The influence of acceptance and commitment therapy on the psychological flexibility, self-compassion, anxiety and depression of the primary caregivers of patients with primary liver cancer / 中国实用护理杂志

Objective:To explore the intervention effect of acceptance and commitment therapy on the psychological flexibility, self-compassion, anxiety and depression of the primary caregivers of patients with primary liver cancer, so as to provide reference for the clinical care of the primary caregivers of cancer patients.Methods:This was a prospective study. A total of 80 primary caregivers of patients with primary liver cancer treated in Tianyou Hospital Affiliated to Wuhan University of Science and Technology from July to December 2021 were selected as the observation objects, and they were randomly divided into the control group and the intervention group according to the random drawing method, with 40 cases in each group. The control group was given routine nursing measures, while the intervention group was given acceptance and commitment therapy on the basis of routine nursing. The intervention effect was evaluated by the Acceptance and Action Questionnaire-2nd Edition (AAQ-Ⅱ), Self-Compassion Scale Short-Form (SCS-SF) and Hospital Anxiety and Depression Scale (HADS) before the intervention, on the day of discharge, and one month after discharge.Results:Finally, 71 primary caregivers completed the intervention and follow-up, 36 in the control group and 35 in the intervention group. Before the intervention, there was no statistically significant difference in the scores of AAQ-Ⅱ, SCS-SF, Anxiety subscale of HADS(HADS-A) and Depression subscale of HADS(HADS-D) between the two groups ( P>0.05). The AAQ-Ⅱscores of the intervention group on the day of discharge and one month after discharge were (19.63±2.59), (19.12 ± 2.20) points, which were significantly lower than those of the control group (23.14 ± 2.49), (22.56 ± 2.40) points. The differences were statistically significant ( t=5.83, 6.25, both P<0.01). The SCS-SF scores of the intervention group on the day of discharge and one month after discharge were (39.34 ± 2.68), (39.89 ± 2.81) points, which were significantly higher than those of the control group (36.69 ± 3.08), (37.72 ± 2.41) points, the differences were statistically significant ( t=-3.86, -3.49, both P<0.01). The HADS-A/HADS-D scores of the intervention group on the day of discharge and one month after discharge were (9.31 ± 1.95), (9.09 ± 1.60) points and (8.80 ± 2.15), (8.54 ± 1.75) points,which were significantly lower than those of the control group(11.42 ± 1.50), (11.03 ± 1.70) points and (10.11 ± 1.92), (10.03 ± 1.84) points, the differences were statistically significant( t values were 2.71-5.10, all P<0.01). The scores of AAQ-Ⅱ, SCS-SF, HADS-A and HADS-D of the two groups were analyzed by repeated measures analysis of variance, and there were significant differences in time effect, inter-group effect and interaction effect ( F vaules were 3.42-37.90, all P<0.05). Conclusions:Acceptance and commitment therapy can improve the self-compassion and psychological flexibility, reduce anxiety and depression of the primary caregivers of patients with primary liver cancer.

Construction of home-based cardiac rehabilitation intervention system for patients after percutaneous coronary intervention / 中国实用护理杂志

Objective:To construct a home-based cardiac rehabilitation intervention system for patients after percutaneous coronary intervention, and to provide reference for improving the self-management ability and family support of home-based cardiac rehabilitation of patients after PCI.Methods:Based on the literature study and group discussions, a draft of home-based cardiac rehabilitation intervention system for patients after PCI based on empowerment theory was constructed. From January to April 2021, the Delphi method was used to conduct 2 rounds of expert consultations among 18 experts from 9 hospitals, and the items were modified according to the experts′ advice.Results:The expert positive coefficients of the 2 rounds were 94.44% and 100.00%, the expert authority coefficients was 0.91, and the Kendall coefficients were 0.188 and 0.255. Finally, a home-based cardiac rehabilitation intervention system for patients after PCI was formed, including 5 first-level items, 19 second-level items and 21 third-level items.Conclusion:The home-based cardiac rehabilitation intervention system for patients after PCI is reliable, scientificity and practical, and has guiding significance for promoting the development of home-based cardiac rehabilitation for PCI patients.

Habilidad de cuidado del cuidador principal del adulto mayor con diálisis peritoneal / Caregiver skills of the main caregiver of the older adult with peritoneal dialysis

Introducción: la enfermedad renal crónica tiene consecuencias graves para los adultos mayores. La diálisis peritoneal continua ambulatoria es una alternativa de tratamiento, pero afecta la calidad de vida del paciente, la familia y el cuidador primario, por lo que se requiere un cuidador con habilidades que ofrezca apoyo en algunas actividades elementales y, además, apoye emocional y espiritualmente al paciente. Objetivo: identificar el nivel de la habilidad del cuidador primario del adulto mayor con diálisis peritoneal. Metodología: estudio descriptivo en 80 cuidadores familiares de adultos mayores con diálisis peritoneal continua ambulatoria. Se utilizó el instrumento Habilidad de cuidado del cuidador familiar, que consta de 55 reactivos y se divide en tres dimensiones: relación, 27 reactivos; comprensión, 18 reactivos; y modificación de la vida, 10 reactivos. El instrumento incluye variables sociodemográficas, de parentesco y tiempo dedicado al cuidado. Se elaboró una base de datos y éstos se analizaron mediante estadística descriptiva. Resultados: la habilidad de cuidado fue alta en 65%; la dimensión de relación resultó alta en 38.8% y media en 61.3%, con una comprensión alta en 86.2% y modificación de la vida alta en 68.8%. Los cuidadoras fueron mujeres en 85%; 46.3% cuidó > 37 meses; 50% cuidó > 24 h, y padres y esposa(o) apoyaron en 91.3%. Conclusión: estos hallazgos muestran que las habilidades de los cuidadores primarios fueron en general buenas, con la notoria participación del personal de enfermería en la capacitación y el apoyo recibido.

Introduction: Chronic kidney disease has severe consequences for older adults, and continuous ambulatory peritoneal dialysis is an alternative treatment, but it affects the quality of life of patient, family, and primary caregiver. It requires a caregiver with caregiving skills to provide support in some elemental activities, as well as emotional and spiritual support to the patient. Objective: To identify the level of caregiving skills of the primary caregiver of the older adult on peritoneal dialysis. Methodology: Descriptive study in 80 family caregivers of older adults with continuous ambulatory peritoneal dialysis. It was used the Caregiving skill of the family caregiver instrument, which consists of 55 items, divided into three dimensions: relationship, 27 items; understanding, 18 items; and life modification, 10 items. The instrument includes sociodemographic, relationship and time spent variables. A database was created and it was used descriptive statistics analysis. Results: Caregiving skills were high in 65%; relationship dimension high in 38.8%, and medium in 61.3%; understanding high in 86.2%; life modification high in 68.8%. 85% were female caregivers; 46.3% spent > 37 months providing care, 50% provided care > 24 hours; parents and wife/husband supported in 91.3%. Conclusion: Our findings show that caregiving skills of pri- mary caregivers were generally good with the significant involvement of the nursing staff in the training and support received.

