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1.
Rev. latinoam. cienc. soc. niñez juv ; 22(1): 282-302, ene.-abr. 2024. tab
Article in Spanish | LILACS-Express | LILACS | ID: biblio-1576461

ABSTRACT

Resumen (analítico) Existe insuficiente evidencia acerca de lo que significa ser cuidador de niños o niñas con parálisis cerebral en Colombia. Nuestra investigación se aborda desde un enfoque hermenéutico, utilizando el método de la teoría fundamentada, con 13 entrevistas semiestructuradas a adultos cuidadores de niños y niñas con parálisis cerebral. Emergen cuatro categorías: amor incondicional, cuidando como mujer, atravesando el duelo e interminable lucha por los derechos del menor. Se concluye que existe una decidida forma de afrontamiento de las cuidadoras, pues están dispuestas a renunciar a sus propias vidas, a sus relaciones personales y sociales, a sufrir un constante duelo, a aprender nuevas formas de cuidar y transformar sus hogares, hasta luchar por la atención digna de sus hijos. El amor sin condiciones les permite reconocerse como mujeres cuidadoras únicas.


Abstract (analytical) There is insufficient evidence regarding meanings developed by caregivers of children with Cerebral Palsy in Colombia. The methodology involved adopting a hermeneutic approach, which was combined with the grounded theory method. A total of 13 semi-structured interviews were conducted with adult caregivers of children with cerebral palsy. Following an analysis of the results, four categories emerged: unconditional love; caring as a woman; experiencing grief; and the endless fight for their child's rights. It was concluded that the caregivers of children with Cerebral Palsy have developed determined coping skills. This is because they are willing to give up their own lives, sacrifice their personal and social relationships, experience constant grief and learn new ways of caring and transforming their homes in their struggle to provide dignified care for their children. Unconditional love allows these caregivers to recognize themselves as unique caring women.


Resumo (analítico) Não há evidências suficientes sobre o que significa ser cuidador de crianças com paralisia cerebral na Colômbia. Pesquisa abordada a partir de uma abordagem hermenêutica, utilizando como método da teoria fundamentada, com 13 entrevistas semiestruturadas com adultos cuidadores de crianças com paralisia cerebral. Emergem quatro categorias: amor incondicional, cuidado como mulher, vivência do luto e luta incessante pelos direitos da criança. Conclui-se que existe uma determinada forma de enfrentamento para os cuidadores, pois estão dispostos a abdicar de sua própria vida, de suas relações pessoais e sociais, a sofrer lutos constantes, a aprender novas formas de cuidar e transformar seus lares, a lutar por cuidado digno de seus filhos. O amor incondicional permite que elas se reconheçam como mulheres únicas e carinhosas.

2.
Article | IMSEAR | ID: sea-227720

ABSTRACT

Background: Sandwich generation caregivers, while providing simultaneous care to two generations, face unique challenges and responsibilities. This research tried to understand the intricate aspects of this caregiving paradigm, with an emphasis on the difficulties faced by the sandwich generation in India and its impact on their psychosocial well-being. Methods: The study used the Montgomery Borgatta caregiver burden scale to measure the burden experienced by the caregivers. Furthermore, both bivariate and multivariate analyses were done to understand the effects of background factors on the burden experienced by the caregiver. Results: The findings demonstrate significant associations with demographic characteristics such as age, caste, education, income, religion, and employment status, emphasizing the multidimensional nature of the burdens. Younger caregivers experienced greater objective and demand burdens, suggesting that the caregiving challenges intensify as caregivers age. Higher education and income were associated with increased subjective demand burden, possibly due to higher expectations and greater responsibilities. Conclusions: The study results highlight the critical need for tailored support systems that identify and address the unique issues of sandwich generation caregiving. As population ageing continues to impact societies worldwide, understanding and addressing the concerns of sandwich generation caregivers is crucial for the well-being of individuals, families, and communities.

3.
Article | IMSEAR | ID: sea-227716

ABSTRACT

Background: In India, families are the primary source of support in caring for the elderly, whereas the potential group of family caregivers is shrinking. Caregivers need greater recognition and support to help them care for the elderly and to maintain their own health and well-being. Assessment of the perceived burden of caregivers helps identify those in need of support. Methods: A cross-sectional questionnaire-based study was conducted to estimate the perceived level of caregiver burden in families of elderly and to identify the association between selected socio-demographic characteristics of the caregivers and the level of caregiver burden. The caregivers of 50 elderly people categorized as mild and moderate dependents as per the Katz index of Independence were included in the study. The Zarith caregiver burden scale was used to evaluate their perceived level of caregiver burden. Results: Thirty-two (64%) caregivers were found to experience a mild to moderate perceived level of caregiver burden. An ordinal regression analysis between other burdens/responsibilities (predictor) of the caregiver and the perceived level of caregiver burden showed a significant association (?2; p=0.009) between the two. An odds ratio of 6.7 (95% CI, 2.22 to 22.7; p=0.00115) showed that as the predictor increased, the event (caregiver burden) increased as well. Conclusions: The majority of the caregivers suffer from a mild to moderate perceived level of caregiver burden. They experience more burden when they hold additional responsibility of caring for the elderly.

