Life circumstances of children and adolescents after cochlear implantation

Sammanfattning: Introduction: In Sweden, about 300 children every year are born with hearing impairment (HI), and about 50 of them with severe HI. Today, these children are treated with either hearing aid (HA) or cochlear implant (CI). The goal of the CI is for the child to develop hearing and spoken language, facilitating communication with the hearing majority society and thus increasing the child’s wellbeing and participation in society. Where the child is not using his or her CI, the intended spoken language development does not occur. Cochlear implantation was introduced as a treatment in the 1990s, so intensive research and development has taken place in the field. However, few studies have focused on the children’s physical, emotional, and social situation or on the functioning of the CI, especially from children’s own perspective. Aim: The overall aim of the thesis is to provide increased knowledge about life circumstances and condition of children and adolescents after surgery with CI. Methods: This thesis comprises four studies on children with a CI, focusing: children’s own experience of using CI compared to the experience of children with HA (Study I); the children’s self-reports of their mental health compared to their parents’ and teachers’ perspectives (Study II); the cildren’s personal and social resources (Study III); and the parents’ perspective of having a child with CI (Study IV). Both quantitative (studies I–III) and qualitative (Study IV) methodology has been used. Studies I–III are cross-sectional, based on questionnaires completed by four participant groups: children with CI, children with HA, parents, and teachers, whose data has been used in different ways in the three studies. Children with CI included in studies I–III were obtained from the same sample (36 children with CI). Study IV is a retrospective, qualitative study using meaning categorization to analyze individual interviews with twelve parents of children with CI. Results: In Study I, children with CI were able to function well in everyday life situations, also in comparison to children with HA. In Study II, they expressed greater concern about their mental health compared to their parents and teachers. However, they did not show more difficulties or mental ill health compared to children in general. Children with CI who had a high sense of coherence (SOC) also had good mental health. Closeness of the social network, especially in school, was seen as important for good mental health (Study III). Parents of children who use the CI full-time were determined and used clear parenting strategies whereas parents of children with limited use of the CI paid more attention to attitudes in their environment (Study IV). Conclusion: Children who were implanted with CI during the period 1994 - 2005 had good functioning in everyday life; better than children with HA in outdoor and group activities. They showed good personal and social resources. This, however, does not mean that difficulties do not exist. The child’s own perspective on e.g. mental health problems needs to be attended to. Good parenting strategies are facilitating the child’s use of the CI, why it is important to enhance parent’s knowledge about disability, and it’s challenges, foster positive coping strategies, and give individualized rehabilitation both to the parents and the child.