Salud familiar y psicológica del cuidador primario de adultos mayores dependientes / Saúde familiar e psicológica do cuidador principal de idosos dependentes / Family and psychological health of the primary caregiver of dependent elderly

Introducción: El conocimiento de las influencias socio-familiares en los cuidadores de adultos mayores es necesario para poder ayudar a establecer el grado de funcionalidad familiar y el patrón (alteraciones) psicológico del cuidador. Objetivo: Determinar la salud familiar y psicológica del cuidador primario del adulto mayor de la Comunidad de San Vicente, Centro del Cantón Quero, provincia de Tungurahua, Ecuador en el año 2020. Método: Se realizó un estudio descriptivo y transversal en los 31 cuidadores primarios de los adultos mayores de la comunidad antes mencionada, que cumplieron los criterios de inclusión. Se aplicaron los instrumentos: cuestionario del APGAR familiar, test de Goldberg, entrevista semiestructurada con datos sociodemográficos, alteraciones psicológicas del cuidador y la escala de Zarit. Se estudiaron variables como la ansiedad, depresión, sobrecarga y funcionalidad familiar. Los datos recolectados se ingresaron a una base de datos en Excel para su análisis en el paquete estadístico SPSS 25.0. Resultados: De los cuidadores, el 83,9 porciento tuvo ansiedad, el 87,1 porciento depresión, el 35,5 porciento estuvo con sobrecarga por los cuidados y el 41,9 porciento constó con sobrecarga intensa; de las familias, se encontró que el 54,8 porciento fue disfuncional mientras que el 16,2 porciento fue disfuncional severa. Conclusiones: La mayor parte de cuidadores primarios presentan una disfuncionalidad familiar severa, con altos niveles de ansiedad y depresión, existiendo por demás una sobrecarga intensa. Al estar alterada la funcionabilidad familiar se produce desgaste del cuidador primario del adulto mayor, siendo la sobrecarga intensa y los estados de ansiedad y depresión unas de las manifestaciones psicológicas más marcadas(AU).

Introduction: Knowledge of the socio-familiar influences on caregivers of the elderly is necessary to help establish the degree of family functionality and the psychological pattern (alterations) of the caregiver. Objective: To determine the family and psychological health of the primary caregiver of the elderly in the Community of San Vicente, Centro del Cantón Quero, Tungurahua province, Ecuador, in the year 2020. Method: A descriptive and cross-sectional study was carried out in the 31 primary caregivers of the elderly who met the inclusion criteria, living in the aforementioned community. The instruments applied were: family APGAR questionnaire, Goldberg test, semi-structured interview with sociodemographic data, psychological disorders of the caregiver and the Zarit scale. Variables such as anxiety, depression, overload and family functionality were studied. The collected data were entered into an Excel database for analysis in the SPSS 25.0 statistical package. Results: 83.9 percent of the caregivers had anxiety, 87.1 percent had depression, 35.5 percent were overburdened by care and 41.9 percent had intense overload. It was found that 54.8 percent of the families were dysfunctional while 16.2 percent were severe dysfunctional. Conclusions: The majority of primary caregivers have severe family dysfunction, with high levels of anxiety and depression, and intense overload. When family functionality is altered, the primary caregiver of the elderly gets exhausted, with intense overload and states of anxiety and depression being one of the most marked psychological manifestations(AU).

Introdução: O conhecimento das influências sociofamiliares sobre os cuidadores de idosos é necessário para ajudar a estabelecer o grau de funcionalidade da família e o padrão psicológico (alterações) do cuidador. Objetivo: Determinar a saúde familiar e psicológica do cuidador principal de idosos da Comunidade de San Vicente, Centro del Cantón Quero, província de Tungurahua, Equador em 2020. Método: Estudo descritivo e transversal realizado no 31 cuidadores primários de idosos da comunidade citada, que atenderam aos critérios de inclusão. Os instrumentos foram aplicados: questionário APGAR familiar, teste de Goldberg, entrevista semiestruturada com dados sociodemográficos, transtornos psicológicos do cuidador e escala de Zarit. Variáveis como ansiedade, depressão, sobrecarga e funcionalidade familiar foram estudadas. Os dados coletados foram inseridos em banco de dados Excel para análise no pacote estatístico SPSS 25.0. Resultados: Dos cuidadores, 83,9 porcento apresentavam ansiedade, 87,1 porcento depressão, 35,5 porcento sobrecarga de cuidados e 41,9 porcento sobrecarga intensa; Das famílias, verificou-se que 54,8 porcento eram disfuncionais enquanto 16,2 porcento eram disfuncionais graves. Conclusões: A maioria dos cuidadores primários apresenta disfunção familiar grave, com altos níveis de ansiedade e depressão, e também há uma sobrecarga intensa. Quando a funcionalidade familiar é alterada, o cuidador principal do idoso se esgota, sendo a sobrecarga intensa e os estados de ansiedade e depressão uma das manifestações psicológicas mais marcantes(AU).

Sobrecarga del cuidador del adulto mayor en el barrio tierra firme de Ibagué (Colombia) / Overload of the Caregiver of the Elderly Adult in the Neighborhood Tierra Firme de Ibagué (Colombia)

RESUMEN Objetivo: Identificar el nivel de sobrecarga del cuidador primario del adulto mayor del barrio Tierra Firme de Ibagué. Método: Estudio cuantitativo, descriptivo, transversal. Muestreo a conveniencia constituido por 41 cuidadores primarios de adultos mayores a quienes se aplicó la escala de Zarit versión original, instrumento que consta de 22 ítems cuyo propósito es cuantificar el grado de sobrecarga que padecen los cuidadores de personas con dependencia parcial. Resultados: El 61 % de los participantes del estudio expresó "sentirse capaz de cuidar a su familiar por mucho más tiempo", siendo esto coherente con el resultado final señalado en la escala de Zarit, en la cual el 92,7 % no se encuentra en sobrecarga. Conclusiones: Los grupos de apoyos a los cuales asisten los cuidadores informales y las persona con enfermedad crónica con una dependencia parcial son factores esenciales para que los cuidadores tengan ausencia de sobrecarga.

ABSTRACT Objective: To identify the level of overload of the primary caregiver of the older adult of the Tierra Firme neighborhood of Ibagué. Method: Quantitative, descriptive, cross-sectional study. Sampling at convenience constituted by 41 primary caregivers of older adults to whom the scale of Zarit was applied original version, an instrument that consists of 22 items whose purpose is to quantify the degree of overload suffered by caregivers of people with partial dependence. Results: 61% of the study participants expressed "feeling able to take care of their family member for much longer", being coherent with the final result indicated in the Zarit scale in which 92.7% is not in overload. Conclusions: Support groups attended by informal caregivers and people with chronic illness with partial dependence are essential factors for caregivers to have no overload.

Sobrecarga y calidad de vida de vida del cuidador de un paciente con esquizofrenia / Overload and quality of life of the caregiver of a patient with schizophrenia

El propósito del estudio fue evaluar el grado de sobrecarga y la calidad de vida relacionada con la salud de los cuidadores primarios informales de pacientes con esquizofrenia. Se propuso estudio de tipo descriptivo observacional. Fueron encuestados 131 cuidadores con la escala de Sobrecarga de Zarit, y el Test SF-36. Se analizó la asociación entre variables; además del nivel de significación. En los resultados se identificó el 94,8% de los cuidadores se encuentran entre los grupos de edades de 19 a 68 años, el género que más aporta al cuidado es femenino con el 63%, se evidencia que el 63% de los cuidadores se encuentran en algún grado de sobrecarga (32% ligera) (31% intensa), la calidad de vida del cuidador en la función física obtuvo las puntuaciones más altas, junto con la dimensión de salud general, seguidas por la vitalidad y la salud mental con las puntuaciones más bajas. Podemos concluir el ejercicio del cuidado de un paciente con esquizofrenia representa un cambio en la calidad de vida del cuidador y este se encuentra directamente relacionado con el grado de sobrecarga asociado al cuidado.

