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        "titulo" => "Abstract"
        "resumen" => "<span class="elsevierStyleSectionTitle">Background</span><p class="elsevierStyleSimplePara elsevierViewall">While home mechanical ventilation &#40;HMV&#41; prolongs survival in selected groups of patients&#44; its use is associated with progressive dependency in basic activities&#44; and many users will require informal care in their homes&#46; The workload assumed by the informal caregivers can have financial&#44; physical&#44; and psychological repercussions&#46; Our objective was to study dependent patients on HMV&#44; and to describe the impact of the situation on their caregivers&#46;</p> <span class="elsevierStyleSectionTitle">Patients and methods</span><p class="elsevierStyleSimplePara elsevierViewall">In November 2007&#44; we undertook a descriptive cross-sectional study of patients in stable condition who had been receiving HMV for at least 6 months&#46; Using the Katz index&#44; we identified dependent patients &#40;class C and higher&#41;&#46; In this group we studied social and economic variables&#44; comorbidity&#44; and need for care&#46; The Zarit interview was used to evaluate the caregiver burden&#46;</p> <span class="elsevierStyleSectionTitle">Results</span><p class="elsevierStyleSimplePara elsevierViewall">Of the 66 patients enrolled&#44; 20 &#40;30&#37;&#41; were dependent&#46; The mean &#40;SD&#41; age in this group was 60 &#40;12&#41; years and 46&#37; were women&#46; These patients had been on HMV for a mean of 45 months&#44; and 40&#37; were using ventilatory support for over 12<span class="elsevierStyleHsp" style=""></span>hours per day&#46; Care was provided by women in the majority of cases &#40;77&#37;&#41;&#44; and 58&#37; were sole caregivers&#46; The mean age of these carers was 51 years&#44; and 70&#37; of them also worked outside the home&#46; In 7 cases &#40;35&#37;&#41;&#44; the caregiver scored over 40 on the Zarit index&#46;</p> <span class="elsevierStyleSectionTitle">Conclusions</span><p class="elsevierStyleSimplePara elsevierViewall">One third of the patients required informal care in order to remain in their homes&#46; Most of the caregivers were women&#44; and one third were overburdened or were at risk of becoming so&#46; Changes involving both physicians and the health authorities are needed to provide satisfactory care to this group of patients&#46;</p>"
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        "resumen" => "<span class="elsevierStyleSectionTitle">Introducci&#243;n</span><p class="elsevierStyleSimplePara elsevierViewall">La ventilaci&#243;n mec&#225;nica domiciliaria &#40;VMD&#41; aumenta la supervivencia en grupos seleccionados de pacientes&#44; pero se asocia a dependencia progresiva para las actividades b&#225;sicas y muchos pacientes necesitar&#225;n cuidadores informales en su domicilio&#46; &#201;stos asumen una carga de trabajo que puede tener repercusiones econ&#243;micas&#44; f&#237;sicas y&#47;o ps&#237;quicas&#46; Nuestro objetivo ha sido estudiar a pacientes con VMD y dependencia&#44; y describir el impacto sobre sus cuidadores&#46;</p> <span class="elsevierStyleSectionTitle">Pacientes y m&#233;todos</span><p class="elsevierStyleSimplePara elsevierViewall">En noviembre de 2007 estudiamos de forma descriptiva y transversal a pacientes con un m&#237;nimo de 6 meses en VMD&#44; en situaci&#243;n estable&#46; Se identific&#243; a los dependientes aplicando el &#237;ndice de Katz &#40;&#237;ndice C y superiores&#41;&#46; En este grupo se estudiaron variables socioecon&#243;micas&#44; de comorbilidad y de necesidad de cuidados&#46; Para establecer la sobrecarga del cuidador se aplic&#243; el &#237;ndice de Zarit&#46;</p> <span class="elsevierStyleSectionTitle">Resultados</span><p class="elsevierStyleSimplePara elsevierViewall">De los 66 pacientes incluidos&#44; 20 &#40;30&#37;&#41; mostraban dependencia &#40;edad media &#177; desviaci&#243;n est&#225;ndar&#58; 60<span class="elsevierStyleHsp" style=""></span>&#177;<span class="elsevierStyleHsp" style=""></span>12 a&#241;os&#59; 46&#37; mujeres&#41;&#44; llevaban una media de 45 meses en VMD y el 40&#37; recib&#237;a ventilaci&#243;n durante m&#225;s de 12<span class="elsevierStyleHsp" style=""></span>h al d&#237;a&#46; En los cuidadores&#44; el 58&#37; era cuidador &#250;nico&#44; la mayor&#237;a eran mujeres &#40;77&#37;&#41;&#44; la edad media era de 51 a&#241;os y un 70&#37; trabajaba adem&#225;s fuera del domicilio&#46; El &#237;ndice de Zarit en 7 casos &#40;35&#37;&#41; era superior a 40&#46;</p> <span class="elsevierStyleSectionTitle">Conclusiones</span><p class="elsevierStyleSimplePara elsevierViewall">En nuestra serie&#44; una tercera parte de los pacientes precisan cuidadores informales para poder permanecer en su entorno&#46; El cuidador es mayoritariamente del sexo femenino&#44; y un tercio tiene sobrecarga real o corre el riesgo de presentarla&#46; Para adecuar la asistencia a este colectivo har&#225;n falta cambios que impliquen a los m&#233;dicos y a la Administraci&#243;n sanitaria&#46;</p>"
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Vol. 45. Issue 8.
Pages 383-386 (August 2009)
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Vol. 45. Issue 8.
Pages 383-386 (August 2009)
Original article
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Home Mechanical Ventilation: Dependency and Burden of Care in the Home
Ventilación mecánica domiciliaria: dependencia y carga de cuidados en el domicilio
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4532
Ramón Fernández-Álvarez
Corresponding author
enelllano@gmail.com

