Análisis cualitativo de la realidad social de personas y familias afectadas por enfermedades raras en España
- Juan R. Coca (coord.)
Editorial: CEASGA
ISBN: 978-84-949321-3-7
Any de publicació: 2019
Pàgines: 23-82
Tipus: Capítol de llibre
Resum
This work aims to know the social reality of people and families affected by rare diseases. A qualitative study based on interviews has been carried out. With the information of the interviewees, it has been made an analysis of the content and the discourse of the answers. The data obtained shows us that the people affected by the RE generate a context of great suffering, exclusion and social marginalization. In addition to the urgent need to increase biomedical research, informants also tell us that it is extremely important to introduce support from psychologists and social workers. On the other hand, it is important in educational work to minimize the processes of marginalization and social exclusion.