Parents' needs for knowledge concerning the medical diagnosis of their children

It is reported that parents can handle their reactions of having a child with a chronic illness by seeking information and gaining knowledge about the diagnosis. It has been suggested that this is a way for parents to restore order in a chaotic existence. A complement to this perspective is to focus on what it means to be a parent and what is included in parenthood. The purpose of the present study was to increase our understanding of parents' need for knowledge. Interviews were conducted with parents (n = 44) who have experienced receiving a diagnosis of Turner Syndrome (TS) for their daughter, in order to explore the parents' motives and strategies for seeking information about the condition. Out of the 44 parents interviewed, 26 (21 mothers and 5 fathers) had sought information. It was found that the motives for seeking information were, to some extent, related to the parents' experiences of the consultation at the time of diagnosis. Twenty-three parents (21 mothers and 2 fathers) were dissatisfied with the information provided by the physician, while 21 (12 mothers and 9 fathers) were satisfied. Among the dissatisfied parents 16 (15 mothers and 1 father) sought information, and among the satisfied 10 parents (6 mothers and 4 fathers) sought information when they received the diagnosis for their daughter. The mothers described different strategies to gain information. They attended the library to borrow medical literature, looked up the syndrome in reference books, read articles in newspapers and asked questions of other mothers who had daughters with TS. However, it was found that the dissatisfied mothers used more and different strategies to find information compared with the fathers and the mothers who were satisfied. The motives of all the parents were to learn more about the condition. However, the dissatisfied mothers reported that they sought information because they found it important to control the actions of the professionals. The mothers that were satisfied with the information argued that they sought information in order to be able to explain the condition to others.