Cuidadores familiares de pessoas com demência: um estudo exploratório randomizado utilizando a Terapia de Aceitação e Compromisso em grupo / Family caregivers of people with dementia: an exploratory randomized study using Group Acceptance and Commitment Therapy

Introdução: Estima-se que a prevalência de sintomas ansiosos em cuidadores familiares de pessoas com demência é igual ou maior do que a prevalência de sintomas depressivos, embora a ansiedade tenha sido pouco explorada na literatura voltada para este público. Estudos têm demonstrado que a Terapia de Aceitação e Compromisso (ACT) pode ser utilizada com cuidadores familiares, com efeitos positivos sobre sintomas ansiosos. Entretanto, a ACT ainda não foi avaliada no formato em grupo e tampouco em países em desenvolvimento para este público. Objetivos: O trabalho foi subdividido em dois estudos. O objetivo do Estudo 1 foi revisar a literatura através de uma meta-análise e avaliar quantitativamente a eficácia da ACT em grupo, presencialmente, nos sintomas de ansiedade e depressão de adultos com 18 anos ou mais. O objetivo do Estudo 2 foi adaptar e avaliar os efeitos da ACT, em grupo, nos sintomas de ansiedade de cuidadores familiares de pessoas com demência. Método: No Estudo 1, quatro bases de dados foram pesquisadas em agosto/2018 e uma busca atualizada foi realizada em novembro/2021. Foram incluídos 48 estudos clínicos randomizados (3292 participantes: ansiedade = 34 ECRs; depressão = 40 ECRs). O Estudo 2, é um estudo exploratório randomizado, realizado em um único centro, não-cego. Cinquenta e sete cuidadores familiares de pessoas com demência foram randomizados para o grupo intervenção (n = 29) ou lista de espera (n = 28). O grupo intervenção participou de oito sessões de ACT em grupo, realizadas por vídeo conferência, semanalmente. Os participantes responderam aos questionários de avaliação de ansiedade, depressão, flexibilidade psicológica, qualidade de vida e sobrecarga, em três momentos diferentes: semanas 0, 9 e 20. Análises de regressão múltipla foram realizadas para comparar os escores dos participantes do grupo intervenção e controle, na semana 9 e 20. Os escores da linha de base foram usados como controle nas análises de intenção de tratamento (ITT) e dos participantes que participaram em pelo menos seis sessões de intervenção. Resultados: No Estudo 1 o tamanho de efeito para sintomas ansiosos foi de médio a grande (g=0,52, p < 0,001; 95% IC=0,30 ­ 0,73), já o tamanho de efeito para sintomas depressivos foi de pequeno a médio (g=0,47, p < 0,001; 95% IC=0,31 ­ 0,64). A amostra do Estudo 2 foi composta em sua maioria mulheres, de baixo a médio nível socioeconômico, com uma idade média de 52 anos e mediana de escolaridade de 15 anos. Participantes do grupo intervenção apresentaram pontuações mais baixas para sintomas de ansiedade e depressão, comparados com participantes do grupo controle. Este resultado foi encontrado nas semanas 9 e 20, tanto na análise de ITT, quanto na análise daqueles que completaram seis sessões ou mais. Apenas os participantes que participaram de pelo menos seis sessões, apresentaram redução da sobrecarga nas semanas 9 e 20, além de apresentarem melhora na qualidade de vida na semana 9. Os resultados não indicaram efeitos da intervenção na flexibilidade psicológica. Conclusão: Este estudo oferece evidências a favor da utilização da ACT em grupo, com familiares de pessoas com demência, auxiliando na redução dos sintomas ansiosos e depressivos.

Background: The prevalence of anxiety symptoms is estimated to be equal to or higher than the prevalence of depressive symptoms in family carers of people with dementia. However, anxiety is currently somehow neglected in the carer literature. Previous studies demonstrated that Acceptance and Commitment Therapy (ACT) is effective for treating anxiety symptoms in family carers of people with dementia, but the vast majority of these studies were conducted in developed countries. Objectives: The thesis was divided into two studies. Study 1 was a meta-analysis which aimed to quantitatively examine the efficacy of group-based ACT, delivered face-to-face, on anxiety and depressive symptoms in adults aged 18 or older. The Study 2 adapted and investigated the effectiveness of an ACT group intervention on the anxiety symptoms in Brazilian family carers of people with dementia. Method: In Study 1, four electronic databases were searched in August, 2018 and an update search was conducted in November, 2021. Forty-eight randomised controlled trials (RCTs) were included in this review (3292 participants: anxiety = 34 RCTs, depression = 40 RCTs). Study 2 was a single-centre, unblinded, double-arm exploratory randomised trial. Fifty-seven family carers of people with dementia presenting with mild to severe anxiety symptoms were randomised to the intervention group (n = 29) or waiting list group (n = 28). The intervention group received eight weekly sessions of group ACT, delivered through videoconference. Participants completed the measure of anxiety and depressive symptoms, caregiver burden, psychological flexibility and quality of life at Weeks 0, 9 and 20. Multiple linear regression analyses were performed to evaluate whether there was a significant difference in scores between the intervention and control groups, at weeks 9 and 20, while controlling for the baseline scores using both intention-to-treat (ITT) and completers data analyses. Results: In Study 1 the overall effect size for anxiety symptoms was medium-to-large (g = 0.52, p < 0.001; 95% CI =0.30­0.73), while the overall effect size was small-to-medium for depressive symptoms (g = 0.47, p < 0.001; 95% CI = 0.31­0.64). In Study 2 Participants were mostly women, from low- to middle-income socioeconomic levels, with a mean age of 52 years and median education of 15 years. Participants in the intervention group had lower scores of anxiety and depression symptoms compared to participants in the control condition at weeks 9 and 20 in both the ITT and completer analyses. Only participants who attended six or more sessions (i.e., completer sample) demonstrated reduced caregiver burden at both follow-up points. The completer sample also showed improvement in quality of life at week 9. The results did not show any effect of the intervention on psychological flexibility. Conclusion: This study provides evidence supporting the use of group ACT, delivered through videoconference, with family carers of people with dementia to help them cope better with anxiety and depressive symptoms.

