Soledad en cuidadores informales de personas con demencia durante la pandemia de COVID-19 / Loneliness in informal caregivers of people with dementia during the COVID-19 pandemic

ANTECEDENTES Y OBJETIVO: La soledad es un factor de riesgo para el desarrollo de enfermedades físicas y mentales, causando disminución en la calidad de vida y un aumento de la mortalidad. El objetivo de este artículo fue determinar los factores predictores de soledad en personas cuidadoras informales de personas con demencia dentro de un contexto de crisis como fue la pandemia por COVID-19 con el fin de identificar e intervenir en dichos factores desde la atención primaria de salud. DISEÑO Y METODOLOGÍA: Este es un estudio cuantitativo de carácter transversal para el cual se realizó un muestreo de conveniencia no probabilístico. Ciento noventa y cinco personas cuidadores informales, por medio de una encuesta en línea, respondieron preguntas sociodemográficas y clínicas sobre ellos mismos (soledad, síntomas ansiosos y depresivos, actividades físicas y mentales, sobrecarga y apoyo psicosocial) y sobre la persona con demencia (cambios en la memoria y en los síntomas conductuales y psicológicos). Los datos fueron recolectados durante 6 meses y se hicieron análisis descriptivos, de correlación y de regresión. RESULTADOS: La baja escolaridad, disminución del ingreso económico, no mantener durante la pandemia las actividades físicas y mentales y la sobrecarga en el cuidador se relacionaron significativamente con mayor soledad, mientras que los factores predictores de la misma fueron la presencia de sintomatología ansiosa depresiva, la baja percepción de apoyo psicosocial y la convivencia de la persona cuidadora con la persona con demencia. CONCLUSIÓN: El riesgo de desarrollar soledad en los cuidadores informales de personas con demencia es alto. Los profesionales de enfermería, particularmente en atención primaria, deben estar alertas a identificar a aquellos cuidadores que conviven con la persona con demencia, que presentan síntomas ansiosos y depresivos y que reportan una baja percepción de apoyo psicosocial dado que son más vulnerables de experimentar soledad percibida.

BACKGROUND AND OBJECTIVE: Loneliness is a risk factor for the development of physical and mental illness, causing decreased quality of life and increased mortality. The aim of this article was to recognise predictors of loneliness in informal caregivers of people with dementia in the context of a crisis such as the COVID-19 pandemic. DESIGN AND METHODOLOGY: 195 informal caregivers, through an online survey, answered sociodemographic and clinical questions about themselves (loneliness, anxious and depressive symptoms, physical and mental activities, overload and psychosocial support) and about the person with dementia (changes in memory and behavioural and psychological symptoms). RESULTS: Low schooling, decreased income, failure to maintain physical and mental activities during the pandemic and caregiver overload were significantly related to increased loneliness, while predictors of loneliness were the presence of depressive anxiety symptoms, low perception of psychosocial support and the caregiver living with the person with dementia. CONCLUSION: The risk of developing loneliness in caregivers of people with dementia is high. Nursing professionals, particularly in primary care, should be on the alert for those caregivers within this group who live with the person with dementia, who present anxious and depressive symptoms and who report a low perception of psychosocial support, as they are more vulnerable to experiencing perceived loneliness.

Insomnia Burden among Informal Caregivers of Hospitalized Lung Cancer Patients and Its Influencing Factors / 生物医学与环境科学（英文）

OBJECTIVE@#This study aimed to reveal the insomnia burden and relevant influencing factors among informal caregivers (ICs) of hospitalized patients with lung cancer.@*METHODS@#A cross-sectional study on ICs of hospitalized patients with lung cancer was conducted from December 31, 2020 to December 31, 2021. ICs' burden was assessed using the Caregiver Reaction Assessment (CRA), Hospital Anxiety and Depression Scale (HADS), and Insomnia Severity Index (ISI). Linear and logistic regression models were used to identify the influencing factors.@*RESULTS@#Among 289 ICs of hospitalized patients with lung cancer, 83 (28.72%), 53 (18.34%), and 14 (4.84%) ICs experienced mild, moderate, and severe insomnia, respectively. The scores concerning self-esteem, lack of family support, financial problems, disturbed schedule, and health problems were 4.32 ± 0.53, 2.24 ± 0.79, 2.84 ± 1.14, 3.63 ± 0.77, and 2.44 ± 0.95, respectively. ICs with higher Activities of Daily Living Scale (ADLS) scores were associated with a lower risk of insomnia, with an odd ratio ( OR) and 95% confidence interval ( CI) of 0.940 (0.898-0.983). Among the ICs, female gender ( OR = 2.597), alcohol consumption ( OR = 3.745), underlying medical conditions ( OR = 11.765), long-term caregiving experience ( OR = 37.037), and higher monthly expenses ( OR = 5.714) were associated with a high risk of insomnia.@*CONCLUSION@#Of the hospitalized patients with lung cancer, 51.9% experienced insomnia. Patients' ADL, ICs gender, alcohol consumption, underlying medical conditions, caregiving duration, and monthly expenses were influencing factors. Therefore, prompt screening and early intervention for ICs of patients with lung cancer is necessary.

