Esclerose lateral amiotrófica: implicações para familiares cuidadores / Amyotrophic lateral sclerosis: implications for family caregivers / Esclerosis lateral amiotrófica: implicaciones para los cuidadores familiares

Objetivo: descrever as dificuldades de adaptação dos familiares cuidadores de pacientes portadores de Esclerose Lateral Amiotrófica (ELA), cadastrados na central de Medicamentos de Alto Custo da Regional de Saúde Pirineus, na cidade de Anápolis -GO. Método: Trata-se de um estudo de abordagem qualitativa com o método descritivo. Os participantes foram previamente selecionados mediante adequação aos critérios de inclusão e concordância em fazer parte da pesquisa. A coleta de dados deu-se em local escolhido pelos mesmos, por meio de entrevista gravada em smartphone. A análise dos dados deu-se concomitante e após o termino da coleta. Resultados:Para a obtenção dos resultados e discussão foram entrevistados 4 (quatro) estão apresentados em 6 categorias, sendo elas: dificuldades para o cuidado; sobrecarga do cuidador; aceitação familiar; arendizado e dúvidas dos cuidadores; sobre atendimento; adaptação para os cuidados no núcleo familiar. Diante disto evidenciou-se as implicações ligadas a equipe de saúde, que são: a necessidade da equipe de saúde se manter informada não só sobre as mudanças relacionadas a doença, como também as dificuldades enfrentadas pela família, para que seja auxiliada em relação às suas dúvidas e durante a adaptação e a progressão da doença. Conclusão:estudo procura trazer um novo olhar que vai além do paciente, evidenciando as necessidades da família, tratando não somente o paciente, mas também cada família dentro de suas particularidades

Objective:describe the adaptation difficulties of family caregivers of patients with Amyotrophic Lateral Sclerosis (ALS), registered at the High-Cost Medication center of the Pirineus Regional Health in the city of Anápolis -GO. Method:This is a qualitative approach study using a descriptive method. Participants were previously selected based on inclusion criteria and agreement to participate in the research. Data collection took place at a location chosen by them, through interviews recorded on a smartphone. Dataanalysis was conducted concurrently with and after data collection. Results:For the results and discussion, 4 (four) were interviewed and are presented in 6 categories: difficulties in care; caregiver burden; family acceptance; learning and doubts of caregivers; about care; adaptation to care in the family nucleus. This evidenced the implications linked to the health team, which are: the need for the health team to stay informed not only about changes related to the disease but also about the difficultiesfaced by the family, so that they can be assisted regarding their doubts and during the adaptation and progression of the disease. Conclusion:the study seeks to bring a new perspective that goes beyond the patient, highlighting the needs of the family, treating not only the patient but also each family within its particularities.

Objetivo: Describir las dificultades de adaptación de los cuidadores familiares de pacientes con Esclerosis Lateral Amiotrófica (ELA), registrados en el Centro de Medicamentos de Alto Costo de la Región Sanitaria Pirineus, en la ciudad de Anápolis -GO. Método:Estudio cualitativo con método descriptivo. Los participantes fueron previamente seleccionados de acuerdo con el cumplimiento de los criterios de inclusión y el acuerdo para participar en la investigación. La recolección de datos se llevó a cabo en un lugar elegido por ellos, a través de entrevistas grabadas en un teléfono inteligente. El análisis de los datos se realizó de forma concomitante y una vez finalizada la recolección de datos. Resultados:Para obtener los resultados y la discusión, 4 (cuatro) encuestados son presentados en 6 categorías, a saber: dificultades para el cuidado; carga del cuidador; aceptación familiar; y dudas de los cuidadores; sobre el servicio al cliente; Adaptación al cuidado en el núcleo familiar. Frente a esto, se evidenciaron las implicaciones relacionadas con el equipo de salud, las cuales son: la necesidad de que el equipo de salud esté informado no solo sobre los cambios relacionados a la enfermedad, sino también sobre las dificultades enfrentadas por la familia, para que puedan ser ayudados en relación a sus dudas y durante la adaptación y progresión de la enfermedad. Conclusión:este estudio busca aportar una nueva mirada que vaya más allá del paciente, resaltando las necesidades de la familia, tratando no solo al paciente, sinotambién a cada familia dentro de sus particularidades.

Translation and cultural adaptation of the Positive Aspects of Caregiving Scale for caregivers of people living with dementia in Brazilian context: a methodological study

ABSTRACT BACKGROUND: The Positive Aspects of Caregiving (PAC) scale is used to assess psychosocial benefits provided to caregivers by the task of caring. The PAC scale consists of nine items, assessed using a five-point Likert scale, with higher values indicating greater positive perceptions and gains from the caregiving experience. OBJECTIVE: To translate and culturally adapt the PAC scale for informal Brazilian caregivers of people with dementia. DESIGN AND SETTING: A methodological study was conducted at the Federal University of São Carlos. METHODS: The following stages were carried out: Translation; Synthesis of the translations; Back-translation; Evaluation by an experts' committee; and Pre-test. RESULTS: Two independent professionals translated the PAC scale. The consensus version was obtained by merging both translations, which were back-translated into English by a third translator. The expert committee comprised three specialists in the area and project researchers. All scale items presented a Content Validity Index of 1 (CVI = 1.0), and thus remained in the pre-final version of the instrument. The instrument was pre-tested with seven caregivers of people with dementia, the majority of whom were women (57.1%), with a degree of kinship corresponding to sons/daughters (57.1%) and an average age of 55.2 (± 4.1) years. The caregivers considered it clear and understandable and made no suggestions for changes. CONCLUSION: The PAC scale was translated and culturally adapted for use by informal caregivers of people with dementia in Brazil. However, a psychometric analysis of the instrument is necessary to provide normative data for this population group.