4.
Chinese Journal of Neuromedicine ; (12): 152-158, 2024.
Article in Chinese | WPRIM | ID: wpr-1035973

ABSTRACT

Objective:To preliminarily explore the long-term improvement of low-frequency deep brain stimulation (DBS) on the nucleus basalis of Meynert (NBM) in cognitive disorders, neuropsychiatric symptoms and sleep disorders of patients with early-onset severe Alzheimer's disease (AD).Methods:A retrospective study was performed; 18 patients with early-onset severe AD admitted to Department of Neurosurgery, First Medical Center of PLA General Hospital from January 2016 to December 2022 were included. These patients were divided into NBM-DBS group and control group according to different treatments; 6 patients received low-frequency NBM-DBS on basis of conservative treatments; 12 patients accepted conservative treatments. Changes in Brief Mental State Examination (MMSE), Montreal Cognitive Assessment (MoCA), Neuropsychiatric Inventory (NPI), Hamilton Depression Rating Scale (HAMD), Becker-Lavanson Mania Scale (BRMS), Pittsburgh Sleep Quality Index (PSQI), and Zarit Caregiver Burden Interview (ZBI) were observed before treatment and 1 year after follow up.Results:MMSE and MoCA scores 1 year after follow up obviously reduced compared with those before treatment in both NBM-DBS and control patients; MMSE and MoCA scores in NBM-DBS patients showed no significant differences between 1 year after follow up and before treatment ( P>0.05), while significant differences were noted in the control group between 1 year after follow-up and before treatment ( P<0.05); and no significant differences in MMSE and MoCA scores were noted between the 2 groups 1 year after follow up ( P>0.05). NPI, HAMD, BRMS and ZBI scores in the NBM-DBS group 1 year after follow up were significantly different compared with those before treatment ( P<0.05); no significant differences were noted in NPI, HAMD and ZBI scores in the control group between 1 year after follow up and before treatment ( P>0.05), while significant difference was noted in BRMS scores ( P<0.05); significant differences in NPI, HAMD, BRMS and ZBI scores were noted between the 2 groups 1 year after follow up ( P<0.05). Conclusion:Low-frequency NBM-DBS is not only effective in improving cognitive disorders, but also effective in improving neuropsychiatric symptoms and sleep disorders, as well as reducing caregiver burden in patients with early-onset severe AD.

5.
Rev. Assoc. Med. Bras. (1992, Impr.) ; Rev. Assoc. Med. Bras. (1992, Impr.);70(2): e20230494, 2024. tab
Article in English | LILACS-Express | LILACS | ID: biblio-1529378

ABSTRACT

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.

6.
Dement. neuropsychol ; 18: e20230118, 2024. tab
Article in English | LILACS-Express | LILACS | ID: biblio-1564435

ABSTRACT

ABSTRACT Huntington's disease (HD) is a hereditary, neurodegenerative disease characterized by motor, cognitive, and behavioral issues. As the disease progresses, people become dependent on their caregivers leading to a significant burden. There is a lack of effective neuropsychological intervention to support this population. Objective: To develop an online neuropsychological intervention and evaluate its effects in decreasing the HD caregiver burden. Methods: This qualitative pilot study was conducted online during the COVID-19 pandemic in Brazil. We selected a convenience sample of five informal caregivers of HD patients (mean 46.2 years old). At baseline, participants were assessed via an individual online neuropsychology interview/screening, covering demographic data. Subsequently, we conducted 20 online 90-minute sessions of the psychological consultation over 12 months. Each session was structured in three stages: 1) Welcoming; 2) Breathing and mindfulness practice; and 3) Discussion of themes about the group's needs based on the main complaints. A second intervention assessment was applied. Results: None of the caregivers were provided with details about HD at the time of diagnosis and later care. The necessity to care for a person with a rare genetic disease was added to caregivers' already-existing working routine and home services, causing a symptom of overload. After the neuropsychological intervention, all participants reported feeling less burdened by caring, improved self-care and conflict resolution with the person with HD through expanding behavioral repertoire focused on emotions and communication. Conclusion: Online neuropsychologic intervention can reduce the burden of HD caregivers. More comprehensive studies should investigate these findings.


RESUMO A doença de Huntington (DH) é hereditária e neurodegenerativa, caracterizada por problemas motores, cognitivos e comportamentais. À medida que avança, os pacientes dependem cada vez mais de cuidadores, gerando uma sobrecarga significativa. Há uma carência de intervenções neuropsicológicas eficazes para apoiar esta população. Objetivo: Desenvolver uma intervenção neuropsicológica online e avaliar seus efeitos na redução da sobrecarga do cuidador em DH. Métodos: Este estudo piloto qualitativo ocorreu online, durante a pandemia de COVID-19 no Brasil. Selecionamos uma amostra de conveniência de cinco cuidadores informais de pacientes com DH (média de 46,2 anos). Inicialmente, realizamos triagens neuropsicológicas online, abrangendo dados demográficos e entrevistas. Subsequentemente, conduzimos 20 sessões de 90 minutos ao longo de 12 meses, estruturadas em: 1) acolhimento, 2) prática de respiração e mindfulness e 3) discussão das necessidades do grupo com base nas principais queixas. Após a intervenção, realizamos uma segunda avaliação. Resultados: Constatamos que os cinco cuidadores não foram adequadamente educados pelos profissionais de saúde sobre a DH após o diagnóstico. A responsabilidade de cuidar da pessoa com DH foi agregada à sua rotina de trabalho e serviços domiciliares, ocasionando um sintoma de sobrecarga. Após a intervenção neuropsicológica online, todos os participantes relataram menos sobrecarga relacionada ao cuidado das pessoas com DH, melhoraram o autocuidado e a resolução de conflitos por meio da ampliação do repertório comportamental focado nas emoções e na comunicação. Conclusão: A intervenção neuropsicológica online pode diminuir a sobrecarga dos cuidadores em DH. Estudos mais abrangentes devem investigar esses resultados.