Factores de riesgo asociados a la sobrecarga en cuidadores informales de adultos mayores postrados

Introducción: El envejecimiento de la población es uno de los más importantes fenómenos del siglo XXI. Cada día se hacen más necesarias las investigaciones respecto a este tema. Objetivo: Determinar los factores de riesgo asociados a la sobrecarga en cuidadores informales de adultos mayores postrados del área de salud de Cacocum, Holguín, en el año 2022. Método: Se realizó un estudio observacional descriptivo transversal, en el municipio Cacocum, Holguín, desde el 5 de julio de 2021 hasta el 29 de agosto de 2022. El universo estuvo constituido por 129 cuidadores de adultos mayores postrados (N꓿129) y la muestra por 106 cuidadores informales (n꓿106), obtenida por muestreo no probabilístico intencional. Para determinar la sobrecarga de los cuidadores se utilizó la escala de Zarit. Las variables estudiadas fueron: edad, sexo, nivel educacional, promedio de horas diarias dedicadas al cuidado del enfermo, vínculo del cuidador con el enfermo y presencia de sobrecarga del cuidador. Resultados: Predominó el grupo de edad de 60-69 años y el sexo femenino. Predominaron los cuidadores con el duodécimo grado y los sobrecargados. Existió un predominio de cuidadores con vínculo familiar y una relación significativa con la sobrecarga. Predominaron los cuidadores que dedicaban 18 horas como promedio al día al cuidado del enfermo y existió un predominio de cuidadores que habían dedicado de 3 a 4 años al cuidado del enfermo, se halló una relación significativa con la sobrecarga. Conclusiones: El vínculo del cuidador con el enfermo en cuanto a relación filial y los años dedicados al cuidado del mismo fueron los factores más asociados con el desarrollo de sobrecarga.

Introduction: Population aging is one of the most important phenomenon of the 21st century. Research on this subject is becoming more and more necessary every day. Objective: To determine the risk factors associated with overload in informal caregivers of prostrate older adults in the health area of Cacocum, Holguín, year 2022. Method: A cross-sectional descriptive observational study was carried out in Cacocum, Holguín, from July 5, 2021 to August 29, 2022. A total of 129 caregivers of prostrate older adults (N꓿129) were selected as the study´s universe and the sample consisted of 106 informal caregivers (n꓿106), obtained by nonprobability purposive sampling. The Zarit Scale was used to determine factors associated with overload in caregivers. Variables studied were as follow: age, sex, educational level, daily hours dedicated to caregiving, relationship between the caregiver and the patient, and the manifestation of overload in caregivers. Results: There was predominance in the age group of 60 to 69 years and female sex. Caregivers with twelfth grade of education and manifestation of overloaded were predominant. There was a predominance of caregivers with family ties and a significant relationship with overload. Predominated caregivers who spent an average of 18 hours per day in the care of the patients and the caregivers who had spent 3 to 4 years in caregiving, a significant relationship with overload was found. Conclusions: The relationship established between the caregivers and patients in terms of filial relationship and the years spent in the care provided to the patient were the factors most associated with the development of overload.

