Abstract
Purpose: This study aimed to reveal the mothers' experiences of transitional medicine for their young and adult children having rare diseases. Methods: The date obtained from interviews with twenty-three mothers belong to society of the patients and the families were qualitatively and inductively analyzed. Results: The mothers' experiences of transitional medicine from pediatric to adult health care for their children with rare diseases were classified into seven categories. The mothers group following the transitional medicine showed [reluctance to accept the transition of medicine] at the initial stage of transition, and the mothers not following the transition to adult health care had [an understanding that the children could receive the pediatrician's treatment throughout the children's life]. On the other hand, the mothers showed [reluctance to accept the transition of medicine], but felt relieved to know that [the cure and the care given by the pediatrician remained unchanged] except for the doctor. These mothers recognized the changes of their children's social life, so that they changed their mind [shift from treatment of children to caring for children], and always expected to get [the latest medical information and the opportunities to receive the latest treatment]. Conclusion: These parents were afraid that their children might be short-lived, so that they have not taken measures against adult-onset diseases for their children. In consideration of this, it is necessary to prepare the adult health care system that can provide proper care and cure for the child-onset rare diseases in compliance with wishes of the patients and their families, and offer useful information about adult health management to those patients with child-onset rare diseases after they come of age.