The purpose of the study was to assess the degree of overload and quality of life related to the health of informal primary caregivers of patients with schizophrenia. An observational descriptive study was proposed. A total of 131 caregivers were surveyed with the Zarit overload scale and the SF-36 test. The association between variables was analyzed; in addition to the level of significance. In the results we identified 94.8% of the caregivers are among the age group of 19 to 68 years, the gender that contributes most to care is female with 63%, it is evident that 63% of the caregivers are in some degree of overload (32% light) (31% intense), the quality of life of the caregiver in physical function obtained the highest scores, along with the general health dimension, followed by vitality and mental health with the scores lower. We conclude the exercise of caring for a patient with schizophrenia represents a change in the quality of life of the caregiver and this is directly related to the degree of overload associated with care.

El cuidador principal cuida a la persona con enfermedad rara que limita la movilidad / The main caregiver cares for the person with a rare disease that limits mobility

La presente investigación tuvo como objetivos describir cómo el cuidador principal cuida a la persona con una Enfermedad Rara que limita su movilidad, así como determinar y comprender los comportamientos de cuidado y las reacciones de los participantes en cada caso e identificar las similitudes y diferencias de los patrones, comportamientos y reacciones de cuidado entre los casos. Para el logro de los objetivos previstos se desarrolló un estudio cualitativo, en el que se utilizó el diseño de Estudio de Caso Múltiple, con el enfoque propuesto por Robert Yin (2014). Se analizaron tres casos de cuidadores principales de personas con enfermedad rara (Niños con Síndrome de duplicación MECP2 entre 7-14 años), en diferentes contextos. Con cada caso se desarrollaron tres observaciones participantes moderadas y tres entrevistas semiestructuradas a profundidad. En el análisis de los datos se presentan los resultados organizados en ocho categorías generales de las cuales tres están relacionadas con: el contexto de cuidado en el día a día, el cuidador principal, y la persona con enfermedad rara. Las otras cinco aluden a los comportamientos y reacciones del cuidador: los cuidados habituales, atención selectiva antes los cuidados no habituales, aspectos importantes para cuidarlo, necesidades para cuidarlo y la comunicación con la persona. Los hallazgos revelan la presencia de tres temas que encierran el cómo cuidan los cuidadores principales a la persona con enfermedad rara que limita la movilidad: "Cuidar a la persona con enfermedad rara es cuestión de fe", "Cuidar a la persona con enfermedad rara es asumir un nuevo estilo de vida" y "Cuidar a la persona con enfermedad rara es hacerlo feliz". A la luz de los hallazgos se concluye que cuidar a una persona con enfermedad rara que limita la movilidad es vivir siempre en el sobreesfuerzo, adaptándose a los acontecimientos de la vida. Para los cuidadores principales esta labor exige generar nuevas estrategias para poder seguir adelante, para no desfallecer en la lucha y mantener relativamente estables las condiciones de vida de los otros seres queridos. La necesidad de afrontar es parte de la realidad del cuidador quién se encuentra en permanente alerta por las dudas sobre cómo evolucionará la enfermedad en su familiar. Los resultados demuestran que el cuidador principal requiere de conocimientos especializados en salud y de habilidades de cuidado y recursos adicionales para atender las necesidades de la persona con enfermedad rara. El enorme reto y complejidad que puede suponer el cuidado de la persona con enfermedad rara, como de su familia, pone de manifiesto la necesidad de una adecuada y permanente formación en distintos aspectos que abarcan desde los avances en genética y los recursos sociosanitarios y/o educativos para niños con determinadas ER. Se espera que esta descripción detallada de casos permita aportar una nueva visión a la enfermería y a otras disciplinas para abordar el cuidado de la persona con enfermedad rara y su familia, de forma integral.

This research work had the following objectives: to describe how the primary caregiver takes care of a person with a Rare Disease that limits their mobility, to examine and understand caring behaviors and the reactions of the participants in different cases. And to determine the similarities and differences of the patterns, behaviors and reactions of care between cases. A qualitative study was developed, in which the Multiple Case Study was used, with the approach proposed by Robert Yin (2014). Three cases of primary caregivers of people with rare disease were examined in different contexts. (Children with MECP2 duplication syndrome between the ages of 7 and 14). With each case, three moderate participant observations and three semi-structured in-depth interviews were done. In the analysis of the data, the results are presented organized into eight general categories of which three are related to: the day-to-day care context, the main caregiver, and the person with rare disease. The other five allude to the behaviors and reactions of the caregiver: usual care, unusual care, important aspects to take care of, care needs and communication with the person. The findings reveal the presence of three issues that cover how the primary caregivers care for the person with rare disease that limits mobility: "Caring for the person with rare disease is a matter of faith", "Caring for the person with rare disease is to assume a new lifestyle" and "Caring for the person with a rare disease is making him happy". In the light of the findings, it is concluded that caring for a person with a rare disease that limits mobility is always living in overexertion, adapting to life's events. For the main caregivers, this work requires generating new strategies to move forward, so as not to falter in the struggle and keep the living conditions of other loved ones relatively stable. The need to face is part of the reality of the caregiver who is constantly alert for doubts about how the disease will evolve in his family. The results show that the primary caregiver requires specialized knowledge in health and care skills and additional resources to meet the needs of the person with a rare disease. The enormous challenge and complexity of caring for the person with a rare disease, such as their family, shows the need for adequate and ongoing training in different aspects that range from advances in genetics and socio-sanitary resources and / or educational for children with certain ER. It is expected that this detailed description of cases will provide a new vision to the infirmary and other disciplines to address the care of the person with rare disease and their family, in an integral way.

Relación entre la sobrecarga y el índice depresivo de cuidadores primarios de pacientes con enfermedades neuromusculoesqueléticas / The relationship between the overload and the depressive index of primary caregivers of patients with neuromusculoskeletal diseases

Resumen Introducción Una enfermedad neuromusculoesquelética no solo afecta a la persona que la padece, sino que también repercute de manera directa en la familia y en particular al cuidador primario informal. Las labores de cuidado incrementan la morbilidad psicológica y el estrés de los cuidadores primarios. El objetivo del presente estudio consiste en identificar la relación entre la sobrecarga y el índice de depresión presente en los cuidadores primarios informales de pacientes con enfermedad neuromusculoesquelética. Material y Métodos Se realizó un estudio exploratorio que incluyó a 18 cuidadores primarios informales de pacientes con enfermedad neuromusculoesquelética, y que asistieron a consulta en la Unidad Universitaria de Rehabilitación de la Universidad Autónoma de Yucatán. Resultados Entre las características sociodemográficas predominaron las cuidadoras del sexo femenino (83%) con parentesco familiar con el paciente. Además, predomino entre los cuidadores primarios el estado civil casado y un nivel de estudios de licenciatura. La relación entre la sobrecarga y el índice de depresión fue elevada y significativa (r=0.72, p=0.0007). En conclusión, estos resultados sugieren que, a mayor sobrecarga producida por las labores del cuidado, mayor será el grado de afectación en el estado anímico del cuidador primario informal. Este estudio ayudará en la elaboración de un programa de intervención para prevenir la sobrecarga en cuidadoras primarias informales.

