Enfermedades raras en la infancia. Protocolo de intervención desde el Trabajo Social
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2021-02-18
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[ES]Las enfermedades raras son aquellas caracterizadas por ser de baja prevalencia, las cuales presentan
dificultad diagnóstica y falta de investigación, provocando inestabilidad en el núcleo familiar,
además de ocasionar repercusiones negativas en el ámbito social. Es un proceso duro que conlleva
largos tratamientos médicos, los cuales provocan secuelas tanto físicas como psíquicas en la persona
que lo padece y su entorno más cercano, pero esta situación es más compleja cuando hablamos de
menores.
Mediante el presente Trabajo Fin de Máster se pretende profundizar en los diferentes ámbitos en que
repercuten las enfermedades raras cuando la persona afectada es un menor. Por tanto, se propone un
Protocolo de Intervención desde el Trabajo Social a través del cual se pone de manifiesto la
imbricación y la importancia de la figura del/la trabajador/a social como parte del equipo
multidisciplinar, cuyo objetivo es lograr una atención integral a los pacientes y sus familiares.
[EN]Rare diseases are those characterized by low frequency, diagnostic difficulty and lack of research, which cause instability in the family, as well as having negative repercussions in the social sphere. It is a hard process that involves long medical treatments, which cause both physical and psychological sequelae in the person who suffers from it and their immediate environment. But this situation is more difficult when we are talking about children. Through the present End of Degree Project, it is intended to deepen in the different fields in which rare diseases have an impact, when the one who suffers it is a child. Therefore, a Protocol of intervention from Social Work is proposed, since it is considered especially relevant to highlight the overlap and importance of the social worker as part of the multidisciplinary team, whose objective is to achieve comprehensive care for patients and their families.
[EN]Rare diseases are those characterized by low frequency, diagnostic difficulty and lack of research, which cause instability in the family, as well as having negative repercussions in the social sphere. It is a hard process that involves long medical treatments, which cause both physical and psychological sequelae in the person who suffers from it and their immediate environment. But this situation is more difficult when we are talking about children. Through the present End of Degree Project, it is intended to deepen in the different fields in which rare diseases have an impact, when the one who suffers it is a child. Therefore, a Protocol of intervention from Social Work is proposed, since it is considered especially relevant to highlight the overlap and importance of the social worker as part of the multidisciplinary team, whose objective is to achieve comprehensive care for patients and their families.