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Title: Atención sanitaria de las enfermedades raras en edad pediátrica y sus familias
Author: Pozo Muñoz, Talia
Tutor: Allué Martínez, Xavier
Abstract: Enduring a rare disease throughout pediatric age (<14 years) comes with a suffering for both the person affected themselves and their families, mainly due to the little information available about these pathologies, which can lead to worry and uncertainty about their futures and wellbeing. This state worsens since the delay in the diagnostic and the lack of specific resources. Their particular needs meet every area that compounds their life, however, they are not often taken care of in an adequate manner, with an adequate impact, by the Spanish Sanitary System. Additionally, the incomprehension of these diseases that lies among society can contribute to the social withdrawal that encounters the families involved. Nowadays, social organizations and associations (like the Spanish Federation of Rare Diseases (FEDER)) play an important and significative role by fulfilling, mostly, an emotional support that health care services seem not to safeguard enough. Nevertheless, it is still imperative to guarantee a comprehensive health care system based in a biopsychosocial approach. Thus, the present study pretends to deepen the knowledge related to rare diseases manifested in pediatric age children, detecting their needs and analysing the sanitary health care provided by the state, ending with an improvement suggestion focused in the field of Primary Attention, including the role of the medical-social worker.
Keywords: biopsychosocial approach
rare diseases
sanitary health care
pediatric age
medical-social work
Document type: info:eu-repo/semantics/masterThesis
Issue Date: Jun-2018
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Appears in Collections:Bachelor thesis, research projects, etc.

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