Salud mental en cuidadores de pacientes pediátricos con enfermedades crónicas en República Dominicana / Caregivers' mental health of pediatric patients with chronic health diseases in the Dominican Republic

Introducción: La enfermedad crónica infantil se refiere a condiciones en pacientes pediátricos que generalmente son de duración prolongada, no se resuelven por sí solas, y están asociadas con deficiencia o discapacidad. Esta condición usualmente afecta las actividades normales del niño y requiere hospitalizaciones frecuentes, atención médica domiciliaria y/o atención médica extensa, lo que suele afectar además de quien lo padece a sus cuidadores, quienes con frecuencia presentan características asociadas a estrés y agotamiento llegando a provocar enfermedades físicas y mentales como parte del "síndrome de sobrecarga del cuidador". Metodología: Se realizó una encuesta a cuidadores de pacientes pediátricos del Hospital Pediátrico Doctor Hugo Mendoza, el instrumento de recolección incluye 9 ítems que evalúa la presencia y gravedad de síntomas depresivos en las últimas 2 semanas previas a la entrevista, y los datos fueron analizados en el Programa estadístico SPSS. El estudio contó con la aprobación del comité de ética institucional del Hospital y los participantes otorgaron su consentimiento voluntario explícito antes de la recopilación de datos. Resultados: Al aplicar la clasificación de la escala del BAI, se evidencia que, del total de cuidadores encuestados, el 76.7% parecía sufrir de ansiedad muy baja, un 20.9% de ansiedad moderada y 2.3% de ansiedad severa. Se aplicó la la escala PHQ9, una escala que mide la presencia de síntomas depresivos y mostró que el 41.9 % presenta un nivel leve, 39.5% un nivel mínimo, 16.3% un nivel moderado y por último solo 2.3% un nivel moderado-grave de síntomas depresivos. Discusión: En nuestro estudio hubo igual distribución de hombres y de mujeres. Conclusión: El diagnóstico infantil no juega un papel determinante en la aparición de la ansiedad y la depresión.

Introduction: Chronic childhood disease refers to conditions in pediatric patients that are generally of prolonged duration, do not resolve on their own, and are associated with deficiency or disability. This condition normally affects the normal activities of the child and requires frequent hospitalizations, home health care and/or extensive medical care, which will affect, in addition to those who will usually suffer from it, their caregivers, who often have characteristics associated with stress and exhaustion, reaching causing physical and mental illness as part of "caregiver overload syndrome". Methodology: A survey was conducted on caregivers of pediatric patients at the Doctor Hugo Mendoza Pediatric Hospital, the collection instrument includes 9 items that assess the presence and severity of depressive symptoms in the last 2 weeks prior to the interview, and the data were analyzed in the statistical program SPSS. The study was approved by the institutional ethics committee of the Hospital and the participants gave their explicit voluntary consent before data collection. Results: When applying the classification of the BAI scale, it is evident that, of the total number of caregivers surveyed, 76.7% seemed to suffer from very low anxiety, 20.9% from moderate anxiety and 2.3% from severe anxiety. The PHQ9 scale was applied, a scale that measures the presence of depressive symptoms and showed that 41.9% present a mild level, 39.5% a minimum level, 16.3% a moderate level and finally only 2.3% a moderate-severe level of depressive symptoms. Discussion: In our study there was equal distribution of men and women. Conclusion: Childhood diagnosis does not play a determining role in the appearance of anxiety and depression.

Caregiver burden, family adaptation, partnership, growth, affection, and resolve, anxiety levels, and perceived social support in relatives of patients with open heart surgery

SUMMARY OBJECTIVE: The aim of this study was to examine the relationship between caregiver burden, family adaptation, partnership, growth, affection, and resolve score, anxiety levels, and the perceived social support of the relatives of patients who had open heart surgery. METHODS: Volunteers among the relatives of patients who had open heart surgery in our cardiovascular surgery clinic and were followed up in the first 3 months were included in the study. The cardiovascular surgeons recorded the sociodemographic data of the relatives of the patients and directed them to a psychiatry clinic for further evaluation. The caregiver burden scale, family adaptation, partnership, growth, affection, and resolve scale, anxiety level scale, and perceived social support scale were applied to the relatives of the patients who participated in the study. RESULTS: Within the scope of the study, a total of 51 individuals, 29.4% (n=15) men and 70.6% (n=36) women, were included in the evaluation. The participants' ages ranged from 32 to 68 years, with an average age of 48 years. There was a statistically significant relationship between the caregiving burden scale score and the scale scores other than age (p<0.05). There was a statistically significant difference in terms of caregiving burden scale score, working status, physical and psychological problems, changes in home life, and changes in family relationships (p<0.05). CONCLUSION: The fact that the need for security and intimacy is related to anxiety and depression can be interpreted as the caregiving problems of the relatives of the patients who think that their patients are safe and feel closer to the intensive care personnel will decrease. Their depression and anxiety levels will also decrease.

The Role and Research Progress of Communication in the Implementation of Hospice Care for Professional Health Caregivers / 中国医学伦理学

The communication between professional health caregivers, which mainly composed of medical staff, and patients and their families plays an important role in hospice care. The effective doctor-patient communication can guide terminal patients and their families to establish a correct medical view, reduce excessive medical treatment, and improve the quality of life for terminal patients. This paper briefly described the communication context of hospice care, the communication subject and the current situation of hospice care, analyzed the problems and challenges encountered by professional health caregivers, which mainly including medical staff, in the communication context of hospice care diagnosis and hospice care, and made the prospects of the development of effective communication measures.

Qualitative Study of Primary Caregiver Load Experience in Colorectal Stoma Patients / 中国医学伦理学

To deeply explore the load experience of primary caregivers of colorectal stoma patients, analyze their psychological load, understand their load experience when caring for patients, so as to provide theoretical basis for promoting patients’ home rehabilitation and continuous nursing. A semi-structured interview was conducted with the primary caregivers of 10 patients with permanent stoma in a tertiary hospital in Xi’an using a phenomenological research method, and the data were summarized and refined by Colaizzi 7-step analysis. A total of four themes were extracted: complex emotional reactions, lack of knowledge about stoma care, a huge care load on the shoulder, and social and financial support needed. The primary caregivers of colorectal stoma patients have a certain degree of care load in the daily care of the patients. Health care professionals should pay attention to the psycho-emotional changes of these individuals and take targeted interventions to reduce the psychological load of the caregivers and improve the quality of life of the patients and their caregivers.

Sobrecarga en cuidadores chilenos de pacientes pediátricos con diagnóstico de epilepsia / Burden among chilean caregivers of pediatric patients diagnosed with epilepsy / Sobrecarga em cuidadores chilenos de pacientes pediátricos com diagnóstico de epilepsia

Introducción: Ser cuidador informal de pacientes pediátricos con epilepsia, implica una serie de desafíos que pueden repercutir en su salud, uno de ellos es el nivel de sobrecarga que experimenta. Objetivo: Determinar el nivel de sobrecarga, características sociodemográficas y de cuidado del cuidador informal de pacientes pediátricos con diagnóstico de epilepsia. Metodología: Estudio descriptivo, cuantitativo, transversal. Participaron 89 cuidadores de pacientes pediátricos con diagnóstico de epilepsia durante el 2021. Se aplicó una encuesta que consultaba datos sociodemográficos, del cuidado y la Escala de Zarit para medir el nivel de sobrecarga del cuidador. Se utilizó estadística descriptiva para presentar resultados. Resultados: Existe predominio del género femenino en un 97% para el cuidado del paciente pediátrico con diagnóstico de epilepsia. La mayoría de las cuidadoras perciben bajos ingresos económicos y dedican más de 8 horas al cuidado, además de no tener apoyo permanente en el rol de cuidado. Seis de diez cuidadores poseen algún nivel de sobrecarga. Conclusiones: Los cuidadores de pacientes pediátricos con diagnóstico de epilepsia están sometidos a sobrecarga, ya sea ligera o intensa. El perfil de los cuidadores es género femenino, estado civil de soltera, ingreso económico por bajo el sueldo mínimo de Chile, alto porcentaje de ausentismo laboral y falta de apoyo para el cuidado. Se identifica desigualdad de género en materia de este cuidado y la imperiosa necesidad de reformar las actuales políticas públicas de cuidado enfatizando el apoyo a los cuidadores informales.