Abstract Introduction A neuromusculoskeletal disease not only affects the person who suffers it but also directly affects the family and in particular with the informal primary caregiver. Care work increases the psychological morbidity and stress of primary caregivers. The aim of the present study was to identify the relationship between overload and the rate of depression present in informal primary caregivers of patients with the neuromusculoskeletal disease. Methods An exploratory study was carried out that included 18 informal primary caregivers of patients with the neuromusculoskeletal disease, and who attended a consultation at the University Rehabilitation Unit of the Autonomous University of Yucatan. Results Among the sociodemographic characteristics, female caregivers prevailed (83%) with a family relationship with the patient. Also, primary married status and a bachelor's degree level predominated among primary caregivers. The relationship between overload and depression index was high and significant (r = 0.72, p = 0.0007). In conclusion, these results suggest that the greater the overload produced by the tasks of care, the greater the degree of involvement in the state of the informal primary caregiver. This study will help in the development of an intervention program to prevent overload in informal primary caregivers.

Social support and satisfaction of primary caregivers of children with cerebral palsy / Apoio e satisfação social de cuidadores primários de crianças com paralisia cerebral / El apoyo social y la satisfacción de los cuidadores primarios de los niños con parálisis cerebral

This study aimed to analyze the satisfaction with social support available to primary caregivers of children with CP. Participated 101 caregivers of children 0-12 years with cerebral palsy. Instruments: Social Support Scale, Scale of Satisfaction with Social Support, sociodemographic schedule and Gross Motor Function Classification System. Results: ANOVAs indicated that family satisfaction had the highest satisfaction followed by satisfaction with friends, intimate satisfaction and social activities. Pearson's test indicated that supports were positively related to the different types of satisfaction. The caregivers of older children reported less informational support and those who cared for more compromised children reported less satisfaction with intimacy. However, the level of general satisfaction was high due to the high satisfaction with the family, a relevant result within a positive perspective of the evaluation of families of children with CP.

O presente estudo teve por objetivo analisar a satisfação com os apoios sociais disponíveis a cuidadores primários de crianças com PC. Participaram 101 cuidadores de crianças de 0 a 12 anos com paralisia cerebral. Instrumentos: Escala de Apoio Social, Escala de Satisfação com o Suporte Social, Inventário Sociodemográfico e Sistema de classificação da Função Motora Grossa. Resultados: ANOVAs revelaram que satisfação familiar apresentou o mais alto nível de satisfação seguido por satisfação com os amigos, satisfação íntima e atividades sociais. Teste de Pearson indicou que os apoios estiveram relacionados positivamente aos diferentes tipos de satisfação. Os cuidadores de crianças mais velhas relataram menor apoio informacional e aqueles que cuidavam de crianças mais comprometidas relataram menor satisfação com a intimidade. Entretanto, o nível de satisfação geral se mostrou alto devido à alta satisfação com a família, resultado positivo na avaliação de famílias de crianças com PC.

Este estudio tuvo como objetivo analizar la satisfacción con el apoyo social disponible para los cuidadores primarios de niños con parálisis cerebral. Participado 101 cuidadores de niños de 0-12 años, con parálisis cerebral. Instrumentos: Escala de Apoyo Social, Escala de satisfacción con el apoyo social, el horario sociodemográfico y Sistema de clasificación de la Función Motora Grossa. Resultados: ANOVA indicó que la satisfacción familia tuvo la satisfacción más alta, seguido de la satisfacción con los amigos, intimidad y actividades sociales. La pueba de Pearson indicó que los apoyos estuvieron relacionados positivamente con los diferentes tipos de satisfacción. Los cuidadores de niños mayores relataron menor apoyo informacional y aquellos que cuidaban a niños más comprometidos relataron menor satisfacción con la intimidad. Por fin, el nivel de satisfacción general se mostró alto debido a la alta satisfacción con la familia, resultado positivo en la evaluación.

Experiencias del cuidador primario durante su visita hospitalaria a un niño con cardiopatía en una unidad de cuidados intensivos cardiovasculares / Primary caregiver experiences during a hospital visit to a child with heart disease in a cardiovascular intensive care unit

Introducción. En México las cardiopatías congénitas ocupan la 2ª y 4ª causa de mortalidad, anualmente se calcula que 21.000 niños mexicanos padecen una cardiopatía; Por tal motivo fueron creadas las unidades de tercer nivel que da tratamiento medico-quirúrgico como el Instituto Nacional de pediatría (INP) el cual cuenta con la unidad de cuidados intensivos cardiovasculares (UCICV) que brinda tratamiento pre y post quirúrgico donde los infantes permanecen hospitalizados hasta por siete meses según su evolución, es aquí donde los padres pasan a ser cuidadores primarios (CP) permaneciendo 24 horas y solo 30 minutos de visita hospitalaria exponiéndose a un escenario desconocido, reglas y horarios restrictivos y poco contacto físico debido al estado de salud de su niño, lo cual genera diversas experiencias durante dicha visita. Objetivo: Analizar la experiencia del CP durante la visita hospitalaria a un niño con cardiopatía congénita en una UCICV del Instituto Nacional de Pediatría (INP) de la Ciudad de México. Material y Método. Estudio cualitativo, descriptivo, fenomenológico, técnica de muestreo por bola de nieve; recolección de información mediante entrevista a profundidad semi-estructurada audio gravada. Análisis de contenido línea por línea, codificación abierta con categorías y subcategorías, validez por medio de saturación de contenido y triangulación teórica. Hallazgos: Emergieron dos categorías 1) ""Sentir con el hijo"" con las subcategorías: si mi hijo está bien yo estoy bien/si mi hijo está mal yo estoy mal"", ""la fortaleza de los niños y las niñas"", ""vida-muerte de los niños y niñas"", ""lo consiento y lo cuido""; 2)""Pensar en el hijo"" ""yo no importo"", ""nosotros seguimos aquí"", ""estamos afuera esperándote"". Las cuales expresan el sentir de las experiencias que viven los CP durante el tiempo de la visita hospitalaria. Conclusiones: Los resultados nos hacen reflexionar sobre mejorar diversos protocolos institucionales y disciplinares con respecto a la visita, encaminados a la humanización y solidaridad pero sobre todo al acompañamiento donde el personal de enfermería es clave para mejorar la calidad de la atención puesto que el CP es pieza clave para la mejora en la salud del niño hospitalizado.

