Rol comunicativo del cuidador en pacientes con accidente cerebrovascular, Sincelejo, Colombia / The communicative role of caregivers assisting stroke patients from Sincelejo, Colombia / Papel comunicativo do cuidador em pacientes com acidente vascular cerebral, Sincelejo, Colômbia

Introducción: Las enfermedades cerebrovasculares son consideradas un problema de salud pública que afectan muchas capacidades en el individuo, entre ellas la comunicación; de esta manera el cuidador cumple un papel fundamental en su recuperación. Objetivo: Describir el rol comunicativo del cuidador en la atención a pacientes con secuelas de accidente cerebrovascular en la ciudad de Sincelejo, Colombia. Materiales y métodos: Paradigma positivista, enfoque cuantitativo y estudio descriptivo de corte transversal realizado con 40 cuidadores, seleccionados según muestreo por criterios y reclutamiento en cadena. Se utilizó una encuesta sociodemográfica, una sobre favorecimiento y bienestar comunicativo y Escala Likert, se realizó análisis de fiabilidad y consistencia interna del instrumento. Resultados: Predominaron cuidadores de sexo femenino, sobresale el cuidador informal, con estudios de secundaria y estrato socioeconómico bajo. Se encontró una actitud favorable en la competencia del ser y saber hacer, prima el buen trato, justicia y respeto. La competencia del saber evidenció actitud desfavorable, caracterizada por un conocimiento limitado frente a la patología, insuficientes destrezas, técnicas y habilidades para cumplir sus funciones y estrategias empleadas. Conclusión: Es necesario cualificar al cuidador en la atención del paciente con accidente cerebrovascular, mediante programas de que dinamicen la competencia del ser, saber y saber hacer

Introduction: Cerebrovascular diseases are a public health problem affecting the different capabilities of patients, including communication. Thus, caregivers play a fundamental role in their recovery. Objective: To describe the communicative role of caregivers in the support of patients with stroke sequelae in the city of Sincelejo, Colombia. Materials and methods: A positivist paradigm, quantitative approach, and descriptive cross-sectional study was carried out with 40 caregivers, who were selected according to criteria sampling and chain recruitment. A sociodemographic survey about favorability and communicative well-being as well as the Likert Scale were applied. A reliability and internal consistency analysis was conducted. Results: The majority of caregivers were women. Informal caregivers, with high school education, and belonging to low socioeconomic status were also predominant. A positive attitude regarding competences such as being and knowing what to do; appropriate treatment of patients, with justice and respect, were observed as common features. The knowledge competence was considered unfavorable, which was characterized by limited understanding regarding pathology, strategies used, and insufficient skills, techniques, and abilities to fulfill their functions. Conclusions: Caregivers of stroke patients should be qualified through programs that improve the being, knowing, and knowing how to do competencies.

Introdução: As doenças cerebrovasculares são consideradas um problema de saúde pública que afeta diversas capacidades do indivíduo, incluindo a comunicação; desta forma, o cuidador desempenha um papel fundamental na sua recuperação. Objetivo: Descrever o papel comunicativo do cuidador no cuidado de pacientes com sequelas de acidente vascular cerebral na cidade de Sincelejo, Colômbia. Materiais e métodos: Paradigma positivista, abordagem quantitativa e estudo transversal descritivo realizado com 40 cuidadores, selecionados segundo critérios de amostragem e recrutamento em cadeia. Foi utilizado um inquérito sociodemográfico, um de favorabilidade e bem-estar comunicativo e uma Escala Likert, foi realizada uma análise da fiabilidade e consistência interna do instrumento. Resultados: Predominaram cuidadores do sexo feminino, destacando-se os cuidadores informais, com escolaridade média e baixo nível socioeconômico. Encontrou-se na competição uma atitude favorável por ser e saber fazer, prevalecendo o bom tratamento, a justiça e o respeito. A competência conhecimento apresentou atitude desfavorável, caracterizada por conhecimento limitado sobre a patologia, habilidades, técnicas e habilidades insuficientes para cumprir suas funções e estratégias utilizadas. Conclusões: É necessário qualificar o cuidador no cuidado ao paciente com AVC, por meio de programas que potencializem a competência de ser, saber e saber fazer.

Relação entre apoio social e sono de pessoas idosas cuidadoras em vulnerabilidade social / Relationship between social support and sleep of elderly caregivers in social vulnerability / Relación entre apoyo social y sueño de adultos mayores cuidadores con vulnerabilidad social

Objetivo: analisar a relação entre apoio social e qualidade do sono de pessoas idosas que cuidam de outros idosos em ambiente de vulnerabilidade social. Método: estudo transversal realizado com 65 cuidadores entrevistados por meio de instrumento de caracterização, Índice de Katz, Escala de Lawton e Brody, Índice de Qualidade do Sono de Pittsburgh e Escala de Apoio Social do Medical Outcomes Study, com dados analisados com testes de comparação e de correlação. Resultados: a maioria eram mulheres, cônjuges do idoso cuidado e possuíam sono de má qualidade. Observou-se correlação fraca e inversa entre má qualidade do sono e a dimensão interação social positiva (Rho=-0,27; p=0,028). Identificou-se relação significativa entre: apoio material e disfunção diurna (p=0,034); apoio afetivo e eficiência do sono (p=0,026); interação social positiva e qualidade subjetiva do sono (p=0,001) e disfunção diurna (p=0,008). Conclusão: Quanto maior a interação social positiva, melhor é a qualidade do sono.

Objective: to analyze the relationship between social support and sleep quality of elderly individuals who care for other elderly individuals in a socially vulnerable environment. Method: a cross-sectional study conducted with 65 caregivers interviewed using a characterization instrument, Katz Index, Lawton and Brody Scale, Pittsburgh Sleep Quality Index, and Medical Outcomes Study Social Support Scale, with data analyzed using comparison and correlation tests. Results: the majority were women, spouses of the elderly being cared for, and had poor sleep quality. A weak and inverse correlation was observed between poor sleep quality and the positive social interaction dimension (Rho=-0.27; p=0.028). Significant relationships were identified between: material support and daytime dysfunction (p=0.034); emotional support and sleep efficiency (p=0.026); positive social interaction and subjective sleep quality (p=0.001), as well as daytime dysfunction (p=0.008). Conclusion: The higher the positive social interaction, the better the sleep quality.

Objetivo: analizar la relación entre el apoyo social y la calidad del sueño de personas mayores que cuidan de otras personas mayores en entornos socialmente vulnerables. Método: estudio transversal realizado con 65 cuidadores entrevistados mediante un instrumento de caracterización, Índice de Katz, Escala de Lawton y Brody, Índice de Calidad del Sueño de Pittsburgh y Escala de Apoyo Social del Medical Outcomes Study, los datos fueron analizados mediante pruebas de comparación y correlación. Resultados: la mayoría eran mujeres, cónyuges del adulto mayor que recibe el cuidado y tenían mala calidad del sueño. Se observó una correlación débil e inversa entre la mala calidad del sueño y la dimensión de interacción social positiva (Rho=-0,27; p=0,028). Se identificó que había relación significativa entre: apoyo material y disfunción diurna (p=0,034); apoyo afectivo y eficiencia del sueño (p=0,026); interacción social positiva y calidad subjetiva del sueño (p=0,001) y disfunción diurna (p=0,008). Conclusión: Cuanto mayor sea la interacción social positiva, mejor será la calidad del sueño.