Introduction: Informal caregivers of pediatric patients with epilepsy confront a myriad of challenges that may adversely affect their health, with one prominent challenge being the magnitude of the burden they experience. Objective: This study aims to ascertain the level of burden, sociodemographic characteristics, and caregiving attributes among informal caregivers of pediatric patients diagnosed with epilepsy. Methodology: A descriptive, quantitative, and cross-sectional study was conducted, involving the participation of 89 caregivers of pediatric patients diagnosed with epilepsy in 2021. A survey was administered to gather sociodemographic and caregiving-related information, along with the application of the Zarit Scale to quantify the caregiver burden. Descriptive statistics were employed to present the findings. Results: Among the caregivers of pediatric patients with epilepsy, 97% were female. The majority of caregivers had a low income, dedicated more than 8 hours to caregiving responsibilities, and lacked consistent support in their caregiving role. Six out of ten caregivers reported experiencing some degree of burden. Conclusions: Caregivers of pediatric patients diagnosed with epilepsy encounter varying degrees of burden, ranging from mild to intense. The prevalent caregiver profile is characterized by females, often single, with incomes below the Chilean minimum wage, high rates of absenteeism, and insufficient support in their caregiving responsibilities. Gender disparities in caregiving are evident, emphasizing the urgent need to reform current public policies on caregiving, with a particular focus on bolstering support for informal caregivers.

Introdução: Ser um cuidador informal de pacientes pediátricos com epilepsia envolve uma série de desafios que podem ter repercussões em sua saúde, sendo um deles o nível de sobrecarga experimentado. Objetivo: Determinar o nível de sobrecarga, as características sociodemográficas e de cuidado dos cuidadores informais de pacientes pediátricos com diagnóstico de epilepsia. Metodologia: estudo descritivo, quantitativo e transversal. Oitenta e nove cuidadores de pacientes pediátricos com diagnóstico de epilepsia durante 2021 participaram. Foi aplicada uma pesquisa que consultou dados sociodemográficos e de cuidados e a Escala Zarit para medir o nível de sobrecarga do cuidador. Estatísticas descritivas foram usadas para apresentar os resultados. Resultados: 97% dos cuidadores eram do sexo feminino, e 97% eram do sexo feminino quando cuidavam de pacientes pediátricos com epilepsia. A maioria dos cuidadores tem baixa renda e gasta mais de 8 horas no cuidado, além de não ter apoio permanente na função de cuidador. Seis em cada dez cuidadores apresentam algum nível de sobrecarga. Conclusões: Os cuidadores de pacientes pediátricos com diagnóstico de epilepsia estão sujeitos a sobrecarga, seja ela leve ou intensa. O perfil dos cuidadores é do sexo feminino, solteiros, com renda inferior ao salário-mínimo chileno, uma alta porcentagem de absenteísmo e falta de apoio para o cuidado. É identificada a desigualdade de gênero no cuidado e a necessidade urgente de reformar as políticas públicas atuais sobre o cuidado, com ênfase no apoio aos cuidadores informais.

Usabilidade da Plataforma Zelo Saúde por cuidadores de pessoas idosas dependentes / Usability of the Zelo Saúde Platform by caregivers of dependent elderly people / Usabilidad de la Plataforma Zelo Saúde por cuidadores de personas mayores dependientes

A Plataforma Zelo Saúde (PZS) é uma tecnologia mSaúde de apoio ao cuidado de pessoas idosas. Este artigo apresenta um estudo de usabilidade que analisou a utilização da PZS por 68 cuidadores/familiares de pessoas idosas dependentes por 10 semanas. Foram preenchidos um formulário pré- e outro pós-uso do aplicativo, e foi feita uma série de perguntas visando ao monitoramento semanal. Para análise dos dados, utilizou-se o software SPSS® v.25. Os resultados indicaram que a plataforma foi simples de usar e de fácil compreensão. A PZS alcançou uma nota média, na avaliação de usabilidade, de 8,9 ± 1,6 na escala de 0 a 10 da System Usability Scale, e possibilitou não só o acesso dos cuidadores/familiares às informações clínico-funcionais, à rotina de cuidados, aos medicamentos em uso, como também a comunicação entre eles e os profissionais de saúde por meio de chat. A plataforma conta também com vídeos educativos, no contexto da atenção básica à saúde e dos serviços de atenção domiciliar, mostrando-se uma ferramenta de apoio ao cuidado de pessoas idosas em seus domicílios

The Zelo Saúde Platform (PZS) is an mHealth technology to support the care of the elderly. This article presents a usability study that analyzed the use of the PZS by 68 caregivers/relatives of dependent elderly people for 10 weeks. Pre- and post-use forms were illed by participants and a set of questions aiming weekly monitoring was answered. For data analysis, SPSS® v.25 software was used. The results indicated that the platform was simple to use and easy to understand. The PZS achieved an average usability score of 8.9 ± 1.6 on a scale of 0 to 10 of the System Usability Scale, and enabled caregivers/family members to access to functional status information, routine care, medications in use, and permitted the communication between them and health professionals through chat. The platform also includes educational videos, in the context of primary health care and home care services, proving to be a tool to support the home care of elderly people

La Plataforma Zelo Saúde (PZS) es una tecnología mHealth (salud móvil) para apoyar el cuidado de las personas mayores. Este artículo presenta un estudio de usabilidad que analizó el uso de la PZS por parte de 68 cuidadores/familiares de personas mayores dependientes durante 10 semanas. Fueron llenados un formulario previo y otro posterior a la utilización de la aplicación, y se formularon diversas preguntas con vistas al seguimiento semanal. Para el análisis de los datos se utilizó el software SPSS® v.25. Los resultados indicaron que la plataforma era sencilla de usar y fácil de entender. La PZS alcanzó una calificación media de usabilidad de 8,9 ± 1,6 en una escala de 0 a 10 de la System Usability Scale, y permitió a los cuidadores/familiares acceder a la información clínico funcional, a los cuidados de rutina, a los medicamentos en uso y permitó también la comunicación entre ellos y los profesionales de la salud a través de chat. La plataforma cuenta aun con videos educativos, en el contexto de la atención primaria de salud y de los servicios de atención domiciliaria, demostrando ser una herramienta de apoyo al cuidado en el domicilio de personas mayores

