Violência doméstica e sofrimento ético-político: redes de cuidados informais de usuárias do centro de atenção psicossocial e do centro de referência em assistência social no contexto brasileiro / Violencia intrafamiliar y apoyo ético-político: redes de atención informal de usuarios del centro de atención psicosocial y del centro de referencia de atención social en el contexto brasileño / Domestic Violence and Ethical-Political Support: Informal Care Networks of Users of the Psychosocial Care Center and the Social Care Referral Center in the Brazilian Context

O presente estudo objetivou identificar e discutir as redes de cuidados informais de mulheres em situação de violência doméstica, e que são usuárias de serviços de atenção especializada em saúde mental e assistência social de uma cidade do interior do Nordeste. A perspectiva teórico-metodológica adotada foi a Análise Institucional, com ênfase na pesquisa-intervenção, que permite visualizar as forças que tendem à reprodução (instituí-do), e as que tendem à transformação de determinado fenômeno (instituinte). Para tanto, foram realizadas, ao todo, seis rodas de conversa com os profissionais dos serviços acerca da temática da violência doméstica, e entrevistas com quatro mulheres escolhidas nas rodas de conversas. Além disso, outros instrumentos utilizados neste estudo foram o diário de pesquisa, os ecomapas e os prontuários dos serviços. Dessa maneira, a análise dos dados permitiu identificar três analisadores acerca do que tem permanecido e o que tem se transformado nas redes informais de cuidado de mulheres em situação de violência doméstica. O primeiro analisador se refere à configuração da rede informal das mulheres a partir da violência doméstica; o segundo consiste na relação entre a rede formal e informal; e o terceiro, nas redes quentes e vivas possivelmente construídas com a con-tribuição do processo de pesquisa. Destaca-se, ainda, o importante papel da rede informal como dispositivo de cuidado às mulheres em situação de violência doméstica e sofrimento ético-político, na medida em que se apre-senta como rede capaz de contribuir na participação e autonomia das usuárias no cuidado em saúde

Este estudio tuvo como objetivo identificar y discutir las redes de atención informal de mujeres en situación de violencia intrafamiliar, usuarias de servicios de atención especializada en salud mental y asistencia social en una ciudad del interior del nordeste de Brasil. La perspectiva teórico-metodológica adoptada fue el análisis institucional, con énfasis en la investigación intervencionista, que permite visualizar las fuerzas que tienden a la reproducción (establecidas) y las que tienden a transformar un fenómeno dado (instituyendo). Para ello, se realizaron un total de seis círculos de conversación sobre la violencia intrafamiliar con profesionales del servicio, y se realizaron entrevistas a cuatro mujeres elegidas en los círculos de conversación. Además, otros instrumentos utilizados en este estudio fueron el diario de investigación, los ecomapas y los registros de los servicios. Así, el análisis de los datos permitió identificar tres analizadores sobre lo que quedó y lo que se transformó en las redes informales de atención a mujeres en situación de violencia intrafamiliar. El primer analizador se refiere a la configuración de la red informal de mujeres basada en la violencia doméstica; el segundo consiste en la relación entre la red formal e informal; y el tercero, en las redes cálidas y vivas posiblemente construidas con el aporte del proceso de investigación. También se destaca el importante papel de la red informal como dispositivo de atención a las mujeres en situaciones de violencia intrafamiliar y sufrimiento ético-político, ya que se presenta como una red capaz de contribuir a la participación y autonomía de las usuarias en la atención de la salud

This study aimed to identify and discuss the informal care networks of women in situations of domestic vio-lence who are users of mental health and social assis-tance specialized care services in a city of the interior of Northeast Brazil. The theoretical and methodological perspectives adopted were the institutional analysis with an emphasis on intervention-research, which allowed to visualize the forces that tend to the reproduction (instituted) and those that tend to transform a certain phenomenon (instituting). To this end, six meetings were carried out with the professionals of the domestic violence services, plus interviews with four women from the meetings. Also, other instruments used in this study were the research diary, ecomaps, and medical records of the services. Thus, the data analysis allowed to iden-tify three analyzers about what has remained and what has been transformed in the informal networks of care for women in situations of domestic violence. The first analyzer refers to the women's informal network config-uration based on domestic violence. The second consists in the relationship between the formal and informal network, and the third consists in the warm and living networks possibly built with the contribution of the research process. It is also worth noting the important role of the informal network as a care device for women in situations of domestic violence and ethical-political suffering, as it appears as a network capable of con-tributing to the participation and autonomy of users within healthcare