Práticas de cuidado e necessidades de saúde de homens em atenção domiciliar / Care practices and health needs of men in home care / Prácticas de cuidado y necesidades de salud de los hombres en el cuidado domiciliario

Objetivo: Analisar as práticas de cuidado desenvolvidas para atender às necessidades de saúde de homens em atenção domiciliar. Métodos: Pesquisa observacional e qualitativa, realizada com 34 cuidadores e 24 homens assistidos pelo serviço de atenção domiciliar do município de João Pessoa. A coleta de dados foi realizada por meio de um roteiro com variáveis sociodemográficas e perguntas abertas. A Análise Crítica do Discurso foi utilizada como método de análise, com destaque para os significados representacional e identificacional dos discursos. Resultados: As práticas de cuidado e necessidades de saúde foram apontadas com base na relação hegemônica entre os atores do cuidado, associação do cuidado ao processo de trabalho informal, atuação da família, da atividade corresponsabilizada, e prática da autonomia e autocuidado. Conclusão: Evidenciou-se um cuidado multifacetado e executado por diversos atores com suporte de equipes multiprofissionais de atenção domiciliar. (AU)

Objective: To analyze the care practices developed to meet the health needs of men in home care. Methods: Observational and qualitative research, carried out with 34 caregivers and 24 men assisted by the home care service in the city of João Pessoa. Data collection was performed through a script with sociodemographic variables and open questions. Critical Discourse Analysis was used as a method of analysis, with emphasis on the representational and identificational meanings of the discourses. The research was approved according to the opinion number 1.829.326. Results: Care practices and health needs were identified based on the hegemonic relationship between the care actors, association of care with the informal work process, family activities and co-responsibility activities, and the practice of autonomy and self-care. Conclusion: There was evidence of a multifaceted care performed by different subjects with the support of multidisciplinary home care teams. (AU)

Objetivo: Analizar las prácticas asistenciales desarrolladas para satisfacer las necesidades de salud de los hombres en la atención domiciliaria. Métodos: Investigación observacional y cualitativa, realizada con 34 cuidadores y 24 hombres asistidos por el servicio de atención domiciliaria en la ciudad de João Pessoa. La recolección de datos se realizó mediante un guión con variables sociodemográficas y preguntas abiertas. Se utilizó el Análisis Crítico del Discurso como método de análisis, con énfasis en los significados representativos e identificativos de los discursos. La investigación fue aprobada de acuerdo al dictamen número 1.829.326. Resultados: Se identificaron prácticas de cuidado y necesidades de salud a partir de la relación hegemónica entre los actores del cuidado, la asociación del cuidado con el proceso de trabajo informal, las actividades familiares y de corresponsabilidad, y la práctica de la autonomía y el autocuidado. Conclusión: Se evidenció una atención multifacética realizada por diferentes sujetos con el apoyo de equipos multidisciplinares de atención domiciliaria. (AU)

The mental health and traumatic experiences of mothers of children with 22q11DS.

Background: 22q11 Deletion Syndrome (22q11DS) is the most common microdeletion syndrome with broad phenotypic variability, leading to significant morbidity and some mortality. The varied health problems associated with 22q11DS and the evolving phenotype (both medical and developmental/behavioural) across the lifespan can strongly impact the mental health of patients as well as their caregivers. Like caregivers of children with other chronic diseases, caregivers of children with 22q11DS may experience an increased risk of traumatisation and mental health symptoms.Objective: The study's primary objective was to assess the frequency of traumatic experiences and mental health symptoms among mothers of children with 22q11DS. The secondary objective was to compare their traumatic experiences to those of mothers of children with other neurodevelopmental disorders (NDDs).Method: A total of 71 mothers of children diagnosed with 22q11DS completed an online survey about their mental health symptoms and traumatic experiences. Descriptive statistics were used to summarise the prevalence of their mental health symptoms and traumatic experiences. Logistic regression models were run to compare the traumatic experiences of mothers of children with 22q11DS to those of 335 mothers of children with other neurodevelopmental disorders (NDDs).Results: Many mothers of children with 22q11DS experienced clinically significant mental health symptoms, including depression (39%), anxiety (25%), and post-traumatic stress disorder (PTSD) symptoms (30%). The types of traumatic events experienced by mothers of children with 22q11DS differed from those of mothers of children with other NDDs as they were more likely to observe their child undergoing a medical procedure, a life-threatening surgery, or have been with their child in the intensive care unit.Conclusion: 22q11DS caregivers are likely to require mental health support and trauma-informed care, tailored to the specific needs of this population as they experience different kinds of traumatic events compared to caregivers of children with other NDDS.

Mothers of children with 22q11DS experience clinically significant levels of depression, anxiety, and PTSD.Mothers of children with 22q11DS experience many and diverse trauma particularly related to medical interventions of their child.The types of traumatic events experienced by mothers of children with 22q11DS are different from those of the mothers of children with other neurodevelopmental disorders.

Impact of memory bias in the dietary estimation of older adults measured through a food frequency questionnaire and weighed food records: A cross-sectional study in older adults and primary caregivers.

Introduction: Introduction: changes in cognitive performance and memory of older adults (OA) can interfere in their reporting their diet. Objective: to evaluate the impact of memory bias in dietary estimation between OA and their primary caregivers (PC) through the food frequency questionnaire (FFQ) for Mexican OA and weighed food records (WFR). Methods: the present analysis uses the estimated dietary information based on the response provided by 51 older adults (OA) and their primary caregivers (PC) from the validation study of the FFQ for Mexicans OA was conducted during lockdowns for COVID-19. The personnel who applied FFQ and WFR were trained with standardized instruments and procedures. The Wilcoxon test was used to compare the intake per day of the foods and food groups, the Spearman correlation coefficient was used to evaluate the grams of intake per day of the food groups, and kappa coefficient was used to compare the level of food items and food groups between OA and PC. Results: in 11 of 14 food groups, no significant differences were observed between the amounts of intake reported by OA and PC. In the groups of dairy products, fruits, vegetables, and legumes, moderate agreement was observed (κ = 0.63 to 0.79), and in the rest of the groups was strong to perfect (κ ≥ 0.80). Correlation of the amount of intake between OA and PC was high in all food groups (r ≥ 0.87). Conclusion: the high correlation and high agreement between the amounts and frequencies of the food groups consumed as reported by the older adults and primary caregivers indicate that the information from both respondents is reliable.