Rol de la familia en el cuidado del adulto mayor: un estudio de caso de la ciudadela pacheco / Role of the family in the care of the elderly: A case study of the citadel pacheco

La familia se ha convertido en la base importante de apoyo en la vida de los adultos mayores, convirtiéndose estos en personas dependientes de otra ya sea por distintos determinantes, un adulto mayor dependiente requiere de apoyo de un cuidador principal perteneciendo al mismo círculo familiar, específicamente de sexo femenino. Los cuidados directos a una adulta mayor recaen en una sola persona, trayendo consecuencias en la misma, como es la sobrecarga de trabajo en la cuidadora. Objetivo: indagar el Rol de la Familia en el cuidado del adulto mayor y a su vez analizar el nivel de sobrecarga del cuidador y la calidad de vida de ambas personas en estudio. Materiales y métodos: Corresponde a un estudio de caso, de tipo observacional, descriptivo y analítico, cualitativo, en base al rol de la familia en el cuidado de la adulta mayor Esperanza Mera de la ciudadela Francisco Pacheco de la ciudad de Portoviejo. Resultados: Existe poca satisfacción en la calidad de vida y el nivel de sobrecarga es intensa, al igual que manifiestan disfunción familiar leve, para lo cual se diseñó un plan el mismo que deben de llevar a cabo en el Centro de Salud al que pertenecen. Conclusión: Es fundamental que la cuidadora este completamente orientada y capacitada por profesionales de salud en el cuidado del adulto mayor dependiente y en su auto cuidado, ya que la misma es la única responsable del cuidado sin recibir apoyo del resto de la familia(AU)

The family has become the important base of support in the lives of older adults, making them dependent on another, either due to different determinants, a dependent older adult requires support from a primary caregiver belonging to the same family circle. specifically female. Direct care for an older adult falls on a single person, bringing consequences to it, such as work overload for the caregiver. Objective: to investigate the Role of the Family in the care of the elderly and, in turn, to analyze the level of burden of the caregiver and the quality of life of both people under study. Materials and methods: Corresponds to an observational, descriptive and analytical, qualitative case study, based on the role of the family in the care of the elderly Esperanza Mera from the Francisco Pacheco citadel in the city of Portoviejo. Results: There is little satisfaction in the quality of life and the level of overload is intense, as well as manifesting mild family dysfunction, for which a plan was designed that must be carried out in the Health Center to which they belong. Conclusion: It is essential that the caregiver is completely oriented and trained by health professionals in the care of the elderly dependent adult and in their self-care, since they are the only one responsible for the care without receiving support from the rest of the family(AU)

Can Family Carer Groups Help People with Intellectual Disabilities? Applying Focused Ethnography Methods in Community Contexts of Northeastern Thailand

@#Introduction: This study aimed to explore the experience of family carer groups caring for individuals with intellectual disabilities (IDs) in the community contexts of Northeastern Thailand. Materials and Methods: We applied a focused ethnography method with a purposive sampling technique to conduct 35 in-depth interviews (of 14 individuals with IDs, 12 caregiving parents and nine disability group leaders, respectively), which were audio-recorded and transcribed verbatim, then translated from Thai to English. We used content analysis to code the interviews and develop themes. To evaluate the reliability of the coding attempt, we employed data triangulation techniques. Results: Family carer groups seemed to provide benefit to people with IDs and their families by offering support related to information records, the recovery of health and occupational skills development. Conclusion: Family carer groups are an integral part of efforts to support people with IDs. Notably, these groups may facilitate the early formation of long-term parent carer plans, which can better optimise the care and health outcomes of people with IDs in Thailand.

Fundamentos teóricos para la formación de habilidades del cuidador de pacientes con daño cerebral adquirido

RESUMEN El presente texto hace referencia a la gran carga física y psíquica que contrae el cuidador como consecuencia del cuidado de pacientes con Daño Cerebral Adquirido. Su objetivo está dirigido a sistematizar los elementos epistemológicos acerca de la sobrecarga del cuidador de pacientes con Daño Cerebral Adquirido, en función de mejorar las repercusiones físicas, emocionales, médicas, sociales y económicas que pueden experimentar en su atención. Este artículo constituye una salida del proyecto de investigación Intervención psicosocial para perfeccionar la atención integral al paciente con Daño Cerebral Adquirido, el cual gestiona el Centro para el Desarrollo de las Ciencias Sociales y Humanísticas en Salud, de la Universidad de Ciencias Médicas de Camagüey. El tipo de estudio es Investigación- acción participativa y se ejecutó en el período comprendido entre enero de 2018 y febrero de 2020.

ABSTRACT The present text makes reference to the great load physics and psychic that contracts the caretaker like consequence of the care of patient with Acquired Brain Damage (ABD). Its objective is directed to base the epistemological elements on the caretaker's overload for its attention. It is intruded in inherent questions to the ABD and the physical, emotional repercussions, doctors, social, economic, and others that the caretakers of these patients can experience. This article constitutes an exit of the project of investigation Psychosocial intervention to perfect the integral attention to the patient with Acquired Brain Damage, which negotiates the Center for the Development of the Social and Humanistic Sciences in Health, of the University of Medical Sciences of Camagüey. The study type is of character Investigation-action participatory and it was executed in the period between January of 2018 and February of 2020.

