Originales
Características y calidad de vida de los cuidadores informales de enfermos de sida
Characteristics and quality of life of informal caregivers of patients with AIDS
Carmen Fuentelsaz-Gallegoa,
, Inmaculada Úbeda-Bonetb, Montserrat Roca-Rogerb, Teresa Faura-Vendrellb, Anna M. Salas-Pérezc, Dolors Buisac-Gonzálezd, Carmen López-Mateua, Montserrat Lacarcel-Comasd
Autor para correspondencia
cfuentelsaz@vhebron.net
Correspondencia: C. Fuentelsaz-Gallego. Hospital Universitario Vall d’Hebron. P.° Vall d’Hebron, 119-129. 08035 Barcelona. España.
Correspondencia: C. Fuentelsaz-Gallego. Hospital Universitario Vall d’Hebron. P.° Vall d’Hebron, 119-129. 08035 Barcelona. España.
a Hospital Universitario Vall d’Hebron. Barcelona. España
b Escuela de Enfermería. Universidad de Barcelona. Barcelona. España
c Unidad VIH. Hospital Germans Trias i Pujol. Badalona. Barcelona. España
d Unidad VIH. Ciutat Sanitària i Universitària de Bellvitge. L’Hospitalet de Llobregat. Barcelona. España
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España" "etiqueta" => "<span class="elsevierStyleSup">a</span>" "identificador" => "aff1" ] 1 => array:3 [ "entidad" => "Escuela de Enfermería. Universidad de Barcelona. Barcelona. España" "etiqueta" => "<span class="elsevierStyleSup">b</span>" "identificador" => "aff2" ] 2 => array:3 [ "entidad" => "Unidad VIH. Hospital Germans Trias i Pujol. Badalona. Barcelona. España" "etiqueta" => "<span class="elsevierStyleSup">c</span>" "identificador" => "aff3" ] 3 => array:3 [ "entidad" => "Unidad VIH. Ciutat Sanitària i Universitària de Bellvitge. L’Hospitalet de Llobregat. Barcelona. España" "etiqueta" => "<span class="elsevierStyleSup">d</span>" "identificador" => "aff4" ] ] "correspondencia" => array:1 [ 0 => array:3 [ "identificador" => "cor1" "etiqueta" => "⁎" "correspondencia" => "Correspondencia: C. Fuentelsaz-Gallego. Hospital Universitario Vall d’Hebron. P.° Vall d’Hebron, 119-129. 08035 Barcelona. España." ] ] ] ] "titulosAlternativos" => array:1 [ "en" => array:1 [ "titulo" => "Characteristics and quality of life of informal caregivers of patients with AIDS" ] ] "pdfFichero" => "main.pdf" "tienePdf" => true "fechaAceptado" => "2006-01-28" "PalabrasClave" => array:2 [ "es" => array:1 [ 0 => array:4 [ "clase" => "keyword" "titulo" => "Palabras clave" "identificador" => "xpalclavsec206407" "palabras" => array:4 [ 0 => "Cuidador informal" 1 => "Persona enferma de sida" 2 => "Enfermería" 3 => "Calidad de vida" ] ] ] "en" => array:1 [ 0 => array:4 [ "clase" => "keyword" "titulo" => "Key words" "identificador" => "xpalclavsec206408" "palabras" => array:4 [ 0 => "Informal caregiver" 1 => "AIDS patient" 2 => "Nursing" 3 => "Quality of life" ] ] ] ] "tieneResumen" => true "resumen" => array:2 [ "es" => array:2 [ "titulo" => "Resumen" "resumen" => "<span class="elsevierStyleSectionTitle">Objetivo</span><p class="elsevierStyleSimplePara elsevierViewall">Conocer las características y la calidad de vida de los cuidadores informales de los enfermos de sida.</p> <span class="elsevierStyleSectionTitle">Método</span><p class="elsevierStyleSimplePara elsevierViewall">Estudio observacional, descriptivo y transversal, realizado en las unidades de referencia de atención a enfermos de sida de 3 hospitales públicos de Barcelona. Se observó a 221 cuidadores informales de estos enfermos, seleccionados de manera no probabilística consecutiva. Se estudiaron las características de las personas enfermas de sida y de sus cuidadores informales. Para identificar los cuidados que prestaba el cuidador y las repercusiones que esta labor tenía sobre su calidad de vida se ha utilizado el cuestionario ICUB97<span class="elsevierStyleSup">®</span>, basado en el modelo de Virginia Henderson.