Introdução: O envelhecimento populacional é um dos fenômenos mais importantes do século XXI. A pesquisa sobre esse tema está se tornando cada dia mais necessária. Objetivo: Determinar os fatores de risco associados à sobrecarga em cuidadores informais de idosos acamados na área de saúde de Cacocum, Holguín, no ano de 2022. Método: Estudo observacional descritivo transversal realizado no município de Cacocum, Holguín, de 5 de julho de 2021 a 29 de agosto de 2022. O universo foi constituído por 129 cuidadores de idosos acamados (N꓿129) e a amostra por 106 cuidadores informais (n꓿106), obtida por amostragem intencional não probabilística. Para determinar a sobrecarga dos cuidadores foi utilizada a escala de Zarit. As variáveis estudadas foram: idade, sexo, escolaridade, média de horas diárias dedicadas ao cuidado do paciente, vínculo entre cuidador e paciente e presença de sobrecarga do cuidador. Resultados: Predominou a faixa etária de 60 a 69 anos e o sexo feminino. Houve predominância de cuidadores com ensino médio completo e sobrecarregados. Houve predomínio de cuidadores com vínculo burro familiar e uma relação significativa com sobrecarga. Houve predominância de cuidadores que gastam em média 18 horas por dia cuidando do paciente e predominância de cuidadores que passaram de 3 a 4 anos cuidando do paciente, sendo encontrada relação significativa com a sobrecarga. Conclusões: O vínculo do cuidador com o paciente em termos de relação filial e os anos dedicados ao cuidado do paciente foram os fatores mais associados ao desenvolvimento de sobrecarga.

Cuidar de quem cuida de idosos dependentes: por uma política necessária e urgente / Caring for those who care for dependent older adults: for a necessary and urgent policy

Resumo Apresenta-se e discute-se a situação das cuidadoras e dos cuidadores familiares de idosos dependentes. Ressaltam-se sua dedicação, seus problemas e os encaminhamentos para valorizá-los. Sabe-se que a tarefa de cuidar é eminentemente feminina, invisível, não remunerada, que afeta a sociedade como um todo. Descrevem-se as políticas vigentes em alguns países europeus, no Canadá e nos Estados Unidos a favor das cuidadoras e cuidadores. A maioria dos modelos de suporte existentes apresenta lacunas. Leis e regulações criadas têm sido pouco compreensivas, inorgânicas e a família continua a ser a responsável pelos parentes longevos que perderam autonomia. Em vários desses países, além de outras medidas, a tendência é integrar os cuidados familiares como primeiro patamar da atenção básica em saúde, universalizando o apoio aos cuidadores. Não se pode esquecer que a tendência de manter o idoso dependente em casa é uma aquiescência a seu próprio desejo, embora também oculte a delegação de responsabilidade do Estado às famílias por meio das políticas de deshospitalização e desinstitucionalização. No Brasil, o tema ainda não entrou no radar das políticas públicas, embora seja urgente pelo acelerado aumento da população idosa, em particular, que tem 80 anos e mais.

Abstract The situation of caregivers and family caregivers of dependent older adults is presented and discussed, highlighting their dedication, problems, and possible recommendations to value them. The task of caring is known to be eminently feminine, invisible, unpaid, but affects society as a whole. Policies of some European countries, Canada, and the United States in favor of male and female caregivers are described. However, most existing support models have gaps. The laws and regulations enacted have been poorly comprehensive, inorganic, and the family remains responsible for long-lived relatives who have lost their autonomy. In many countries, besides other measures, the tendency is to integrate the family care as the first PHC level, universalizing support to caregivers. One must not be forgotten that the tendency to keep dependent older adults at home is acquiescence to their desire, but it also hides the delegation of responsibility from the State to families through dehospitalization and deinstitutionalization policies. In Brazil, the issue has not yet entered the public policy radar, although it is urgent because of the accelerated increase of the elderly population, particularly those aged 80 and over.

Bienestar psicológico en cuidadores de pacientes con enfermedad oncológica / Psychological well-being in caregivers of patients with oncological disease