A interação comportamental entre idosos e seus cuidadores informais sob a óptica da dependência comportamental aprendida / Behavioral

Objetivo: Descrever padrões comportamentais de interação entre idosos e cuidadores informais segundo o nível clínico funcional do idoso. Método: Estudo transversal do tipo descritivo-exploratório realizado por meio de uma observação sistemática para se verificar comportamentos emitidos por idosos e seus cuidadores informais durante a interação da atividade de alimentação do idoso. Resultados: Os dados obtidos mostraram alta frequência de comportamentos de dependência em idosos, como solicitação de apoio e passividade durante a atividade observada. Além disso, cuidadores informais responderam imediatamente à solicitação de apoio e negligenciaram comportamentos de independência emitidos pelos idosos. Conclusão: Verificou-se comportamentos que reforçam a dependência em idosos e a necessidade de orientação dos cuidadores informais.(AU)

Objective: To describe behavioral patterns of interaction between the elderly and formal caregivers according to the functional profile of the elderly. Method: A descriptive-exploratory cross-sectional study carried out through a systematic observation in order to verify behaviors of the elderly and their informal caregivers in the interaction established during the feeding activity of the elderly. Results: The data obtained showed a high frequency of dependency patterns in the elderly, such as a request for support and passivity during the observed activity. In addition, informal caregivers neglected independence behaviors emitted by the elderly and responded immediately to the request for support. Discussion: Behaviors that reinforce dependency in the elderly and the need to provide guidance to informal caregivers have been verified.(AU)

Evaluación de programa de intervención psicosocial para cuidadoras de niños y jóvenes con discapacidad severa: ensayo clínico aleatorizado / Assessment of a psychosocial intervention on caregivers of children and teenagers with severe disabilities: a randomized clinical trial

INTRODUCCIÓN: El cuidado de un familiar dependiente implica un alto riesgo para el cuidador quien se ve propenso a padecer diversas alteraciones. Institutos Teletón a partir del año 2017 implementó el programa Cuidar Cuidándote, que trabaja con cuidadoras de personas dependientes, a través de un acompañamiento domiciliario en actividades de promoción del autocuidado, actividades de respiro y vinculación con la comunidad. OBJETIVO: Evaluar la efectividad del programa "Cuidar Cuidándote" del voluntariado Teletón, en la calidad de vida, sobrecarga y apoyo social de las cuidadoras de niños, niñas y jóvenes en situación de discapacidad con compromiso funcional severo, durante los años 2017 y 2018. METODOLOGÍA: Estudio experimental aleatorizado simple ciego de evaluación de intervención psicosocial en 25 cuidadoras de niños, niñas y adolescentes con discapacidad severa del Instituto Teletón Santiago. Se trabajó en dos grupos, el grupo experimental participó del programa Cuidar Cuidándote recibiendo 13 visitas domiciliarias, y el grupo control no participó del programa, quedando en lista de espera. Para la evaluación de la intervención se realizaron pruebas de calidad de vida, sobrecarga del cuidador y apoyo social percibido antes y después de la intervención. RESULTADOS: Se observó una disminución estadísticamente significativa (promedio de 11,6 puntos en escala de Zarit) en la sobrecarga en cuidadoras de grupo de intervención. No se encontraron diferencias estadísticamente significativas para apoyo social y calidad de vida. CONCLUSIÓN: El programa "Cuidar Cuidándote" logra disminuir el nivel de sobrecarga de las cuidadoras de niños, niñas y adolescentes con discapacidad severa.

INTRODUCTION: Caring for a dependent family member carries a high risk for the caregiver, who is prone to experiencing diverse disorders. In 2017, Teleton introduced the program "Cuidar Cuidándote", which offers in-home services for caregivers assisting dependent family members, providing support in activities to promote self-care, community involvement and respite care. OBJECTIVE: to do an assessment of the effectiveness of "Cuidar Cuidándote" program of Teleton's volunteer team, in terms of quality of life, work overload and social support for caregivers of children and young people with disabilities and severe functional impairment during 2017 and 2018. METHOD: A single-blind randomized experimental study to assess the psychosocial intervention in 25 caregivers of children and teenagers with severe disabilities, users of Instituto Teletón-Santiago. Caregivers were separated in two groups: an experimental group that participated in the "Cuidar Cuidándote" program including 13 home visits, and a control group that received no home visits. the effectiveness of the intervention was measured through different tests, such as quality of life, work overload, and social support as perceived before and after the intervention. RESULTS: A statistically significant reduction in caregiver work overload (average of 11.6 points on the Zarit Scale) was observed in the group of caregivers that received the home visits. No significant differences were observed in terms of social support and quality of life. CONCLUSION: This program achieves a reduction in the level of work overload for caregivers of children and teenagers with severe disabilities.

