Att möta det oväntade : Tidigt föräldraskap till barn med Downs syndrom

Sammanfattning: The purpose of this dissertation was to increase - through an empirical investigation - our understanding of early parenthood in relation to children with Down syndrome. My point of departure has been the parents’ life-worlds, and I have developed an accompanying working method. Ten families with newborn infants with Down syndrome were followed through regular home visits during the first year of the child’s life. Working together with a colleague, I have talked with the parents, listened to their stories, and observed and experienced the interaction between the parents and their children. This working method makes it possible to follow various processes taking place within the family. Frequent descriptions and renderings of parent stories from 125 visits constitute the empirical material that has been analyzed and interpreted. The interpretation has been used to develop concepts that, in turn, permit generalization beyond the group under study. When considered together, these concepts provide a way of understanding parenthood in relation to children with Down syndrome. A central theme of the study is the parents’ different ways of relating to their conflicting feelings for the child as well as for parenthood and relationships with family members, friends and professional support people. Starting from the attitudes identified in the investigation resulted in the creation of a simple typology. Parents with an idealizing attitude gave priority to positive emotions and reactions. When negative or problematic aspects were predominant, I have described the parents’ attitudes as struggling, whereas those who generally avoided strong feelings have been characterized as having an everyday way of relating. These concepts are directly anchored in the empirical material and, thereby, in the parents’ life-worlds. In order to represent my personal understanding of the parents’ life-worlds, I have also – based on the empirical data – written narrative reconstructions, that is, short stories in fictional form. What characterizes all parents in the study, regardless of how they dealt with their conflicting feelings, is that they tried to protect their relationship to the child from very strong negative reactions. Parents needed support from the people closest to them, and could become disappointed when such support was insufficient. This dependence was partially transferred to professional contacts, which became crucial to development of the parental role. Idealizing parents perceived that the professionals were treating them well. Those with an everyday attitude were content, whereas the struggling parents often felt they were being misunderstood and offended. This leads to the question of the extent to which parents’ own attitudes affect the quality of professional treatment. The manner in which parenthood is reflected by people in private as well as professional networks has consequences for development of the parental identity.