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INFOSA-DEM: programa dirigido a figuras cuidadoras de personas con demencia / INFOSA-DEM: a programme targeted to caregivers of persons with dementia

OBJETIVO: evaluar el impacto del Programa Informativo, Formativo y de Apoyo Social para figuras cuidadoras de personas con demencia (INFOSA-DEM), en relación al bienestar emocional, evaluando el tiempo de permanencia del efecto del programa a los tres y seis meses post-intervención. MÉTODO: se llevó a cabo un diseño cuasi-experimental, multicéntrico, no aleatorizado con grupo intervención (GI) y grupo control (GC). La asignación al GI y GC se realizó a través de muestreo no probabilístico, de asignación intencional, teniendo en cuenta la disponibilidad de las figuras cuidadoras para asistir a las sesiones del proprama diseñado. La recogida de datos fue efectuada por medio de entrevistas personales con la cuidadora o cuidador en el domicilio de la persona con demencia, antes de la intervención y a los tres y seis meses de seguimiento. Se recogieron variables de bienestar emocional y calidad de vida, entre otras. Se llevó a cabo análisis descriptivo y comparativo en los tres momentos de medida. RESULTADOS: participaron 160 figuras cuidadoras, 74 en GC y 86 en GI. A los tres meses se observó un efecto positivo en el bienestar emocional en el GI en comparación con un pequeño efecto negativo entre los controles. Teniendo en cuenta las tres visitas se comprobó que la mejora en dimensión salud relacionada con el bienestar emocional de los cuidadores del GI se mantuvo incluso después de seis meses, aunque las diferencias no fueron estadísticamente significativas. CONCLUSIÓN: los programas educativos dirigidos a cuidadores informales basados en terapias psicoeducativas y teorías cognitivo-conductuales parecen tener efectos positivos en la mejora del bienestar emocional de los cuidadores, y mejora la calidad del rol de la figura cuidadora

OBJECTIVE: to evaluate the impact of the Information, Training and Social Support programme for caregivers of persons with dementia (INFOSA-DEM) in terms of emotional wellbeing, evaluating the duration of the effect of the program at three and six months after the intervention. METHOD: a multicenter and non-randomized study was conducted, with quasi-experimental design, and with an Intervention Arm (IA) and a Control Arm (CA). Participants were allocated to IA or CA though non-probabilistic sample, with intentional allocation, taking into account the availability of the caregivers to attend the sessions of the programme designed. Data were collected through personal interviews with the caregiver at the home of the person with dementia, before the intervention and at three and six months of follow-up. Emotional wellbeing and quality of life variables were collected, among others. Descriptive and comparative analysis was conducted at the three points of measurement. RESULTS: the study included 160 caregivers, 74 in the CA and 86 in the IA. At three months, a positive effect was observed in the emotional wellbeing of the Intervention Arm, vs. a slight negative effect among Control participants. Taking into account all three visits, it was confirmed that the improvement in the dimension health associated with the emotional wellbeing of caregivers in the Intervention Arm was sustained even after six months; however, differences were not statistically significant. CONCLUSION: educational programs targeted to informal caregivers and based on psychoeducational therapies and cognitive-behavioural theories seem to have positive effects in terms of an improvement in the emotional wellbeing of caregivers, and there is an improvement in the quality of the caregiver role

Reacción del cuidador familiar de paciente con demencia en la atención domiciliaria frente a la institucionalizada / Reaction of family caregivers for patients with dementia regarding home care vs. institutionalized care