Introduction. In Mexico, congenital heart disease is the second and fourth cause of death, annually it is estimated that 21,000 Mexican children suffer from heart disease; For this reason, the third level units were created that provide medical-surgical treatment, such as the National Institute of Pediatrics (INP), which has a cardiovascular intensive care unit (UCICV) that provides pre-and post-surgical treatment where infants remain hospitalized up to seven months according to their evolution, it is here that parents become primary caregivers (CP) staying 24 hours and only 30 minutes of hospital visit exposed to an unknown scenario, restrictive rules and schedules and little physical contact due to health status of your child, which generates diverse experiences during that visit. Objective: To analyze the experience of CP duringthe hospital visit to a child with congenital heart disease in a UCICV of the National Institute of Pediatrics (INP) of Mexico City. Material and Method. Qualitative, descriptive, phenomenological study, snowball sampling technique; collection of information through semi-structured recorded audio depth interviews. Content analysis line by line, open coding with categories and subcategories, validity through content saturation and theoretical triangulation. Findings: Two categories emerged: 1) "Feeling withthe child" with the subcategories: if my child is well I am fine / if my child is wrong I am wrong","the strength of the boys and girls " death of children","I consent and care for it"; 2)"Thinking about the child "I do not care", "we are still here", "we are outside waiting for you". Which express the feeling of the experiences that live the CP during the time of the hospital visit. Conclusions: The results make us reflect on improving various institutional and disciplinary protocols with respect to thevisit, aimed at humanization and solidarity, but especially at the accompaniment where nurses are key to improve the quality of care since the CP is key to improving the health of the hospitalized child.

Aspectos socioeconômicos dos genitores de crianças com microcefalia relacionada ao Zika Vírus / Socioeconomic aspects of genitors of children with microcefalia related to Zika Virus

INTRODUÇÃO: A microcefalia é uma má formação cerebral que não tem cura e é caracterizada por um perímetro cefálico inferior ao esperado para idade e sexo. É relacionada ao Zika Vírus que é transmitido pelo mosquito Aedes e quando contraído nos primeiros meses gestacionais aumentam as chances do feto desenvolver a microcefalia, já que o desenvolvimento cerebral tem início na fase intra-uterina. OBJETIVO: Esta pesquisa tem como objetivo caracterizar o perfil socioeconômico dos responsáveis por criança com diagnóstico de microcefalia relacionado ao Zika vírus. MÉTODOS: Foram entrevistados 41 cuidadores principais das crianças com microcefalia em Salvador e Região Metropolitana de Salvador, através de um questionário contendo 30 perguntas fechadas que abordavam questões familiares, socioeconômicas e sanitárias. RESULTADOS: Observou-se que a maioria dos bebês tinha entre 15-18 meses e tiveram seu diagnóstico em sua maior parte no momento intrauterino. Houve uma frequência elevada de desemprego entre os pais, que relataram sobreviver com até 1 salário mínimo mensal, possuíam ensino médio completo, encontravam-se solteiros ou em união estável e um número significativo citaram condições sanitárias desfavoráveis e negaram usar repelente. De um modo geral, os principais cuidadores relataram que não possuíam residência própria e grande parte levavam as crianças para fazerem atendimentos multiprofissionais tanto em hospitais públicos como em instituições sem fins lucrativos. CONCLUSÃO: Há uma frequência predominante de genitores que dispõem de crianças com microcefalia relacionada ao Zika vírus em baixas condições socioeconômica, que consequentemente não conseguem suprir a maioria das necessidades que um lactente com má formação necessita. [AU]

INTRODUCTION: Microcephaly is a poor cerebral formation that has no cure and is characterized by a cephalic perimeter lower than expected for age and sex. It is related to the Zika virus that is transmitted by the mosquito Aedes and when contracted in the first gestational months increase the chances of the fetus to develop microcephaly, since the cerebral development begins in the intrauterine phase. OBJECTIVE: This study aims to characterize the socioeconomic profile of those responsible for children with a diagnosis of microcephaly related to Zika virus. METHODS: We interviewed 41 primary caregivers of children with microcephaly in Salvador and Metropolitan Region of Salvador, through a questionnaire containing 30 closed questions that addressed family, socioeconomic and health issues. RESULTS: It was observed that most of the babies were between 15-18 months and had their diagnosis mostly intrauterine. There was a high frequency of unemployment among parents, who reported surviving up to 1 monthly minimum wage, had completed high school, were single or in a stable union and a significant number cited unfavorable health conditions and denied using repellent. Overall, the primary caregivers reported that they did not have their own residence, and most of them took the children to multiprofessional care in both public hospitals and non-profit institutions. CONCLUSION: There is a predominant frequency of parents who have children with Zika virus-related microcephaly in low socioeconomic conditions, who consequently fail to meet most of the needs that a malnourished infant needs. [AU]

Efectos de la terapia cognitivo-conductual en la sobrecarga del cuidador primario de adultos mayores / Cognitive-behavioral therapy effects on the overburden with the primary elder adults' caregiver / Efeitos da terapia cognitivo-comportamental sobre a sobrecarga de cuidadores primários de adultos idosos / Effets de la thérapie cognitivo-comportementale sur la surcharge des aidants principaux de personnes âgées

Resumen Objetivo: Evaluar el efecto de la terapia cognitivo conductual en la sobrecarga de cuidadores primarios de adultos mayores. Materiales y métodos: estudio cuasi-experimental, pre y post intervención, prospectivo y analítico, muestra aleatoria irrestricta de 40 cuidadores en dos grupos de 20, uno experimental y el otro control. Se utilizó un cuestionario sociodemográfico y el Test de Zarit. Se manejaron las pruebas estadísticas U de Mann Whitney y prueba T. Resultados: El perfil de cuidador se describió como una mujer, ama de casa, con edad promedio de 49 años, de familia extensa compuesta y tradicional, el 100 % presentó sobrecarga severa en el pretest, posterior a la intervención con la terapia cognitivo-conductual la sobrecarga redujo a 25 % leve y 5% sin sobrecarga, con una significancia estadística (p=.000) en las dimensiones de impacto del cuidado y relación interpersonal, sin embargo, en la autoeficacia no se mostró tal efecto. Conclusiones: la terapia cognitivo-conductual tuvo efectos positivos en la disminución de la sobrecarga del cuidador primario y sus dimensiones; la caracterización del cuidador primario coincidió con los ofrecidos por diversos autores alrededor del mundo, haciéndolo un cuidador con características detectables; casi la mitad de los cuidadores fueron cuidadores únicos, y la problemática familiar fue causa del alejamiento de los familiares hacia el adulto mayor; el cuidador refirió que haría más por el paciente, sin embargo no sabe cómo. Se pueden desarrollar estrategias de detección de sobrecarga en el cuidador primario desde el primer nivel de atención, mejorando la calidad de vida tanto del cuidador como del adulto mayor.

Abstract Objective: To evalúate the cognitive behavioral therapy effects on the overburden with the primary eider adults' caregiver Materials and methods: A quasi-experimental study, pre and post intervention, prospective and analytical, unrestricted random sample of 40 caregivers in two groups of 20, one experimental and one controlled. A sociodemographic questionnaire and the Zarit Test were used. Statistical tests U of Mann Whitney and T-test were used. Results: The caregiver profile was described as a woman, housewife, with an average age of 49, of a traditional and composite extended family, 100 % presented severe overburden in the pretest, after the intervention with cognitive-behavioral therapy the overburden reduced to a slight 25 % and a 5 % to a non overburden, with a statistical significance (p = .000) in the dimensions of care impact and interpersonal relationship, however in self- efficacy there was no such effect. Conclusions: cognitive behavioral therapy had positive effects on the reduction of primary caregiver overburden and its dimensions; the characterization of the primary caregiver coincided with those offered by different authors around the world, making him a caregiver with detectable characteristics; Almost half of the caregivers were single caregivers, and family problems caused the family members to move away from the elderly; The caregiver said he could do more for the patient, however he does not know how. Overburden detection strategies can be developed in the primary caregiver from the first level of care, improving the quality of life for both the caregiver and the older adult.