The impact of informal care on quality of life in the elderly: mediating effects based on frailty and depression / 中国实用护理杂志

Objective@#To investigate the impact of informal care satisfaction on quality of life on the elderly by establishing a structural equation model between them and introducing two mediating variables of frailty and depressive factors.@*Methods@#A total of 210 elderly over 60 years old from 6 communities of 2 urban areas in Qingdao were surveyed by general information questionnaire, the informal care satisfaction scale, frailty phenotype, depression scale and the SF-36 brief health scale.@*Results@#There was a direct effect on quality of life of daily life care dimension in informal nursing satisfaction (β=0.160, P<0.01) and an indirect effect of debilitating as intermediary (β=0.055, P<0.01). There was a direct effect on quality of life (β=0.130, P<0.01) and an indirect effect mediated by depression (β=0.132, P<0.01). There was a direct effect on quality of life (β=0.150, P<0.01) and an indirect effect mediated by debilitating and depression (β=0.147, P<0.01).@*Conclusions@#We should pay more attention to the impact of informal care on the quality of life on the elderly. Taking corresponding measures to promote the use of informal nursing and improving the quality of informal care is of great significance to improve the quality of life of the elderly and promote healthy aging.

The impact of informal care on quality of life in the elderly: mediating effects based on frailty and depression / 中国实用护理杂志

Objective To investigate the impact of informal care satisfaction on quality of life on the elderly by establishing a structural equation model between them and introducing two mediating variables of frailty and depressive factors. Methods A total of 210 elderly over 60 years old from 6 communities of 2 urban areas in Qingdao were surveyed by general information questionnaire, the informal care satisfaction scale, frailty phenotype, depression scale and the SF-36 brief health scale. Results There was a direct effect on quality of life of daily life care dimension in informal nursing satisfaction (β=0.160, P＜0.01) and an indirect effect of debilitating as intermediary (β=0.055, P＜0.01). There was a direct effect on quality of life (β=0.130, P＜0.01) and an indirect effect mediated by depression (β=0.132, P＜0.01). There was a direct effect on quality of life (β=0.150, P＜0.01) and an indirect effect mediated by debilitating and depression (β=0.147, P＜0.01). Conclusions We should pay more attention to the impact of informal care on the quality of life on the elderly. Taking corresponding measures to promote the use of informal nursing and improving the quality of informal care is of great significance to improve the quality of life of the elderly and promote healthy aging.

Sobrecarga, calidad de vida, bienestar en cuidadoras de niños con discapacidad en dos regiones de Colombia / Caregiver burden, quality of life and well-being in caregiver´s child with disabilities in two regions of Colombia

Este estudio se interesó por explorar, a través de un diseño mixto, la relación entre la calidad de vida, el bienestar y la sobrecarga del cuidador. Participaron 87 cuidadoras en el componente cuantitativo diligenciaron la Escala de Sobrecarga de Zarit, La escala de calidad de vida de WHOQOL-BREF y la prueba de Bienestar subjetivo. Se compararon los grupos de regiones (Andina y Caribe) utilizando el estadístico t de student para muestras independientes, debido a que estas variables mostraron normalidad estadística, evidenciando diferencias en bienestar subjetivo (t= -1,79) y en sobrecarga del cuidador (t=0.84). Las diferencias entre las regiones para la calidad de vida se evaluaron con el estadístico U-Mann-Whitney, debido a su distribución asimétrica, encontrando que no hay diferencias en los dominios de la calidad de vida que incluyen: salud física, salud psicológica, relaciones y el entorno. En el componente cualitativo, participaron 43 cuidadoras en grupos focales y se analizaron por análisis temático del discurso. Los resultados cualitativos mostraron poco apoyo familiar, estrés y frustración, dificultades económicas y con las instituciones de salud. Se discuten las dificultades para manejar las emociones y los niveles elevados de sobrecarga, para señalar la relevancia del acompañamiento psicológico.