7.
Dement. neuropsychol ; 18: e20230115, 2024. tab
Article in English | LILACS-Express | LILACS | ID: biblio-1564442

ABSTRACT

ABSTRACT The world's population is experiencing an aging process, which is resulting in an increase in diseases such as Alzheimer's disease. Consequently, more and more people need care, which can lead to overload and harm to their family's quality of life. Objective: Identify the psychosocial factors affected by the burden on family caregivers of people with Alzheimer's disease. Methods: Forty-nine family caregivers of people with Alzheimer's disease, from a city in Minas Gerais, Brazil, participated in the study. They filled out a form of sociodemographic variables, and answered the Burden Interview Scale (BI-Zarit), Quality of Life in Alzheimer's Disease Caregiver version (CQoL-AD), the Depression, Anxiety and Stress Scale (DASS-21), the Mindfulness and Awareness Scale (MAAS) and the Clinical Dementia Rating Scale (CDR). Results: All participants were female with an average age of 54.26 (±8.99). Daughters comprised 77.55% of the sample, and 34.69% were sole caregivers. The Bi-Zarit scale positively and significantly correlated with DASS-21 Depression (r=0.440; p=0.002), DASS-21 Anxiety (r=0.415; p=0.003), DAAS-21 Stress (r=0.583; p<0.001). On the other hand, it showed a negative correlation with MAAS (r=-0.429; p=0.002) and CQoL-AD (r=-0.533; p<0.001). Conclusion: This study demonstrates that family caregivers of people with Alzheimer's disease may be overloaded, and that the heavier the burden, the lower level of attention, the worse quality of life and the greater the possibility for the caretaker to present symptoms of depression, anxiety, and stress.


RESUMO A população mundial vive um processo de envelhecimento que está resultando no aumento de doenças, como a doença de Alzheimer. Consequentemente, cada vez mais pessoas necessitam de cuidados, o que pode gerar sobrecarga e prejuízos à qualidade de vida de seus familiares. Objetivo: Identificar os fatores psicossociais afetados pela sobrecarga em cuidadores familiares de pessoas com doença de Alzheimer. Métodos: Participaram do estudo 49 cuidadores familiares de pessoas com doença de Alzheimer, de um município de Minas Gerais, Brasil. Os participantes preencheram um formulário de variáveis sociodemográficas e responderam à escala de Sobrecarga (BI-Zarit), à escala de Qualidade de Vida na Doença de Alzheimer versão Cuidador (CQdV-DA), à escala de Depressão, Ansiedade e Estresse (DASS-21), à escala de Atenção Plena e Consciência (MAAS) e à escala de Avaliação Clínica de Demência (CDR). Resultados: Todos os participantes eram do sexo feminino, com idade média de 54,26 (±8,99). As filhas representaram 77,55% da amostra e 34,69% eram cuidadoras exclusivas. A escala Bi-Zarit correlacionou-se positiva e significativamente com a DASS-21 Depressão (r=0,440; p=0,002), DASS-21 Ansiedade (r=0,415; p=0,003), DAAS-21 Estresse (r=0,583; p<0,001). Por outro lado, mostrou correlação negativa com MAAS (r=-0,429; p=0,002) e CQoL-AD (r=-0,533; p<0,001). Conclusão: Este estudo demonstra que os cuidadores familiares de pessoas com doença de Alzheimer podem estar sobrecarregados e que, quanto maior a sobrecarga, menor o nível de atenção, pior a qualidade de vida e maior a possibilidade de apresentar sintomas de depressão, ansiedade, estresse.

8.
Rev. latinoam. enferm. (Online) ; 32: e4104, 2024. tab, graf
Article in English | LILACS, BDENF | ID: biblio-1560151

ABSTRACT

Objective: to assess the efficacy of a Hospital Discharge Transition Plan in the care competence and in adherence to the therapy of dyads comprised by patients with non-communicable chronic diseases and their caregivers. Method: a controlled and randomized clinical trial; the sample was comprised by 80 dyads of patients with chronic conditions and their caregivers, randomly allocated as follows: 40 to the control group and another 40 to the intervention group. The instruments to characterize the patient-caregiver dyad, the patients' and caregivers' care competence and the patients' adherence to the treatment scale were applied. The " CUIDEMOS educational intervention" was applied to the intervention group; in turn, the control group was provided usual care with the aid of a booklet, with phone follow-up via at month 1. Results: 52.5% of the patients and 81.3% of the caregivers were women. The patients' and caregivers' mean ages were 69.5±12.6 and 47.5±13.1 years old, respectively. The Hospital Discharge Transition Plan increased the scores in the "knowledge", "uniqueness", "instrumental", "enjoying", "anticipation" and "social relations" dimensions, as well as the global care competence of the patients and family caregivers; in addition to the following factors: medications, diet, stimulants control, weight control, stress management, and global adherence to the therapy by the patient. There were no statistically significant differences between the control and intervention groups. Conclusion: the Hospital Discharge Transition Plan increased the patients' and family caregivers' care competence after the intervention, as well as the patients' adherence to the treatment. However, there were no differences between the control and intervention groups, possibly due to the similarity of the activities.