Sobrecarga del cuidador familiar en Colombia: revisión sistemática exploratoria / Family caregiver's overburden in Colombia: An exploratory systematic review / Sobrecarga do cuidador familiar na Colômbia: revisão sistemática exploratória

Objetivo:describir las tendencias metodológicas, las poblaciones estudiadas y los desafíos futuros reportados en la literatura sobre lasobrecarga delcuidador familiar colombiano.Métodos:revisión sistemática exploratoria en donde se consultaron las bases de datos PubMed, ScienceDirect, Lilacs, Cuiden, SciELO, EBSCO y BVS, específicamente artículos originalespublicados del 2016 al 2021. Resultados:en 20 artículos revisados, se encontró una relación directa entre condiciones socioeconómicas y la sobrecarga del cuidador. El contexto cultural y las condiciones socioeconómicas son factores que influyen en la percepción de la sobrecarga del cuidador. Conclusiones:son necesarias las intervenciones de enfermeríadirigidasa los cuidadores familiares para mejorar su percepción de la sobrecarga y consecuentemente la calidad de vida

Objective: To describe methodological trends, populations studied, and future challenges reported in the literature on Colombian family caregivers' overburden. Methods: An exploratory systematic review using PubMed, ScienceDirect, LILACS, Cuiden, SciELO, EBSCO, and VHL databases was conducted, specifically original articles published between 2016 and 2021 were reviewed. Results:In 20 articles reviewed, a direct relationship was found between socioeconomic conditions and caregiver's overburden. Cultural context and socioeconomic conditions are factors that influence the perception of caregiver's overburden. Conclusions:Nursing interventions aimed at family caregivers are needed to improve their perception of overburden and, consequently, their quality of life

Objetivo:Descrever as tendências metodológicas, as populações estudadas e os desafios futuros relatados na literatura desobrecarga do cuidador familiar colombiano. Métodos:Revisão sistemática exploratória na qual foram consultadas as bases de dados PubMed, ScienceDirect, Lilacs, Cuiden, SciELO, EBSCO e BVS, com artigos originais, publicados de 2016 a 2021. Resultados:Em 20 artigos revisados, foi encontrada uma relação direta entre condições socioeconômicas e a sobrecarga do cuidador. O contexto cultural e as condições socioeconômicas são fatores que influenciam na percepção da sobrecarga do cuidador. Conclusões:As intervenções de enfermagem voltadas a cuidadores familiares são necessárias para melhorar sua percepção de sobrecarga e, consequentemente, sua qualidade de vida.

Proposal for Educational Intervention in People Living with Type 2 Diabetes Mellitus and in their Family Caregiver

Objective: Design a proposal of educational intervention for both, people who live with Diabetes Mellitus type 2 and their family caregiver. Methodology: Methodology. A case series study was conducted with the participation of 12 people living with type 2 diabetes mellitus and attending a Mutual Help Group in Pachuquilla, Hidalgo. Sociodemographic data, somatometric measurements (weight, height, BMI, waist circumference), blood pressure, and capillary blood samples for glycosylated hemoglobin were collected. Results: The mean age was 64 and range of 39-79 years, O.D. of 12; 67% women; 25% finished secondary school, 50% worked at home, 17% in commerce, 33% unemployed; 58% married, 25% widowed, and 17% divorced and in common law; 33.% with less than 5 years diagnosed, 67% have been diagnosed for more than 5 years; 75% depend economically; 67% have complications, 75% with family support, in diabetes knowledge 33% obtained intermediate score and 67% inadequate score; the weight average was of 77 kg and range of 57-116.5 kg, and O.D. 17 kg; in waist circumference, 100% exceed the recommended limit, in BMI, 50% is classified as overweight and 50% as obese; in blood pressure 50% > 130/80 mmHg and in glycosylated hemoglobin 75% > 7% mg/dl. Conclusion: The currently implemented strategy does not reflect good knowledge and control of the disease. This study invites us to continue with research where an educational intervention is implemented in which family caregivers are included and active participation is encouraged, in addition to implementing the IEP as a theoretical basis for the intervention.

Avós cuidadores de netos: análise do perfil e intensidade dos cuidados / Grandparents that take care of granchildren: analysis of the care profile and intensity / Abuelos cuidadores de nietos: análisis del perfil e intensidad del cuidado

RESUMO Objetivo: identificar o perfil e a intensidade de cuidado dos avós para com os netos. Método: estudo descritivo, transversal, por amostra aleatória sistematizada, utilizado questionário semiestruturado e empreendida análise exploratória descritiva. Realizado no município do Triângulo Mineiro - Brasil, 2019. Resultados: entrevistados 392 avós cuidadores de netos, maioria mulheres (87,5%), aposentadas (67,3%), ensino fundamental incompleto (52,8%), hipertensas (71,9%) e problemas visuais (69,4%). O motivo principal de cuidado foi pelos pais trabalharem e a intensidade de cuidado junto aos netos foi intensiva. Conclusão: considera-se que a relação de cuidado entre avos e netos é um aspecto invisível à produção científica e na estruturação de programas de saúde, apesar de seus impactos à condição de saúde dos idosos. O estudo amplia a visão aos mesmos sendo necessário o desvelar deste tema para que se possa efetivamente integrá-los e fortalecer políticas públicas e sociais, notadamente no setor saúde, dado ser um fenômeno emergente.

ABSTRACT Objective: to identify the profile and intensity of the care provided by grandparents to grandchildren. Method: a descriptive and cross-sectional study by means of systematized random sampling, with application of a semi-structured questionnaire and execution of descriptive exploratory analysis. It was conducted in 2019 in the municipality of Triângulo Mineiro - Brazil. Results: a total of 392 grandparents caring for grandchildren were interviewed, mostly women (87.5%), retired (67.3%), with incomplete Elementary School (52.8%), hypertensive (71.9%) and with vision problems (69.4%). The main reason for the caregiver role was the fact that the parents had to work, and intensity of the care provided to the grandchildren was high. Conclusion: it is considered that the care relationship between grandparents and grandchildren is an invisible aspect to the scientific production and in the structuring of health programs, despite its impacts on older adults' health status. The study broadens their visibility, with the need to unveil this topic so that it is possible to integrate them and strengthen public and social policies, especially in the health sector, given that it is an emerging phenomenon.