Resumo Objetivo: Avaliar o efeito da terapia cognitivo-comportamental na sobrecarga de cuidadores primários de adultos idosos. Materiais e métodos: Estudo quase experimental, pré e pós intervenção, prospectivo e analítico, a mostra foi aleatoria sem restrição de 40 cuidadores em dois grupos de 20; um experimental e um controle. Foi utilizado um questionário sociodemográfico e o teste Zarit. Os testes estatísticos de Mann Whitney U e o teste t foram utilizados. Resultados: O perfil do cuidador foi descrito como uma mulher, dona de casa, com uma idade média de 49 anos, de uma família extensa composta e tradicional; 100% apresentaram sobrecarga grave no pré-teste, após a intervenção com terapia cognitivo-comportamental. a sobrecarga reduziu para um ligeiro 25 %, e 5 % sem sobrecarga, com significáncia estatística (p = .000) nas dimensões de impacto do cuidado e relação interpessoal, no entanto, na auto-eficácia não houve tal efeito. Conclusões: A terapia comportamental cognitiva teve efeitos positivos na redução da sobrecarga do cuidador primário e suas dimensões, a caracterização do cuidador primário coincidiu com os oferecidos por vários autores em tudo o mundo, tornando-se um cuidador com características detectáveis; quase a metade dos cuidadores eram únicos cuidadores, e os problemas familiares eram a causa do distanciamento dos familiares em relação ao adulto idoso; O cuidador relatou ser capaz de fazer mais para o paciente, porém ele não sabe como. As estratégias de detecção de sobrecarga podem ser desenvolvidas no cuidador primário do primeiro nível de cuidados, melhorando a qualidade de vida do cuidador e dos idosos.

Résumé Objectif: Évaluer les effets de la thérapie cognitivo-comportementale sur la surcharge des aidants principaux de personnes âgées. Matériaux et méthodes: étude quasi-expérimentale de type avant/apres intervention, prospective et analytique, avec un échantillon aléatoire sans restriction de 40 aidants divisés en deux groupes de 20, un expérimental et un de contróle. Un questionnaire sociodémographique et le Test de Zarit ont été appliqués. L'analyse statique a été réalisée avec le test U de Mann-Whitney et le Test t. Résultats: Le profil établit pour les aidants principaux est celui d'une femme au foyer, d'âge moyen de 49 ans, appartenant a une famille élargie et traditionnelle. 100 % des aidants présentaient une surcharge sévere lors du prétest. Apres l'intervention avec un traitement cognitivo-comportemental, 25% des aidants présentaient une surcharge légere et 5% ne présentaient plus de surcharge dans les dimensions de l'impact des soins et des relations interpersonnelles (avec une signification statistique p=.000). Cependant un tel effet n'a pas été établi pour l'auto-efficacité. Conclusions: La thérapie cognitivo-comportementale a eu des effets positifs sur la réduction de la surcharge globale de l'aidant principal, et de ses dimensions. La caractérisation de l'aidant principal a coincidé avec celles présentées par différents auteurs a travers le monde, ce qui en fait un aidant ayant des caractéristiques détectables. Pres de la moitié des aidants étaient des aidants uniques du fait d'une problématique familiale a l'origine d'une distanciation des membres de la famille envers la personne âgée. Des aidants ont indiqué qu'ils seraient pres a faire davantage pour le patient, mais qu'ils ne savent pas comment. Des stratégies de détection de surcharge peuvent etre développées chez l'aidant principal dés le premier niveau de soins pour améliorer la qualité de vie de l'aidant et de la personne âgée.

Relación entre dependencia en pacientes con enfermedad de Alzheimer y la sobrecarga en el cuidador principal / Relationship between dependence in patients with Alzheimer's disease and primary caregiver overload

RESUMEN Introducción: El envejecimiento poblacional ha traído como consecuencia un aumento de las enfermedades en adultos mayores, entre ellas la enfermedad de Alzheimer, que resulta una amenaza para los cuidadores del paciente y la familia. Objetivo: Demostrar la relación que existe entre la dependencia del paciente con enfermedad de Alzheimer para realizar las actividades básicas de la vida diaria con la sobrecarga percibida por el cuidador principal, Métodos: Se realizó un estudio descriptivo correlacional. Fue seleccionada una muestra de 35 cuidadores principales de pacientes con enfermedad de Alzheimer pertenecientes al Policlínico "Carlos Manuel Portuondo", en Marianao. Los familiares eran encargados y responsables de la realización de los cuidados del paciente y residentes en el domicilio, sin recibir retribución económica a cambio, brindando cuidados por más de seis meses y dieron su consentimiento para la participación en el estudio. Se aplicó el Índice de Katz y la entrevista de sobrecarga del cuidador: Escala de Zarit. Para el procesamiento de la información se utilizó el SPSS 15.0. Se utilizó la estadística descriptiva y el coeficiente de correlación de Pearson para la relación entre variables. Resultados: Predominaron los cuidadores con sobrecarga y los pacientes que requieren asistencia para realizar las actividades básicas de la vida diaria. Los mismos requirieron asistencia para bañarse, trasladarse y alimentarse, variables que se relacionaron significativamente con la sobrecarga. Conclusiones: Existe una relación significativa entre la dependencia para las actividades básicas de la vida diaria de los pacientes con enfermedad de Alzheimer y la sobrecarga percibida por el cuidador principal(AU)

ABSTRACT Introduction: The aging population has resulted in an increase of disease in older adults. Including Alzheimer's disease, which is a threat to patient caregivers and family. Objective: To demonstrate the relationship between the patient's dependence with Alzheimer's disease to perform the basic activities of daily life with the perceived overload the primary caregiver, at the Polyclinic Carlos Manuel Portuondo, in Marianao. Methods: A descriptive correlational study. It was selected a sample of 35 primary caregivers of patients with Alzheimer's disease who were familiar charge and responsible for the realization of patient care and resident at home, without receiving financial compensation in return, providing care for more than six months and they gave their consent for participation in the study. Zarit Scale: Katz Index and caregiver burden interview was applied. For information processing SPSS 15.0 was used. Descriptive statistics and Pearson correlation coefficient for the relationship between variables was used. Results: predominated overloaded caregivers and patients who require assistance to perform basic activities of daily life. They required assistance with bathing, moving and feeding, variables that were significantly related to overloading. Conclusions: There is a significant relationship between dependence for basic activities of daily living of patients with Alzheimer's disease and perceived overload the primary caregiver(AU)

Prácticas de autocuidado para mejorar la calidad de vida asociada a la salud de los cuidadores primarios informales de niños y adolescentes con parálisis cerebral GMFCS IV-V: revisión sistemática / Self-care practices to improve quality of life of informal primary caregivers of children and adolescents with GMFCS IV-V cerebral palsy: a systematic review

Introduction: Children and young people with cerebral palsy (CP), GMFCS IV-V, are considered dependent individuals requiring long-term care by their families due to significant motor function limitations that prevent them from performing basic and instrumental activities of daily life. The task of taking care of another person implies excess work and the development of health-related quality of life problems for informal primary caregivers due to physical and emotional burden. Strategies used for improving health-related quality of life of caregivers include self-care practices. Objective: To describe self-care practices and their effect on health-related quality of life in individuals taking care of 0 to 20 year-old children and adolescents with GMFCS IV-V CP. Method: A systematic review, including clinical trials and cohort studies with informal primary caregivers of 0 to 20 year-old children and adolescents with GMFCS IV-V CP, assessing self-care practices for improving life quality of caregivers. Results: No studies were found in compliance with the inclusion criteria. Conclusions: No conclusive evidence was found describing self-care practices and their effect on health-related quality of life problems for caregivers of 0 to 20 year-old children and adolescents with GMFCS IV-V CP. It is necessary to carry out high-quality methodological studies on this topic.