Corresponding author.
, Gemma Rubinos-Cuadrado, Cristina Cabrera-Lacalzada, Rosa Galindo-Morales, José Antonio Gullón-Blanco, Isidro González-Martín
Servicio de Neumología, Hospital Universitario de Canarias, La Laguna, Santa Cruz de Tenerife, Spain
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Abstract
Background

While home mechanical ventilation (HMV) prolongs survival in selected groups of patients, its use is associated with progressive dependency in basic activities, and many users will require informal care in their homes. The workload assumed by the informal caregivers can have financial, physical, and psychological repercussions. Our objective was to study dependent patients on HMV, and to describe the impact of the situation on their caregivers.

Patients and methods

In November 2007, we undertook a descriptive cross-sectional study of patients in stable condition who had been receiving HMV for at least 6 months. Using the Katz index, we identified dependent patients (class C and higher). In this group we studied social and economic variables, comorbidity, and need for care. The Zarit interview was used to evaluate the caregiver burden.

Results

Of the 66 patients enrolled, 20 (30%) were dependent. The mean (SD) age in this group was 60 (12) years and 46% were women. These patients had been on HMV for a mean of 45 months, and 40% were using ventilatory support for over 12hours per day. Care was provided by women in the majority of cases (77%), and 58% were sole caregivers. The mean age of these carers was 51 years, and 70% of them also worked outside the home. In 7 cases (35%), the caregiver scored over 40 on the Zarit index.

Conclusions

One third of the patients required informal care in order to remain in their homes. Most of the caregivers were women, and one third were overburdened or were at risk of becoming so. Changes involving both physicians and the health authorities are needed to provide satisfactory care to this group of patients.

Keywords:
Home mechanical ventilation
Caregivers
Dependency
Resumen
Introducción

La ventilación mecánica domiciliaria (VMD) aumenta la supervivencia en grupos seleccionados de pacientes, pero se asocia a dependencia progresiva para las actividades básicas y muchos pacientes necesitarán cuidadores informales en su domicilio. Éstos asumen una carga de trabajo que puede tener repercusiones económicas, físicas y/o psíquicas. Nuestro objetivo ha sido estudiar a pacientes con VMD y dependencia, y describir el impacto sobre sus cuidadores.

Pacientes y métodos

En noviembre de 2007 estudiamos de forma descriptiva y transversal a pacientes con un mínimo de 6 meses en VMD, en situación estable. Se identificó a los dependientes aplicando el índice de Katz (índice C y superiores). En este grupo se estudiaron variables socioeconómicas, de comorbilidad y de necesidad de cuidados. Para establecer la sobrecarga del cuidador se aplicó el índice de Zarit.

Resultados

De los 66 pacientes incluidos, 20 (30%) mostraban dependencia (edad media ± desviación estándar: 60±12 años; 46% mujeres), llevaban una media de 45 meses en VMD y el 40% recibía ventilación durante más de 12h al día. En los cuidadores, el 58% era cuidador único, la mayoría eran mujeres (77%), la edad media era de 51 años y un 70% trabajaba además fuera del domicilio. El índice de Zarit en 7 casos (35%) era superior a 40.

Conclusiones

En nuestra serie, una tercera parte de los pacientes precisan cuidadores informales para poder permanecer en su entorno. El cuidador es mayoritariamente del sexo femenino, y un tercio tiene sobrecarga real o corre el riesgo de presentarla. Para adecuar la asistencia a este colectivo harán falta cambios que impliquen a los médicos y a la Administración sanitaria.

Palabras clave:
Ventilación mecánica domiciliaria
Cuidadores
Dependencia
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Copyright © 2009. Sociedad Española de Neumología y Cirugía Torácica
Archivos de Bronconeumología
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