Objetivo: identificar las reacciones de los cuidadores familiares de pacientes con demencia en el cuidado que realizan en el ámbito domiciliario frente al cuidado efectuado en el ámbito de institucionalización de larga estancia; y estudiar la evolución en tres meses. Método: estudio analítico observacional de cohorte prospectivo en pacientes con demencia y sus cuidadores familiares (n= 287) que viven en su domicilio (PDD) o en centros de larga estancia, (PDI) que respondieron al cuestionario validado Caregiver Reaction Assessment (CRA). Tratamiento estadístico: prueba t para muestras repetidas, prueba t para muestras independientes y prueba de signos de Wilcoxon. Este estudio forma parte del proyecto europeo RightTimePlaceCare (RTPC). Resultados: se incluyeron 241 cuidadores familiares de PDD (n= 155) y de PDI (n= 86). En las subescalas de CRA en basal, en el grupo PDD tenían menos apoyo por parte de las familias (11 vs. 13; p= 0,006), mayores interferencias en las actividades de la vida diaria por el hecho de cuidar (16 vs. 18; p= 0,020), y consideraban una menor influencia de cuidar en sus finanzas comparado con el grupo PDI (10 vs. 7; p< 0,001). En el grupo PDD hubo una ligera mejora en las interferencias de las AVD (18 basal vs. 17 seguimiento; p= 0,041). Conclusión: en las reacciones de quienes cuidan de pacientes con demencia, el impacto más acentuado se produce en las interferencias de la vida diaria de los cuidadores domiciliarios y a los tres meses de seguimiento hay una mejora en esta dimensión. Además, cuando el paciente con demencia está institucionalizado el cuidador tiene mayor apoyo familiar. Estos resultados dan claves para que profesionales sanitarios enfoquen los cuidados dirigidos a la salud física

Objective: to identify the reactions of family caregivers for patients with dementia regarding their care in the home setting vs. care conducted in the long-term institutionalized setting; and to study their evolution at 3 months. Method: a prospective analytical observational cohort study in patients with dementia and their family caregivers (n= 287) who live at home (PDD) or in long-stay centers (PDI), and who answered the validated questionnaire Caregiver Reaction Assessment (CRA). Statistical treatment: t test for paired samples, t test for independent samples, and Wilcoxon signed-rank test. This study is part of the European project RightTimePlaceCare (RTPC). Results: the study included 241 family caregivers of PDD (n= 155) and PDI (n= 86). In the CRA sub-scales at baseline, those in the PDD arm had less support by their families (11 vs. 13; p= 0.006), higher interference in daily life activities (DLA) due to their caregiving (16 vs. 18; p= 0.020), and they considered there was a lower impact of care on their economy vs. the PDI arm (10 vs. 7; p< 0.001). There was a slight improvement in the PDD arm regarding DLA interferences (18 at baseline vs. 17 at follow-up; p= 0.041). Conclusion: in terms of the reactions of those who care for dementia patients, the highest impact occurs in daily life interferences for home caregivers, and at 3 months of follow-up there is an improvement in this dimension. Moreover, when the patient with dementia becomes institutionalized, there is higher family support for the caregiver. These results provide the keys for healthcare professionals to focus their care on the physical, psychological and social health of caregivers

Spanish version of the modified Advanced Practice Role Delineation tool, adaptation and psychometric properties.

BACKGROUND: Role clarity is vital to avoid confusion and role ambiguity within nursing. There is a need for valid, reliable tools that can delineate the profile of advanced nursing practice to measure the extent of advanced practices in Spain. AIM: The main purpose of this study was to translate, cross-culturally adapt, and psychometrically test the Spanish version of the modified Advanced Practice Role Delineation tool. DESIGN: The study was designed to follow symmetrical translation and cognitive debriefing to determine conceptual equivalence. A cross-sectional survey was conducted to examine content validity and psychometric tests. METHODS: Data were collected over 6 months in 2015 and 2016. The study had a purposive sample of specialist nurses and nurses with an extended practice profile beyond that of a general nurse. RESULTS: The study achieved conceptual, semantic, and content equivalence of the items. The results provided support for the instrument's validity and reliability in advanced practice nursing in a tertiary and community hospital. The tool showed internal consistency, with a Cronbach's alpha coefficient of 0.86 and stability over time. CONCLUSION: The findings should influence future nursing practice, research, and leadership while allowing assessment of Spanish advanced practice roles in an international context.

