Health, Wellbeing and Self-Esteem: Web-Based Support in Children with Urogenital or Bowel Malformation

1. Introduction Long-term illness is usually a challenge for both children and their families [1]. Children with urogenital malformation or bowel disturbances are a vulnerable group who are at greater risk of experiencing ill health. They are often supported in situations related to their malformation by parents and others. When at school, the child suddenly has to face and cope with situations they are not used to; they often feel excluded, afraid of relationships with the opposite sex and subjected to bullying [2]-[4]. They express a great need for support in daily life [5]-[8]. The social and emotional consequences of long-term illness need to be addressed [9]. However, there is lack of studies investigating prevention of ill health in this group of children. Health promotion is the process of enabling people to increase their control over, and to improve their health. To reach a state of complete physical, mental and social wellbeing, the child must be able to identify and to realize aspirations, to satisfy needs, and to change or cope with the environment. Health is, therefore, seen as a resource, not the objective, in everyday life. Health is a positive concept that emphasizes social and personal resources, as well as physical capacities. Health promotion is not just the responsibility of the health sector; it goes beyond healthy lifestyles to wellbeing [10]. However, the needs of children with the same disease are not necessarily the same. Person-centred care (PCC) is explained as focusing on the person and not on the illness. The purpose is to make care and treatment more personal and to understand behaviour and symptoms from the perspective of the individual patient. To do this, it is important to proceed from knowledge of the sick person’s living patterns and priorities [11]. Studies have been conducted with positive outcomes, mainly for adults with long-term illness but also for young people [12]-[15]. The present study is part of a larger project studying health and wellbeing using person-centred, web-based learning in children with severe urogenital, urological and bowel malformations [16] [17]. Findings from the studies in this project are qualitative in design and show the development of the intervention. The use of SKYPE for interviewing children was also evaluated. This method can be used in the child’s home and is convenient for both the child and the family. The ability to use the body language also facilitated the understanding of the c