Intervención educativa a cuidadores de enfermos con síndrome demencial en zonas rurales. GBT No. 1 / Educational intervention for caregivers of patients with dementia syndrome in rural areas GBT No. 1 / Intervenção educacional para cuidadores de pacientes com síndrome de demência em áreas rurais GBT No. 1

RESUMEN Las personas, en el proceso de desarrollo, requieren alcanzar habilidades específicas para satisfacer las necesidades cotidianas, de tal manera que puedan vincularse a los distintos roles sociales de acuerdo con la etapa del proceso vital humano en el cual se encuentren. Con el objetivo de identificar el nivel de conocimientos y las habilidades de los cuidadores sobre las necesidades básicas para la atención a pacientes con síndrome demencial. Se diseñó una estrategia de intervención capacitante para elevar los conocimientos y las habilidades de los cuidadores. Se realizó una intervención donde se preparó a los 22 cuidadores de adultos mayores con síndrome demencial existentes en el periodo a evaluar en las habilidades de interés por parte de ellos, el estudio se dividió en cinco etapas, diagnóstica, intervención, evaluación, evaluación del impacto y comparación de los resultados de los cuidadores pertenecientes al área urbana y los del área rural. Antes de la preparación se obtuvo una evaluación de Mal (88,41%) de los casos evaluados, luego de realizar la intervención capacitante, el 88,23% de los cuidadores se evaluaron de bien. Se logró modificar el nivel de conocimientos y las habilidades de los cuidadores sobre las necesidades básicas para la atención a sus pacientes y se diseñó un programa de intervención educativa para los cuidadores del estudio.

ABSTRACT People, in the development process, require attaining specific skills to satisfy daily needs, so that they can be linked to different social roles according to the stage of the human life process in which they are. With the aim of identifying the level of knowledge and skills of caregivers about the basic needs for caring for patients with dementia syndrome. A training intervention strategy was designed to raise caregivers' knowledge and skills. A training intervention was carried out where the 22 caregivers of older adults with dementia syndrome existing in the period to be evaluated in the skills of interest by them were prepared, the study was divided into five stages, diagnostic, intervention, evaluation, evaluation of the impact and comparison of the results of the caregivers belonging to the urban area and those of the rural area. Before preparation, an evaluation of Mal (88.41%) of the cases evaluated was obtained. After performing the training intervention, 88.23% of the caregivers were evaluated well. It was possible to modify the level of knowledge and skills of the caregivers on the basic needs for the care of their patients and an educational intervention program was designed for the caregivers of the study.

RESUMO As pessoas, no processo de desenvolvimento, precisen adquirir habilidades específicas para satisfazer as necessidades diárias, de forma que possam ser ligadas a diferentes papéis sociais de acordo com o estágio do processo da vida humana em que se encontram. Com o objetivo de identificar o nível de conhecimento e habilidades dos cuidadores sobre as necessidades básicas de atendimento de pacientes com síndrome de demência. Uma estratégia de intervenção de treinamento foi projetada para aumentar o conhecimento e as habilidades dos cuidadores. Foi realizada uma intervenção de treinamento em que os 22 cuidadores de idosos com síndrome de demência existentes no período foram preparados para avaliar suas habilidades de interesse; o estudo foi dividido em cinco etapas: diagnóstico, intervenção, avaliação, avaliação da impacto e comparação dos resultados dos cuidadores pertencentes à área urbana e à área rural. Antes do preparo, obteve-se uma avaliação de Mal (88,41%) dos casos avaliados e, após a intervenção do treinamento, 88,23% dos cuidadores foram bem avaliados. Foi possível modificar o nível de conhecimento e habilidades dos cuidadores sobre as necessidades básicas de atendimento de seus pacientes e um programa de intervenção educacional foi elaborado para os cuidadores do estudo.

Outcome of Carer-Assisted Care for Stroke Survivors with Severe Disability: Preliminary Findings / Jurnal Sains Kesihatan Malaysia

@#Involvement of informal carer in post-stroke care is important to prevent development of secondary complications particularly among stroke survivors with severe disability. However, to date, evidence on the benefit of stroke care training and involving carer to assist in the care for this group of stroke survivors is still limited. In this study, we evaluated the outcome of a carer-assisted care program for stroke survivors with severe disability who live at home. Sixteen stroke survivors with severe disability and 16 primary carers participated in this pre-test post-test intervention study. Carers were trained using a stroke care module which was developed by a group of multidisciplinary researchers from Universiti Kebangsaan Malaysia, prior to implementing the daily care for 8 weeks. Outcome of care on stroke survivors was assessed in term of change in disability level and quality of life using Modified Barthel Index (MBI) and EuroQol health-state measure (EQ-5D and EQ-VAS), respectively. While outcome of stroke care training on carer was determined using Modified Caregiver Strain Index (MCSI). Significant improvement is shown in the stroke survivors’ EQ-VAS component of EuroQol health state measure (average increase by 12%, t = 2.86, p = 0.01) following the care. Although not statistically significant (t = 0.97; p = 0.35), the mean score of MCSI reduced by 14%. No significant change was found in the MBI of the stroke survivors at completion of the program. Carer-assisted care is useful in improving quality of life of stroke survivors and can potentially reduce stress level among carers. Larger study may assist in establishing these preliminary findings.