Objetivo: evaluar la eficacia del Plan Transicional de Alta Hospitalaria en la competencia para el cuidado y adherencia terapéutica de la díada paciente-cuidador con enfermedad crónica no transmisible. Método: ensayo clínico aleatorizado controlado; la muestra estuvo conformada por 80 diadas paciente-cuidador con condición crónica asignadas aleatoriamente, 40 diadas al grupo control y 40 al grupo intervención. Se aplicaron los instrumentos de caracterización de la díada paciente-cuidador, competencia para el cuidado del paciente y cuidador y la escala de adherencia al tratamiento del paciente. Se realizó la "Intervención Educativa Cuidemos" al grupo intervención y al grupo control se le brindaron los cuidados habituales con ayuda de un folleto; con seguimiento telefónico al mes. Resultados: el 52,5% de los pacientes son mujeres al igual que el 81,3% de los cuidadores. El promedio de edad en pacientes y cuidadores es de 69,5±12,6 y 47,5±13,1 años. El Plan Transicional de Alta Hospitalaria aumentó los puntajes de las dimensiones, conocimiento, unicidad, instrumental, disfrutar, anticipación y relación y la competencia global del cuidado del paciente y cuidador familiar. También, los factores medicamentos, dieta, control de estimulantes, control del peso, manejo del estrés y la adherencia terapéutica global del paciente. No hubo diferencias estadísticamente significativas entre el grupo control e intervención. Conclusión: el Plan Transicional de Alta Hospitalaria aumenta la competencia para el cuidado del paciente y cuidador familiar post intervención, y también la adherencia del paciente. Sin embargo, no hubo diferencias entre el grupo intervención y control, posiblemente debido a la semejanza de las actividades.


Objetivo: avaliar a efetividade do Plano Transicional de Alta Hospitalar na competência para o cuidado e adesão terapêutica da díade paciente-cuidador com doença crônica não transmissível. Método: ensaio clínico randomizado controlado; a amostra foi composta por 80 díades paciente-cuidador com condição crônica distribuídas aleatoriamente, sendo 40 díades para o grupo controle e 40 para o grupo intervenção. Foram aplicados os instrumentos de caracterização da díade paciente-cuidador, competência do cuidar de pacientes e cuidadores e escala de adesão ao tratamento do paciente. No grupo intervenção foi realizada a " Intervención Educativa Cuidemos " e no grupo controle foram prestados os cuidados habituais, com auxílio de folheto; com acompanhamento telefônico após um mês. Resultados: 52,5% dos pacientes são mulheres, assim como 81,3% dos cuidadores. A idade média dos pacientes e cuidadores é de 69,5±12,6 e 47,5±13,1 anos. O Plano Transicional de Alta Hospitalar aumentou os escores das dimensões conhecimento, singularidade, instrumentalidade, desfrutar, antecipação e relação e competência global do cuidado ao paciente e cuidador familiar. Também os fatores medicamentos, dieta, controle de estimulantes, controle de peso, gerenciamento de estresse e adesão terapêutica geral do paciente. Não houve diferenças estatisticamente significativas entre os grupos controle e intervenção. Conclusão: o Plano Transicional de Alta Hospitalar aumenta a competência para o cuidado do paciente e do cuidador familiar pós-intervenção, e também a adesão do paciente. Porém, não houve diferenças entre os grupos intervenção e controle, possivelmente pela semelhança das atividades.


Subject(s)
Humans , Male , Female , Patient Education as Topic , Chronic Disease , Transitional Care , Caregiver Burden , Treatment Adherence and Compliance
9.
Rev. chil. enferm ; 5(2): 57-68, dic. 2023. 3 tab
Article in Spanish | LILACS-Express | LILACS | ID: biblio-1526473

ABSTRACT

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.

10.
Rev. colomb. enferm ; 22(1)Mayo 30, 2023.
Article in Spanish | LILACS, BDENF, COLNAL | ID: biblio-1442440

ABSTRACT

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.