RESUMEN Objetivo: identificar el perfil y la intensidad del cuidado que realizan los abuelos de sus nietos. Método: estudio descriptivo, transversal, con muestreo aleatorio sistemático, mediante cuestionario semiestructurado y análisis descriptivo exploratorio. Realizado en el municipio del Triángulo Minero - Brasil, 2019. Resultados: se entrevistó a 392 abuelos que cuidaban a sus nietos, la mayoría eran mujeres (87,5 %), jubiladas (67,3 %), con primaria incompleta (52,8 %), hipertensión (71,9 %) y problemas visuales (69,4 %). La principal razón para que cuiden de ellos era que los padres trabajaban y la intensidad del cuidado de los nietos era intensiva. Conclusión: se considera que la relación de cuidado entre abuelos y nietos es un aspecto invisible en la producción científica y en la estructuración de programas de salud, a pesar de los impactos que tiene en la condición de salud de los adultos mayores. El estudio amplía la visión sobre los mismos dado que es necesario dilucidar este tema para que puedan ser efectivamente integrados y fortalecer las políticas públicas y sociales, especialmente en el sector salud, dado que se trata de un fenómeno emergente.

Ability of older male caregivers to seek help when caring for a wife or mother with dementia living at home / Journal of Rural Medicine

Objective: We aimed to clarify factors associated with the ability to seek help among older male caregivers who care for women with dementia in their families.Patients and Methods: This information will inform strategies to support their continued provision of long-term care. Participants were 364 male caregivers recruited from three places: The study period was 2017–2018. We obtained ethical approval for this study from the relevant ethics committee.Results: The ability to seek help for care problems among male caregivers was normally distributed. We found that more than 90% of older male caregivers did not actively seek help to resolve care problems, suggesting that older male caregivers had problems with long-term care. In the high score group, health status and the number of emotional support persons in the household were significantly and somewhat strongly positively correlated. The low score group showed a significant and rather weak positive correlation between economic status and health status, and the number of emotional supporters inside and outside the household.Positive correlations for the high score group were self-esteem and depressive symptoms, and self-esteem and resources. Positive correlations for the low score group were self-esteem and depressive symptoms, self-esteem and resources, and resources and depressive symptoms.Conclusion: Male caregivers are more likely to seek help if they are employed or play a role in their community. Nurses also need to support male caregivers with positive words and praise to help them use available support and resources and continue to provide long-term care. It is important for healthcare professionals to observe whether a caregiver presents with depressive symptoms or has long-term care problems because older male caregivers do not seek help. Collaboration between caregivers and medical, long-term care, and welfare professionals is necessary. Direct and timely intervention is needed.

Third party disability of family members of adults with dysphagia

Background: Third-party disability (TPD) has been studied in multiple patients including those with aphasia and hearing loss. Only one study has been done in relation to caregivers of adults with dysphagia. Third-party disability has been analysed using the International Classification of Function and Disability (ICF) framework. This study, therefore, used the ICF model to explore TPD of caregivers of adults with dysphagia for the context of Johannesburg in South Africa. Objectives: To describe how caregivers experience TPD when caring for adults with a dysphagia in Johannesburg. Methods: Data were collected from five primary adult caregivers, who were all family members, from government clinics in Johannesburg. This article reports the findings from the interviews that were analysed thematically using a top-down analysis approach. Results: Caregivers experienced challenges related to TPD mostly related to difficulties of being able to do activities of daily living for themselves, their household chores and attending social engagements. The use of body structure and function from the ICF model was not overtly applicable to the caregiver population. A new visual representation has been suggested to highlight the key themes to augment the social and psychological changes as seen on the ICF framework and demonstrated the specific interaction that these factors had on one another. Conclusion: Third-party disability is present in caregivers of patients with dysphagia. Healthcare workers need to be aware of the impact that this can have when preparing home management strategies. This newly devised representation can assist in creating a locally relevant patient-centred care approach but requires future input.

Caregiver burden related to feeding process in Alzheimer's disease / Sobrecarga do cuidador relacionada ao processo de alimentação na doença de Alzheimer

ABSTRACT Difficulties in the feeding process, such as aversive feeding behaviors and dysphagia, are common in patients with Alzheimer's disease (AD) and can often overload their caregivers. Although dysphagia is already established as a factor contributing to caregiver burden, the impact of aversive behaviors is less studied. Objectives: Evaluate the relationship between the feeding process in individuals with AD and their caregiver's burden. Methods: Dyads of individuals with AD and their caregivers were recruited for a cross-sectional study. The Edinburgh Feeding Evaluation in Dementia (EdFED) scale, the Zarit Burden Interview (ZBI), the mini-mental state examination (MMSE), the Functional Activities Questionnaire (FAQ), and the Functional Oral Intake scale (FOIS) were performed. Results: We included 60 AD individuals-caregivers dyads. The median (IQR) age of caregivers was 57 (19-81) years, and the most were females (70%). The individuals with AD had a median MMSE of 12 (6-15), and the disease duration was 4 (2-6) years. The mean (SD) Zarit score was 20.95 (6.51). In the multivariate linear regression, the EdFED score (95% CI 0.368-1.465) and time as a caregiver (95% CI 0.133-1.355) were associated with the caregiver's burden. Conclusions: Aversive behaviors were associated with the caregiver burden of individuals with AD, even with a short duration of the disease. These findings show the importance of education for caregivers regarding the feeding process, as these measures have great potential to minimize the caregiver's burden.

RESUMO Dificuldades no processo de alimentação, como comportamentos alimentares aversivos e disfagia, são comuns em indivíduos com doença de Alzheimer (DA) e muitas vezes podem sobrecarregar seus cuidadores. Embora a disfagia já esteja estabelecida como um fator que contribui para a sobrecarga do cuidador, o impacto dos comportamentos aversivos é menos estudado. Objetivos: Avaliar a relação entre o processo de alimentação em indivíduos com DA e a sobrecarga de seus cuidadores. Métodos: Díades de indivíduos com DA e seus cuidadores foram recrutados para um estudo transversal. Os protocolos Edinburgh Feeding Evaluation in Dementia Scale (EdFED), Zarit Burden Interview (ZBI), Mini-Mental State Examination (MMSE), Functional Activities Questionnaire (FAQ) e Functional Oral Intake Scale (FOIS) foram realizados. Resultados: Incluímos 60 díades de cuidadores-indivíduos com DA. A idade mediana (intervalo interquartil — IQR) dos cuidadores foi de 57 (19-81) anos e a maioria era do sexo feminino (70%). A mediana do MMSE dos indivíduos com DA foi de 12 (6-15) e o tempo de doença foi de quatro (2-6) anos. A pontuação média do Zarit foi de 20,95 (6,51). Na regressão logística multivariada, o escore EdFED (intervalo de confiança de 95% — IC95% 0,368-1,465) e o tempo como cuidador (IC95% 0,133-1,355) foram associados à sobrecarga deste. Conclusões: Comportamentos aversivos foram associados à sobrecarga do cuidador de indivíduos com DA, mesmo com pouco tempo de doença. Esses achados mostram a importância da educação dos cuidadores quanto ao processo de alimentação, pois essas medidas têm grande potencial para minimizar sua sobrecarga.