Sobrecarga y calidad de vida percibida en cuidadores familiares de pacientes renales / Overburden and quality of life perceived in family caregivers of renal patients

Introducción: la sobrecarga que recibe el cuidador afecta sus roles, debido a que debe dedicarse a satisfacer las necesidades del familiar, de este modo se afecta la calidad de vida, tanto del proveedor como del receptor de cuidados en el proceso salud-enfermedad. Objetivo: determinar la relación entre la sobrecarga percibida y la calidad de vida del cuidador familiar del paciente con insuficiencia renal crónica en Cartagena. Métodos: estudio correlacional, con una muestra de 225 cuidadores de pacientes que asistieron a instituciones prestadoras de servicios de hemodiálisis y diálisis peritoneal en Cartagena, escogidos en forma aleatoria. La medición de la calidad de vida se evaluó mediante el instrumento propuesto por Ferrel, se determinó la sobrecarga mediante la escala de sobrecarga de Zarit. Se expresaron los resultados, en frecuencias, medidas de tendencia central, media y desviación típica. La relación entre las variables se determinó utilizando Kruskall Wallis. Resultados: participaron 225 cuidadores, 75,1 por ciento en intervalos de edad entre 36 a 59 años de edad, 76,9 por ciento femenino, 54,7 por ciento eran casadas y en mayoría eran de estrato 2 el 62 por ciento. La sobrecarga que se manifestó por parte del cuidador se asoció especialmente en las dimensiones física, psicológica y social, promedios de (72,3) (68,0) y (66,0), obteniendo p-valor <0,05 cada una; la dimensión espiritual no presenta asociación puesto que su p-valor fue ≥ 0,05. Conclusiones: la sobrecarga en los cuidadores de pacientes con insuficiencia renal se asoció con la calidad de vida, en las dimensiones física, psicológica y social(AU)

Introduction: overloading affects the caregiver receives their roles because they must devote to meeting the needs of the family, thus the quality of life of both the provider and the recipient of care in the health-disease process is affected. Objective: to determine the relationship between perceived overload and quality of life of caregivers of patients with chronic renal failure in Cartagena. Methods: correlative study with a sample of 225 caregivers of patients attending service institutions hemodialysis and peritoneal dialysis in Cartagena, chosen at random. Measuring the quality of life was assessed using the proposed instrument Ferrel, overloading was determined by the Zarit burden scale. The outcome measures of central tendency average and standard deviation were expressed in frequencies. The relationship between variables was determined using Kruskall Wallis. Results : involved 225 caregivers, 75.1 percent in age ranges from 36 to 59 years, 76.9 percent female, were married in 54.7 percent and were mostly layer 2 62 percent. The overload manifested by the caregiver is especially associated in the physical, psychological and social dimensions averages (72.3) (68.0) and (66.0) to obtain p-value <0.05 each; the spiritual dimension no association since its p-value was ≥ 0.05. Conclusions: overload in caregivers of patients with renal impairment was associated with quality of life, physical, psychological and social dimensions(AU)

Síntomas psicológicos y conductuales en pacientes con enfermedad de Alzheimer leve y moderada / Psychological and behavioral symptoms in patients with minor and moderate Alzheimer disease

Introducción: el proceso de envejecimiento biológico de las personas es irreversible y comienza desde el nacimiento. Cuba es un país con envejecimiento poblacional, enfrenta problemas médicos de los ancianos tales como demencia. La enfermedad de Alzheimer es la más común, enfermedad que evoluciona por estadios, y en la medida en que transita de uno a otro se incrementan los síntomas psicológicos y conductuales, aumentando la demanda de cuidados especiales, desempeñados por los cuidadores principales. Objetivo: identificar los síntomas psicológicos y conductuales de los pacientes con enfermedad de Alzheimer leve y moderada desde la perspectiva del cuidador principal. Métodos: estudio descriptivo en 35 cuidadores principales de pacientes con enfermedad de Alzheimer leve y moderada del policlínico Carlos Manuel Portuondo municipio Marianao, desde enero de 2010 hasta septiembre de 2011. La información fue recogida con el Inventario Neuropsiquiátrico validado al castellano, se procesó con distribuciones de frecuencia absoluta y porcentaje. Resultados: las repeticiones (82,85 pro ciento), alteraciones del sueño (77,14 por ciento) y trastornos de hábitos alimentarios (71,42 por ciento) fueron los síntomas psicológicos y conductuales de mayor incidencia en los pacientes con enfermedad de Alzheimer leve y moderada, los menos frecuentes fueron: euforia (17,14 por ciento), alucinaciones, apatía y delusiones en el 40,00 por ciento. Conclusiones: desde la perspectiva del cuidador principal, los síntomas psicológicos y conductuales más frecuentes en los pacientes con enfermedad de Alzheimer leve y moderada del Policlínico Carlos Manuel Portuondo fueron las repeticiones, las alteraciones del sueño y los trastornos de los hábitos alimentarios(AU)

Introduction: the process of people's biological aging is irreversible and it begins from the birth. Cuba is a country with and important population's aging and an expectation of 77.97 year-old life, facing to the elderly medical problems such as the dementia, being the Alzheimer disease the most common. This disease evolves by stages and as long as it goes from a stage to another the psychological and behavioral symptoms are increased; increasing the demand of special cares, important function carried out by the main carer. Objective: to identify the psychological and behavioral symptoms of the patients with minor and moderate Alzheimer disease from the main carer's perspective. Method: adescriptive study of a sample of 35 main carers of patient with minor and moderate Alzheimer disease from the policlinic Carlos Manuel Portuondo of Marianao municipality. Statistical charts of absolute frequency and percentage were made for the processing and statistical analysis of the information. Results: the repetitions, the dream disorder and the eating disorder were the most frequent psychological and behavioral symptoms of patient with minor and moderate Alzheimer disease. Conclusions: to avoid or to minimize the impact of the psychological and behavioral symptoms in the main carer it is necessary that it is supported by the family, the neighbors and/or the team of health(AU)

Principios gestálticos aplicados al asesoramiento domiciliario del cuidador de enfermos de Alzheimer / Gestalt principles applied to home counseling for caregivers of Alzheimer's patients

La óptica con la que se enfrentan determinadas situaciones emerge con una sugestiva visión mediante los principios gestálticos. Aplicados a la competencia del cuidador de enfermos de Alzheimer, sitúa a éste a evaluar su afirmación en el presente, a envolverse en la experiencia y a prestar atención a debilidades, limitaciones y barreras en el ejercicio. Asimismo potenciar las habilidades y aceptar la propia realidad para trabajar en el progreso y ocuparse finalmente de las propias necesidades son sus proposiciones. La toma de conciencia (expresiva y actitudinal) y la búsqueda de soluciones así como el correcto manejo de las emociones suscitadas, debe marcar estas díadas en el cuidado. El descubrimiento del potencial simboliza este objetivo terapéutico desde corrientes humanistas.