Introducción: Introducción: los cambios cognitivos y la memoria que presentan los adultos mayores (AM) pueden interferir al momento de reportar los alimentos de su dieta. Objetivo: evaluar el impacto del sesgo de memoria en la estimación de la dieta entre AM y sus cuidadores principales (CP) a través del cuestionario de frecuencia de alimentos (CFA) para AM mexicanos y el registro de peso de alimentos (RPA). Métodos: el presente análisis utiliza la información dietética estimada con base en la respuesta proporcionada por 51 adultos mayores (AM) y sus cuidadores principales (CP) del estudio de validación del CFA para AM mexicanos que se realizó durante el confinamiento por COVID-19. El personal que aplicó CFA y RPA fue capacitado con instrumentos y procedimientos estandarizados. Se utilizó prueba de Wilcoxon para comparar la ingesta por día de los alimentos y grupos de alimentos, el coeficiente de correlación de Spearman para evaluar los gramos de ingesta por día de los grupos de alimentos y el coeficiente kappa para comparar el nivel de alimentos y grupos de alimentos entre AM y CP. Resultados: en 11 de 14 grupos de alimentos no se observaron diferencias significativas entre las cantidades de ingesta reportadas por AM y CP. En los grupos de lácteos, frutas, verduras y legumbres se observó concordancia moderada (κ = 0,63 a 0,79), y en el resto de los grupos fue de fuerte a perfecta (κ ≥ 0,80). La correlación de la cantidad de ingesta entre AM y CP fue alta en todos los grupos de alimentos (r ≥ 0,87). Conclusión: La alta correlación y la alta concordancia entre las cantidades y frecuencias de los grupos de alimentos consumidos según lo informado por los adultos mayores y los cuidadores principales indican que la información de ambos encuestados es confiable.

Revisión Sistemática Sobre el Funcionamiento Familiar en Familias con un Hijo con una Enfermedad Poco Frecuente / Systematic Review on Family Functioning in Families of Children With Rare Diseases

El presente estudio es una revisión sistemática de las investigaciones realizadas sobre el funcionamiento familiar en familias con niños con una enfermedad poco frecuente. La búsqueda se realizó en las bases de datos Pubmed, EBSCO y Google Académico, siguiendo los lineamientos PRISMA. Luego de aplicar los criterios de inclusión y exclusión a los artículos 460 encontrados inicialmente, un total de 55 artículos conformaron la muestra final. A partir del análisis de los resultados se establecieron las siguientes temáticas abordadas en relación al funcionameinto familiar: impacto del diagnóstico; función y responsabilidades del cuidador; funcionamiento familiar; impacto en la esfera emocional; efectos en la vida conyugal y social; estrategias de afrontamiento; familia, cuidados y sistema de salud. Los hallazgos de este estudio pueden proporcionar una justificación para considerar los factores asociados al funcionamiento familiar al momento de dar el diagnóstico de una EPOF y pensar un tratamiento.(AU)

The present study is a systematic review of the research on family functioning in families who have a child with a rare disease. The research was carried out using the databases Pubmed, EBSCO, and Google Scholar, following PRISMA guidelines. After applying the inclusion and exclusion criteria to the 460 articles initially found, a total of 55 articles made up the final sample. The following topics regarding family functioning were identified: impact of diagnosis; caregiver’s role and responsibilities; family functioning; impact on the emotional sphere; effects on marital and social life; coping strategies; family, and care and health system. The results of this study may provide justification for considering factors associated with family functioning when diagnosing a rare disease and deciding on treatment.(AU)

Cronicidad: significado construido por los cuidadores y las personas cuidadas / Cronicidade: Significado construído por cuidadores e pessoas cuidadas / Chronicity: Meaning constructed by caregivers and people cared

Introducción: Las enfermedades crónicas no transmisiblesvan en aumento, ocasionando discapacidad y dependenciaen quien la padece, así como la necesidad de un cuidador.La cronicidad es un concepto que se ha analizado desde lamirada de la persona que la padece, dejando un vacío en lacomprensión del significado para el cuidador.Objetivo: Comprender el significado de la cronicidad paralas personas con Enfermedades crónicas no transmisiblesy sus cuidadores informales.Materiales y métodos: Investigación cualitativa fenomenológica-hermenéutica según la propuesta de Van Manen, muestreocasual orientado por criterio, participaron 10 personasenfermas y 9 cuidadores. Los criterios de rigor de credibilidad yconfirmabilidad, confiabilidad y la transferibilidad, garantizaronla calidad del estudio.Resultados: emergieron los siguientes temas: brindar y recibircuidado como un acto de amor; unión de la familia; enfrentarsea la dureza; recibir, brindar y buscar apoyo; estar pendiente;cambio de vida; proceso de aprendizaje; una compañía paratoda la vida; imponer restricciones, limitaciones y pérdidas.Conclusiones: el significado de la cronicidad para loscuidadores y las personas enfermas es complejo, dinámicoy multidimensional; por lo tanto, es necesario realizarintervenciones que ayuden a mitigar el impacto que estaproduce en la vida de este binomio.(AU)

Introduction: Noncommunicable chronic diseasesare rising, causing disability and dependence in theones who suffer from them, as well as the necessityof a caregiver. Chronicity is a concept which has beenanalyzed from the perspective of the ill, leaving a voidin the comprehension of the meaning for the caregiver.Aim: To understand the meaning of chronicity forpeople with non transmissible chronic diseases andtheir informal caregivers.Materials and methods: Qualitative phenomenological-hermeneutic investigation according to the Van Manenproposal, casual sampling orientated by criteria withthe participation of 10 sick people and 9 caregivers.The rigor criteria of credibility and confirmability,reliability, and transferability guaranteed the qualityof the study.Results: The next topics emerged: to offer and receivecare as a love act, family union, facing the hardness,receiving, giving, and looking support, being aware,change of life, learning process, a company for wholelife, imposing restrictions, limitations, and loss.Conclusions: The meaning of chronicity for caregivers andsick people is complex, dynamic, and multidimensionalwhich is why it is important to realize interventionsthat help mitigate the impact in the life of the binomial.(AU)

Introdução: As doenças crônicas não transmissíveisestão aumentando, causando incapacidade e dependênciaem quem as sofre, bem como a necessidade de umcuidador. A cronicidade é um conceito que vem sendoanalisado na perspetiva da pessoa que a sofre, deixandouma lacuna na compreensão de seu significado parao cuidador.Objetivo: compreender o significado da cronicidadepara pessoas com doenças crônicas não transmissíveise seus cuidadores informais.Materiais e métodos: Pesquisa qualitativa fenomenológico-hermenêutica segundo a proposta de Van Manen,amostragem casual orientada por critérios, participaram10 doentes e 9 cuidadores. Os rigorosos critérios decredibilidade e confirmabilidade, confiabilidade etransferibilidade garantiram a qualidade do estudo.Resultados: emergiram os seguintes temas: dar ereceber cuidado como ato de amor; união familiar;enfrentar aspereza; receber, fornecer e buscar apoio;estar pendente; mudança de vida; processo deaprendizagem; uma empresa para a vida; imponharestrições, limitações e perdas.Conclusões: o significado da cronicidade paracuidadores e pessoas doentes é complexo, dinâmicoe multidimensional; portanto, é necessário realizarintervenções que ajudem a mitigar o impacto queisso produz na vida desse binômio.(AU)

