Demanda de apoyo psicosocial en cuidadores de niños con enfermedades de baja prevalencia

Abstract

The denomination of rare diseases includes a heterogeneous group of pathologies characterized by their low prevalence, estimated in less than 5 cases each 10.000 inhabitants. They are chronic diseases, difficult to diagnose, without a complete therapeutic response. It envolves decreasing life expectancy and significant problems to affected individuals. Its adverse impact extends to the family. The work carried out to this context has the following objectives: a) to analyze parents’ perception with regard to the consequences of their children disease and their care and support needs and b) to determine the influence of the associated disability. 33 parents of children diagnosed with rare and unusual illnesses have been interviewed, grouped to two subgroups according to the kind of cognitive or physic suffering. Results reveals that the seriousness of the disease’s physical symptoms has influence on parents perceptions of quality of life. Regardless of the diagnosis, parents, which show high levels of emotional disorders, indicates the necessity of information and training relating to the management of the emotional and behavioural aspects involved.