The optics with which certain situations are faced emerges with a suggestive vision through Gestalt principles. Applied to the competence of the caregiver of Alzheimer's patients, it places them to evaluate their affirmation in the present, to become involved in the experience and to pay attention to weaknesses, limitations and barriers in exercise. Likewise, enhancing skills and accepting one's own reality to work on progress and finally take care of one's own needs are his propositions. The awareness (expressive and attitudinal) and the search for solutions as well as the correct management of the emotions raised, must mark these dyads in the care. The discovery of the potential symbolizes this therapeutic objective from humanistic currents.

Cultural differences are reflected in variables associated with carer burden in FTD: A comparison study between India and Australia / Diferenças culturais se refletem nas variáveis associadas à sobrecarga do cuidador em DFT: um estudo comparativo entre Índia e Austrália

ABSTRACT There is great need to understand variables behind carer burden, especially in FTD. Carer burden is a complex construct, and its factors are likely to vary depending on the type of dementia, carer characteristics and cultural background. Objective: The present study aimed to compare profiles and severity of carer burden, depression, anxiety and stress in carers of FTD patients in India in comparison to Australia; to investigate which carer variables are associated with carer burden in each country. Methods: Data of 138 participants (69 dyads of carers-patients) from India and Australia (India, n=31; Australia, n=38). Carer burden was assessed with the short Zarit Burden Inventory; carer depression, anxiety and stress were measured with the Depression, Anxiety and Stress-21. Dementia severity was determined with the Frontotemporal Dementia Rating Scale (FTD-FRS), and a range of demographic variables regarding the carer and patient were also obtained. Results: Overall, levels of carer burden were not significantly different across India and Australia, despite more hours delivering care and higher dementia severity in India. Variables associated with burden, however, differed between countries, with carer depression, anxiety and stress strongly associated with burden in India. By contrast, depression, stress, and dementia severity were associated with burden in Australia. Conclusion: This study demonstrated that variables associated with carer burden in FTD differ between cultures. Consequently, cultural considerations should be taken into account when planning for interventions to reduce burden. This study suggests that addressing carers' skills and coping mechanisms are likely to result in more efficacious outcomes than targeting patient symptoms alone.

RESUMO Há uma grande necessidade de se entender as variáveis por trás da sobrecarga do cuidador, especialmente em DFT. A sobrecarga é um construto complexo e os fatores provavelmente estão ligados ao tipo de demência, características do cuidador e origens culturais. Objetivo: O presente estudo objetivou comparar perfis e gravidade da sobrecarga, depressão, ansiedade e estresse nos cuidadores dos pacientes com DFT da Índia em comparação aos da Austrália; investigar que variáveis do cuidador estão associadas à sobrecarga em cada país. Métodos: Dados de 138 participantes (69 pares cuidadores-pacientes) da Índia e Austrália (Índia, n=31) e Austrália (n=38). A sobrecarga do cuidador foi avaliada através da versão curta do Inventário de Sobrecarga de Zarit; depressão, ansiedade e estresse do cuidador através com o Depression, Anxiety and Stress-21. A gravidade da demência foi determinada com a Frontotemporal Dementia Rating Scale (FTD-FRS), e uma gama de variáveis demográficas do cuidador e do paciente foram também obtidas. Resultados: De modo geral os níveis de sobrecarga do cuidador não foram significativamente diferentes entre Índia e Austrália, apesar do maior tempo despendido no cuidado e gravidade da demência na Índia. As variáveis associadas à sobrecarga, todavia, diferiram entre os países, com depressão do cuidador, ansiedade e estresse fortemente associados com sobrecarga na Índia. Em contraste, depressão, estresse e gravidade da demência foram associados à sobrecarga na Austrália. Conclusão: Este estudo demonstrou que variáveis associadas à sobrecarga do cuidador na DFT difere entre culturas. Consequentemente, aspectos culturais devem ser levados em consideração quando se planeja intervenções para redução da sobrecarga. Este estudo sugere que programas direcionados às habilidades e meios de se lidar com a situação dos cuidadores são provavelmente mais eficazes do que aqueles só aos sintomas do paciente.

La experiencia del familiar de la persona hospitalizada en la unidad de cuidados intensivos / The experience of the relative of the person hospitalized in the intensive care unit

Objetivo: Describir la experiencia del familiar de la persona hospitalizada en Unidad de Cuidados Intensivos Adulto. Metodologia: Investigación cualitativa, fenomenológica descriptiva, mediante el abordaje de Colaizzi; se realizaron 9 entrevistas a profundidad previo consentimiento informado, las cuales se grabaron y transcribieron, la información se incluyo en el programa Atlas ti 6.0. El escenario fueron tres salas de espera de las unidades de cuidado intensivo adulto de la Fundación Oftalmológica de Santander, institución de cuarto nivel de complejidad. Resultados: Se determinaron 214 códigos descriptores, organizados en 30 códigos nominales y consolidados en 6 categorías que reflejan de forma exhaustiva el fenómeno: sentimientos, modificación de hábitos, afrontamiento, soportes, transformación y necesidades. Análisis Comparado: Existen características similares de la experiencia identificadas en los estudios independiente del contexto, por el contrario hay diferencias derivadas de las condiciones del entorno y de las políticas o normas de cada institución. Conclusiones: La experiencia expone variedad de estados afectivos del ánimo, somete al familiar a una modificación de los hábitos donde experimenta una crisis y desarrolla estrategias que favorecen adaptación al escenario y aceptación de la situación. Para afrontar la vivencia encuentra soporte en la red primaria, en el equipo de salud formal e informal, en la percepción de seguridad que brinda el servicio y en la espiritualidad; evoluciona al reconocer en el personal de salud un agradecimiento especial, obteniendo un aprendizaje y experimenta necesidades de información, apoyo económico, apoyo de la red primaria, del equipo de salud y deseo de cercanía.