Introducción: La psicología otorga una gran relevancia a los estudios relacionados con el bienestar psicológico y la atención clínica de los cuidadores informales primarios, por constituir un grupo vulnerable a sufrir afectaciones físicas y psicológicas. Objetivo: Caracterizar el bienestar psicológico en cuidadores informales primarios de pacientes con cáncer de cabeza y cuello. Métodos: Se realizó un estudio descriptivo-correlacional, con una metodología mixta. La muestra estuvo conformada por 100 cuidadores informales primarios de pacientes con cáncer de cabeza y cuello, hospitalizados en el Instituto Nacional de Oncología y Radiobiología de La Habana, desde diciembre de 2016 a marzo de 2017, los que cumplieron con los criterios de inclusión. Para la recolección de información se aplicó la entrevista a sujetos tipos y como instrumento la Escala de Bienestar Psicológico para Adultos (BIEPS-A). Se solicitó el consentimiento informado para la participación de los cuidadores. Resultados: Los resultados revelaron bajos niveles de bienestar psicológico, siendo la autonomía la dimensión más deteriorada en los cuidadores del estudio; se evidenció una interacción inversamente proporcional, entre esta dimensión y el vínculo emocional con el paciente. Conclusiones: El bienestar psicológico de los cuidadores disminuye debido a las afectaciones en su salud física y psíquica, por las limitaciones a las que están sujeto en el contexto personal y laboral y por el predominio de estados emocionales negativos. Sus expresiones positivas solo están relacionadas con los motivos que los movilizaron a asumir el rol de cuidador, a la experticia adquirida durante el cuidado y la posibilidad de acompañar al familiar durante la enfermedad y el tratamiento(AU)

Introduction: Psychology gives great importance to the studies related to psychological well-being, and the clinical care of primary informal caregivers, as they constitute a group vulnerable to suffer physical and psychological effects. Objective: To characterize the psychological well-being in primary informal caregivers of patients with head and neck cancer. Methods: A descriptive-correlational study, with a mixed methodology was carried out. The sample consisted of 100 primary informal caregivers of patients with head and neck cancer hospitalized in the National Institute of Oncology and Radiobiology of Havana, from December 2016 to March 2017, who met the inclusion criteria. For the collection of information it was applied the interview with subject types and as instrument the Scale of Psychological well-being for Adults (BIEPS-A). Informed consent was requested for caregiver's participation. Results: The results revealed low levels of psychological well-being, being autonomy the most deteriorated dimension in caregivers of the study and it was evidenced an inversely proportional interaction between this dimension and the emotional bond with the patient. Conclusions: The psychological well-being of carers decreases due to the damages to their physical and mental health caused by the limitations to which they are subject in the personal and work context and due to the predominance of negative emotional states. Their positive expressions are only related to reasons that moved them to assume the role of caregiver, to the expertise gained during the care and to the possibility to accompany their relative during the illness and treatment(AU)

Carga en cuidadores informales primarios de personas adultas con enfermedades neurológicas crónicas / Burden in primary informal caregivers of adults with chronic neurological diseases

RESUMEN Introducción: Aunque el envejecimiento de las poblaciones humanas es un fenómeno universal, en Cuba los cambios demográficos son significativos. El incremento de la esperanza de vida y el desarrollo de enfermedades neurológicas crónicas aumentan el número de cuidadores informales primarios. Objetivos: Caracterizar la carga en cuidadores informales primarios de personas con enfermedades neurológicas crónicas de expresión clínica en el adulto. Método: Se trata de un estudio descriptivo, correlacional, transversal y no experimental, concebido desde una metodología mixta. La muestra quedó conformada por 19 cuidadores informales primarios con una edad aproximada de 46 años, se le aplicaron técnicas como la entrevista inicial de caracterización del cuidador y de la persona a quien cuida, la entrevista semiestructurada y la Escala de carga del cuidador de Zarit. Para el análisis de los resultados se utilizó el análisis de contenido, la triangulación metodológica y la estadística descriptiva e inferencial. Resultados: Se identificó una tendencia a percibir carga en el proceso de cuidado debido a la presencia de estresores como: el validismo disminuido del enfermo; la modificación de la actividad laboral; los años de duración de la enfermedad; las horas diarias dedicadas al cuidado; la multiplicidad de roles paralelos al de cuidador y las múltiples tareas de cuidado. Conclusiones: Se concluye, que los resultados del proceso de cuidado asociados a la carga se expresan como tendencia en: la disminución del tiempo libre de los cuidadores, el deterioro de su salud psíquica, estados emocionales negativos y un aumento de sus responsabilidades, siendo el impacto del cuidado la dimensión más significativa.