Introducción: Los niños y adolescentes con parálisis cerebral (PC), GMFCS IV-V, son considerados como individuos dependientes, que requieren de cuidados de larga duración por parte de las familias debido a que presentan importantes limitaciones motoras que les impiden realizar actividades básicas e instrumentales de la vida diaria. La tarea de cuidar a otro, supone un exceso de trabajo generando la aparición de problemas en la calidad de vida asociados a la salud (CVRS) de los cuidadores primarios informales a raíz de la sobrecarga física y emocional. Dentro de las estrategias que se utilizan para mejorar la calidad de vida asociada a la salud en éstos, se incluye el autocuidado y sus distintas prácticas. Objetivo: Describir las prácticas de autocuidado y su efecto en la CVRS de los cuidadores de niños y adolescentes con PC de 0-20 años de edad, clasificación GMFCS IV-V. Método: Revisión sistemática. Se incluyeron ensayos clínicos y cohortes cuya población estuviera constituida por cuidadores primarios informales de niños y adolescentes con PC de 0-20 años de edad, clasificación GMFCS IV-V y que evaluarán prácticas de autocuidado para mejorar la calidad de vida asociada a la salud de éstos. Resultados: No se obtuvieron estudios que cumplieran los criterios de inclusión. Conclusiones: No se encontró evidencia concluyente que describiera las prácticas de autocuidado y su efecto en la CVRS de los cuidadores de niños y adolescentes con PC de 0-20 años de edad, clasificación GMFCS IV-V. Es necesario realizar estudios de buena calidad metodológica respecto de este tema.

El cotidiano de la cuidadora primaria durante la hospitalización del niñ@ con enfermedad crónica / The daily life of the primary caregiver during the hospitalization of children with chronic disease

El presente estudio trata acerca de la cotidianidad de la cuidadora primaria durante la hospitalización del niño(a) con enfermedad crónica, considerando este un tema importante para el profesional de enfermería en el desarrollo del cuidado. Objetivo: Analizar el cotidiano de la cuidadora primaria durante la hospitalización del niño(a) con enfermedad crónica. Metodología: Estudio cualitativo, fenomenológico. Participaron 6 cuidadoras de niños/as hospitalizados/as con enfermedad crónica que se encontraban en el servicio de infectología de un hospital de tercer nivel de atención; se utilizó para la recogida de datos la observación participante y la entrevista semi-estructurada, fueron grabadas previo consentimiento informado, se realizó análisis temático. Hallazgos: Después de analizar los datos se desprendieron, cinco categorías con 2 subcategorías y la quinta categoría con 3 subcategorías; cuidados que dedica la madre al niño/a hospitalizado/a; el apego materno, una forma de fortalecer los lazos de afecto entre el hijo/a y la madre; tiempo y espacio en el entorno hospitalario; percepción de sí misma y repercusiones del proceso de la enfermedad. Conclusiones: Las cuidadoras primarias expresan su cotidiano como la repetición de las mismas actividades en el hospital, al participar en el cuidado lo asumen como su responsabilidad para contribuir en la pronta recuperación del niño/a.

The present study is intended to survey the daily life of a primary healthcare giver during the hospitalization of a child with chronic illness, taking into consideration that the crucial issue for the nursing professionals is the development of all the processes for adequate healthcare delivery. Objective: To analyze the daily routine of the primary healthcare giver throughout the hospitalization time of a chronically ill child. Methodology: A qualitative phenomenological study involving 6 healthcare givers for hospitalized children with chronic diseases assigned to the Infectology service of a third level hospital. For data collection, direct observation of the participants and application of semi-structured interview were used. The responses of the participating caregivers in the interview were recorded priorto informed consent and thematic analysis was performed. Findings: The analysis of data brought into evidence the existence of five categories and 2 subcategories. The five categories found were: 1. Mother-childward care provision, 2. mother-child attachment as bond-of-affection strengthening tool, 3. time and space in the hospital environment, 4. self-perception and 5. disease process repercussions. The fifth category has three subcategories. Conclusions: The daily lives of the primary healthcare givers are fraught with repetitive activities in the hospital wards. When participating in the healthcare delivery, the caregivers unalloyedly assume it as their responsibility to contribute to the early recovery of the child.

A qualitative research on caring ability and demands of the primary caregivers of stroke patients in community / 中国实用护理杂志

Objective To explore the caring ability and demands of the primary caregivers of stroke patients in community. Methods Seventeen patients of stroke in community participated in the semi-structure interviews. Data were analyzed by Colaizzi phenomenological procedure. Results The lack of ability of the primary caregivers to take care of, mainly reflected inthe lack of professional knowledge of the disease, lack of basic skills and medication blindness. The factors that affected the ability of the primary caregiversto take care ofwere health status and psychological status of the caregivers, duration of illness of patients, coordination degree of patients and financial burden. The caring demands of the caregivers mainly focused on the following areas: professional medical support, economic support, daily care service, and spiritual support services. Conclusions The government and community health service centers should pay more attention tothe rehabilitation of stroke patients in community, and help them to solvepractical problemsactively, meet the care needs, and improve their self-care ability, so as to improve the ability of daily life and quality of life of patients.

Relationship among psychological distress, adult attachment,and social support in primary caregivers of cancer patients / 中国心理卫生杂志

Objective:To explore the relationship among psychological distress,adult attachment,and social support in primary caregivers of cancer patients.Methods:A total of 208 primary caregivers of cancer patients in one third grade hospital in Anhui Province were recruited.The 10-item Kessler Psychological Distress Scale(K10),Experiences in Close Relationships Inventory(ECR) and Social Support Questionnaire(SSQ) were used to explore psychological distress,adult attachment,and social support status.Results:The average K10 score was (21.5 ± 7.5).Multiple linear regression analysis indicated that caregiver gender,pressure on patient care,and attachment anxiety had positive prediction on psychological distress (β =2.30,3.02,0.13),while residence had negative prediction on psychological distress (β =-3.22).Conclusion:It suggests that the psychological distress is related to attachment anxiety and social support among the primary caregivers.

