| Abstrakt: |
Congenital Harlequin Ichthyosis is a rare genetic disease. When the expectation of the parents falls short of reality, it could be devastating to the family. To offer holistic care, nurses have to not only attend to the newborn, but be sensitive to the parents' reactions as well. The research described the nursing experience of a premature infant with congenital harlequin ichthyosis from January 3rd to March 14th, 2011, conducting a literary review on the skin care, feeding issues and parental reactions on children with harlequin ichthyosis, a rare disease. Through physical assessments, conversation and observation during clinical care, the following health issues were identified: high risk for injury, inefficient infant feeding patterns and potential risk for impaired parenting. To solve these nursing issues, it is necessary to satisfy the patient's physical needs and stabilize the vital signs, as well as providing family support and enhance parent-child relationship. We hope that this nursing experience could serve as a reference for nurses in clinical care. [ABSTRACT FROM AUTHOR] |
