الفهرس | Only 14 pages are availabe for public view |
Abstract Summary Wilson’s disease is one of the most dangerous chronic liver diseases in children. It causes accumulation of CU in vital organs such as the brain and the liver. The disease can present with fulminant liver failure that is fatal without an emergent l iver transplant . Despite being treatable, children with WD suffer severe disabilities due to delay in initiation and difficulty in monitoring treatment. So , these children often have complex long - term needs that are best addressed by a purposeful family - ce ntered intervention. FCC is an important component of professionals’ practice for children with chronic conditions th at make a difference in their lives and their families. There has been a growing understanding of the role of the family in these children life and the importance of the insights of parents into their child’s abilities and needs. The literature in professional care for children with chronic diseases is giving repeatedly three important aspects for the implementation of FCC into practice. It i ncludes Information exchange, respectful and supportive care and partnership or enabling. These valuable aspects of interpersonal care giving a foundation for enhancing FCC approach for children with WD |