Calidad de los cuidados en pacientes con demencia / Quality of care in patients with dementia

Objetivo: describir las características de los pacientes con demencias y la calidad del cuidado (CDC) recibida tanto en aquellos sujetos que vivían en casa como en los que estaban institucionalizados, y evaluar las diferencias entre ambos entornos. Método: se realizó un estudio transversal analítico en el cual se incluyeron pacientes con demencia que vivían en casa o estaban institucionalizados. Se recogieron datos sociodemográficos, clínicos y relacionados con la demencia. La CDC se analizó mediante el cuestionario CLINT y se identificaron otras variables indicativas de la misma. Las variables recopiladas se compararon en función de los dos entornos de convivencia. Resultados: se incluyeron 287 pacientes con demencia. El 39,4% institucionalizados y el 60,6% vivía en el domicilio. Los sujetos presentaban una media de edad (desviación típica) de 83,2 (7,1) años. El principal tipo de demencia fue el alzhéimer, que representaba el 71%. Los pacientes institucionalizados presentaban peor estado cognitivo (12,2 frente a 16,1; p= 0,001) y funcional (1,1 frente a 3,1; p= 0,001) que los pacientes con demencia que vivían en el domicilio familiar. La CDC fue similar en ambos grupos, pero los sujetos institucionalizados presentaban mayor porcentaje de úlceras y caídas, más medidas de contención y mayor soporte del sistema sanitario, en general. Conclusiones: el cuidado de la demencia es complejo y la calidad del cuidado de estos pacientes sigue siendo baja tanto en el ámbito de las medidas físicas generales como las basadas en el soporte del sistema sanitario, tanto a enfermos como cuidadores informales (AU)

Objective: to describe the characteristics of patients with dementia and the quality of care (QoC) received by patients living at home and by those institutionalized, and to evaluate the differences between both settings. Methods: an analytical cross-sectional study was conducted, including patients with dementia living at home or institutionalized. Sociodemographical and clinical data were collected, as well as data associated with dementia. QoC was analyzed through the CLINT questionnaire, and other variables of reference were identified. There was a comparison of the variables collected, based on the two living settings. Results: the study included 287 patients with dementia: 39.4% were institutionalized and 60.6% lived at home. The subjects were 83.2-year-old (7.1) as mean age (standard deviation). The main type of dementia was Alzheimer, representing 71% of cases. Institutionalized patients presented worse cognitive (12.2 vs. 16.1; p= 0.001) and functional status (1.1 vs. 3.1; p= 0.001) than patients with dementia living in the family home. QoC was similar in both groups, but institutionalized subjects presented in general a higher proportion of ulcers and falls, more containment measures, and higher support by the healthcare system. Conclusions: care for dementia is complex, and the quality of care for these patients is still low, both in the setting of general physical measures and regarding the support by the healthcare system for nurses and casual caregivers (AU)

[Validation of the Spanish version of the Primary Care Assessment Survey questionnaire]. / Validación de la versión en español del cuestionario PCAS para evaluar la atención primaria de salud.

OBJECTIVE: Adapt the Primary Care Assessment Survey (PCAS) questionnaire to the Spanish language and determine its validity and reliability in identifying strengths and weaknesses in primary health care (PHC). METHODS: Study of the adaptation and validation of a questionnaire-survey. The suitable sample selected was 244 users of PHC services. The users were over 18 years of age and had had at least two institutional visits prior to being included in the study. The variables used were access, continuity, comprehensiveness, integration, clinical interaction, interpersonal treatment, and trust. Participation was confirmed through analysis of the distribution of responses; participation and patterns of nonresponse; the construct, through exploratory factorial analysis, using principal component analysis and the varimax rotation; the criterion, through the Pearson product-moment correlation coefficient; and reliability using Cronbach's alfa and the intraclass correlation coefficient. RESULTS: The exploratory factorial analysis obtained 11 factors that explain 68.38% of the original variability. The criterion validity showed a sufficient correlation between the summary measure of the scale and the ad hoc variables Q33b (value of r x1x2 = 0.569; P = 0.01) and Q32 (value of r x1x2 = 0.600; P = 0.01). The scale obtained a coefficient of Cronbach's alfa of 0.94. The test-retest reliability (F [1 140] = 0.155 [P = 0.694]) demonstrated that the scale is stable over time. CONCLUSIONS: The psychometric properties of the adapted version of the PCAS questionnaire make it possible to state that it is a valid and reliable scale to evaluate primary care from a standpoint of ongoing care based on the physician-patient relationship.

