Università degli Studi di Modena e Reggio Emilia
Corso di laurea in infermieristica - Sede di Modena
| Thesis Title | Crigler-Najjar syndrome as a rare genetic disorder: the figure of family nurse in response to the need of an integrated assistance project |
|---|---|
| Name | Lemma Sonia Francesca |
| Supervisor(s) | Minozzi Cinzia, Nava Letizia |
| Academic Year | 2020/21 |
| Thesis type | Non research thesis |
Abstract
The thesis work aims to study in deep the care needs and support for nursing care for a person suffering from a rare disease, in particular, with Crigler-Najjar syndrome diagnosis. The knowledge of the background and the legislation allow the nurse to become more familiar with this theme and to be a reliable reference point for the person and his / her family, favoring the effectiveness and efficiency of educational and assistance interventions. The thesis work analyzes the Crigler-Najjar syndrome in its clinical characteristics, then, the attention of the thesis is placed in a more targeted manner on the person. In this sense, emerges the need of to take care of the patient-family macrocosm throughout the care process and the support of an integrated care network, which the emerging figure of the Family and Community Nurse responds. This figure, with advanced professional skills, responds to the need of an integrated hospital-territory path, takes care of the person and his / her family in their present and emerging health needs to promote their wellness through an integrated assistance project. The thesis follows a logical path that goes from the general to the particular and ends with the presentation of an integrated assistance project, based on the assumption that it is the Family and Community Nurse who listens to the story of the illness of the person and his / her family to intercept health needs. Conclusions: The Family and Community Nurse as promoter of personalized and long-lasting assistance, mediated by a multidimensional and multidisciplinary approach, represents the competent professional in the territory able to provide concrete assistance and support to the person and his / her family realizing the continuity of care.