Vivências de familiares cuidadores de idosos dependentes no processo de cuidado* / Experiencias de cuidadores familiares de personas mayores dependientes en el proceso de cuidado / Experiences of family caregivers of dependent older people in the care process

Objetivo: compreender as vivências de cuidadores familiares de idosos em relação ao cuidado. Método: estudo descritivo, de abordagem qualitativa, realizado em um município do Sul do Brasil com 14 cuidadores familiares de idosos dependentes. As entrevistas realizadas entre outubro e novembro de 2022 foram audiogravadas, transcritas na íntegra e submetidas à Análise de Conteúdo, modalidade temática. Resultados: os familiares assumem o cuidado de forma inesperada. Apesar de ele ser pouco compartilhado, a família, especialmente nos primeiros tempos, se reorganiza para apoiar o idoso. Com a vivência continuada da assistência domiciliar, os familiares percebem a sobrecarga, contudo, são capazes de (re)significar seu papel e demonstram que a experiência é fonte de aprendizagem e retribuição. Conclusão: profissionais de saúde devem estar atentos à forma com que o processo de cuidar de idosos se estabelece na vida dos familiares e desenvolver intervenções que os apoiem, diminuam a sobrecarga e ampliem suas fortalezas.

Objective: to understand the experiences of family caregivers of the older people in relation to care. Method: a descriptive study with a qualitative approach, conducted in a city in southern Brazil with 14 family caregivers of dependent older people. The interviews carried out between October and November 2022 were audio recorded, fully transcribed and submitted to Content Analysis, a thematic modality. Results: Family members take care unexpectedly. Although it is little shared, the family, especially in the early days, reorganizes to support the older adult. With the continued experience of home care, family members perceive the burden, however, they are able to (re)signify their role and demonstrate that the experience is a source of learning and retribution. Conclusion: Health professionals should be attentive to the way in which the process of caring for the older people is established in the lives of family members and develop interventions that support them, reduce overload and expand their strengths.

Objetivo: comprender las experiencias de cuidadores familiares de personas mayores en relación al cuidado. Método: estudio descriptivo, con abordaje cualitativo, realizado en una ciudad del sur de Brasil con 14 cuidadores familiares de personas mayores dependientes. Las entrevistas realizadas entre octubre y noviembre de 2022 fueron audiograbadas, transcritas íntegramente y sometidas al análisis temático. Resultados: los familiares asumen el cuidado de manera inesperada. Aunque rara vez se comparte, la familia, sobre todo en los primeros días, se reorganiza para apoyar al paciente. Con la experiencia continuada del cuidado domiciliario, los familiares perciben la sobrecarga, sin embargo, logran (re)significar su rol y demostrar que la experiencia es fuente de aprendizaje y retribución. Conclusión: los profesionales de la salud deben ser conscientes de la forma en que el proceso de cuidado del anciano se establece en la vida de los familiares y desarrollar intervenciones que los apoyen, reduzcan la carga y amplíen sus fortalezas.

Impact of the motor function of individuals with spinal muscular atrophy on caregiver burden / Impacto de la función motora de los individuos con atrofia muscular espinal en la carga de sus cuidadores / Impacto da função motora de indivíduos com atrofia muscular espinhal na sobrecarga de seus cuidadores

ABSTRACT Spinal Muscular Atrophy (SMA) is a neurodegenerative disease that impairs motor function, justifying the help of a caregiver. This study aimed to analyze the impact of the motor function of individuals with SMA on caregiver burden. This is a cross-sectional study of 32 individuals with SMA and 27 caregivers, carried out in a rehabilitation center, using the identification questionnaire, anamnesis and sociodemographic profile, Motor Function Measurement Scale and Burden Interview. Motor function and caregiver burden were compared between SMA types using the analysis of covariance (ANCOVA) and correlated using Pearson's correlation test. Individuals with SMA type I had greater impairment of motor function when compared to types II and III, and individuals with type III had better scores in all domains of motor function. No correlation was observed between motor function and caregiver burden: however, most caregivers presented some level of burden, especially those from mild to moderate. Moderate to severe burden was found in caregivers with SMA in a considerable prevalence, which requires care and attention from health professionals.

RESUMEN La atrofia muscular espinal (AME) es una enfermedad neurodegenerativa que provoca un deterioro de la función motora, por lo que requiere la asistencia de cuidadores. El objetivo de este estudio fue analizar el impacto de la función motora de los individuos con AME en la carga de sus cuidadores. Se trata de un estudio transversal, realizado en un centro de rehabilitación con 32 individuos con AME y 27 cuidadores, utilizando como metodología el cuestionario de identificación, anamnesis y perfil sociodemográfico, la escala de medida de la función motora y la entrevista de carga. La función motora y la carga de los cuidadores se compararon entre los tipos de AME mediante el análisis de covarianza (Ancova) y se correlacionaron mediante la prueba de correlación de Pearson. Los individuos con AME tipo I tuvieron un mayor deterioro de la función motora en comparación con los tipos II y III, y los individuos de tipo III obtuvieron mejores puntuaciones en todos los dominios de la función motora. No se encontró correlación entre la función motora y la carga del cuidador, pero la mayoría de los cuidadores tenían algún nivel de carga, en particular de leve a moderada. Se encontró una carga de moderada a grave en los cuidadores con AME con una prevalencia considerable, lo que requiere cuidados y atención por parte de los profesionales de la salud.