11.
Chinese Journal of Neurology ; (12): 504-512, 2023.
Article in Chinese | WPRIM | ID: wpr-994860

ABSTRACT

Objective:To explore the factors on malnutrition or risk of malnutrition in patients with Alzheimer′s disease (AD)-related cognitive impairment,and to further analyze the association between the severity of behavioral and psychological symptoms in dementia (BPSD) and nutritional status.Methods:The clinical data of 247 patients with AD-related cognitive impairment were collected continuously from the Chinese Imaging, Biomarkers and Lifestyle Study of Alzheimer′s Disease (CIBL) cohort between June 1, 2021 and August 31, 2022. The patients were divided into well-nourished group ( n=128) and malnourished group ( n=119) according to the scores of Mini-Nutritional Assessment scale (MNA). The sociodemographic data (sex, age, body mass index, waist-to-hip ratio, education level), the medical history of olfactory dysfunction, combination with more than two chronic diseases, and gastrointestinal diseases, presenting BPSD, and the scores of the Mini-Mental State Examination (MMSE), Montreal Cognitive Assessment (MoCA), Neuropsychiatric Inventory (NPI), Activity of Daily Living (ADL), Caregiver Burden Inventory (CBI) and Dietary Diversity Score (DDS) were compared between the two groups. The factors with statistically significant differences in hypothesis test and univariate Logistic regression analysis were enrolled in multivariate Logistic regression analysis to further identify independent factors associated with malnutrition in patients with AD-related cognitive impairment. Furthermore, the association between NPI scores and MNA scores was analyzed by Spearman′s rank correlation test. Results:Compared with those in the well-nourished group, patients in the malnourished group had higher age [(66.70±7.01) years vs (69.14±8.87) years, t=-2.39, P=0.018], lower body mass index [(24.68±2.84) kg/m 2vs (22.69±3.63) kg/m 2, t=4.78, P<0.001], and higher proportion of presenting BPSD [22.66% (29/128) vs 76.47% (91/119), χ 2=71.49, P<0.001]; lower scores of MMSE, MoCA, and DDS [24.27±4.69 vs 18.95±8.40, t=6.09; 20.29±5.18 vs 14.55±8.12, t=6.56; 8.00 (8.00, 9.00) vs 8.00 (7.00, 8.00), Z=-4.66; all P<0.001], and higher scores of NPI, ADL and CBI [1.00 (0, 6.00) vs 10.00 (2.00, 25.00), Z=-6.50; 20.00 (20.00, 22.00) vs 27.00 (20.00, 40.00), Z=-7.08; 1.00 (0, 14.75) vs 12.00 (2.00, 35.00), Z=-5.13; all P<0.001]. There were no statistically significant differences in the sex, waist-to-hip ratio, education level, and the medical history of olfactory dysfunction, combination with more than two chronic diseases, and gastrointestinal diseases between the two groups. The multiple Logistic regression analysis demonstrated that the decreased body mass index ( OR=0.79, 95% CI 0.70-0.89, P<0.001), presenting BPSD ( OR=7.84, 95% CI 3.67-16.73, P<0.001), elevated ADL scores ( OR=1.15, 95% CI 1.06-1.24, P<0.001) and CBI scores ( OR=0.98, 95% CI 0.97-1.00, P=0.026), and decreased scores of DDS ( OR=0.66, 95% CI 0.51-0.84, P=0.001) were independently associated with malnutrition in patients with AD-related cognitive impairment. The MNA scores were significantly negatively associated with NPI scores ( r=-0.483,95% CI -0.58--0.38, P<0.001). Conclusions:The decreased body mass index, dietary diversity, and ability of daily living, and presenting BPSD and heavy burden of caregivers can independently contribute to the malnutrition in patients with AD-related cognitive impairment. The more serious the BPSD, the worse the nutritional status.

12.
Zhongnan Daxue xuebao. Yixue ban ; (12): 1243-1251, 2023.
Article in English | WPRIM | ID: wpr-1010348

ABSTRACT

OBJECTIVES@#The interaction between elderly people with disabilities and their caregivers and the improvement of caregiver burden is important for elderly people with disabilities and their caregivers. This study aims to explore the multiple mediating roles of caregiver's caring ability and resilience in depression in the elderly people with disabilities on caregiver burden.@*METHODS@#A total of 246 elderly people with disabilities at home and their family caregivers from 5 regions were investigated by questionnaires, including the General Information Questionnaire, the Patient Health Questionnaire, the Family Caregiver Task Inventory, the Resilience Scale, and the Caregiver Burden Interview. A multiple mediation model was constructed and tested.@*RESULTS@#Univariate analysis showed that the caregiver burden of disabled elderly men is higher than that of women; the lower the level of self-care of disabled elderly individuals, the greater the burden on their caregivers (both P<0.05). Correlation analysis showed that depression of the disabled elderly people was positively correlated with the caregiver burden (P<0.01). Caregiver's caring ability was positively correlated with caregiver's resilience (P<0.01), and both were negatively correlated with caregiver burden (both P<0.01). The multiple mediating effects of caregiver caring capacity and resilience between depression of the disabled elderly people and caregiver burden were significant, with the mediating effects of caregiver caring capacity and resilience accounting for 68.9% and 26.2% of the total effect, respectively.@*CONCLUSIONS@#Depression in the elderly people with disabilities can indirectly affect caregiver burden through the caregiver's caring ability and resilience. Families of older people with disabilities need to focus on both the elderly and their caregivers. It is possible to reduce the caregiver burden and improve the physical and mental health of the dyads by empowering the caregiver's caring ability and resilience.


Subject(s)
Male , Humans , Female , Aged , Caregiver Burden , Disabled Persons , Caregivers , Surveys and Questionnaires , Mental Health
13.
Article in Chinese | WPRIM | ID: wpr-990424

ABSTRACT

Objective:To investigate the relationship and intrinsic mechanism between disease uncertainty, coping style, social support and caregiver burden of primary caregivers of stroke, in order to provide a theoretical basis for reducing the burden of care and improving the quality of care for stroke caregivers.Methods:In this study, the main caregivers of 314 stroke patients hospitalized in Xinjiang Uygur Autonomous Region People's Hospital from December 2021 to May 2022 were selected by convenience sampling method, and cross-sectional surveys were conducted using the general data questionnaire, the Family Scale of Disease Uncertainty, the Simple Coping Style Questionnaire, the Social Support Rating Scale, and the Caregiver Burden Scale. Model 4 in Hayes′ SPSS-Process program was used to test the mediation effect, and Model 15 was used to test the mediation effect of social support.Results:The positive predictive effect of disease uncertainty in the primary caregiver of stroke patients on the burden of caregivers was significant ( β=0.665, P<0.01). Active coping played a partial mediating role between disease uncertainty and caregiver burden, with a mediating effect of 0.306 and a mediating effect of 31.8%. The interaction between disease uncertainty and social support had a significant predictive effect on caregiver burden ( β=-0.033, P<0.05), and the interaction item between active response and social support had a significant predictive effect on caregiver burden ( β=-0.019, P<0.05). Conclusions:Positive coping is an important psychological mechanism between disease uncertainty and caregiver burden, and social support can alleviate the influence of disease uncertainty on caregiver′s burden, and can also strengthen the weakening effect of positive coping on caregiver′s burden.

