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.

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.

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.

Factors on malnutrition in patients with Alzheimer′s disease-related cognitive impairment: a preliminary analysis / 中华神经科杂志

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.

The effect of disease uncertainty on caregiving burden in major caregivers of stroke:an intermediary model with regulation / 中国实用护理杂志

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.

Investigation and analysis of knowledge status and educational needs of caregivers for children with epilepsy / 中国实用护理杂志

Objective:To determine the level of epilepsy knowledge of caregivers for children with epilepsy and analyze its influencing factors, and investigate caregivers' educational needs and their acceptance for remote education, in order to provide reference for clinical telenursing education.Methods:From March to September 2022, 221 caregivers of epileptic children in the outpatient department and ward of neurology department of Xuzhou Children's Hospital were recruited by convenient sampling method for cross-sectional investigation. The status of caregivers' knowledge and educational needs were investigated by the general information questionnaire, epilepsy knowledge questionnaire, epilepsy knowledge needs questionnaire and telenursing acceptance questionnaire, and the influencing factors of knowledge level were analyzed by multiple linear regression.Results:The average score of epilepsy knowledge of caregivers was (15.68 ± 6.43) points. The course of disease, taking medicine on time, education background and monthly income of caregivers were the influencing factors of caregivers' knowledge level, and the difference was statistically significant ( P <0.05). 94.12% (208/221)- 96.38% (213/221) of the caregivers had high educational needs, and they had the highest demand for safety guidance during seizures. Caregivers' acceptance of remote education was moderate, ranging from 34.39% (76/221) to 71.95% (159/221). Conclusions:Caregivers' epilepsy knowledge needs to be improved. Medical institutions should formulate education plans according to the different characteristics of caregivers. Caregivers have a high demand for nursing knowledge, and medical staff should increase health education. Before giving health education based on remote nursing platform, we should fully understand the attitude of caregivers to the platform, so that they can master disease knowledge, strengthen their disease management ability, and improve the quality of life of children.

Construction of intervention program for physical and mental adjustment for primary caregivers of cancer patients based on network cognitive behavior therapy / 中国实用护理杂志

Objective:Based on cognitive behavioral therapy, to construct a physical and mental adjustment intervention plan for the main caregiver of cancer patients through the network platform.Methods:Through evidence-based literature published from July 2012 to July 2022 screening and evaluation, combined with qualitative interviews for 10 primary caregivers of cancer patients, the intervention plan for physical and mental adjustment of the main caregivers of cancer patients was preliminarily formulated. After consultation with Delphi experts (15 cases) through two rounds, the intervention plan was finally determined.Results:In the two rounds of expert letter inquiries, 15 questionnaires were distributed and 15 valid questionnaires were recovered. The effective recovery rate was 100.00% and the expert authority coefficient were 0.89 and 0.90 in the two rounds of expert letter inquiries respectively, the Kendall harmony coefficients were 0.279 and 0.323 respectively, and the differences were all statistically significant ( P<0.01). The intervention plan for physical and mental adjustment ofthe main caregivers of cancer patients included 5 first-level indicators (basic knowledge, symptom education, home care knowledge, relaxation training, social support), 27 second-level indicatorsand 54 third-level indicators. Conclusions:The method of the psychosomatic regulation intervention program is scientific and practical, which can be initially applied to the psychological adjustment of the main caregivers of cancer patients, so as to provide a reference for improving their negative emotions.

Analysis of influencing factors of caregiver preparedness at discharge of patients with chronic heart failure based on the individual and family self-management theory / 中国实用护理杂志

