Abstract
There is an expectation the healthcare system will provide comprehensive medical care for children during their transition to adulthood. To do so, however, necessitates understanding the respective family experience and dynamic. The purpose of this study is to describe the long-term self-reported experiences of both the father and mother while nurturing a child suffering from Intractable Central Nervous System Disease.
Data was collected in an unstructured interview style and analyzed using qualitative descriptions based on a life story study approach. The study focused on one family's experience. The paper considers a couple who shared and cooperated with nurturing duties for a long time, although there was a slight imbalance with the overall nurturing load. Experiences shared and results obtained suggest a need for the medical profession to review existing patient and family care practice. Reflective, careful thought should be given to better understanding the family dynamic.