14.
Texto & contexto enferm ; 32: e20230007, 2023. tab
Article in English | LILACS-Express | LILACS, BDENF | ID: biblio-1450590

ABSTRACT

ABSTRACT Objective: to develop a unitary caring program for mothers of children with Congenital Zika Syndrome. Method: this is a methodological study, based on Unitary Caring Science, developed in two phases: creation, consisting of six moments, and content validity, through the participation of 36 experts on the subject, professional caregivers and mothers. The Content Validity Index and the Content Validity Ratio were used for data analysis. Results: the program was named CACTO, composed of seven care modalities: Taking care of my mind; Upright and correct position; Taking care of my sleep; Family that is together; Mirror mirror on the wall; Mother who takes care of mother; Facing prejudices. CACTO was validated with a Content Validity Index ≥0.88 and critical Content Validity Ratio values greater than or equal to the cutoff point defined for each group of experts. Conclusion: the translation of Unitary Caring Science into a care program encourages professionals to promote innovative care, valuing acceptance, autonomy, citizenship and critical awareness, advocating in favor of emancipatory interactional care. CACTO is a technological innovation that can transform professional care, promote the resolution of mothers' health needs and enhance the quality of life of children with Congenital Zika Syndrome, family and caregivers themselves.


RESUMEN Objetivo: desarrollar un programa de atención unitaria para madres de niños con síndrome congénito causado por el virus Zika. Método: estudio metodológico, basado en la Ciencia del Cuidado Unitario, desarrollado en dos fases: creación, compuesta por seis momentos, y validación de contenido a través de la participación de 36 expertos en el tema, cuidadores profesionales y madres. Para el análisis de los datos se utilizaron el Índice de Validez de Contenido y la Razón de Validez de Contenido. Resultados: el programa se denominó CACTO, compuesto por siete modalidades de atención: Cuidando mi mente; Posición erguida y correcta; Cuidando mi sueño; Familia que llega junta; Espejo, espejo mío; Madre que cuida a la madre; Enfrentando los prejuicios. CACTO fue validado con un Índice de Validez de Contenido ≥0.88 y valores críticos de Relación de Validez de Contenido mayores o iguales al punto de corte definido para cada grupo de expertos. Conclusión: la traducción de la Ciencia del Cuidado Unitario en un programa de cuidado alienta a los profesionales a promover un cuidado innovador, valorando la aceptación, la autonomía, la ciudadanía y la conciencia crítica, abogando por el cuidado interaccional emancipador. El CACTO es una innovación tecnológica que puede transformar la atención profesional, promover la resolución de las necesidades de salud de las madres y mejorar la calidad de vida de los niños con síndrome congénito causado por el virus Zika, la familia y los propios cuidadores.


RESUMO Objetivo: desenvolver um programa de cuidado unitário às mães de crianças com Síndrome Congênita do vírus Zika. Método: estudo metodológico, fundamentado na Ciência do Cuidado Unitário, desenvolvido em duas fases: criação, constituída por seis momentos, e validação de conteúdo mediante participação de 36 experts na temática, cuidadoras profissionais e mães. O Índice de Validação de Conteúdo e o Content Validity Ratio foram utilizados para análise dos dados. Resultados: o programa foi nomeado de CACTO, composto por sete modalidades de cuidado: Cuidando da minha mente; Posição ereta e correta; Cuidando do meu sono; Família que chega junto; Espelho espelho meu; Mãe que cuida de mãe; Enfrentando preconceitos. O CACTO foi validado com Índice de Validação de Conteúdo ≥0,88 e valores do Content Validity Ratio crítico maior ou igual ao ponto de corte definido para cada grupo de experts. Conclusão: a translação da Ciência do Cuidado Unitário em programa de cuidado estimula as profissionais a promoverem cuidados inovadores, valorizando o acolhimento, autonomia, cidadania e consciência crítica, advogando em favor do cuidado interacional emancipatório. O CACTO é uma inovação tecnológica que pode transformar os cuidados profissionais, promover resolutividade das necessidades de saúde das mães e potencializar qualidade de vida da criança com Síndrome Congênita do vírus Zika, família e das próprias cuidadoras.

15.
Article in Portuguese | LILACS, CONASS, ColecionaSUS, SES-GO | ID: biblio-1523655

ABSTRACT

A tetraplegia caracteriza-se por uma desordem na estrutura da medula espinhal na altura cervical e exige cuidados que vão de aspectos físicos a cuidados mentais e sociais. Estudos comprovam que cuidadores são, na maioria, familiares do sexo feminino. A mulher cuidadora de seu cônjuge passa a sofrer com sobrecargas e perda de atividades matrimoniais. Objetivo: Compreender a percepção das mulheres principais cuidadoras de seus parceiros, que possuem tetraplegia decorrente de uma lesão medular, sobre as perdas ocupacionais. Metodologia: Estudo descritivo exploratório qualitativo, realizado através de questionário sociodemográfico e entrevistas semi-estruturadas, com amostra por saturação dos dados Foram entrevistadas oito cuidadoras que aceitaram participar da pesquisa e assinaram o Termo de Consentimento Livre e Esclarecido (TCLE). As entrevistas foram gravadas, transcritas e os dados analisados utilizando-se a análise temática de Bardin. Resultados: As entrevistadas informaram possuir idade entre 28 e 55 anos, sendo a maioria de religião evangélica e baixa renda. Relataram sobrecarga devido à rotina de trabalho integral e desvalorização do seu serviço, apresentando prejuízo no papel de esposa e realização do autocuidado. Considerações finais: As cuidadoras entrevistadas perceberam perdas nos papeis de esposa e no autocuidado, apresentando uma rede de apoio insuficiente, demandando maior participação do sistema de saúde, necessitando de implementação de novas políticas públicas