ABSTRACT Introduction: Although human population's aging is a global phenomenon, in Cuba the demographic changes are significant. The increase of the life expectancy and the development of chronic neurological diseases rise the number of primary informal caregivers. Objective: The aim of this paper was to characterize the burden in primary informal caregivers of people with chronic neurological diseases that have clinical expression in adults. Methods: Descriptive, correlational, transversal and non-experimental study that was conceived from a mixed methodology. The sample was formed of 19 primary informal caregivers with an average age of 46 years, and some techniques were used with them such as the Initial interview for characterizing the caregiver and the person they care, the semi-structured interview and the Zarit´s Burden Scale. For the analysis of the results, content analysis, methodological triangulation and descriptive and inferential statistics were used. Results: It was possible to identify a trend to perceive burden in the care process due to the presence of stressors such as: the decreased validity of the patient; the modification of work activity; the years of duration of the disease; the daily hours dedicated to care; the multiplicity of roles parallel to that of the caregiver and the multiple tasks of care. Conclusions: The results of the care process linked with the burden are expressed as a trend in: a decrease in the free time of the caregivers; a deterioration of their psychic health; negative mood and an increase of their responsibilities, being the impact of the care the most significant dimension.

Carga del cuidador en cuidadores informales primarios de pacientes con cáncer de cabeza y cuello / Caregiver burden in primary informal caregivers of patients with head and neck cancer

Introducción: El cáncer constituye actualmente en Cuba la segunda causa de muerte para todas las edades y es una enfermedad compleja, cuya connotación psicosocial repercute no solo en el paciente, sino en todos aquellos que conforman su red de apoyo social. Objetivo: caracterizar la carga del cuidador en cuidadores informales primarios de pacientes con cáncer de cabeza y cuello, hospitalizados en el Instituto Nacional de Oncología y Radiobiología de La Habana, desde diciembre de 2016 a marzo de 2017. Material y Métodos: Se realizó un estudio descriptivo-correlacional, desde una metodología mixta, a 100 pacientes que cumplieron con determinados criterios de inclusión. Se aplicó para la recogida de la información una entrevista a sujetos tipos, y el instrumento Cuestionario de Carga del Cuidador de Zarit, y se solicitó el consentimiento informado de los cuidadores para su participación. Resultados: Los resultados revelaron altos niveles de carga del cuidador, siendo la dimensión impacto del cuidado la más afectada y la carga interpersonal la menos dañada. Se demostró que, a menor conocimiento del cuidador sobre la enfermedad del paciente, mayor carga del cuidador y carga interpersonal. Conclusiones: Se obtuvo que el nivel de moderado a severo de la carga de los cuidadores informales primarios del estudio se debió fundamentalmente a las afectaciones en la salud física y psíquica, limitaciones en las áreas personal y laboral, y estados emocionales negativos: ansiedad, preocupación y rasgos depresivos(AU)

Introduction: Cancer in Cuba is currently the second cause of death at all ages for being an extremely complex disease because of the various characteristics in terms of etiology, location, evolution and prognosis. In addition, it has a psychosocial connotation and a negative emotional impact not only for the patient, but also for all those people who are part of a network of social support. Objective: The objective of this research was to characterize the caregiver burden in primary caregivers of patients with head and neck cancer, hospitalized at the National Institute of Oncology and Radiobiology from December 2016 to March 2017. Materials and methods: A mixed methodology descriptive-correlational study was carried out on 100 patients who met certain inclusion criteria. An interview for the collection of the information and the Zarit Caregiver Burden Scale were applied to subject types. Informed consent of the caregivers was obtained for their participation in the study. Results: The results revealed high levels of caregiver burden. The most affected dimension was the impact of care whereas the interpersonal burden was the least damaged dimension. It was demonstrated that, to a lesser knowledge of the caregiver about the patient's illness, greater caregiver burden and interpersonal burden. Conclusions: It was concluded that the moderate to severe level of the burden of the primary informal caregivers of the study was mainly due to the affectations in the physical and mental health, the limitations in the personal and work areas, and the existence of negative emotional states: anxiety, worry, and depressive traits(AU)

Grupos de Ajuda Mútua para Cuidadores Informais de pessoas com demência: no sentido de um helping ethos comunitário / Support Groups for Informal Caregivers of people with dementia: towards a communitarian helping ethos