A study on care-giving competence of the primary caregivers influence on nurse-social worker-college student volunteer team guide for the long-term bedridden elderly / 中国实用护理杂志

Objective To explore the effect of nurse-social worker-college student volunteer team guide on care-giving competence of the primary caregivers for the long-term bedridden elderly. Methods The research was conveniently focused on a total of 60 long-term bedridden elderly and 30 primary caregivers, pension caregiver in welfare home from March to May 2015. The nurse-social worker-college student volunteer team guide for the primary caregivers included distributing health manual, training skill, psychological support, respite care and so on. The intervention lasted for 3 months, twice a month, 150 minutes each time. This was a self comparison study. The care competence for the primary caregivers and self-care ability of daily activities for the long-term bedridden elderly were conducted before and after intervention. Results Before intervention, the total score of care-giving competence was 59.07 ± 13.42. After intervention, the total score was 66.64 ± 14.16. Before intervention, the scores of caring knowledge, operation technique, behavior and attitudes, decision-making and self-efficacy were as follows:18.48±3.46, 17.95±3.98, 12.16±3.08, 7.98±2.56. Whereas, after intervention, the scores were as follows:20.32±3.58, 20.48±2.74, 14.29±3.03, 9.65±2.07. Each dimension score after intervention was significantly higher than that before intervention (t=-2.87--2.02, P<0.01). For bathing, dressing, indoor transferring and eating in self-care ability of daily activities, the numbers of people in 60 long-term bedridden elderly were 8, 13, 21, 18 before intervention and 17, 24, 43, 29 after intervention. The self-care ability of daily activities of the primary caregivers such as bathing, dressing, indoor transferring and eating after intervention were significantly higher than that before intervention (χ2=4.093-4.857, P<0.05). Conclusions Nurse-social worker-college student volunteer team guide can enhance the care-giving competence of the primary caregivers as well as improve the self-care ability of daily activities for the long-term bedridden elderly.

Sobrecarga y percepción de la calidad de vida relacionada con el cuidador primario del paciente hemodializado / Burden and perception of the quality of life related with the primary caregiver for haemodialysis patient

Introducción: en los últimos años, ha adquirido importancia creciente la identificación del nivel de sobrecarga y las repercusiones sobre la calidad de vida de los cuidadores de los pacientes con enfermedades crónicas. El cuidador tiende a no buscar ayuda médica, postergándose y priorizando los problemas de su familiar dependiente, manteniendo la mayoría de sus propias enfermedades sin diagnosticar, tornándose casi invisible para el sistema de salud. Objetivos: identificar el nivel de sobrecarga del cuidador primario del paciente hemodializado y clasificar la calidad de vida percibida en sus diferentes dimensiones. Métodos: estudio transversal descriptivo. Muestreo no probabilístico. Realizado en un periodo de 6 meses. Se incluyó una muestra de 134 cuidadores primarios. Con el programa SPSS versión 19 se realizó el análisis estadístico, se utilizaron frecuencias y proporciones en variables cualitativas; y en las cuantitativas, medidas de tendencia central, X2. Aplicándose la Escala de Sobrecarga del Cuidador de Zarit y Cuestionario DarmouthCoop de Calidad de vida, versiones originales. Resultados: de 134 cuidadores, 76,9 por ciento (n= 103) mujeres; 23,1 por ciento (n= 31) hombres. El 30,6 por ciento (n= 41) cuidadores sin sobrecarga; 23,9 por ciento (n= 32) sobrecarga ligera y 45,5 por ciento (n= 61) sobrecarga intensa. Las dimensiones de forma física, sentimientos, cambio en el estado de salud y apoyo social tuvieron una percepción de la calidad de vida como mala o muy mala. Conclusiones: un gran porcentaje de la población analizada presenta sobrecarga intensa con afección en las dimensiones de calidad de vida percibida(AU)

Introduction: in recent years, it has become of great importance to identify the level of burden and implications on quality of life for primary caregivers of patients with chronic diseases. The caregiver tends not to seek for medical help, putting off his health; he gives priority to the patient's problem. Unfortunately, the caregiver diseases are not diagnosed by the health system. Objectives: To identify the burden level of primary caregivers for haemodialysis patient. To classify the perceived quality of life within its different dimensions. Methods: A cross sectional study was performed with no probabilistic sampling. It was conducted during six months. The sample size was 134 primary caregivers. With the SPSS program 19 version the statistical analysis was conducted. For the descriptive statistics, frequencies and proportions were used on qualitative variables, measures of central tendency and X2 in quantitative variables. The original version of the Zarit Burden Interwiew and the Dartmouth COOP Functional Assessment Charts were used. Results: 76.9 percent (n= 103) of the participants were women, 23.1 percent (n= 31) were men. The 30.6 percent (n= 41) showed no burden, 23.9 percent (n= 32) showed mild burden and 45.5 percent (n= 61) with severe burden. The functional assessment on physical fitness, feelings, change in health and social support were perceived as pretty bad or very bad. Conclusions: A large percentage of the studied population shows a severe burden impacting on the perceived functional assessment on the quality of life(AU)

Caracterización del cuidador primario de enfermo oncológico en estado avanzado / Characterization of the primary caregiver of cancer patients in advanced stage

Introducción: En Cuba, los tumores malignos constituyen la segunda causa de muerte, con gran impacto en la dinámica familiar. Objetivos: caracterizar al cuidador informal oncológico y los aspectos que contribuyan a la calidad del cuidado domiciliario. Métodos: se realizó estudio descriptivo en el policlínico Diego Tamayo del municipio Habana Vieja durante el período de enero a junio del 2015. El universo estuvo constituido por 53 cuidadores informales de adultos oncológicos en estado avanzado. Para obtener la información se utilizó análisis documental y aplicación de encuesta, previo consentimiento informado. Resultados: la mayor representación de los cuidadores correspondió al sexo femenino, entre 60-64 y 55-59 años respectivamente. El nivel medio de escolaridad mostró superioridad numérica. Los cónyuges e hijos fueron el parentesco de mayor representatividad, con un período entre 1-3 años dedicado al rol de cuidador. Existió predominio con necesidad de instrucción para la atención paliativa domiciliaria, siendo los cuidadores satisfechos los de mayor representación. Conclusiones: la instrucción, asesoría, entrenamiento, aplicación de guías psicoeducativas y medidas de alivio, constituyen aspectos esenciales en la calidad de los cuidados paliativos domiciliarios, proporcionados en la fase avanzada de la enfermedad hasta la muerte y el duelo(AU)

Introduction: In Cuba, malignant tumors are the second leading cause of death, with great impact on family dynamics. Objectives: To characterize the informal caregiver and oncological aspects that contribute to the quality of home care. Methods: descriptive study was conducted at the polyclinic Diego Tamayo Habana Vieja municipality during the period from January to June 2015. The universe was composed of 53 informal caregivers of adults with advanced-stage cancer. Methods used: document analysis and survey application, prior informed consent. Results: the largest representation of caregivers were female between 60-64 years and 55 to -59 respectively. The average level of schooling showed numerical superiority. Spouses and children was the most representative relationship with a period of 1 -3 years dedicated to the role of caregiver. There was predominance in need of instruction for home palliative care, caregivers satisfied being the most represented. Conclusions: It is essential to improve and implement support programs caregiver respite services and temporary application of psychoeducational guidelines in primary care, to provide comprehensive palliative care from the time of diagnosis to death and mourning(AU)