Objective: Describe the experience of the patient's relative at ICU for adults. Methodology: Qualitative research, phenomenological descriptive, through Colaizzi's approach; nine interviews were carried out informing previously, which were recorded and transcribed, the information is included to Atlas 6.0. The places were three waiting rooms from ICU at Fundación Oftalmológica de Santander, fourth level of complexity institution. Results: 214 descriptive codes were determined, organized in 30 name codes and consolidated into 6 categories that highlight exhaustively the phenomenon: feelings, habits modification, facing up, support, transformation and needs. Compared Analysis: There are similar characteristics of the experience identified in the studies, apart from the context. On the contrary, there are differences derived from the environment conditions and the politics or rules of the institution. Conclusions: The experience displays a variety of affective states of mind, submits the relative to a modification of habits where he/she experiences a crisis and develops strategies that allow adaptation to the scenario and acceptance of the situation. He/she finds support in the primary chain to face up the experience, in the formal and informal health staff, in his/her perception of safety given by the service and in the spirituality; he/she evolves when he/she recognizes on the health staff a special gratitude, obtaining a learning and experiencing information needs, economical support, primary chain support and want of proximity.

Eficacia de la intervención enfermera para cuidadores con cansancio del rol del cuidador / Effectiveness of nurse intervention in the case of carers wearing of its role

Introducción: El cuidado familiar de personas con enfermedad crónica ha emergido durante los últimos años como un importante problema social, generando cambios en las familias, donde se destaca la figura del cuidador principal quien es la persona familiar o cercana que se ocupa de brindar de forma prioritaria apoyo tanto físico como emocional a otro de manera permanente y comprometida el cual se convierte en un enfermo secundario ya que se ve expuesto a una elevada carga física y psíquica. Objetivo: determinar la eficacia de la intervención de enfermería apoyo al cuidador principal en cuidadores de enfermos crónicos con diagnóstico de enfermería cansancio del rol del cuidador. Métodos: Se realizó un ensayo clínico controlado, aleatorio, doblemente enmascarado. La población objeto fueron cuidadores principales de personas con enfermedades crónicas que recibieron atención en el Hospital Universitario de Santander; el tamaño de la muestra fue de 30 personas, los cuales fueron asignados aleatoriamente por bloques, y de los cuales 10 cuidadores fueron para el grupo intervenido y 20 para el grupo no intervenido, el análisis de datos se realizó por medio del análisis de covarianza y el número necesario para tratar. Resultados: se encontró un efecto de 0.5, estadísticamente significativo, en la etiqueta de resultado bienestar del cuidador al comparar el grupo control con el grupo intervenido y a favor de este último. Conclusiones: la intervención de enfermería realizada es eficaz para el diagnóstico de enfermería cansancio del rol del cuidador y tienen un importante impacto, demostrando que se obtienen resultados positivos cuando se aplican en un solo individuo(AU)

Introduction: The family care of persons presenting with a chronic disease appeared over past years as an important social problem leading to changes in families, where the role of the main carers is notable who is a family member or a relative offering in a priority way a permanent and involved a physical or emotional support to another person who became a secondary patient since is exposed to a high physical and psychic burden. Objective: To determine the effectiveness of nursing intervention related to the support to the main patient's carers wearing of its role. Methods: A double-blind, randomized, controlled and clinical trial of persons presenting with chronic diseases treated and cared in the University Hospital of Santander, Spain; sample included 30 persons who were random allocated to by blocks where 10 carers were in the intervention group and 20 for the non-intervention group; data analysis was made by covariance method and the number necessary to be treated. Results: There was an statistically significant effect of 0,5 in the result of carer wellbeing label comparing the control group with the intervention group one favoring this latter. Conclusions: The disease intervention carried out is effective for nursing diagnosis related to the role of a tired carer with an important impact, demonstrating that it is possible to achieve positive results when it is applied in an only subject(AU)

Eficacia de las intervenciones de enfermería mediante un programa para el cuidado en el hogar / Effectiveness of the nursing interventions by means of a program for home care

El objetivo del estudio fue evaluar la eficacia de las intervenciones de enfermería en personas con enfermedad crónica y sus cuidadores, dadas mediante el programa Preparación y Apoyo para el Cuidado en el Hogar. Estudio cuasiexperimental. Se valoraron las etiquetas de resultado Conocimiento: proceso de la enfermedad, Conocimiento: régimen terapéutico, Preparación del cuidador familiar domiciliario, Bienestar del cuidador principal. Los participantes se asignaron a tres grupos. El primer grupo recibió preparación para el alta, el segundo grupo recibió preparación para el alta e intervención telefónica y el tercer grupo recibió además de lo anterior, una visita en su domicilio. Tras la intervención se encontró diferencias de 0.55 y 0.20 en el CRE final de la etiqueta Conocimiento Proceso de la Enfermedad de las personas del segundo y tercer grupo, respectivamente. Se encontró que las intervenciones de enfermería dadas mediante el programa son eficaces para las personas con enfermedad crónica y sus cuidadores familiares(AU)

