MARC details
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nmi a22 7a 4500 |
| 005 - DATE AND TIME OF LATEST TRANSACTION |
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20180131171107.0 |
| 006 - FIXED-LENGTH DATA ELEMENTS--ADDITIONAL MATERIAL CHARACTERISTICS |
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| 007 - PHYSICAL DESCRIPTION FIXED FIELD--GENERAL INFORMATION |
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c| zz uauauuua |
| 008 - FIXED-LENGTH DATA ELEMENTS--GENERAL INFORMATION |
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180124d2016 sp ||||| |||| 00| 0 spa d |
| 040 ## - CATALOGING SOURCE |
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| Transcribing agency |
Salus Infirmorum |
| 100 1# - MAIN ENTRY--PERSONAL NAME |
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| Personal name |
Coronado Gutiérrez, Miguel |
| 9 (RLIN) |
487 |
| 245 10 - TITLE STATEMENT |
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| Title |
Impacto de la fibrodisplasia osificante progresiva en el bienestar del afectado y su cuidador / |
| Statement of responsibility, etc. |
Miguel Coronado Gutiérrez; tutor: D. Óscar Álvarez López |
| Medium |
[Trabajo Fin de Grado] |
| 260 ## - PUBLICATION, DISTRIBUTION, ETC. |
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| Date of publication, distribution, etc. |
2016 |
| 300 ## - PHYSICAL DESCRIPTION |
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| Extent |
1 archivo (word) ; |
| Dimensions |
1,85 mb |
| 500 ## - GENERAL NOTE |
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| General note |
Trabajo fin de grado. Defendido en 2016 |
| 520 3# - SUMMARY, ETC. |
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| Summary, etc. |
Introducción: La fibrodisplasia osificante progresiva es la causa más grave de osificación ectópica en humanos. Se caracteriza por malformaciones esqueléticas congénitas y placas de hueso maduro (endocondral) en el músculo y en otras estructuras ricas en tejido conjuntivo. El origen de la enfermedad es una mutación en el gen del receptor de la activina A tipo I. <br/>Objetivos: Describir la experiencia personal de varios afectados de fibrodisplasia osificante progresiva de España y describir la experiencia del cuidado por parte de los cuidadores principales de los afectados.<br/>Material y método: Para dar respuesta a los objetivos se ha desarrollado un estudio descriptivo de trayectoria fenomenológica. Se trata de un estudio de ámbito nacional dividido en dos Análisis, el primero (Análisis I) contó con la colaboración de 6 afectados por fibrodisplasia osificante progresiva y el segundo (Análisis II) con el correspondiente cuidador principal de cada uno de los afectados. Se realizó una entrevista de carácter individual a cada sujeto de estudio siendo entregado previamente el Consentimiento Informado. <br/>Resultados: La mayoría de los afectados se consideran personas sanas y fuertes aunque son conscientes de los riesgos añadidos que conlleva la enfermedad, mostrando un apego especial por la figura materna, al ser ésta su gran apoyo desde el inicio de la enfermedad. Los cuidadores principales de afectados de fibrodisplasia osificante progresiva sufren pérdidas en los aspectos relevantes de sus vidas e intereses que se han visto interrumpidos por el cuidado familiar, llegando a perder el sentido de la propia vida. <br/>Conclusiones: A la vista de los resultados, la mayoría de los afectados se consideran personas sanas y fuertes, siendo conscientes del impacto que ha supuesto la enfermedad en sus vidas. Adquiere una especial entidad la figura materna como cuidador principal y gran apoyo de los afectados.<br/> |
| 520 8# - SUMMARY, ETC. |
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| Summary, etc. |
Introduction: Fibrodysplasia ossificans progressiva is the most severe and disabling disorder of ectopic ossification in humans. It is characterized by congenital skeletal abnormalities in association with widespread extra skeletal endochondral osteogenesis in the muscle and in other structures rich in conjunctive tissue. The origin of the illness is a mutation in the activin A type 1 receptor.<br/>Objectives: Describe the personal experience of several patients affected by fibrodysplasia ossificans progressiva in Spain, as well as, describe the experience of care from primary caregivers of those affected.<br/>Material and method: A descriptive study on the phenomenological path has been developed in order to achieve the objectives. It has been taken a range across Spain, divided into two analyses; in the first one (Analysis I) collaborated six fibrodysplasia ossificans progressiva patients and the second one (Analysis II) had the assistance of the correponding primary caregivers. In both cases, a personal interview was conducted with each subject of study, being them previously notified of Informed Consent.<br/>Outcomes: Most of the patients feel themselves as healthy and strong people, although they are aware of the additional risks this illness involves. Special attachment with their mothers is the most highlighted feature, as a result of their main support from the very onset of the illness. Primary caregivers of fibrodysplasia ossificans progressiva affected suffer losses in relevant aspects of their lives and interests that have been interrupted by family care, getting to lose the meaning of their life.<br/>Conclusions: In view of the outcomes, it can be concluded that fibrodysplasia ossificans progressiva has a huge impact on the patient’s lives. A special entity acquires the mother as primary caregiver and great support of affected<br/> |
| 653 ## - INDEX TERM--UNCONTROLLED |
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| Uncontrolled term |
Enfermedades músculo-esqueléticas |
| 653 ## - INDEX TERM--UNCONTROLLED |
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| Uncontrolled term |
miositis osificante |
| 653 ## - INDEX TERM--UNCONTROLLED |
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| Uncontrolled term |
cuidadores |
| 653 ## - INDEX TERM--UNCONTROLLED |
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| Uncontrolled term |
cuidadores familiares |
| 653 ## - INDEX TERM--UNCONTROLLED |
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| Uncontrolled term |
osificación ectópica |
| 653 ## - INDEX TERM--UNCONTROLLED |
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| Uncontrolled term |
enfermedades raras |
| 653 ## - INDEX TERM--UNCONTROLLED |
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| Uncontrolled term |
historia |
| 653 ## - INDEX TERM--UNCONTROLLED |
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| Uncontrolled term |
Musculoskeletal diseases |
| 653 ## - INDEX TERM--UNCONTROLLED |
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| Uncontrolled term |
myositis ossificans |
| 653 ## - INDEX TERM--UNCONTROLLED |
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| Uncontrolled term |
caregivers |
| 653 ## - INDEX TERM--UNCONTROLLED |
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| Uncontrolled term |
family caregivers |
| 653 ## - INDEX TERM--UNCONTROLLED |
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| Uncontrolled term |
heterotopic ossification |
| 653 ## - INDEX TERM--UNCONTROLLED |
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| Uncontrolled term |
rare diseases |
| 700 1# - ADDED ENTRY--PERSONAL NAME |
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| Personal name |
Álvarez López, Óscar |
| 9 (RLIN) |
488 |
| 710 2# - ADDED ENTRY--CORPORATE NAME |
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| Corporate name or jurisdiction name as entry element |
Universidad Pontificia de Salamanca. |
| Subordinate unit |
Facultad de Enfermería y Fisioterapia Salus Infirmorum. |
| -- |
Grado en Enfermería. |
| 9 (RLIN) |
489 |
| 942 ## - ADDED ENTRY ELEMENTS (KOHA) |
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| Source of classification or shelving scheme |
Universal Decimal Classification |
| Koha item type |
TFG/TFM |