Cambio cultural en cuidadores indígenas. Bases etnográficas para la enfermería transcultural / Mudança cultural nos cuidadores indígenas. Bases etnográficas para enfermagem transcultural / Cultural change in the indigenous caregivers. Ethnographical bases for transcultural nursing

Este estudio tiene como objetivo comprender las prácticas delos cuidadores indígenas en contexto de cambio cultural. Partede la idea de la necesidad de construir bases etnográficas quesirvan de insumos para la implementación de los enfoquesde salud intercultural y enfermería transcultural, así comoparte de la evidencia que facilite las prácticas de salud, a partirde descripciones competentes que ayuden a comprender ladiversidad cultural de las poblaciones humanas. El abordajemetodológico se realizó desde la investigación cualitativa,con enfoque etnográfico, combinando revisión documental yentrevistas semiestructuradas a 44 personas. Se identificaroncódigos, agrupados en subcategorías y categorías. Se encontraronvarios tipos de cuidadores, de los cuales, se consideraronrelevantes el médico tradicional y la partera. Sus prácticasse basan en saberes de la dimensión material y espiritual,entre las que se destaca el uso de plantas medicinales,rezo, interpretación de los sueños y ceremonias colectivas.Además, su labor depende del reconocimiento social, estatusdel cuidador y rol en la organización social. Los modelosinterculturales deben tener en cuenta a los cuidadores, enel marco de estrategias basadas en el diálogo de saberes yla participación.(AU)

The objective of this study is to understand the practices ofindigenous caregivers in the context of cultural change. Partof the idea of the need to build ethnographic bases that serve as inputs for the implementation of cross-cultural healthand cross-cultural nursing approaches, as well as part of theevidence that facilitates health practices, based on competentdescriptions that help to understand the cultural diversityof human populations. The methodological approach wascarried out from qualitative research, with an ethnographicapproach, combining documentary review and semi-structuredinterviews with 44 people. Codes were identified, grouped intosubcategories and categories. Several types of caregivers werefound, of which the traditional doctor and the midwife wereconsidered relevant. Their practices are based on knowledgeof the material and spiritual dimension, among which theuse of medicinal plants, prayer, dream interpretation andcollective ceremonies is highlighted. In addition, their workdepends on social recognition, caregiver status and rolein social organization. Intercultural models must considercaregivers, within the framework of strategies based on thedialogue of knowledge and participation.(AU)

Este estudo tem como objetivo compreender as práticas decuidadores indígenas no contexto de mudança cultural. Parteda ideia da necessidade de construir bases etnográficas quesirvam de subsídios para a implementação de abordagensinterculturais de saúde e enfermagem transcultural, bemcomo parte das evidências que facilitem as práticas desaúde, a partir de descrições competentes que ajudem acompreender a diversidade cultural das populações humanas.A abordagem metodológica foi realizada a partir de pesquisaqualitativa, com abordagem etnográfica, combinando revisãodocumental e entrevistas semiestruturadas com 44 pessoas.Os códigos foram identificados, agrupados em subcategoriase categorias. Foram encontrados vários tipos de cuidadores,dos quais o médico tradicional e a parteira foram consideradosrelevantes. Suas práticas são baseadas no conhecimento dadimensão material e espiritual, entre as quais se destacam ouso de plantas medicinais, oração, interpretação de sonhose cerimônias coletivas. Além disso, seu trabalho dependede reconhecimento social, status do cuidador e papel naorganização social. Os modelos interculturais devem levarem consideração os cuidadores, no marco de estratégiasbaseadas no diálogo de conhecimento e participação.(AU)

Cuidando al final de la vida. Un programa de intervención online para familiares de pacientes oncológicos en fase paliativa / Caring the caregivers. An online psychological intervention for family caregivers of oncological palliative patients

Resumen: Objetivo: Analizar la eficacia de un programa de intervención psicológica grupal en formato online diseñado para reducir la sobrecarga y el malestar emocional de los cuidadores informales de pacientes oncológicos en fase final de vida. Método: El programa se desarrolló para cuidadores principales de pacientes oncológicos en situación de enfermedad avanzada, con pronóstico de vida inferior a 6 meses. La intervención consistió en cuatro sesiones semanales. Los instrumentos de evaluación fueron la Escala de Detección de Malestar Emocional del Cuidador Principal y la Escala Zarit Reducida y se aplicaron al inicio y al final del programa. Además, se categorizaron las principales preocupaciones de los cuidadores a través de la Escala de Detección del Malestar del Cuidador Principal. Se utilizaron estadísticos descriptivos y t de Student. Resultados: En el estudio participaron 38 familiares de los cuales el 81,6% eran mujeres. En cuanto el grado de parentesco, el 44,7% eran descendientes del paciente. El malestar emocional se redujo significativamente después de la intervención. La incertidumbre se mantuvo como principal preocupación en ambos momentos de medida. Antes del programa, la segunda preocupación más frecuente fue el sufrimiento por el ser querido enfermo, mientras que después de la intervención fue la preocupación por el sufrimiento de otros miembros de la familia. Conclusiones: La realización de este programa de intervención psicológica grupal online demostró ser efectiva para reducir el malestar emocional en los cuidadores principales de pacientes oncológicos al final de la vida. La incertidumbre fue una preocupación constante a lo largo del programa en los familiares. (AU)

Abstract:Aim: analyze the effectiveness of an online delivered psychological intervention program for oncological palliative caregivers in order to reduce the distress and caregiver burden. Methods: The program was developed for primary caregivers of advanced cancer patients, with a life expectancy of less than 6 months. The intervention consisted of 4 weekly sessions. The assessment instruments were the Caregiver Emotional Distress Detection Scale and the Zarit’s Reduced Scale and were applied at the beginning and end of the program. In addition, the main worries of the caregivers were categorized by the Caregiver Emotional Distress Detection Scale. Descriptive statistics and Student’s t were used. Results: 38 caregivers enrolled in intervention, 81.6% of whom were women. Regarding the degree of kinship, 44.7% were descendants of the patient. The distress was significantly reduced after the intervention. Uncertainty remained the main worry at both moments of measurement. Before the program, the second most frequent worry was the suffering of the patient, while after the intervention it was worries about the suffering of other family members. Conclusions: Carrying out this online group psychological intervention program proved to be effective in reducing emotional distress in the main caregivers of cancer patients at the end of life. Uncertainty was a constant concern throughout the program in the relatives. (AU)

[Tecuide. Telemonitoring of patients with dementia and their caregivers]. / Tecuide. Telemonitorización de pacientes con deterioro cognitivo y sus cuidadores.