Objective:A structural equation model of the influencing factors on caregiver preparedness at discharge of patients with chronic heart failure was constructed based on the individual and family self-management theory, and the main paths influencing caregiver preparedness were explored.Methods:This study was a cross-sectional survey. A total of 345 caregivers of patients with chronic heart failure who were hospitalized in the Fourth Affiliated Hospital of China Medical University from October 2020 to August 2021 were selected as research objects by convenience sampling method, and they were investigated by Caregiver Preparedness Scale, Family APGAR Index, Herth Hope Index, Social Support-Rating Scale, Simplified Coping Style Questionnaire. The influencing factors on caregiver preparedness at discharge of patients with chronic heart failure were analyzed.Results:The total score of Caregiver Preparedness Scale, Family APGAR Index, Herth Hope Index, Social Support-Rating Scale, and Positive and Negative Coping Subscale of Simplified Coping Style Questionnaire in patients with chronic heart failure was (20.79 ± 4.92), (8.05 ± 1.43), (35.34 ± 4.47), (43.89 ± 6.56), (24.38 ± 5.21), (11.21 ± 4.26) points. Caregiver preparedness in patients with chronic heart failure was positively correlated with family function, hope, positive coping and social support ( r values were 0.213-0.383, all P<0.01), and negatively correlated with negative coping ( r=-0.546, P<0.01). Family function and social support in patients with chronic heart failure could directly or indirectly affect caregiver preparedness (total effect value: 0.380, 0.212), hope and negative coping directly affected caregiver preparedness (total effect value: 0.200, -0.433), and could account for 39% of the total variation in caregiver preparedness. Conclusions:Caregiver preparedness of patients with chronic heart failure needs further improvement. The effective ways to improve caregiver preparedness are to pay attention to family function, improve hope level, increase social support and reduce negative coping.

Current status and influencing factors of anticipatory grief among family caregivers of first stroke patients / 中国实用护理杂志

Objective:To investigate the current situation of expected sadness of family caregivers of first stroke patients and analyze its influencing factors, so as to provide reference for the formulation of psychological decompression intervention program for family caregivers of stroke patients.Methods:Convenience sampling method was used to conduct cross-sectional survey of 212 family caregivers of first stroke patients who were hospitalized in the First Affiliated Hospital of Shandong First Medical University from March 2020 to May 2021, using general information questionnaires and Anticipatory Grief Scale and Connor-Davidson Resilience Scale to investigate and anlalyzed its influencing factors.Results:The scare of anticipatory grief of the caregivers of first stroke patients was 87.93 ± 17.36. The results of multiple stepwise regression analysis showed that the age of family caregivers, psychological elasticity, the degree of relationship with patients, patients′ cognitive ability and self-care ability were the influencing factors of anticipatory grief of family caregivers of first stroke patients ( t values were -6.73 -11.77, P <0.05). Conclusions:The caregivers of first stroke patients have serious anticipatory grief. Staff should pay attention to the psychological conditions of the family caregivers and take effective measures to promote their physical and mental health.

The influence of acceptance and commitment therapy on the psychological flexibility, self-compassion, anxiety and depression of the primary caregivers of patients with primary liver cancer / 中国实用护理杂志