Resumo No âmbito das intervenções comunitárias que são promovidas conjuntamente por entidades da área da saúde e do social, as intervenções grupais desenvolvidas para cuidadores informais de pessoas com demência têm se instituído como um importante tópico de investigação e objeto de reflexão profissional. O presente estudo tem como objetivo expor o funcionamento de um conjunto de Grupos de Ajuda Mútua (GAM) enquanto respostas de continuidade no apoio a cuidadores informais de pessoas com demência que participam em Programas Psicoeducativos. Partindo de um Projeto de Intervenção Comunitária realizado na zona Norte de Portugal (Projeto Cuidar de Quem Cuida), o estudo descreve cinco GAMs ocorridos em municípios diferentes e implementados/dinamizados por agentes de desenvolvimento local. São apresentados os seus objetivos e principais características de funcionamento enquanto resposta de continuidade. Os resultados revelam a sua importância para os cuidadores, nomeadamente para a dinamização/ manutenção de redes de apoio social informal no âmbito das escassas respostas especificamente destinadas para esta população, bem como para o papel fundamental dos seus agentes dinamizadores (técnicos de saúde e/ou da ação social). Conclui-se pela relevância dos GAMs enquanto iniciativa comunitária de entreajuda e de suporte ativo e continuado para cuidadores informais de idosos com demência.

Abstract Within community interventions that involve entities from both the health and the social sectors, group interventions for informal caregivers of individuals with dementia have received increased attention and are both a contemporary research topic and a subject of professional reflection. This study reports a set of distinct Support Groups for Informal Caregivers that were implemented after the caregivers' participation in a psychoeducational program. Based upon a community intervention project implemented in North Portugal (Caring for the Caregiver Project), the study describes five support groups established in five different municipalities and assumed by local agents from the health and/or social sectors. It focuses on each group's main objectives and functioning characteristics as a continuity response that was organized at a broad community level. Main findings stress the importance of these support groups on maintaining the caregivers' informal social network and mutual support system within a context of reduced services explicitly targeted for this population, and to the need of having a professional who assumes the role of organizing the sessions. Authors conclude on the relevance of support groups as a continuous and lively community intervention targeted at helping family carers of people with dementia.

Sobrecarga en cuidadores informales de pacientes con Alzheimer y la relación con su ingreso salarial / Burden in caregivers of Alzheimer's disease patients, and its relation with their incomes

Resumen La sobrecarga es el resultado psicológico de combinaciones emocionales, físicas y sociales que surge al cuidar una persona enferma, especialmente si es de Alzheimer. El ingreso salarial puede repercutir en la sobrecarga, ya que hacerse responsable de un paciente genera gastos que la familia debe soportar. Este estudio correlaciona sobrecarga e ingreso salarial en una muestra por conveniencia de 100 cuidadores informales de la ciudad de Bucaramanga, aplicando la escala de sobrecarga Zarit (Martín, Salvadó, Nadal, Miji, Rico, Sanz & Taussing, 1996) y la ficha de datos sociodemográficos (Cerquera, Granados & Buitrago, 2012). Los resultados muestran que si bien la mayoría de cuidadores devengan más del salario mínimo colombiano vigente, así mismo presentan sobrecarga, y ya que no se ha establecido correlación, esto indica que el ingreso económico no es un determinante para la situación anotada.

Abstract Burden is the psychological result of emotional, physical and social combinations that come from looking after a sick person, especially if it's Alzheimer's. Wage income can affect overload, taking care of a patient generates expenses that the family must endure. This study correlates overhead and salary income in a convenience sample of 100 caregivers from Bucaramanga, using the Zarit Burden Interview (Martin et al., 1996) and Sociodemographic Data Sheet (Cerquera et al., 2012). The results show that most caregivers earn more than the Colombian minimum wage and are overloaded, not establishing correlations, indicating that wage income is not determining for overload.

Necesidades y sobrecarga en cuidadores primarios informales de pacientes con traumatismo craneoencefálico / Needs and overload on primary informal caregivers burden of patients with head injury

El objetivo de esta investigación fue conocer la relación entre la sobrecarga y las necesidades de los cuidadores primarios informales de pacientes que sufrieron traumatismo craneoencefálico. En una muestra no probabilística se aplicaron dos instrumentos a 64 cuidadores primarios que miden las necesidades (cuestionario de necesidades familiares) y sobrecarga (entrevista de sobrecarga del cuidador de Zarit), bajo un diseño transversal correlacional. Los resultados no mostraron diferencias significativas entre las categorías de las variables sociodemográficas, perosí presentaron relevancia práctica en las variables de sobrecarga, importancia de necesidades y satisfacción de necesidades. Estos resultados parecen sugerir la posibilidad de guiar estrategias de intervención hacia la satisfacción de necesidades de soporte emocional e instrumental con el objetivo de disminuir la sobrecarga en el cuidador primario informal y favorecer la calidad de vida; no obstante, es importante validar estos resultados en muestras de mayor tamaño que permitan generalizar los hallazgos.