This study was interested in exploring, through a mixed design, the relationship between the quality of life, well-being and caregiver burden in two regions of Colombia. 87 caregivers participated in the quantitative component respond three scales: Zarit´s burden caregiver Scale, the WHOQOL-BREF quality of life scale and the subjective Wellbeing test. The groups of regions (Andean and Caribean) were compared using the student t- test for independent samples because these variables showed normal distribution. There were significant differences between well-being (t= -1.79) and caregiver burden(t=0.84). The differences between regions in quality of life was measured by U-Mann-Whitney test, due to its asymmetric distribution, finding that there are no differences in the domains of quality of life that include: physical health, psychological health, relationships and the environment. In the qualitative component, 24 caregivers participated in focus groups. The qualitative results were worked through thematic analysis of the discourse. The qualitative results showed that there is little family support in both regions, stress and constant frustration, economic difficulties and with health institutions. The discussion is focus on the difficulties in handling emotions during their daily work and high levels of overload in the studied population are discussed to indicate the relevance of psychological support.

Reliability And Validity Of The Malay Version Of Patient-Caregiver Relationship Questionnaire For Older Adults With Dementia

@#The quality of relationship between a person with dementia and a family caregiver has been identified as one of important factor in informal dementia care. Currently there is no validated questionnaire to measure the dyadic relationship in Malaysia. The aim of present study is to examine the reliability and validity of Quality of the PatientCaregiver Relationship (QCPR) questionnaire in Malay version. A total of 70 patients with mild to moderate dementia and their caregivers were recruited from the psychogeriatric clinic, Universiti Kebangsaan Malaysia Medical Centre using a cross sectional study. The QCPR questionnaire was translated into Malay following the standard guidelines for crosscultural adaptation of measure. The person with dementia and their caregiver completed the QCPR Malay version separately. Internal consistency and test-retest examined for reliability. Construct validity was tested with principal component factor analysis. The reliability of patient QCPR Malay version was good with Cronbach’s alpha coefficients of 0.86 and intraclass correlation coefficients of 0.85. Item 11 was omitted from the caregiver QCPR Malay version due to its poor correlation with the corrected item-total score. The newly formed scale, 13 items caregiver QCPR Malay version, had satisfactory reliability (Cronbach’s alpha 0.89 and intraclass correlation coefficients 0.91). Principal component factor analysis extracted 4 factors for patient version and 3 factors for caregiver version which explained 69.44% (patients’ report) and 61.20% (caregivers’ report) of the total variance of the scale. As a conclusion, both the patient (14 items) and caregiver (13 items) adapted QCPR Malay version is a reliable and valid tool to measure the quality of dyadic relationship between people with mild to moderate dementia and the caregiver.

Índice modificado de esfuerzo en cuidadores informales de personas con Enfermedad de Huntington en los Municipios de Algarrobo, Ariguani y San Angel. Magdalena, Colombia / Modified index of effort of informal caregivers of people with Huntington’ s Disease located in the municipalities of Algarrobo, Ariguani and San Angel. Magdalena, Colombia

Resumen La Enfermedad de Huntington (EH) es una enfermedad genética, crónica con inicio de síntomas en la edad media de la vida. El cuidador es la persona más vulnerable, su bienestar dependerá de la gravedad de los síntomas del enfermo, los apoyos sociales y la percepción sobre el balance entre la carga y los beneficios. Métodos: estudio descriptivo mediante aplicación del índice modificado de esfuerzo del cuidador de 23 cuidadores en los municipios de Algarrobo, Ariguaní y San Angel. Resultados: El 82,6% de los cuidadores eran mujeres, la media de edad fue 32,1 años. El índice modificado de esfuerzo de los cuidadores presentó una media de 9,37 y una mediana de 13; en promedio, el índice de mayor puntuación fue el esfuerzo físico. La distribución del índice de acuerdo al riesgo fue alto para el 39,1%, medio para el 34,8% y bajo para el 26,1%. Discusión: la mayor proporción de cuidadores presentó riesgo considerado alto, dado por la carga del cuidado en la EH.

Abstract Huntington’s disease (HD) is a chronic and genetic disease that starts in middle age. The caregiver is the most vulnerable person, his wellbeing will depend on the severity of the patient’s symptoms, social support and the perception between balance of the burden and the benefits. Methods: A descriptive study was done applying an instrument with social, demographic and modified caregiver strain index variables to 23 caregivers in the municipalities of Algarrobo, Ariguaní and San Angel. Results: 82.6% of caregivers were women, whose mean age was 32.1 years old. The modified index effort of caregivers had an average of 9.37 and a median of 13; in average the highest score index was physical effort. The index distribution according to risk was higher for 39.1%, medium for 34.8%, and low for 26.1%. Discussion: The highest proportion of caregivers had a high risk; this may be because the care burden of HD patients and other chronic diseases involves a multidimensional construct that include epidemiological, economic and social perspective.