The objective of present study was to assess the effectiveness of nursing interventions in persons presenting with a chronic disease and their carers according to the Training and Support Program for Home Care. Present study was quasi-experimental. The following labels were assessed: Knowledge result: disease course, Knowledge: therapeutic regimen, Training of family carer at home, Wellbeing of main carer. The participants were randomized to three groups. The first group received training related to discharge, the second one received training for the discharge and telephone intervention and the third one received also of above mentioned trainings, a visit in its home. After intervention there were differences of 0.55 and 0.20 in the final CRE of the Knowledge label of Disease Course of the persons of second and third group, respectively. We found that the nursing interventions applied by means of the program are effective for the persons presenting with a chronic diseases and their family carers(AU)

A Post-Discharge Service for Brain Injury Patients in Hong Kong / 中国康复医学杂志

To establish an affordable and easily accessible post-discharge telephone follow-up service for people with brain injuries and their caregivers,and thus to provide an evidence base for developing cost-effective continuous care,region-wide.Method:Thirty-five adult patients with brain injuries and 26 caregivers were recruited from Neurosurgical Unit at QueenMary Hospital in this study.Participants were administered a structured telephone interview at the fourth week post-discharge,and again at the twelfth week post-discharge.Patients and caregivers at risk of poor adjustment were referred for further medical consultation or psychological intervention.Patients' physical and cognitive functioning were investigated while both patients and caregivers' emotional functioning and perceived socialsupport were explored.Satisfaction of the current service provided was also examined.Result:Majority of patients reported significant improvement in physical condition.A sizable number of patientsexperienced cognitive difficulties and reported insufficient psychosocial support received following discharge fromhospital.Majority of caregivers reported compromising health,emotional and social functioning in caregiving.Bothpatients and caregivers reported satisfaction with the service with caregivers reported higher satisfaction.Conclusion:Findings from current study showed that both patients of brain injuries and caregivers benefited from the post-discharge telephone follow-up service.Both of them agreed that such service helped to identify peopleat risk of poor adjustment,provide timely advice and emotional support.Our findings also indicated that caregiving significantly impairs caregivers' physical,emotional,and social functioning,suggesting a need to offer them advice on care skills,role or living adjustments,and stress management.

Repercusión de la demencia en los cuidadores primordiales del policlínico Ana Betancourt / Repercussion of dementia in the fundamental carers of

Introducción: la demencia senil es reconocida actualmente como una entidad mayor en el orden socioeconómico, geriátrico, psiquiátrico y epidemiológico. Su atención representa un elevado costo emocional y económico para el paciente, la familia y el cuidador primordial. Objetivos: describir la repercusión psicosocial del síndrome demencial en los cuidadores primordiales del policlínico Ana Betancourt. Métodos: se realizó un estudio descriptivo de corte transversal, durante el primer cuatrimestre del año 2009, en el policlínico Ana Betancourt del municipio Playa. Incluyó a 36 cuidadores de igual número de pacientes diagnosticados con demencia y enfermedad de Alzheimer, escogidos mediante muestreo por criterios. Resultados: los cuidadores primordiales eran en su mayoría féminas, hijas del paciente, en la quinta década de la vida, amas de casa, divorciadas y con un nivel de escolaridad de preuniversitario. El principal motivo de consulta de los cuidadores fue solicitar ayuda profesional para controlar los síntomas no cognitivos de la enfermedad. El cuidador dedica alrededor de 13 h diarias al cuidado del paciente que sufre de demencia, la mayor parte en la supervisión y vigilancia. Se encontró marcada afectación psicológica en el 64 por ciento de los cuidadores. El nivel de sobrecarga o estrés en la población de cuidadores estudiada resultó elevado. Conclusiones: el cuidado del paciente que sufre de demencia se asocia a una sobrecarga y estrés relevantes que se expresa en la elevada morbilidad psicológica constatada en los cuidadores primordiales. Se recomienda diseñar un plan de intervención educativa dirigido a estos cuidadores para reducir la sobrecarga o estrés crónico que sufren

Introduction: senile dementia is nowadays recognized as a major entity in socioeconomic, geriatric, psychiatric and epidemiologic order. Its care represents a high emotional and economic cost for patient, family and fundamental carer. Objectives: to describe the psychosocial repercussion of dementia syndrome in fundamental carers of Ana Betancourt Polyclinic. Methods: a cross-sectional and descriptive study was conducted during the first four months of 2009 in patients from Ana Betancourt Polyclinic of Playa municipality. It included 36 carers of a same number of patients diagnosed with dementia and Alzheimer disease according a criteria sampling. Results: most of fundamental carers were women, daughters of patients, in its fifth decade of life, housewives, divorced and with a pre-university schooling level. The main reason of carer's consultation was request professional help to control the non-cognitive symptoms of disease. The carer devotes almost 13 hours caring the patient suffering dementia, most of time in supervision and surveillance. There was a marked psychological affection in 64 percent of carers. The overload level or stress in group of study carers was high. Conclusions: the care of a patient suffering of dementia is associated with a significant level of overload and stress expressing in the high psychological morbidity seen in fundamental carers. It is necessary to design a educational intervention plan directed to these carers to reduce the chronic overload or stress suffered by these persons

Factores previsibles en la salud física y psicosocial del cuidador crucial del anciano con demencia en el hogar / Predictable factors in physical and psychosocial health of crucial carer of elderly presenting with dementia at home