The objective of this research was to determine the relationship between the overload and the needs of primary informal caregivers of patients suffering from a traumatic brain injury. In a non-probability sample, two instruments were applied to 64 primary caregivers measuring needs (family needs questionnaire) and overload (interview Zarit caregiver's burden), under a correlational cross-sectional design.The results showed no significant differences between categories of socio demographic variables, but had considerable practical relevance in relation to the variables of overload, importance of needs and satisfaction needs. These results seem to suggest the possibility of guiding intervention strategies towards meeting needs of emotional and instrumental support in order to reduce the burden on informal primary caregiver and promote the quality of life, however, it is important to validate these findings in larger samples that discard the possible influence of chance.

Cuidadoras informais de Portugal: vivências do cuidar de idosos / Informal caregivers in Portugal: experiences of caring for elderly

O cuidador informal surge da necessidade de se cuidar dos doentes e idosos no domicílio, com a função de auxiliar nas medicações, higiene e alimentação sem remuneração. Esse tipo de auxílio suscita sobrecarga física, psicológica e financeira. No âmbito da qualidade do cuidar, salienta-se a necessidade de se olhar e ajudar os cuidadores informais no árduo apoio aos seus doentes, que, na maioria, são idosos. O objetivo deste artigo é apresentar as percepções vivenciadas pelas cuidadoras informais, bem como o reconhecimento, por elas próprias, das sobrecargas que as afetam holisticamente - emocionais, físicas, financeiras -, e a importância de desenvolver estratégias de coping na formação sobre como melhor cuidar. As entrevistadas residem nas regiões Norte e Centro de Portugal e responderam ao inquérito adaptado do The Zarit Burden Interview. As entrevistas foram analisadas com o apoio do software NVivo 8. Os dados obtidos indicam que as cuidadoras informais enfrentam mais sobrecargas físicas e emocionais do que financeiras. No entanto, salientaram que, apesar das dificuldades, gostam de cuidar dos seus familiares. Quanto a serem convidadas para participarem de formações sobre como melhor cuidar, algumas confirmaram o interesse. Verificase que as cuidadoras informais são carentes de uma formação que as capacite a melhor cuidar prevenindo consequências danosas.

The informal caregiver arises from the need to care for sick and elderly in their homes with the task of assisting with medications, hygiene and food without payment. This kind of aid raises overhead in physical, psychological and financial. From the quality of care emphasizes the need to look at and assist caregivers in helping hard their patients, which most are elderly. The aim is to present the perceptions experienced by informal caregivers, as well as recognition of the same burdens that affect them holistically: emotional, physical, financial and the importance of developing coping strategies through training on how to better care. The interviewed in the research belong to the North and Central Portugal, answer to the survey adapted from The Zarit Burden Interview. The interviews were analyzed with the support of NVivo 8 software. The data indicate that informal caregivers face more types of physical and emotional than financial burden. However, they stressed that despite the difficulties like taking care of their families. About being invited to participate in training on how to best care, some have confirmed their interest. We found that informal caregivers are lacking of an education that enables them to better care for preventing unsafe consequences.

Sobrecarga, afrontamiento y salud en cuidadoras de pacientes con demencia tipo Alzheimer / Chronic stress, coping and health in caregivers of Alzheimer´s disease patients

El presente estudio relacionó las variables sobrecarga del cuidador y los estilos de afrontamiento con la salud general percibida en 300 cuidadoras de personas con demencia tipo Alzheimer en estadio II, divididas en 220 cuidadoras informales y 80 cuidadoras formales no profesionales, evaluadas en la sede nacional de la Fundación Alzheimer de Venezuela, ubicada en la ciudad de Caracas - Venezuela. Entre los resultados más relevantes destaca que las cuidadoras informales presentan mayores niveles de sobrecarga, en comparación con las cuidadoras formales no profesionales. Esto se asoció a un mayor compromiso en la salud percibida de aquellas, que específicamente presentaron mayores síntomas somáticos y de ansiedad. En cuanto a los estilos de afrontamiento, se encontró que las cuidadoras informales usan significativamente más afrontamiento emocional y menos afrontamiento racional y por desapego, que las cuidadoras formales no profesionales, lo que lleva a comprometer más la salud de las primeras. Finalmente, los indicadores de salud están directamente relacionados con mayor sobrecarga, de tal forma que a mayor sobrecarga, mayor deterioro, lo que se observa con mayor magnitud en las cuidadoras informales.