Validación de la versión en español del cuestionario PCAS para evaluar la atención primaria de salud / Validation of the Spanish version of the Primary Care Assessment Survey questionnaire

OBJETIVO: Adaptar el cuestionario PCAS (del inglés Primary Care Assessment Survey) al idioma español y determinar su validez y su fiabilidad cuando se trata de identificar las debilidades y las fortalezas que se observan en la atención primaria de salud (APS). MÉTODOS: Estudio de adaptación y validación de un cuestionario-encuesta. Se seleccionó una muestra por conveniencia de 244 usuarios de servicios de APS, mayores de 18 años y con al menos dos visitas institucionales al momento de ser incluidos en el estudio. Se utilizaron las variables: accesibilidad, continuidad, integralidad, integración, interacción clínica, trato interpersonal y confianza. Se validaron la apariencia, mediante análisis de distribución de las respuestas, análisis de participación y patrones de no respuesta; el constructo, mediante análisis factorial exploratorio usando el método de componentes principales y rotación Varimax; el criterio, mediante el coeficiente de correlación de Pearson, y la fiabilidad, usando el alfa de Cronbach y el coeficiente de correlación intraclase. RESULTADOS: En el análisis factorial exploratorio se obtuvieron 11 factores que explicaron 68,38 por ciento de la variabilidad original. La validez de criterio mostró una correlación adecuada entre la medida resumen de la escala y las variables "ad hoc" Q33b (valor de r×1×2 = 0,569; P = 0,01) y Q32 (valor de r×1×2 = 0,600; P = 0,01). La escala obtuvo un coeficiente de alfa de Cronbach de 0,94. La fiabilidad test-retest (F [1,140] = 0,155 [P = 0,694]) demostró que la escala es estable en el tiempo. CONCLUSIONES: Las propiedades psicométricas de la versión adaptada del cuestionario PCAS permiten afirmar que se trata de una escala válida y fiable para evaluar la atención primaria desde un enfoque de continuidad asistencial basada en la relación médico-paciente.

OBJECTIVE: Adapt the Primary Care Assessment Survey (PCAS) questionnaire to the Spanish language and determine its validity and reliability in identifying strengths and weaknesses in primary health care (PHC). METHODS: Study of the adaptation and validation of a questionnaire-survey. The suitable sample selected was 244 users of PHC services. The users were over 18 years of age and had had at least two institutional visits prior to being included in the study. The variables used were access, continuity, comprehensiveness, integration, clinical interaction, interpersonal treatment, and trust. Participation was confirmed through analysis of the distribution of responses; participation and patterns of nonresponse; the construct, through exploratory factorial analysis, using principal component analysis and the varimax rotation; the criterion, through the Pearson product-moment correlation coefficient; and reliability using Cronbach's alfa and the intraclass correlation coefficient. RESULTS: The exploratory factorial analysis obtained 11 factors that explain 68.38 percent of the original variability. The criterion validity showed a sufficient correlation between the summary measure of the scale and the ad hoc variables Q33b (value of r x1x2 = 0.569; P = 0.01) and Q32 (value of r x1x2 = 0.600; P = 0.01). The scale obtained a coefficient of Cronbach's alfa of 0.94. The test-retest reliability (F [1 140] = 0.155 [P = 0.694]) demonstrated that the scale is stable over time. CONCLUSIONS: The psychometric properties of the adapted version of the PCAS questionnaire make it possible to state that it is a valid and reliable scale to evaluate primary care from a standpoint of ongoing care based on the physician-patient relationship.