MARC details
| 000 -LEADER |
|---|
| fixed length control field |
04748nmi a22003017a 4500 |
| 003 - CONTROL NUMBER IDENTIFIER |
|---|
| control field |
OSt |
| 005 - DATE AND TIME OF LATEST TRANSACTION |
|---|
| control field |
20231107172935.0 |
| 006 - FIXED-LENGTH DATA ELEMENTS--ADDITIONAL MATERIAL CHARACTERISTICS |
|---|
| fixed length control field |
m||||| |||| 00| 0 |
| 007 - PHYSICAL DESCRIPTION FIXED FIELD--GENERAL INFORMATION |
|---|
| fixed length control field |
c| zz uauuu |
| 008 - FIXED-LENGTH DATA ELEMENTS--GENERAL INFORMATION |
|---|
| fixed length control field |
180124d2023 sp ||||| |||| 00| 0 spa d |
| 040 ## - CATALOGING SOURCE |
|---|
| Transcribing agency |
Salus Infirmorum |
| 100 1# - MAIN ENTRY--PERSONAL NAME |
|---|
| Personal name |
Velasco Barbera, Paula |
| 9 (RLIN) |
3954 |
| 245 10 - TITLE STATEMENT |
|---|
| Title |
Experiencia del cuidador de una persona con distrofia muscular de duchenne / |
| Statement of responsibility, etc. |
Paula Velasco Barbera; tutor: Hilario Hernández Ovejero |
| Medium |
[Trabajo Fin de Grado] |
| 260 ## - PUBLICATION, DISTRIBUTION, ETC. |
|---|
| Date of publication, distribution, etc. |
2023 |
| 300 ## - PHYSICAL DESCRIPTION |
|---|
| Extent |
1 archivo (pdf.) ; |
| Dimensions |
742 KB |
| 500 ## - GENERAL NOTE |
|---|
| General note |
Trabajo fin de grado. Defendido en 2023 |
| 520 3# - SUMMARY, ETC. |
|---|
| Summary, etc. |
Introducción y objetivos: La Distrofia Muscular de Duchenne (DMD) es una enfermedad rara. Afecta a uno de cada 3500 varones. Es de origen genético, debido a una mutación en el gen de la distrofina. Surge en una edad temprana, se identifica mediante la maniobra de Gowers, cansancio y dificultad en la marcha. Provoca una gran dependencia y la esperanza de vida de estas personas se ve disminuida. En la mayoría de ocasiones, es un progenitor, la madre regularmente, quien adopta el rol de cuidador principal. El objetivo de este estudio es conocer la experiencia del cuidador principal de una persona con DMD. <br/>Material y método: Se trata de un estudio cualitativo de corte fenomenológica para el que se reclutaron siete familias de diferentes lugares de España. Se entrevistó a los cuidadores principales de cada una de ellas para conocer sus vivencias a través de diferentes esferas (diagnóstico, economía, ámbito educativo, personal y familiar). <br/>Resultados: Se analizan los resultados que describen el momento del diagnóstico como un proceso difícil de asimilar, debido al desconocimiento de la patología. Sufren modificaciones a nivel laboral, prescindiendo de su puesto de trabajo. En el ámbito educativo, estos niños necesitan recursos personales y materiales que requieren de un gran empeño de los padres para poder conseguirlos. De la dimensión personal se deduce que presentan lesiones a nivel físico y mental, tras el diagnóstico comienzan a reinventarse como personas de diferentes maneras, entretanto, surgen desencuentros a nivel de pareja. <br/>Conclusiones: La calidad de vida del cuidador principal disminuye según avanza la enfermedad de su hijo. Se enfrenta a diario a barreras de todo tipo. Desde los centros sanitarios debería darse información de calidad para que las familias no necesiten autoformarse en cuidados básicos para sus hijos. |
| 520 8# - SUMMARY, ETC. |
|---|
| Summary, etc. |
Introduction and objectives: Duchenne Muscular Dystrophy (DMD) is a rare disease that affects one in every 3500 males. It is of genetic origin and is caused by a mutation in the dystrophin gene. It appears at an early age and is identified by the Gowers maneuver, fatigue and difficulty walking. It causes a heavy dependence, and life expectancy of those affected is reduced. In most cases, it is a parent, usually the <br/>mother, who takes on the role of primary caregiver. The aim of this study is to understand the experience of the primary caregiver of a person with DMD. <br/>Material and method: It is a qualitative study with a phenomenological approach that recruited seven families from different parts of Spain. The primary caregivers of each family were interviewed to learn about their experiences through different spheres (diagnosis, economy, educational, personal and family). <br/>Results: The results are analyzed in which they describe the moment of diagnosis as a difficult process to assimilate, also due to the lack of knowledge of the pathology. <br/>They suffer modifications at the work level, being forced to give up their job. In the educational field, these children need personal and material resources that require a great effort on the parto the parents to obtain them. From the personal dimensión of the primary caregiver, it is deduced that they present physical and mental injuries. After the diagnosis, they begin to reinvent themselves as people in different ways, and disagreements arise at the couple level. <br/>Conclusions: The quality of life of primary caregivers decreases as their children illness progresses. They fase daily barriers of all kind. From healthcare centers, highquality information should be provided so that families don´t need to self-train in basic care for their children. |
| 653 ## - INDEX TERM--UNCONTROLLED |
|---|
| Uncontrolled term |
distrofia Muscular de Duchenne |
| 653 ## - INDEX TERM--UNCONTROLLED |
|---|
| Uncontrolled term |
calidad de vida |
| 653 ## - INDEX TERM--UNCONTROLLED |
|---|
| Uncontrolled term |
cuidador |
| 653 ## - INDEX TERM--UNCONTROLLED |
|---|
| Uncontrolled term |
Muscular Distrophy Duchenne |
| 653 ## - INDEX TERM--UNCONTROLLED |
|---|
| Uncontrolled term |
life expectancy |
| 653 ## - INDEX TERM--UNCONTROLLED |
|---|
| Uncontrolled term |
caregivers |
| 700 1# - ADDED ENTRY--PERSONAL NAME |
|---|
| Personal name |
Hernández Ovejero, Hilario |
| 9 (RLIN) |
3014 |
| 710 2# - ADDED ENTRY--CORPORATE NAME |
|---|
| 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) |
|---|
| Source of classification or shelving scheme |
Universal Decimal Classification |
| Koha item type |
TFG/TFM |