The present study related the caregivers chronic stress and the coping styles with the perceived general health of 300 caregivers of type II Alzheimer´s patients, divided in 220 informal caregivers and 80 non professionals formal caregivers, evaluated at the National centre of the Venezuelan Alzheimer Fundation, in Caracas-Venezuela. Among the most relevant results it was found that the informal caregivers presented higher levels of chronic stress, compared with the non professionals formal caregivers, and this was related with a deterioration of the health status of formers, who specifically presented higher symptons of somatization and anxiety. Regarding the coping styles, it was found that the informal caregivers use significally more emotional coping and less rational and detachment coping than teh non professionals formal caregivers. Finally, the health indexes are directly related with higher chronic stress, so higher stress is related with higher deterioration and this is particularly true in informal caregivers.

Informal Caregivers and Their Coping Styles: A Preliminary Report

There is a strong correlation between stress and the quality of care provided by informal carers. In this regard, an accurate understanding about factors contributing to stress among informal carers is crucial in order to find appropriate interventions to solve their problems. A pilot study was conducted in October 2009 in the Klang Valley area, to test the instrument liability in the local context. In-depth interviews were conducted with two informal caregivers who are providing full-time care for their chronically-ill family members. Informal caregivers face multiple types of stress. A variety of factors such as financial problems, an unsupportive community, fatigue, the unavailability of social services to assist them and their inability to accept the fact that their loved ones are terminally ill, contribute to their stress. Differences in factors contribute to stress, and lead to the adoption of different styles of coping strategies: emotion and problem focused coping.

Cuidadoras informais: representações sobre o cuidado de filhos adultos, soropositivos ao HIV / Informal carevivers: conceptions about the HIV- seropositive adult children care

Introdução: as estratégias de atenção em saúde vêm passando por constantes reformulações no que se refere ao atendimento de pessoas soropositivas ao HIV, devido às mudanças no perfil epidemiológico, aos avanços no tratamento e às consequentes necessidades psicossociais que emergem de novas práticas de cuidado. Objetivo: investigar as concepções que cuidadoras de filhos adultos soropositivos elaboram acerca da doença e das possibilidades de seu enfrentamento. Métodos: entrevistas individuais e semi estruturadas investigaram, em profundidade, a experiência de quatro mães no cuidado doméstico.Os conteúdos das entrevistas foram analisados e organizados em categorias temáticas. Resultados: a síntese dos conteúdos possibilitou a compreensão dossentidos atribuídos por estas mães aos efeitos da sobrecarga física e emocional exigida pelo cuidado, além de sinalizarem a importância da rede de apoio familiar ou profissional e, ainda, a valorização do tempo de conhecimento sobre o diagnóstico para o acolhimento das necessidades de cuidado. Concepções sobre o enfrentamento dos riscos e do medo de contaminação no ambiente doméstico também foram identificadas. Conclusão: o conjunto de resultados subsidia a discussão sobre as possibilidades de ampliação da atenção às pessoas soropositivas ao HIV, na perspectiva de inclusão de suas famílias nos processos de cuidado e para a promoção de uma atenção efetivamente integral no campo da saúde.

Introduction: the health care strategies have been going through constant reformulations regarding the attendance of HIV- seropositive people, due tochanges in the epidemiological profile, the advances in treatment and consequent psychosocial needs that emerge from new care practices. Objective:considering the informal caregivers participation in the HIV-seropositive people care in the domestic context, the purpose of this study was to investigatethe conceptions that seropositive adult children caregivers develop about the disease and the coping possibilities. Methods: individual and semi-structuredinterviews investigated, in depth, the four mothers experience in the home care. The interviews contents were analyzed and organized into thematic categories. Results: the contents summary allowed the understanding of meanings attributed by these mothers to the effects of physical and emotionalburden required for the care, besides signal the importance of the family and professional support network and also the recognition of knowledge time about the diagnosis for the receptiveness of care needs. Conceptions about the coping with contamination risks and fear in the home environment werealso identifi ed. Conclusion: the results set supports the discussion about expanding possibilities of HIV- seropositive people care, in view of their families inclusion in the care processes and an effective integral care promotion in the health .