GIUV2024-614
This Research Group is part of the research project ¿Identification of the socio-sanitary needs of patients with rare diseases: processing the communicative flow in social networks', a project funded by the Ministry of Education, Universities and Employment of the Generalitat Valenciana, Spain (CIAICO/2022/188). 2023-2024. Sebastián Sánchez-Castillo and Eulalia Alonso Iglesias (University of Valencia). 76.000¿
Rare diseases (RD) are, in general, a group of very diverse chronic diseases that are characterised by affecting less than 5 out of 10,000 inhabitants and by presenting a high morbidity and early mortality. They manifest themselves mainly in the paediatric age group and affect human development throughout life, which is why paediatricians are directly involved in the initial diagnosis and follow-up of these patients. 80% of RD are genetic in origin and approximately 30% of children with rare diseases die before the age of 5, which is the average time it takes to reach a diagnosis and establish treatment in one in five affected children. For the rest of life, it is the family doctor who is most directly involved in the detection of these rare diseases and in the routine...This Research Group is part of the research project ¿Identification of the socio-sanitary needs of patients with rare diseases: processing the communicative flow in social networks', a project funded by the Ministry of Education, Universities and Employment of the Generalitat Valenciana, Spain (CIAICO/2022/188). 2023-2024. Sebastián Sánchez-Castillo and Eulalia Alonso Iglesias (University of Valencia). 76.000¿
Rare diseases (RD) are, in general, a group of very diverse chronic diseases that are characterised by affecting less than 5 out of 10,000 inhabitants and by presenting a high morbidity and early mortality. They manifest themselves mainly in the paediatric age group and affect human development throughout life, which is why paediatricians are directly involved in the initial diagnosis and follow-up of these patients. 80% of RD are genetic in origin and approximately 30% of children with rare diseases die before the age of 5, which is the average time it takes to reach a diagnosis and establish treatment in one in five affected children. For the rest of life, it is the family doctor who is most directly involved in the detection of these rare diseases and in the routine follow-up of these patients.
The diagnosis of a rare disease is usually difficult, firstly, due to the complex clinical expression of these diseases, but it is also necessary to take into account the lack of training in these diseases, which leads to a lack of knowledge of the disease by the doctor and a lack of information on the disease itself, as well as the diagnostic tools available, and where help can be obtained. In terms of healthcare, RD have certain peculiarities, such as: the need for multidisciplinary and integrated care, with the incorporation of well-defined and specific circuits between primary care, local or area specialised care and networked reference centres.
In addition to their chronicity, RD are characterised by a significant degree of disability and/or dependence. It is therefore important that the care of these patients does not focus solely on medical complications, but also takes into account the social, psychological, educational/occupational and economic aspects. Also, the connection between the various social and health services close to the patient must take into account the diversity of illnesses and geographical dispersion (urban and rural). The high degree of disability or dependence caused by RD, their complexity and chronic course, lead to a deterioration in the quality of life of those affected and their families, who must receive the appropriate multidisciplinary support from various social policies (Avellaneda et al., 2007).
Taking the above into account, this project focuses on the analysis of the communication flow in social networks from patients with RD, their families, carers and associations. In particular, it focuses on identifying the social and healthcare needs of this group, detecting their most pressing problems and assessing their opinion on health actions and policies. Both because of their number and severity and because of the situation in which those affected find themselves, RD have special recognition within European Union programmes and occupy an increasingly important place in social debates on health and disease. The data obtained in this project will also serve to provide primary care physicians and the entire research community with more and more up-to-date information on the vital state of people suffering from these diseases. And these data should not only provide guidance on the clinical evolution of patients.
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- Enfermedades Raras
- Redes Sociales
- Analisis del discurso
- Comunicacion
- Rare diseases and media.The Research Group focuses on analysing communication flows on social media from patients with RD, their families, carers and associations. In particular, it focuses on identifying the social and healthcare needs of this group.
| Name | Nature of participation | Entity | Description |
|---|---|---|---|
| SEBASTIAN SANCHEZ CASTILLO | Director | Universitat de València | |
| Research team | |||
| EULALIA ALONSO IGLESIAS | Member | Universitat de València | |
| ANTONIO MIGUEL BAÑÓN HERNÁNDEZ | Collaborator | Universidad de Almería | full university professor |
| CLARA CAVERO CARBONELL | Collaborator | Fundacion para el Fomento de la Investigacion Sanitaria y Biomedica de la Comunitat Valenciana (FISABIO) | researcher |
| JOSEP SOLVES ALMELA | Collaborator | Universidad Cardenal Herrera-CEU | pre-tenured lecturer |
| VICTORIA TUR VIÑES | Collaborator | Universitat d'Alacant | full university professor |
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- Language Theory and Communication Sciences