Tetraplegia is characterized by a disorder in the structure of the spinal cord at the cervical level and requires care ranging from physical aspects to mental and social care. Studies show that caregivers are mostly female family members. The woman who cares for her spouse starts to suffer from overloads and loss of marital activities. Objective: To understand the perception of women who are the main caregivers of their partners who have tetraplegia due to a Spinal Cord Injury, about occupational losses. Methodology: Descriptive and qualitative exploratory study, carried out using a socio-demographic questionnaire and semi-structured interviews, with a sample based on data saturation. Eight caregivers who agreed to participate in the research and signed the Free and Informed Consent Term were interviewed. The interviews were recorded, transcribed and Bardin's thematic analysis was used for data analysis. Results: The interviewees were between 28 and 55 years old, most of whom were evangelical and had a low income. They reported overload due to the full-time work routine and devaluation of their service, showing impairment in the role of wife and self-care. Final considerations: The interviewed caregivers noticed losses in the roles of wife and in self-care, presenting an insufficient support network, demanding greater participation of the health system, requiring the implementation of new public policies


Subject(s)
Humans , Male , Female , Adult , Middle Aged , Quadriplegia , Caregivers/psychology , Caregiver Burden
16.
Texto & contexto enferm ; 32: e20230100, 2023.
Article in English | LILACS-Express | LILACS, BDENF | ID: biblio-1523021

ABSTRACT

ABSTRACT Objective: to analyze the existence of overload in family caregivers of older adults in the physical and psychological health and family support dimensions. Method: a qualitative study conducted with 23 participants from Dianópolis, Tocantins, Brazil. Data were collected through semi-structured interviews in September 2022. Data analysis was performed using content analysis in Minayo's thematic modality, which includes ordering, classification and final analysis of data. Results: the results show that the exercised role of caregiver is related to social representation, which is enhanced: by the context, cultural and family values; by the naturalization of the role of women as caregivers; by increasing the burden due to excessive responsibility and lack of support from other family members; and by the presence of psychological symptoms overlapping physical symptoms in caregivers. Conclusion: it is concluded that the support of professionals is essential to rethink new practices and ways of producing care through individual or collective activities, with a view to preventing caregivers from becoming ill.


RESUMEN Objetivo: analizar la existencia de sobrecarga de cuidadores familiares de ancianos en las dimensiones de salud física y psicológica y apoyo familiar. Método: estudio cualitativo, realizado con 23 participantes de Dianópolis, Tocantins, Brasil. Los datos fueron recolectados a través de entrevistas semiestructuradas en septiembre de 2022. El análisis de datos se realizó mediante análisis de contenido en la modalidad temática de Minayo, que incluye ordenamiento, clasificación y análisis final de datos. Resultados: los resultados muestran que el ejercicio del rol de cuidador está relacionado con la representación social, que se ve potenciada: por el contexto, los valores culturales y familiares; por la naturalización del rol de la mujer como cuidadora; al aumentar la carga por exceso de responsabilidad y falta de apoyo de otros miembros de la familia; y por la presencia, en los cuidadores, de síntomas psicológicos superpuestos a los físicos. Conclusión: se concluye que el apoyo de los profesionales es fundamental para repensar nuevas prácticas y formas de producir cuidado, a través de actividades individuales o colectivas, con miras a prevenir que los cuidadores se enfermen.


RESUMO Objetivo: analisar a existência de sobrecarga de cuidadores familiares de idosos nas dimensões de saúde física, psicológica e apoio familiar. Método: estudo qualitativo, realizado com 23 participantes de Dianópolis, Tocantins, Brasil. Os dados foram coletados mediante entrevistas semiestruturadas em setembro de 2022. A análise dos dados foi efetuada utilizando-se a análise de conteúdo na modalidade temática de Minayo, que abrange a ordenação, a classificação e a análise final dos dados. Resultados: os resultados evidenciam que o exercício da função de cuidador está relacionado à representação social, a qual é potencializada: pelo contexto, valores culturais e familiares; pela naturalização da função da mulher como cuidadora; pela potencialização da sobrecarga em razão do excesso de responsabilidade e falta de apoio de outros membros da família; e pela presença, nos cuidadores, de sintomas psicológicos sobrepondo-se aos físicos. Conclusão: conclui-se que o apoio dos profissionais é essencial para repensar novas práticas e formas de produzir o cuidado, por meio de atividades individuais ou coletivas, com vistas a prevenir o adoecimento dos cuidadores.