RESUMO Atrofia muscular espinhal (AME) é uma doença neurodegenerativa que provoca comprometimento na função motora, justificando o auxílio de cuidador. O objetivo deste estudo foi analisar o impacto da função motora de indivíduos com AME na sobrecarga de seus cuidadores. Trata-se de um estudo transversal realizado em um centro de reabilitação com 32 indivíduos portadores de AME e 27 cuidadores, utilizando como metodologia o questionário de identificação, anamnese e perfil sociodemográfico, a escala da medida da função motora e Burden Interview. A função motora e a sobrecarga do cuidador foram comparadas entre os tipos de AME por meio da Análise da Covariância (Ancova) e correlacionadas pelo teste de correlação de Pearson. Os indivíduos com AME tipo I apresentaram maior comprometimento da função motora quando comparado entre os tipos II e III, e indivíduos tipo III apresentaram melhores escores em todos os domínios da função motora. Não foi percebida correlação entre função motora e sobrecarga de cuidador, entretanto encontramos a maior parte dos cuidadores apresentando algum nível de sobrecarga, com destaque ao de leve a moderado. A sobrecarga moderada a severa foi encontrada nos cuidadores com AME em uma prevalência considerável, o que requer cuidado e atenção dos profissionais de saúde.

Caregiver perception of children's dental caries and experience of accessing dental health services for their children / Percepção do cuidador sobre a cárie dentária infantil e experiência no acesso a serviços de saúde bucal para seus filhos

Objective: this study aims to know the caregiver's perception of children's dental caries and their experience of accessing dental health services in children. Material and Methods: this research was an analytic observational study with a cross-sectional method and used a purposive sampling technique with a sample of 56 respondents. Data were obtained through a questionnaire and the sampling technique used purposive sampling with samples were all caregivers at Cahaya Tazkia Kindergarten, Yapita Kindergarten, and Aisyiah 52 Kindergarten Surabaya. Data were analyzed using a correlation Spearman test. Results: perceived benefit and self-efficacy had a significant correlation with the experience of accessing dental health services (p-value ≤ 0.05) with coefficient correlations were 0.168 and 0.936 respectively. Meanwhile, perceived susceptibility, perceived severity, and the perceived barrier had no correlation with the experience of accessing dental health. Most male respondents in this research had a proper job to manage their children to go to dental health. Perceived susceptibility, perceived severity, perceived benefit, and self-efficacy of women caregivers in productive age were good but the perceived barrier showed a high mean. Respondents with that characteristics did not have steady jobs. Conclusion: women caregiver between the age of 21-40 years old believes that maintaining oral health is beneficial and will result in an increased number of accessing dental health services for their children. But caregivers who were women and also did not have a steady job had barriers to accessing dental health for their children (AU).

Objetivo: este estudo tem como objetivo conhecer a percepção do cuidador sobre a cárie na primeira infância e sua experiência de acesso aos serviços de saúde bucal em crianças. Material e Métodos: esta pesquisa foi um estudo observacional analítico transversal e utilizou uma técnica de amostragem intencional com uma amostra de 56 entrevistados. Os dados foram obtidos por meio de um questionário e a técnica de amostragem utilizou amostragem intencional com todas as amostras sendo cuidadores do Jardim de infância Cahaya Tazkia, Jardim de infância Yapita e Jardim de infância Aisyiah 52 Surabaya. Os dados foram analisados por meio de um teste de correlação de Spearman. Resultados: o benefício percebido e a autoeficácia tiveram correlação significativa com a experiência de acesso aos serviços de saúde bucal (p-valor ≤ 0,05), com coeficientes de correlação de 0,168 e 0,936, respectivamente. Enquanto isso, a suscetibilidade percebida, a severidade percebida e a barreira percebida não tiveram correlação com a experiência de acesso à saúde bucal. A maioria dos entrevistados do sexo masculino nesta pesquisa tinha um trabalho adequado para gerenciar a saúde bucal de seus filhos. A suscetibilidade percebida, a severidade percebida, o benefício percebido e a autoeficácia de cuidadores mulheres em idade produtiva foram bons, mas a barreira percebida apresentou uma média alta. Os entrevistados com essas características não tinham empregos fixos. Conclusão: mulheres cuidadoras na faixa etária de 21 a 40 anos acreditam que a manutenção da saúde bucal é benéfica e resultará em maior número de acessos aos serviços de saúde bucal de seus filhos. No entanto, cuidadoras que eram mulheres, mas que não tinham emprego fixo, apresentavam barreiras para o acesso à saúde bucal de seus filhos (AU)

Sociodemographic, clinical, and psychosocial factors associated with burden in older caregivers: a cross-sectional study / Fatores sociodemográficos, clínicos e psicossociais associados à sobrecarga de idosos cuidadores de idosos: um estudo transversal

ABSTRACT The task of caring can negatively affect the physical and mental health; therefore, it is important to understand which factors are associated with burden in older caregivers of older adults. Objective: This study aimed to explore sociodemographic, clinical, and psychosocial factors associated with burden in older caregivers of older adults. Methods: This is a cross-sectional study developed with 349 older caregivers who were registered at a Family Health Unit of a city in the state of São Paulo, Brazil. Household interviews were conducted and data were collected on the sociodemographic (profile, family income), clinical (self-reported pain, sleep, frailty), and psychosocial (burden, family functioning, depressive symptoms, stress) characteristics of the caregivers as well as dependence on activities of daily living and cognition in the care recipients. Results: Women predominated in the sample (76.5%) and mean age was 69.5 years. The mean burden score was 18.06 points, with 47.9% above the cutoff of 16 points, denoting excessive burden. The bivariate model revealed associations between burden and financial insufficiency, family dysfunction, difficulty sleeping, pain, perceived stress, depressive symptoms, frailty, and multimorbidity among the caregivers as well as worse functional and cognitive performance in the care recipients. The controlled model revealed an association between burden and depressive symptoms (β=16.75; 95%CI 1.80-31.68). Conclusions: We identified an association between burden and depressive symptoms, underscoring the need for the planning and implementation of specific actions directed at caregivers in order to minimize the impact on health and to improve the quality of life.

RESUMO A tarefa de cuidar pode afetar negativamente a saúde física e mental, sendo importante compreender quais os fatores associados à sobrecarga em idosos cuidadores de idosos. Objetivo: Explorar os fatores sociodemográficos, clínicos e psicossociais associados à sobrecarga em idosos cuidadores de idosos. Métodos: Estudo transversal desenvolvido com 349 idosos cuidadores cadastrados nas unidades de Saúde da Família de um município do interior paulista. Foram realizadas entrevistas domiciliares e coletados dados sobre as informações sociodemográficas (perfil, renda familiar), clínicas (dor autorrelatada, sono, fragilidade) e psicossociais (sobrecarga, funcionalidade familiar, sintomas depressivos, estresse) do cuidador, bem como dados de funcionalidade e cognição dos receptores de cuidados. Resultados: Houve prevalência do sexo feminino (76,5%), com média de idade de 69,5 anos. A média do escore da sobrecarga foi 18,06 pontos, com 47,9% dos idosos cuidadores acima da nota de corte de 16 pontos. O modelo univariado revelou associação entre sobrecarga e percepção de insuficiência financeira, disfunção familiar, dificuldade de dormir, dor, estresse percebido, sintomas depressivos, fragilidade e multimorbidade, além de pior desempenho funcional e cognitivo dos idosos receptores de cuidados. No modelo controlado houve associação entre sobrecarga e sintomas de depressão (β=16,75; intervalo de confiança — IC95% 1,80-31,68). Conclusão: Identificamos associação entre sobrecarga e sintomas depressivos, de modo que é necessário planejar e implementar cuidados específicos a fim de minimizar o impacto na saúde dos cuidadores e favorecer a qualidade de vida.