INTRODUCTION: Given the growing increase in dementia, the need to control these patients, together with the rise of new technologies, makes a change in the current control system imperative. MATERIAL AND METHOD: We have carried out a single-center, clinical study with two groups, a control group of 72 patients/caregivers, who followed the usual controls in consultations, and another telematic group of 76 patients/caregivers, who followed the controls through of the Tecuide platform. The platform had a survey part to detect problems in patients and caregiver claudication, another training part and another chat for direct communication when the caregiver needed it and also served to respond when a problem was detected. RESULTS: After a year of monitoring with the platform we have obtained: a)in patients, reduce behavioral disorders and use of drugs, increase physical exercise and delay institutionalization (DS not found); b)in caregivers there is an improvement in satisfaction with respect to the control of patients with cognitive impairment, and c)in terms of resources, visits to emergency services and dementia consultations have decreased, although admissions to the psychogeriatric unit have increased. CONCLUSIONS: The use of Tecuide as a telematic tool in the control of patients with cognitive impairment does not seem to be inferior to the usual controls in consultations and improves caregiver satisfaction.

Entrevista motivacional como estrategia de mejoramiento de la salud bucal de niños y cuidadores. Revisión en sombrilla / Motivational interviewing as a strategy to improve the oral health of children and caregivers. Umbrella review

Objetivo: demostrar la efectividad de la entrevista motivacional (EM) en el mejoramiento de algunos indicadores de salud bucal en niños de 0 a 12 años y sus cuidadores. Material y métodos: estudio de revisión en sombrilla (umbrella review). Se realizó búsqueda en bases de datos electrónicas (PubMed, MEDLINE, SCOPUS, EBSCO) y Google Scholar desde el año 2010 hasta el año 2020, con las siguientes palabras clave: ('motivational interviewing' OR 'motivational interview' OR 'motivational interviewing style' OR 'motivational intervention' OR 'motivational counseling' OR 'brief motivational counseling' OR 'maternal counseling' OR 'behavioral intervention') AND (“caries” OR 'dental caries' OR 'tooth decay' OR 'dental decay' OR 'carious lesions' OR 'DMFT index' OR “ICDAS”) AND ('gingival diseases' OR “gingivitis” OR “CPITN” OR 'gingival bleeding' OR 'dental calculus') AND (“children” OR “families” OR “caregivers”). Se incluyeron artículos originales sobre la efectividad de la entrevista motivacional en salud bucal (EMSB) en niños de hasta 12 años y cuidadores, tipo revisión sistemática de la literatura y metanálisis, desde el año 2010 hasta el 2020. Resultados: 69 artículos (2 revisiones sistemáticas y 4 metanálisis). Los indicadores encontrados fueron: cambios en la presentación de caries de la infancia temprana, higiene bucal, condiciones gingivales y frecuencia de visitas a la consulta odontológica, con resultados alentadores y, en otros, contradictorios. Conclusiones: la evidencia sobre la efectividad de la entrevista motivacional en comparación con la educación convencional muestra cambios positivos en indicadores de salud bucal, como mejoramiento de la higiene dental y de la presentación de la caries en la primera infancia. (AU)

Objective: to demonstrate, the effectiveness of motivational interviewing in improving oral health indicators in children aged 0 to 12 years and their caregivers. Material and method: an umbrella review design. Search in electronic databases (PubMed, MEDLINE, SCOPUS, EBSCO) and Google Scholar since 2010 to 2020, with the following keywords: ('Motivational interviewing' OR 'motivational interview' OR 'motivational interviewing style' OR 'motivational intervention' OR 'motivational counseling' OR 'brief motivational counseling' OR 'maternal counseling' OR 'behavioral intervention') AND (“caries” OR 'dental caries' OR 'tooth decay' OR 'dental decay' OR 'carious lesions' OR 'DMFT index' OR “ICDAS”) AND ('gingival diseases' OR “gingivitis” OR “CPITN” OR 'gingival bleeding' OR 'dental calculus') AND (“children” OR “families” OR “caregivers”), original articles on the effectiveness of motivational interviewing in oral health (EMSB) in children between 0 and 12 years of age and caregivers, type systematic review of the literature and metaanalysis. Results: 69 articles were found (2 systematic reviews and 4 metaanalysis). The indicators found: change in early childhood caries, oral hygiene, gingival conditions and frequency of visits to the dental office with promise results and others contradictories. Conclusion: the evidence on the effectiveness of motivational interviewing compared to conventional education shows positive changes in oral health indicators such as improvement in dental hygiene and the presentation of caries in early childhood, among others. (AU)

Family burden after critical illness: the forgotten caregivers / La sobrecarga familiar tras una enfermedad crítica: los cuidadores olvidados

Objective To determine the incidence of primary caregiver burden in a cohort of family members of critically ill patients admitted to ICU and to identify risk factors related to its development in both the patient and the family member. Design Prospective observational cohort study was conducted for 24 months. Setting Hospital Universitario Clínico San Cecilio, Granada. Patients The sample was the primary caregivers of all patients with risk factors for development of PICS (Post-Intensive Care Syndrome). Interventions The follow-up protocol consisted of evaluation 3 months after discharge from the ICU in a specific consultation. Main variables of interest The scales used in patients were Barthel, SF-12, HADS, Pfeiffer, IES-6 and in relatives the Apgar and Zarit. Results A total of 93 patients and caregivers were included in the follow-up. 15 relatives did not complete the follow-up questionnaires and were excluded from the study. The incidence of PICS-F (Family Post Intensive Care Syndrome) defined by the presence of primary caregiver burden in our cohort of patients is 34.6% (n=27), 95% CI 25.0−45.7. The risk factors for the development of caregiver burden are the presence of physical impairment, anxiety or post-traumatic stress in the patient, with no relationship found with the characteristics studied in the family member. Conclusions One out of 3 relatives of patients with risk factors for the development of PICS presents at 3 months caregiver burden. This is related to factors dependent on the patient's state of health. (AU)

Objetivo Determinar la incidencia de la sobrecarga del cuidador principal en una cohorte de familiares de pacientes críticos ingresados en UCI e identificar los factores de riesgo relacionados con su desarrollo tanto en el paciente como en el familiar. Diseño Estudio de cohortes observacional prospectivo durante 24 meses. Ámbito Hospital Universitario Clínico San Cecilio de Granada. Pacientes La muestra estuvo compuesta por los cuidadores principales de todos los pacientes con factores de riesgo para el desarrollo de SPCI (Síndrome Post-Cuidados Intensivos). Intervenciones El protocolo de seguimiento consistió en la evaluación a los 3 meses del alta de la UCI en una consulta específica. Variables de interés principales Las escalas utilizadas fueron Barthel, SF-12, HADS, Pfeiffer, IES-6, Apgar y Zarit. Resultados Un total de 93 pacientes y cuidadores fueron incluidos en el seguimiento. 15 cuidadores no completaron los cuestionarios de seguimiento y fueron excluidos del estudio. La incidencia de PICS-F (Síndrome Post-Cuidados Intensivos Familiar) definido por la presencia de sobrecarga del cuidador en nuestra cohorte es del 34,6% (n=27), IC 95% 25,0–45,7. Los factores de riesgo para el desarrollo del mismo son la presencia de deterioro físico, ansiedad o estrés postraumático en el paciente, no encontrándose relación con las características estudiadas en el familiar. Conclusiones Uno de cada 3 familiares de pacientes con factores de riesgo para el desarrollo de SPCI presenta a los 3 meses sobrecarga del cuidador, relacionándose con factores dependientes del estado de salud del paciente. (AU)

