"Jag vill också ha en hund ..." : en studie av barn och tonåringar med astma och deras mammor

Sammanfattning: Aim: The overall aim of this thesis is to illuminate meanings of being a child with asthma, to describe what strategies they use to manage their daily life, and how they estimate their quality of life. The aim is also to describe how family relations might be influenced by the child’s asthma disease. Methods: Informants in three qualitative studies were 37 children with asthma and 17 mothers of children with asthma. Informants in a quantitative quality of life study were 226 children with asthma. The data collections were undertaken by means of interviews, observations, and a questionnaire (PAQLQ). The data was analysed by means of phenomenological-hermeneutic method, grounded theory, and statistics. Results: A meaning of being a child with asthma is to strive to live a normal life, which means to be able to participate in the same activities as healthy friends. According to the children, participation is facilitated by confidence in one’s own knowledge, by other people’s wish to help, and by confidence in medicines. On occasions when the disease becomes an obstacle to participation, the children feel like outsiders, and talk about feelings of deprivation, guilt, loneliness, anxiety, and fear. When observing and interviewing teenagers with asthma they showed and expressed that their core concern was not letting the disease get the upper hand over life. To manage this core concern they used three strategies: keeping a distance to the disease, challenging the disease, and taking the disease into consideration. Boys mainly keep a distance to the disease while girls mainly take the disease into consideration. Challenging the disease seems to be a strategy used by both girls and boys. Differences between girls and boys were also seen when children with asthma estimated their quality of life, even though they both estimate their quality of life as comparatively high. A significant association was found between a higher quality of life and being a boy, compared to being a girl. The core concern in families of a child with asthma was found to be disease-engendered uncertainty. The mothers experience themselves as always being available for the child with asthma, owing to the unpredictability of the disease. Control and tight bonds therefore characterize the relation between the mother and the sick child. Being constantly available for the child with asthma, decreases the mothers’ availability for other family members and these relations are described as being characterised by feelings of being forsaken and lack of understanding. Conclusion: One conclusion drawn from this thesis is that life with asthma includes moments of wellbeing for both children with asthma and their mothers, but also moments when they experience that the disease gets the upper hand over life. In assisting them it is of great value to create a milieu where the individuals dare to talk about their experiences and to be aware of possible differences between boys and girls. It is also important never to judge, but to customize care, based on the needs of each individual.