckage till följd av ryggmärgsskada: självkänsla och psykiskt välmående ur barns, ungdomars och föräldrars perspektiv

Sammanfattning: The aim of the study is to explore the meaning of living with urinary incontinence caused by Spina Bifida, self-esteem, psychological well-beeing and expectations on treatment of urinary incontinence in 10 children and adolescents, 9-20 years old, as well as their parents perspective. The study was conducted through semi-structured interviewes as well as self-reports about self-esteem ("I think I am"; Ouvinen-Birgerstam, 1999) and psychological well-beeing (Beck Ungdomsskalor; Beck, Beck & Jolly, 2004). To examine the parents insight in their childrens situation and well-beeing parents proxy-reports was compared to their childrens self-reports. The results showed that psychological well-beeing and self-esteem of the children and adolescents in this study was comparable to normgroups, but that there was big individual differences. The parents proxy-reports are comparable to their childrens self-reports, but vary depending on the domain beeing estimated. Anxiety and depression tends to increase with age. The urinary-incontinence brings constant worry and uncertainty as well as practical consequences like routines to handle the incontinence, which leads to limited freedom, ability to get around and self-efficacy. Need of help from others, level of urinary-incontinence and bullying are factors that further influence the childrens self-esteem and psychological well-beeing. The parents psychological well-beeing is also affected by the childrens disabilities, they have good insight in their childrens situation but worry more about the medical consequences and their childrens future. The results indicate a great variation within the group and that there are many other factors, except the urinary-incontinence, that influence the children and adolescents self-esteem and psychological well-beeing. Treatment should be individualized and focused on both children, adolescents and parents.