Propiedades Psicométricas de la Escala de afrontamiento en preescolares, versión padres / Psychometric properties of the Coping Scale in preschoolers, parent version

Es importante evaluar el afrontamiento de los preescolares, específicamente de niños mexicanos, para diseñar programas de intervención y promover estrategias de afrontamiento funcionales ante situaciones estresantes, lo cual puede tener implicaciones en su salud mental. El objetivo del estudio fue evaluar las propiedades psicométricas de la Escala de Afrontamiento, versión para preescolares a una versión para cuidadores. Participaron 525 cuidadores en total, el rango de edad de los niños fue de 2 años 9 meses a 6 años (M = 4.4; D.E.= 0.795); el 49.3% fueron niños y el 50.7% niñas. Se trabajó con la Escala de Afrontamiento para Preescolares, versiones padres (EAP-P), la cual, es una escala tipo Likert de 23 preguntas con 4 opciones de respuesta donde 1=nunca, 2 = pocas veces, 3 = muchas veces y 4= siempre. La Escala se aplicó a los cuidadores por medio de la plataforma Survey Monkey. Se realizó el análisis factorial confirmatorio. Los resultados mostraron un ajuste adecuado del modelo a los datos (RMSEA=.05; NFI = .93: TLI = .91 y CFI = .93). La medida de confiabilidad obtenida mediante el coeficiente alfa de Omega fue de .81 para la escala final de 14 reactivos. Se considera que la EAP-P es un instrumento válido y confiable para evaluar el afrontamiento en niños de 3 a 6 años. (AU)

It is important to evaluate the coping of preschoolers, specifically Mexican children, in order to design intervention programs and promote functional coping strategies in stressful situations, which may have implications for their mental health. The aim of the study was to evaluate the psychometric properties of the Coping Scale, preschool version to a version for caregivers. A total of 525 caregivers participated, the age range of the children was 2 years 9 months to 6 years (M = 4.4; and D.E.T = 0.795); 49.3% were boys and 50.7% were girls. We worked with the Coping Scale for Preschoolers, parent version (EAP-P), which is a Likert-type scale of 23 questions with 4 response options where 1 = never, 2 = seldom, 3 = many times and 4 = always. The scale was applied to the caregivers through the Survey Monkey platform. Exploratory and confirmatory factor analysis was performed. The results showed an adequate fit of the model to the data (RMSEA = .05; NFI = .93: TLI = .91 and CFI = .93). The reliability measure obtained through alpha omega coefficient was .81 for the final scale of 14 items. It is considered that the EAP-P is a valid and reliable instrument for assessing coping in children aged 3 to 6 years. (AU)

Relaciones afectivas y calidad de vida en el ámbito de las enfermedades raras: una revisión sistemática / Affective Relationships and Quality of Life in Rare Diseases: A Systematic Review

La calidad de vida en pacientes y cuidadores no puede ser concebida sin incluir a las necesidades sociales. El objetivo de esta investigación es realizar una revisión sistemática que muestre evidencias empíricas de cómo influyen las relaciones afectivas en la calidad de vida de pacientes con enfermedades raras y sus cuidadores. Se realizó una búsqueda en las bases de datos Web of Science, Scopus y PsycInfo. Se encontraron 4923 artículos que tras el proceso de cribado quedaron reducidos a 12 estudios. Se hallaron efectos de las relaciones afectivas tanto el núcleo familiar como en sus componentes de forma independiente (padres, hermanos y pacientes). Se evidencia que tanto el ámbito familiar como extrafamiliar son esenciales para abordar una mejora de la calidad de vida. Se recomienda en futuras investigaciones el estudio de las interacciones entre las relaciones establecidas para poder ofrecer una mejor intervención . (AU)

Quality of life in patients and caregivers cannot be conceived without including social needs. The aim of this research is to conduct a systematic review showing empirical evidence of how affective relationships influence the quality of life of patients with rare diseases and their caregivers. A search was conducted in the Web of Science, Scopus and PsycInfo databases. A total of 4923 articles were found, which after the screening process were reduced to 12 studies. The effects of affective relationships were found both in the family nucleus and in its components independently (parents, siblings and patients). It is evident that both the family and the extra-familial environment are essential to improve quality of life. It is recommended that future research should study the interactions between the established relationships to offer a better intervention. (AU)

Relaciones afectivas y calidad de vida en el ámbito de las enfermedades raras: una revisión sistemática / Affective Relationships and Quality of Life in Rare Diseases: A Systematic Review

La calidad de vida en pacientes y cuidadores no puede ser concebida sin incluir a las necesidades sociales. El objetivo de esta investigación es realizar una revisión sistemática que muestre evidencias empíricas de cómo influyen las relaciones afectivas en la calidad de vida de pacientes con enfermedades raras y sus cuidadores. Se realizó una búsqueda en las bases de datos Web of Science, Scopus y PsycInfo. Se encontraron 4923 artículos que tras el proceso de cribado quedaron reducidos a 12 estudios. Se hallaron efectos de las relaciones afectivas tanto el núcleo familiar como en sus componentes de forma independiente (padres, hermanos y pacientes). Se evidencia que tanto el ámbito familiar como extrafamiliar son esenciales para abordar una mejora de la calidad de vida. Se recomienda en futuras investigaciones el estudio de las interacciones entre las relaciones establecidas para poder ofrecer una mejor intervención . (AU)

Quality of life in patients and caregivers cannot be conceived without including social needs. The aim of this research is to conduct a systematic review showing empirical evidence of how affective relationships influence the quality of life of patients with rare diseases and their caregivers. A search was conducted in the Web of Science, Scopus and PsycInfo databases. A total of 4923 articles were found, which after the screening process were reduced to 12 studies. The effects of affective relationships were found both in the family nucleus and in its components independently (parents, siblings and patients). It is evident that both the family and the extra-familial environment are essential to improve quality of life. It is recommended that future research should study the interactions between the established relationships to offer a better intervention. (AU)

Family burden after critical illness: the forgotten caregivers.

OBJECTIVE: To determine the incidence of primary caregiver burden in a cohort of family members of critically ill patients admitted to ICU and to identify risk factors related to its development in both the patient and the family member. DESIGN: Prospective observational cohort study was conducted for 24 months. SETTING: Hospital Universitario Clínico San Cecilio, Granada. PATIENTS: The sample was the primary caregivers of all patients with risk factors for development of PICS (Post-Intensive Care Syndrome). INTERVENTIONS: The follow-up protocol consisted of evaluation 3 months after discharge from the ICU in a specific consultation. MAIN VARIABLES OF INTEREST: The scales used in patients were Barthel, SF-12, HADS, Pfeiffer, IES-6 and in relatives the Apgar and Zarit. RESULTS: A total of 93 patients and caregivers were included in the follow-up. 15 relatives did not complete the follow-up questionnaires and were excluded from the study. The incidence of PICS-F (Family Post Intensive Care Syndrome) defined by the presence of primary caregiver burden in our cohort of patients is 34.6% (n=27), 95% CI 25.0-45.7. The risk factors for the development of caregiver burden are the presence of physical impairment, anxiety or post-traumatic stress in the patient, with no relationship found with the characteristics studied in the family member. CONCLUSIONS: One out of 3 relatives of patients with risk factors for the development of PICS presents at 3 months caregiver burden. This is related to factors dependent on the patient's state of health.