Para algunos autores el cuidador crucial es un paciente oculto o desconocido que precisaría de un diagnóstico precoz de su enfermedad y de una oportuna e inmediata intervención. Con el objetivo de caracterizar la correlación existente entre múltiples factores que previsiblemente influyen en la salud del cuidador crucial del anciano con demencia en el hogar, se realizo un estudio con diseño descriptivo de corte transversal en 116 cuidadores, del área de salud Finlay, municipio Camagüey, entre Julio 2006 y diciembre 2008. Se obtuvo como resultados valores significativos en las correlaciones realizadas, y se observó un nivel de capacitación inadecuado del 78,1 por ciento, ausencia de un cuidador sustituto en el 81,6 por ciento, con una relación entre el tiempo como cuidador y el grado de sobrecarga percibida en el 75,8 por ciento de los casos. Esto resultados que nos permitieron proponer recomendaciones preliminares, en aras de mantener o restablecer los factores protectores de la salud física, psicológica y social de los cuidadores cruciales y su repercusión en la atención y el cuidado al anciano con demencia en el hogar(AU)

For some authors the crucial carer is a ùhiddenù or ùunknownù patient in whom it is necessary an early diagnosis of his disease and also of a proper and immediate intervention, To characterize the correlationship between multiple factors that may to influence in the health crucial carer of elderly presenting with dementia at home, a cross-sectional and descriptive study was conducted in 116 carers from the ùFinalyù health area of Camaguey municipality between July, 2006 and December, 2008. As result there were significant values in the correlationships carried out and also an inappropriate training of 78,1 percent, a lack of a substitute carer in the 81,6 percent with a relation to the time as carer and the overload level present in the 75,8 percent of cases. These results allowed us to propose preliminary recommendations to maintain or to restore the factors protecting the physical, psychological and social health of crucial carers and its repercussion on the care and management of elderly presenting with dementia at home(AU)

Necesidades de aprendizaje del cuidador principal para el tratamiento del anciano con demencia tipo Alzheimer / Learning needs of main carer for treatment of elderly presenting with type Alzheimer dementia

El cuidado de la persona con demencia es un proceso difícil que requiere de progresivas obligaciones, resultado de la dependencia de una persona enferma, representada bàsicamente por la figura del cuidador. Sujetos que asumen su responsabilidad, a pesar de sus insuficientes juicios. Identificar necesidades de conocimientos, limitaciones, e incapacidades para la ejecución de obligadas técnicas, así como su disposición para aprenderlas, conformaron objetivos de la investigación, a través de un estudio descriptivo prospectivo en el periodo de Septiembre del 2007 a Febrero del 2008, en áreas del policlínico Carlos Manuel Portuondo, Marianao. Eligiéndose una población de 25 Cuidadores Principales, los que son indagados, con cuestionario diagnóstico de conocimiento, recogiéndose como aspectos significativos: limitaciones para la ejecución de determinadas practicas de importancia, desconocimiento sobre la enfermedad y su manejo en sus distintos momentos. Aprobando su disposición para capacitarse, reconociendo al profesional de enfermería como primer enlace revelador en el cuidado de su familiar(AU)

The care of persons presenting dementia is a difficult process requiring progressive duties, result of the dependence of an ill person by carer a subject assuming its responsibility despite its insufficient judges. To identify the needs of knowledges, limitations and inabilities for execution of compulsory techniques, as well as its ready to learn them, are the objectives of present research by means of a prospective and descriptive study during September, 2007 to February, 2008 in areas of "Carlos Manuel Portuondo" polyclinic in Marianao municipality. We selected a group of 25 main carers, who were investigated using a diagnostic questionnaire related to knowledge including the following significant features: limitations for execution of important specific practices, lack of knowledge on disease and its management in different moments. Its ready to training was approved recognizing the nursing professional like the first revealing link in care of its relative(AU)

Calidad de vida de los cuidadores familiares: Life Quality among Family Carers

El objetivo de esta investigación es describir, desde la perspectiva etnográfica, cómo podría estar afectada la calidad de vida de los cuidadores familiares de adultos mayores con dependencia funcional, como consecuencia del desempeño del rol de cuidador, y según su percepción. Se trata de un estudio cualitativo etnográfico, con apoyo en la etnografía enfocada, en 14 cuidadoras familiares de adultos mayores de 65 años, con más de seis meses a su cuidado, en el municipio de Envigado, Colombia, en 2002, y una muestra de quince entrevistas en profundidad. El análisis de las entrevistas identificó siete grandes temas o categorías con las percepciones de las cuidadoras sobre su rol y los efectos de éste en su calidad de vida: significado de calidad de vida, percepción de la cuidadora sobre el rol de cuidadora, consecuencias del rol sobre su salud física y mental, relaciones cuidadora y persona cuidada, conocimientos y aprendizajes sobre el cuidado de las personas, apoyos que recibe la cuidadora para el cuidado, y la invisibilidad del trabajo de las cuidadoras. Las categorías que emergieron coinciden con las de otros estudios; se hace énfasis en la categoría "la invisibilidad del trabajo de la cuidadora familiar", en tanto es la menos documentada en la literatura, y en la importancia del acercamiento a los valores y las tradiciones de grupos para la interpretación de las respuestas de su vida social.

The aim of this research is to describe, from an ethnographical view, the way life quality of family carers of elderly population functionally dependent could be affected, as consequence of performing as such, as well as their own point of view. This is an ethnographical study, supported by focused ethnography, among 14 family carers of 65 years people, who had been caring for more than six months. It was done in the municipality of Envigado (Colombia), in the year 2002. The sampling was made of fifteen in depth interviews. The interview analysis evidenced seven major topics or categories about carers own perception on their role as such and its effects on their life quality: meaning of life quality; carers perception about their own role; physical and mental health consequences of the role; carer-caree relations; knowledge and learning about care people; carers support for developing as such; and invisibility of carers' job. The resulting categories coincide with the ones of some other studies. The category "invisibility of family carers' job" is noticeable but it is the least documented in literature and in the importance on value and group traditions approach for analyzing their responses to social life.