17.
Dement. neuropsychol ; 17: e20230030, 2023. tab, graf
Article in English | LILACS-Express | LILACS | ID: biblio-1528510

ABSTRACT

ABSTRACT Caregivers of people living with dementia (PLwD) have a high burden degree that leads to health issues, including sleep. Objective: This study aimed to analyze the impacts of the caregiving burden on caregiver's sleep disturbances. Methods: This systematic review involved a qualitative analysis of publications on Web of Science and Pubmed/Medline databases published between February 2018 and August 2022. Results: A total of 27 studies were identified and analyzed. Caregiver's sleep presents impairments in sleep latency, sleep fragmentation, sleep duration, subjective sleep quality, daytime dysfunction, and insomnia. Caregiver's distress and depressive symptoms have a dual relationship with sleep problems. Conclusion: Sleep disturbances presented by caregivers are correlated with higher burden levels and lead to more vulnerability to psychiatric symptoms and health issues.


RESUMO Cuidadores de pessoas com demência possuem alto grau de sobrecarga que impacta de forma objetiva o sono e suas dimensões. Objetivo: Este estudo teve o objetivo de analisar o impacto da sobrecarga nas alterações do sono do cuidador. Métodos: Esta revisão sistemática envolveu a análise de resultados quantitativos e qualitativos de publicações das bases de dados Web of Science e PubMed/ Medical Literature Analysis and Retrieval System Online (Medline) publicadas entre fevereiro de 2018 e agosto de 2022. Resultados: O total de 27 estudos foi identificado e analisado. Cuidadores apresentam prejuízos na latência, fragmentação, duração e qualidade subjetiva do sono, disfunção diurna e insônia. O estresse e sintomas depressivos apresentados pelo cuidador possuem com o sono uma relação bidirecional. Conclusão: Os distúrbios do sono apresentados pelos cuidadores estão correlacionados com o alto nível de sobrecarga e geram maior vulnerabilidade para sintomas psiquiátricos e problemas de saúde.

18.
Rev. odontol. UNESP (Online) ; 52: e20230030, 2023. graf
Article in English | LILACS, BBO | ID: biblio-1530301

ABSTRACT

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


Subject(s)
Oral Hygiene , Quality of Life , Surveys and Questionnaires , Data Interpretation, Statistical , Caregivers , Autism Spectrum Disorder
19.
Fisioter. Pesqui. (Online) ; 30: e23003023en, 2023. tab
Article in English | LILACS-Express | LILACS | ID: biblio-1520918

ABSTRACT

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.

20.
Rev. bras. enferm ; Rev. bras. enferm;76(6): e20230052, 2023. tab
Article in English | LILACS-Express | LILACS, BDENF | ID: biblio-1529789

ABSTRACT

ABSTRACT Objective: to assess the burden of spouse and non-spouse caregivers of older adults with stroke-induced-dependency after discharge from a university hospital's Specialized Care Stroke Unit in southern Brazil. Methods: a longitudinal survey. The sample consisted of 48 consenting caregivers, among which 20 were spouse caregivers. Data were collected between May 2016 and July 2018. One week after discharge, caregivers completed a sociodemographic profile, the Functional Independence Measure, and the Caregiver Burden Scale. Burden was also measured two months after discharge. Data were analyzed using Multivariate Analyses of Variance. Results: regarding time 1, non-spouse caregivers experienced greater burden with respect to social isolation (p = .01). Along with a persistently greater sense of isolation (p=.04), non-spouse caregivers felt far greater general strain (p =.01). Conclusion: statistically significant differences in burden over time highlight the importance of assessing caregiver burden after discharge and the need for a formal support program.


RESUMO Objetivo: avaliar sobrecarga de cuidadores cônjuges e não cônjuges de idosos dependentes por AVC pós-alta da Unidade de Atendimento Especializado em AVC de um hospital do sul do Brasil. Método: pesquisa longitudinal. Amostra foi composta por 48 cuidadores, sendo 20 cuidadores cônjuges. Dados foram coletados entre maio/2016 e julho/2018. Uma semana pós-alta, verificou-se a capacidade funcional dos idosos pela Medida de Independência Funcional, o perfil sociodemográfico dos cuidadores e a sobrecarga com a Caregiver Burden Scale. A sobrecarga também foi medida dois meses pós-alta. Dados foram analisados por meio de Análise Multivariada de Variância. Resultados: no tempo 1, não cônjuges apresentaram maior sobrecarga em relação ao isolamento social (p=0,01). Juntamente com isolamento (p=0,04), não cônjuges sentiram tensão geral muito maior (p=0,01). Conclusão: diferenças estatisticamente significativas na sobrecarga ao longo do tempo destacam a importância de avaliar a sobrecarga do cuidador pós-alta e a necessidade de um programa formal de apoio.


RESUMEN Objetivo: evaluar la carga de los cuidadores conyugales y no conyugales de ancianos con dependencia inducida por ictus después del alta de la Unidad de Atención Especializada en Ictus de un hospital del sur de Brasil. Métodos: una encuesta longitudinal, con 48 cuidadores (20 cónyuges). Datos fueron recolectados entre mayo/2016 y julio/2018. Una semana después del alta, se aplicó la Medida de Independencia Funcional a los ancianos y la Caregiver Burden Scale a los cuidadores. Los datos se analizaron mediante análisis multivariado de varianza. Resultados: en tiempo 1, los cónyuges experimentaron mayor carga en relación al aislamiento social (p=0,01). Los cónyuges sintieron una tensión general y sensación de aislamiento mucho mayor (p=0,01; p=0,04). Conclusión: las diferencias estadísticamente significativas en la carga a lo largo del tiempo resaltan la importancia de evaluar la carga del cuidador después del alta y la necesidad de un programa de apoyo formal.

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