Funcionalidad familiar y riesgo de caídas en adultos mayores hospitalizados

Introducción: La familia es una importante red de apoyo social para el adulto mayor, dado que en esta etapa se experimentan grandes cambios físicos y sociales. El adulto mayor al ser hospitalizado, además de su enfermedad, enfrenta riesgos como caídas, las cuales generan un daño adicional al paciente, que pueden alterar su recuperación y estancia. Objetivo: Determinar la asociación entre funcionalidad familiar y riesgo de caídas en el adulto mayor hospitalizado. Métodos: Se realizó un estudio transversal analítico, comparativo, en adultos mayores de 65 años hospitalizados en urgencias de un hospital de segundo nivel. La muestra se calculó con la fórmula para dos proporciones, n=61 sujetos por grupo. Grupo 1: adulto mayor con familia funcional y Grupo 2: adulto mayor con familia disfuncional; el muestreo fue no probabilístico por conveniencia. Las variables estudiadas fueron: edad, sexo, escolaridad, funcionalidad familiar, riesgo de caída, indicación de familiar a permanencia y contar con familiar acompañante. Con previo consentimiento informado, se aplicó el test APGAR familiar para funcionalidad y la escala Newman para riesgo de caídas. El análisis estadístico descriptivo se realizó con frecuencias, promedios, porcentajes e IC al 95 %; el análisis inferencial con t de Student, chi cuadrado y odds ratio. Resultados: La edad promedio fue de 70,90 (IC 95 % 69,4-72,4) y 73,77 (IC 95 % 71,8-75,5) años. En ambos grupos predominaron los hombres y grado de escolaridad primaria. El 70,5 % de pacientes en Grupo 2 no contó con acompañantes a pesar de que 49,2 % tenía indicado familiar permanente. Existió mayor riesgo de caídas en el grupo de familia disfuncional con 50,8 % y 27,9 % para el grupo de familia funcional (p=0,030). Conclusiones: Un factor protector de los adultos mayores con riesgo bajo de caída hospitalaria, es la familia funcional, además de, un familiar acompañante durante su hospitalización.

Introduction: The family is an important social support network for the elderly, since great physical and social changes are experienced at this stage. The older adult, when hospitalized in addition to his illness, faces risks such as falls, which generate additional damage to the patient, altering his recovery and stay. Objective: To determine the association between family functionality and risk of falls in hospitalized older adults. Methods: Analytical, comparative, cross-sectional study in adults over 65 years of age hospitalized in the emergency room of a second level hospital. The sample was calculated with the formula for two proportions, n=61 subjects per group. Group 1: elderly with a functional family, group 2: elderly with a dysfunctional family; the sampling was non-probabilistic for convenience. The variables studied were age, sex, schooling, family functionality, risk of falling, indication of a family member for permanence, and having an accompanying family member. With prior informed consent, the family APGAR test for functionality and the Newman scale for risk of falls were applied to the elderly. The descriptive statistical analysis was performed with frequencies, means, percentages and 95 % CI; inferential analysis with student's t test, chi-square, and odds ratio. Results: The average age was 70.90 (95 % CI 69.4-72.4) and 73.77 (95 % CI 71.8-75.5) years. In both groups, men and primary school level predominate. 70.5 % of patients in group 2 do not have an accompanying family member despite the fact that 49.2 % had a permanent family member indicated. There is a higher risk of falls in the dysfunctional family group with 50.8 % and 27.9 % for the functional family group (p=0.030). Conclusions: A protective factor for older adults with a low risk of hospital fall is the functional family and also an accompanying family member during their hospitalization.

Assessing the individual risk of stroke in caregivers of patients with stroke / Evaluación del riesgo individual de enfermedad cerebrovascular en cuidadores de pacientes con enfermedad cerebrovascular

Abstract Background Genetic factors influence the risk of developing stroke. Still, it is unclear whether this risk is intrinsically high in certain people or if nongenetic factors explain it entirely. Objective To compare the risk of stroke in kin and nonkin caregivers. Methods In a cross-sectional study using the Stroke Riskometer app (AUT Ventures Limited, Auckland, AUK, New Zealand), we determined the 5- and 10-year stroke risk (SR) among caregivers of stroke inpatients. The degree of kinship was rated with a score ranging from 0 to 50 points. Results We studied 278 caregivers (69.4% of them female) with a mean age of 47.5 ± 14.2 years. Kin caregivers represented 70.1% of the sample, and 49.6% of them were offspring. The median SR at 5 years was of 2.1 (range: 0.35-17.3) versus 1.73 (range: 0.04-29.9), and of 4.0 (range: 0.45-38.6) versus 2.94 (range: 0.05-59.35) at 10 years for the nonkin and kin caregivers respectively. In linear logistic regression controlled for the age of the caregivers, adding the kinship score did not increase the overall variability of the model for the risk at 5 years (R2= 0.271; p= 0.858) nor the risk at 10 years (R2= 0.376; p= 0.78). Conclusion Caregivers of stroke patients carry a high SR regardless of their degree of kinship.

Resumen Antecedentes Los factores genéticos probablemente influyen en el riesgo de desarrollar enfermedad vascular cerebral (EVC), pero no está claro si el riesgo es intrínsecamente alto o si es totalmente explicado por factores modificables. Objetivo Comparar el riesgo de EVC (REVC) en cuidadores pertenecientes y no pertenecientes a la misma familia de pacientes con EVC. Métodos En un estudio transversal que utilizó la aplicación Stroke Riskometer (AUT Ventures Limited, Auckland, AUK, Nueva Zelanda), determinamos el REVC a 5 y 10 años en cuidadores de pacientes hospitalizados por EVC. El grado de parentesco se graduó con un puntaje de 0 a 50 dependiendo de su relación familiar con el paciente. Resultados Estudiamos a 278 cuidadores (69.4% de ellos mujeres) con edad media de 47.5 ± 14.2 años. Los cuidadores familiares representaron el 70.1% de la muestra, siendo el 49.6% hijos. Las medianas de REVC a 5 años fueron de 2.1 (rango: 0.35-17.3) versus 1.73 (rango: 0.04-29.9), y de 4.0 (rango: 0.45-38.6) versus 2.94 (rango: 0.05-59.35) a 10 años para el grupo de cuidadores familiares y no familiares, respectivamente. En una regresión logística lineal contralando para la edad de los cuidadores, la adición del puntaje de parentesco no incrementó la variabilidad general del modelo para el riesgo a 5 años (R2= 0.271; p= 0.858) ni para el riesgo a 10 años (R2= 0.376; p= 0.78). Conclusión Los cuidadores de pacientes con EVC tienen un REVC alto, independientemente de su grado de parentesco.