Cuidado informal, un reto asumido por la mujer / Informal care challenge assumed by women

La familia constituye la primera institución que genera cuidados en situaciones de dependencia, donde es la mujer la que proporciona cuidados en forma invisible y continua. Este traslado de responsabilidades del cuidado de la salud desde el estado a la familia, es necesario que se visibilice como problemática social, se establezcan políticas con enfoque de género que determinen correcciones de inequidades que proporcionan los estereotipos culturales tradicionales en el trabajo doméstico, al igual que se visibilice la necesidad de una mayor intervención de enfermería como apoyo al cuidado informal. En este artículo se realizó una revisión bibliográfica acerca del cuidado informal, en lo que respecta a la inequidad de género en el cuidado de la salud en Chile. Se observa la feminización en el cuidado informal como un paradigma de desventajas, esfuerzos, sacrificios relativos al género que conllevan a desigualdades innecesarias, evitables e injustas. La necesidad emergente de implementar estrategias desde todos los ámbitos: políticos, sociales, sanitarios y culturales al igual que generar conocimientos para el desarrollo de la ciencia de Enfermería, evidenciando el cuidado informal como una continuación del cuidado en el ámbito privado con contribución económica invisible del sistema de salud. Se proponen conductas de autocuidado en relación al riesgo en la salud de la cuidadora, dada la sobrecarga de cuidar y la importancia para enfermería en cuanto al saber, el ser y el hacer en el cuidado.

The family is the first institution to generate dependency care in situations where it is the woman who provides invisibly and continuous care. This transfer of responsibilities of health care from the state to the family, it is necessary to make visible as social problems, policies are enacted with gender inequities to identify corrections that provide traditional cultural stereotypes in domestic work, as is highlight the need for increased nursing intervention to support informal care. In this paper, we review the literature on informal care in regard to gender inequity in health care in Chile. This enables conclude that there is the feminization of informal care as a paradigm of disadvantages, efforts, sacrifices on the gender inequalities that lead to unnecessary, avoidable and unfair. The emerging need to implement strategies from all aspects: political, social, health and cultural as well as generate knowledge for the development of the Science of Nursing Care showing a continuation of informal care in the private sphere invisible economic contribution of the health system. Self-care behaviors are proposed in relation to risk the health of the caregiver, given the burden of care and the importance for nursing as knowing, being and doing in care.

O papel da família e das redes primárias na reestruturação das políticas sociais / The role of family and primary network in the reform of social policies

A crise do Estado de Bem-Estar Social tem contribuído para a redescoberta da família, das redes primárias e da comunidade como atores fundamentais na efetivação das políticas sociais. A família é cada vez mais objeto de atenção das instituições governamentais e dos cientistas sociais pela grande quantidade de atividades de proteção, ajuda e cuidado que ela desenvolve. Atualmente, há várias propostas de políticas sociais baseadas na concepção de "cuidado comunitário", que objetivam co-responsabilizar a comunidade em relação aos problemas sociais e de saúde. Uma das estratégias é o Programa de Saúde da Família, que visa oferecer serviços de atenção básica às famílias e às comunidades. Observa-se, porém, uma profunda transformação na organização da família, na sua composição e estrutura e sua função. O desenvolvimento de uma política mais efetiva nessa área deve promover um processo de educação continuada dos profissionais, aprofundando sua formação quanto à abordagem familiar e comunitária. Os planejadores de políticas sociais dispõem de várias possibilidades para introduzir novas e criativas iniciativas em nível de comunidade, que oferecem a oportunidade de valorizar o papel do cuidado informal, em particular o cuidado subministrado pelo parentesco, e para integrá-lo às atividades realizadas pelos serviços institucionais.

The crisis of Welfare State has been contributing to rediscover the family, primary networks and communities as fundamental actors to perform social policies. The family, particularly, has attracted more and more attention of governmental institutions and social scientists for its role of protection, help and care. Actually, there are many proposals of social policies based on the conception of "community care", which aim to hold the community co-responsible for social and health problems. The Brazilian Family Health Program is one of these strategies, whose the main objective is to provide basic health care to families and communities. However, constant changes at the organization of the family, basically in its composition, structure and function, make difficult development of effective policies focused on the family participation. In the light of this context, it is important to design adequate strategies to promote a continuing education process for health professionals, which could complement their knowledge in familiar and community approaches. Thus, social policy makers have opportunity to introduce innovative and creative ideas at community level, which could valorize the role of informal care, specially, that delivered by relatives, in order to integrate these activities to them carried out by the institutional care providers.