Quality of life of children and adolescents with congenital anorectal malformations.

Abstract

Background: anorectal malformations an at first glance invisible disorder - triggers the affected children and young people and their parents strong unease and is therefore often concealed and secretive. The problems are not less if the affected children grown up. Incontinence can affect quality of life and massive psychosocial developmental disorders can arrive (Jenetzky & Black 2008). Affected children and adolescents must make diets, they suffer from abdominal pain, incontinence and constipation, feel impaired in their body image and often they have feelings of fear and shame. In the social sphere, the children have to get difficulties to get in contact with their classmates and they are in school often absent or distracted (Grano et al. 2013). Objective: The aim of the present literature review is to describe the quality of life of children and adolescents with anorectal malformations and show developmental change in physical, psychological and social area. Method: To answer the question, a literature search was conducted. For this the relevant databases PubMed". " CINAHL with full text", ,,PsycInfo" and ,,Cochrane" were used. Results: The literature research shows, that children and young people with anorectal malformations have a worse quality of life than their healthy peers. They are ashamed, feel different than others and are afraid that they smell badly, They see themselves as unattractive and are often dissatisfied with their bodies. Among the adolescents there are significant gender differences: female adolescents, whether health or with anorectal malformations, have a worse quality of life than male adolescents (Michel et al 2009, cited by Grano et al 2013). Obviously pubertal development specificities of the two genders are responsible for this result (Patton et al. 2007, Petersen et al. 1991, cited in Grano et al. 2013). Children with fecal incontinence are in their behavior more prominent than their healthy peers and have more psychological/ psychosocial problems as their classmates in the exercise of activities of daily living, for example during routine school activities, during sports or if they say with friends (Hamid et al. 2007, cited by Grano et al. 2012). Conclusion: The multiple problems in the social, physical and psychological area make it necessary for children and adolescents with anorectal malformations to get early support (bowel management program, psychologist, group therapy). For example, affected children may begin already with 3¹/₂ years with a bowel management program to prevent negative consequences and/or to avoid social exclusion (Bischoff et al. 2009. cited in Grano et al. 2012). For parents, it is important that they learn to accept the child's illness and to help the children to cope their illness better. With this support in childhood it will be possible to accept the disease better and to integrate it into their self-image (Schmidt et al. 2010).