Objective:To explore the intervention effect of acceptance and commitment therapy on the psychological flexibility, self-compassion, anxiety and depression of the primary caregivers of patients with primary liver cancer, so as to provide reference for the clinical care of the primary caregivers of cancer patients.Methods:This was a prospective study. A total of 80 primary caregivers of patients with primary liver cancer treated in Tianyou Hospital Affiliated to Wuhan University of Science and Technology from July to December 2021 were selected as the observation objects, and they were randomly divided into the control group and the intervention group according to the random drawing method, with 40 cases in each group. The control group was given routine nursing measures, while the intervention group was given acceptance and commitment therapy on the basis of routine nursing. The intervention effect was evaluated by the Acceptance and Action Questionnaire-2nd Edition (AAQ-Ⅱ), Self-Compassion Scale Short-Form (SCS-SF) and Hospital Anxiety and Depression Scale (HADS) before the intervention, on the day of discharge, and one month after discharge.Results:Finally, 71 primary caregivers completed the intervention and follow-up, 36 in the control group and 35 in the intervention group. Before the intervention, there was no statistically significant difference in the scores of AAQ-Ⅱ, SCS-SF, Anxiety subscale of HADS(HADS-A) and Depression subscale of HADS(HADS-D) between the two groups ( P>0.05). The AAQ-Ⅱscores of the intervention group on the day of discharge and one month after discharge were (19.63±2.59), (19.12 ± 2.20) points, which were significantly lower than those of the control group (23.14 ± 2.49), (22.56 ± 2.40) points. The differences were statistically significant ( t=5.83, 6.25, both P<0.01). The SCS-SF scores of the intervention group on the day of discharge and one month after discharge were (39.34 ± 2.68), (39.89 ± 2.81) points, which were significantly higher than those of the control group (36.69 ± 3.08), (37.72 ± 2.41) points, the differences were statistically significant ( t=-3.86, -3.49, both P<0.01). The HADS-A/HADS-D scores of the intervention group on the day of discharge and one month after discharge were (9.31 ± 1.95), (9.09 ± 1.60) points and (8.80 ± 2.15), (8.54 ± 1.75) points,which were significantly lower than those of the control group(11.42 ± 1.50), (11.03 ± 1.70) points and (10.11 ± 1.92), (10.03 ± 1.84) points, the differences were statistically significant( t values were 2.71-5.10, all P<0.01). The scores of AAQ-Ⅱ, SCS-SF, HADS-A and HADS-D of the two groups were analyzed by repeated measures analysis of variance, and there were significant differences in time effect, inter-group effect and interaction effect ( F vaules were 3.42-37.90, all P<0.05). Conclusions:Acceptance and commitment therapy can improve the self-compassion and psychological flexibility, reduce anxiety and depression of the primary caregivers of patients with primary liver cancer.

A Systematic Review on Caregiver’s Burden Among Caregivers of Dementia Patients in Malaysia

@#Introduction: Increasing prevalence of dementia and the associated caregiving burden are expected due to longer life expectancy. This review aimed to critically assess dementia-driven caregiving burden and the associated factors in Malaysia. Methods: A systematic search using several combinations of keywords was conducted in Ovid Medline, PubMed, Science Direct, ProQuest, and Ebscohost databases. The primary outcome was the score or level of caregiver burden, while the secondary outcome was the factors associated with such burden. The quality of the individual articles was assessed using the Newcastle–Ottawa Scale and the Joanna Briggs Institute checklist. Results: The systematic search resulted in seven studies being reviewed, consisting of six cross-sectional studies and one quasi-experimental study. Using the Zarit Burden Interview, two studies reported moderate caregiver burden with mean scores of 35.4 (15.08) and 46.0 (17.0). High levels of burden or strain were reported using the Caregiver Strain Index in other studies. The three main associated factors with burden identified in these studies were the presence of behavioural and psychological symptoms of dementia (BPSD), higher education level, and lack of social support. Conclusion: Moderate to severe caregiving burden level were found to be experienced by dementia caregivers in this country. High education, lack of support, as well as taking care of patient with BPSD being the most prominent factors associated with burden. Therefore, burden should be regularly assessed among the dementia caregivers especially among those with lack of social support and manage family members with BPSD, as to prevent adverse outcome from dementia caregiving.

Dyadic transmission of depression in the elderly people with disabilities to caregiver burden: Multiple mediating roles of caring ability and resilience / 中南大学学报(医学版)

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.

Qualitative Study on the Emotional Experience of Family Caregivers of Inpatients with Pemphigus / 中国医学伦理学

【Objective:】 To study the emotional experience of family caregivers of patients with Pemphigus, and to provide reference for them to formulate targeted intervention and support. 【Methods:】 Using the phenomenological research method in qualitative research and purposive sampling method, in-depth semi-structured interviews were conducted with 13 family caregivers of patients with pemphigus from September 2021 to June 2022. Colaizzi analysis method was used for data analysis. 【Results:】 The emotional experience of family caregivers of inpatients with pemphigus was summarized into five themes: lack of cognition, high financial and psychological burden, more concerns about the use of hormone drugs in treatment, provide positive guidance and support for patients, negative effect on the quality of life. 【Conclusion:】 Nursing staff should pay attention to the emotional experience of family caregivers, enhance disease knowledge and medication explanation, conduct psychological counseling, and increase treatment confidence, so as to achieve the purpose of promoting the rehabilitation of patients.