</p> <span class="elsevierStyleSectionTitle">Resultados</span><p class="elsevierStyleSimplePara elsevierViewall">Los enfermos de sida tenían una media de edad de 37 años (desviación estándar<span class="elsevierStyleHsp" style=""></span>=<span class="elsevierStyleHsp" style=""></span>9) y 153 eran varones (69%). El contagio había sido por vía parenteral en 108 casos (49%) y por vía sexual en 98 (44%). Sus cuidadores tenían una media de edad de 50 años (desviación estándar<span class="elsevierStyleHsp" style=""></span>=<span class="elsevierStyleHsp" style=""></span>15) y 173 eran mujeres (78%). El 41% (n<span class="elsevierStyleHsp" style=""></span>=<span class="elsevierStyleHsp" style=""></span>128) había dejado de trabajar o había adaptado su trabajo para cuidar al enfermo. Las necesidades alteradas más frecuentes fueron las de descanso y sueño (170 [77%] estaban más cansados) y la de recreación (156 [71%] tenían menos tiempo libre).</p> <span class="elsevierStyleSectionTitle">Conclusiones</span><p class="elsevierStyleSimplePara elsevierViewall">La mayoría de los cuidadores informales de enfermos de sida son mujeres de mediana edad que prestan un elevado número de cuidados y cuya calidad de vida se ve alterada a consecuencia de esta labor. Las necesidades que presentan más alteradas son la de descanso y sueño y la de recreación.</p>" ] "en" => array:2 [ "titulo" => "Abstract" "resumen" => "<span class="elsevierStyleSectionTitle">Objective</span><p class="elsevierStyleSimplePara elsevierViewall">To determine the characteristics and quality of life of informal caregivers of patients with AIDS.</p> <span class="elsevierStyleSectionTitle">Method</span><p class="elsevierStyleSimplePara elsevierViewall">A cross sectional, descriptive, observational study was carried out in the specialized human immunodeficiency virus units of 3 public hospitals in Barcelona (Spain). Study subjects consisted of 221 caregivers of patients with AIDS from these units. Selection was consecutive and non-probabilistic. The characteristics of both patients and their caregivers were studied. The validated questionnaire, ICUB97<span class="elsevierStyleSup">®</span>, based on Virginia Henderson’s model, was used to measure the care provided by informal caregivers and its consequences on patients’ quality of life.</p> <span class="elsevierStyleSectionTitle">Results</span><p class="elsevierStyleSimplePara elsevierViewall">The mean age of patients with AIDS was 37 years (standard deviation<span class="elsevierStyleHsp" style=""></span>=<span class="elsevierStyleHsp" style=""></span>9); 153 (69%) were men. Transmission was parenteral in 108 (49%) and sexual in 98 (44%). The mean age of their informal caregivers was 50 years (standard deviation<span class="elsevierStyleHsp" style=""></span>=<span class="elsevierStyleHsp" style=""></span>15); 173 (78%) were women. Forty-one percent (n<span class="elsevierStyleHsp" style=""></span>=<span class="elsevierStyleHsp" style=""></span>128) caregivers had stopped working or had adapting their work to caregiving. The most frequently affected activities of the caregivers were resting and sleeping (170 [77%] felt more tired), and leisure (156 [71%] felt they had less leisure time).</p> <span class="elsevierStyleSectionTitle">Conclusions</span><p class="elsevierStyleSimplePara elsevierViewall">Most of the informal caregivers of patients with AIDS were middle-aged women. They provided a high number of caregiving activities and their quality of life was considerably affected by these activities. The areas most affected by caregiving were rest, sleep and leisure.</p>" ] ] "bibliografia" => array:2 [ "titulo" => "Bibliografía" "seccion" => array:1 [ 0 => array:1 [ "bibliografiaReferencia" => array:23 [ 0 => array:3 [ "identificador" => "bib1" "etiqueta" => "1." "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "The economics of informal care of the elderly" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:1 [ 0 => "K. 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