Cuidados a la persona con cáncer y neutropenia / Caring for the person with cancer and neutropenia

Este trabajo se realizó como respuesta a un problema de la practica en enfermería al haberse realizado en el marco de un producto requerido desde la formación posgradual de la maestría en enfermería con profundización en oncología, buscando aportar y transferir el conocimiento a la sociedad. El trabajo está orientado a la educación que requieren los cuidadores de pacientes adultos con Leucemia linfoblástica aguda de células B CD 19 positivo con cromosoma Philadelphia negativo en situación de recaída o refractariedad al tratamiento o con enfermedad mínima residual positiva y que requieran tratamiento con Blinatumomab. El objetivo fue elaborar una guía práctica de cuidado dirigida a los cuidadores de estos pacientes con la intención de brindar herramientas desde el conocimiento que permitan conocer sobre la enfermedad, el tratamiento, la identificación de los signos y síntomas asociados a eventos adversos por la administración del Blinatumomab descritos en la misma guía, para prevenir o disminuir la ocurrencia de desenlaces fatales en esta población de pacientes. Se contó con la participación de enfermeros profesionales y de cuidadores de pacientes que han administrado y recibido terapia con Blinatumomab respectivamente para identificar las necesidades en educación desde la práctica profesional y el desarrollo de los cuidados. Se diseño un material educativo basado en las orientaciones dadas por la Organización Panamericana de la Salud para la elaboración de material educativo, obteniendo como producto una guía comprensible y útil como instrumento para el desarrollo de procesos educativos con cuidadores de adultos con LLA de células B CD 19 positivo PH negativo R/R o con EMR positiva.

The present work was carried out in response to a problem in nursing practice because it was carried out within the framework of a product required from the postgraduate training of the master's degree in nursing with a deepening in oncology, seeking to contribute and transfer knowledge to society. The work is oriented towards the education required by caregivers of adult patients with Philadelphia chromosome negative CD 19 positive B-cell acute lymphoblastic leukemia in a situation of relapse or refractory to treatment or with positive minimal residual disease and who require treatment with Blinatumomab. The objective was to develop a practical care guide aimed at the caregivers of these patients with the intention of providing tools based on knowledge that allow them to know about the disease, treatment, identification of signs and symptoms associated with adverse events due to the administration of the Blinatumomab described in the same guidelines, to prevent or reduce the occurrence of fatal outcomes in this patient population. Professional nurses and caregivers of patients who have administered and received Blinatumomab therapy, respectively, participated to identify educational needs from professional practice and care development. An educational material was designed based on the guidelines given by the Pan American Health Organization for the elaboration of educational material, obtaining as a product an understandable and useful primer as an instrument for the development of educational processes with caregivers of adults with CD B-cell ALL. 19 positive PH negative R/R or with positive EMR.

Impact of the burden of caregivers of children with ASD on oral health / Impacto da sobrecarga dos cuidadores de crianças com TEA na saúde bucal

Introdução: a demanda do cuidador em atender as necessidades de indivíduos com transtorno do espectro autista (TEA), pode influenciar na sua qualidade de vida. Objetivo: o objetivo do presente estudo foi comparar a sobrecarga de cuidadores de indivíduos com TEA com indivíduos neurotípicos (N) e avaliar a correlação do impacto da saúde bucal com a sobrecarga desses cuidadores. Material e método: os participantes foram divididos em dois grupos: Grupo TEA (TEA; n=35) e Grupo Neurotípico (N; n=35). Foi aplicado aos cuidadores um questionário de características sociodemográficas. A sobrecarga dos cuidadores foi medida pelo questionário Burden Interview (BI). Foi analisado o índice de placa visível (IPV) das crianças. Os dados foram submetidos a análise estatística (α=5%). Resultado: no grupo TEA a maioria dos participantes eram parcialmente dependentes, sendo a maioria dependentes na higienização bucal. No grupo N a maioria eram independentes e autossuficientes na higienização bucal. Metade dos cuidadores do grupo TEA apresentaram sobrecargas leve à moderada (54,3%). No grupo N constatou-se que a maioria enquadrava-se em nenhuma sobrecarga (65,7%). Na análise comparativa dos dados do questionário BI foram observadas diferenças significantes entre os grupos nas questões (p<0,001) que são diretamente relacionadas com os cuidados com os filhos. Com relação ao IPV das crianças do grupo TEA e N comparadas ao nível de sobrecarga, observou-se que não houve diferenças significativas entre os grupos. Conclusão: os cuidadores do grupo TEA apresentam maior sobrecarga quando comparados ao grupo N e não houve correlação entre a sobrecarga e o grau de higiene bucal

Introduction: the caregiver's demand to meet the needs of individuals with autism spectrum disorder (ASD) can influence their quality of life. Objective: the objective of the present study was to compare the burden on caregivers of individuals with ASD with individuals neurotypical (N) and to evaluate the correlation of the impact of oral health with the burden on these caregivers. Material and method: participants were divided into two groups: ASD Group (ASD; n=35) and Neurotypical Group (N; n=35). A sociodemographic characteristics questionnaire was administered to caregivers. Caregiver burden was measured using the Burden Interview (BI) questionnaire. The visible plaque index (VPI) of children was analyzed. The data were submitted to statistical analysis (α=5%). Result: in the group ASD, the majority of participants were partially dependent, with the majority being dependent on oral hygiene. In group N, the majority were independent and self-sufficient in oral hygiene. Half of the caregivers in the group ASD felt mild to moderate burden (54.3%), while in group N it was found that more than half of them had no burden (65.7%). In the comparative analysis of data from the BI questionnaire, significant differences were observed between the groups in questions (p <0.001), which are directly related to childcare. Regarding the VPI of children in the group ASD and N groups compared to the level of burden, it was observed that there were no significant differences between the groups. Conclusion: ASD caregivers have a greater burden when compared to N caregivers and the degree of burden did not influence the oral hygiene of the child with ASD