Cerebral palsy and sleep: nonpharmacological treatment and impact on the life of caregivers - an integrative review / Paralisia cerebral e sono: tratamento não farmacológico e impacto na vida dos cuidadores - uma revisão integrativa

Abstract Background Children with cerebral palsy have a higher prevalence of sleep disorders, with numerous factors associated with a negative impact on the quality of life of caregivers. Objective To identify factors related to sleep disorders, nonpharmacological treatment, and the impact on the lives of caregivers. Methods The present literature review was carried out in the Latin American and Caribbean Center on Health Sciences Information (BIREME), the Cochrane Library, Scopus, PubMed, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycInfo, WorldCat, Web of Science, Latin American Literature on Health Sciences (LILACS), and Excerpta Medica Database (EMBASE), with the descriptors sleep, child, cerebral palsy, parents, and nursing. Studies available in Portuguese, English, or Spanish, published between 2010 and 2020, were our inclusion criteria. A total of 29 articles were included in the present review. Results We considered nonpharmacological interventions effective support measures to drug-based treatments. The main sleep disorders in children with cerebral palsy are insomnia, parasomnias, nightmares, sleep bruxism, sleepwalking, sleep talking, disorders of initiation and maintenance of sleep, and sleep hyperhidrosis. Most studies point to a reduction in the quality of life of caregivers whose children have sleep disorders. Conclusion Our review suggests the effectiveness of nonpharmacological treatments combined with the use of medications. Measures such as changes in sleep environment and routine are favorable strategies to improve sleep quality. In addition, children with sleep disorders negatively impact the quality of life of their caregivers.

Resumo Antecedentes Crianças com paralisia cerebral apresentam maior prevalência de distúrbios do sono, com inúmeros fatores associados a um impacto negativo na qualidade de vida dos cuidadores. Objetivo Identificar fatores relacionados aos distúrbios do sono, o tratamento não farmacológico e o impacto na vida dos cuidadores. Métodos Esta revisão da literatura foi realizada no Centro Latino-Americano e do Caribe de Informação em Ciências da Saúde (BIREME), Biblioteca Cochrane, Scopus, PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycInfo, WorldCat, Web of Science, Literatura Latino-Americana em Ciências da Saúde (LILACS) e Excerpta Medica Database (EMBASE), com os descritores sono, criança, paralisia cerebral, pais e enfermagem. Estudos disponíveis em português, inglês ou espanhol, publicados entre 2010 e 2020, foram nossos critérios de inclusão. Ao todo, 29 artigos foram incluídos nesta revisão. Resultados Consideramos as intervenções não farmacológicas medidas eficazes de apoio aos tratamentos medicamentosos. Os principais distúrbios do sono em crianças com paralisia cerebral são: insônia, parassonias, pesadelos, bruxismo do sono, sonambulismo, falar dormindo, distúrbios de iniciação e manutenção do sono e hiperidrose do sono. A maioria dos estudos aponta redução na qualidade de vida de cuidadores de crianças com distúrbios do sono. Conclusão Nossa revisão sugere a eficácia de tratamentos não farmacológicos combinados com o uso de medicamentos. Medidas como mudanças no ambiente e na rotina do sono são estratégias favoráveis para melhorar a qualidade do sono. Além disso, crianças com distúrbios do sono provocam impactos negativos na qualidade de vida de seus cuidadores.

Percepção de cuidadores de pré-escolares com TEA sobre seu comportamento e desempenho ocupacional durante a pandemia da COVID-19 / Perception of caregivers of preschool children with ASD on their behavior and occupational performance during the COVID-19 pandemic

Resumo Introdução Crianças com Transtorno do Espectro Autista (TEA) podem apresentar questões comportamentais, no processamento sensorial, na cognição e na linguagem, que afetam seu desempenho ocupacional, necessitando de acesso a serviços escolares, terapêuticos e de saúde. O acesso a esses serviços esteve restrito durante a pandemia de COVID-19, tornando essa população particularmente ainda mais vulnerável às restrições sociais impostas à época. Objetivo Descrever a percepção dos pais cuidadores de pré-escolares com TEA acerca do comportamento e desempenho ocupacional de seus filhos durante a pandemia da COVID-19. Método Estudo transversal, descritivo, quantitativo e qualitativo baseado em entrevistas com 60 cuidadores de pré-escolares com TEA. Os participantes responderam à seguinte pergunta: Você está notando alguma diferença no comportamento e desempenho da criança durante a pandemia? Para caracterização das crianças, foram utilizados o Sistema de Classificação de Funcionalidade no Autismo: Comunicação Social (ACSF:SC), o Inventário de Avaliação Pediátrica de Incapacidade - Teste Adaptativo de Computador (PEDI-CAT) e o Perfil Sensorial 2 (SP-2). Todas as entrevistas foram anotadas e 15 delas foram gravadas e transcritas. O material foi submetido à análise temática de conteúdo. Resultados Foram entrevistadas 43 mães, 15 casais e dois pais de crianças com TEA. Das 60 crianças, 46 (76,7%) eram meninos, com idade de 3 a 5 anos (53,6 ±10,18 meses). Os cuidadores perceberam mudanças no comportamento e desempenho ocupacional, com prevalência de relatos de piora. Houve aumento nas estereotipias, rigidez e hiperfoco, bem como menor engajamento nas atividades cotidianas. A presença dos cuidadores beneficiou algumas crianças, mas há relato de estresse, especialmente por parte das mães. Conclusão Houve variação nos relatos, com maior tendência à piora no comportamento e desempenho ocupacional das crianças com TEA.

Abstract Introduction Children with Autism Spectrum Disorder (ASD) face behavioral, sensory processing, cognitive, and language challenges that affect their ability to perform activities of daily living (ADL) and necessitate access to educational, therapeutic, and health services. The COVID-19 pandemic limited access to these essential services, exacerbating the challenges faced by this vulnerable population due to imposed social distancing measures. Objective To explore the perceptions of parent caregivers of preschoolers with ASD regarding their children's behavior and performance in ADL during the COVID-19 pandemic. Method This cross-sectional, descriptive study utilized both quantitative and qualitative approaches, interviewing 60 caregivers of preschoolers with ASD. Participants were asked about any observed changes in their child's behavior and ability to engage in ADL during the pandemic. Child characterization involved the Autism Classification System of Functioning: Social Communication (ACSF:SC), the Pediatric Evaluation of Disability Inventory - Computer Adaptive Test (PEDI-CAT), and the Sensory Profile 2 (SP-2). Interviews were documented, with 15 recorded and transcribed for thematic content analysis. Results Participants included 43 mothers, 15 couples, and two fathers, totaling 60 children, of whom 46 (76.7%) were boys aged between 3 and 5 years (mean age 53.6 ±10.18 months). Caregivers reported changes in behavior and performance in ADL, predominantly noting deterioration. Increases in stereotypic behaviors, rigidity, and hyperfocus were observed, along with decreased participation in ADL. While the presence of caregivers benefited some children, it also led to reported stress, particularly among mothers. Conclusion The study found a predominant trend of deteriorating behavior and performance in ADL among children with ASD during the pandemic, based on caregiver reports.