Tecnologia educacional para cuidadores de pessoas idosas com limitações pós-acidente vascular cerebral / Educational technology for caregivers of older people with post-stroke limitations

Resumo: O Acidente Vascular Cerebral (AVC) é caracterizado como um déficit neurológico atribuído a uma lesão aguda do sistema nervoso central por uma causa vascular. Constitui-se uma das principais causas de mortes, acometendo principalmente a população idosa e, diante das incapacidades impostas pelo AVC, surge a necessidade de cuidados, que são frequentemente realizados pelo cuidador familiar. Este estudo teve como objetivo construir uma tecnologia educacional direcionada aos cuidadores familiares de pacientes idosos pós-Acidente Vascular Cerebral, dependentes de cuidados básicos para as atividades de vida diária, isto é, uma tecnologia em formato de vídeo, constituindo o produto desta pesquisa. Trata-se de estudo metodológico, realizado em uma unidade de internamento de pacientes neurológicos em um hospital universitário de grande porte localizado na região Sul do país. A amostra foi composta por 14 juizes especialistas em neurologia e/ou gerontologia do território nacional e 15 cuidadores familiares de idosos. A coleta de dados ocorreu no período de dezembro a fevereiro de 2024. O estudo foi composto por três etapas: 1) Pré-produção: construção da sinopse, argumento, roteiro e storyboard do vídeo educacional, para essa etapa foi realizada uma revisão integrativa, visando fundamentação teórica para o desenvolvimento do roteiro para tecnologia educacional com posterior validação do conteúdo do vídeo por juízes especialistas, por meio do Instrumento de Validação de Conteúdo Educacional em Saúde (IVCES). Para análise do instrumento foi utilizado o Índice de Validade de Conteúdo (IVC) e o valor considerado aceitável quando o resultado da proporção de concordância entre os juízes especialistas foi igual ou superior a 0,78; 2) Produção: construção do vídeo educacional e avaliação do vídeo pelos cuidadores familiares dos idosos internados na Neurologia, por meio do instrumento Suitability Assessment of Materials (SAM), com avaliação do conteúdo, exigência de alfabetização, ilustrações, layout e apresentação e adequação cultural; 3) Pós-produção: edição e versão final do vídeo educacional para posterior divulgação. Como resultado da pesquisa, identificado na literatura quais orientações os cuidadores e/ou familiares de pessoa idosas que sofreram AVC deveriam receber sobre os cuidados pós-AVC no preparo para a alta hospitalar. Realizada produção do roteiro do vídeo, que foi validado pela concordância dos juízes especialistas (IVC= 0,93). O vídeo foi composto por 51 cenas em resolução Full HD, com duração de 8 minutos. Houve 99% de concordância entre os cuidadores familiares de idosos participantes, tornando-o adequado e validado. Após finalização dessa etapa, foi preenchido o requerimento para emissão do certificado de produto brasileiro do vídeo educacional na Agência Nacional do Cinema, divulgado em plataforma digital YouTube. O vídeo demonstrou-se uma ferramenta que auxiliou na aquisição de conhecimentos fundamentais sobre o tema, uma vez que é uma forma de disseminar informações de forma atraente, simples, dinâmica e democrática. O produto desenvolvido tem a potencialidade de ser replicado em outras unidades da instituição que atendam ao mesmo perfil de pacientes, uma vez que a tecnologia proporciona orientações e esclarecimentos aos cuidadores familiares de idosos sobre o tema.

Abstract: Cerebral Vascular Accident (CVA) is characterized as a neurological deficit attributed to an acute injury of the central nervous system due to a vascular cause. It is one of the main causes of death, affecting mainly the elderly population and, given the disabilities imposed by stroke, the need for care arises, which is often carried out by the family caregiver. This study aimed to build an educational technology aimed at family caregivers of elderly post-stroke patients, dependent on basic care for activities of daily living, that is, a technology in video format, constituting the product of this research. This is a methodological study, carried out in an inpatient unit for neurological patients in a large university hospital located in the southern region of the country. The sample was made up of 14 judges specializing in neurology and/or gerontology from the national territory and 15 family caregivers of the elderly. Data collection took place from December to February 2024. The study consisted of three stages: 1) Preproduction: construction of the synopsis, argument, script and storyboard of the educational video, for this stage an integrative review was carried out, aiming at theoretical foundation for the development of the script for educational technology with subsequent validation of the video content by expert judges, through the Health Educational Content Validation Instrument (IVCES). To analyze the instrument, the Content Validity Index (CVI) was used and the value was considered acceptable when the result of the proportion of agreement between the expert judges was equal to or greater than 0.78; 2) Production: construction of the educational video and evaluation of the video by family caregivers of elderly people hospitalized in Neurology, using the Suitability Assessment of Materials (SAM) instrument, with content evaluation, literacy requirements, illustrations, layout and presentation and cultural suitability; 3) Postproduction: editing and final version of the educational video for subsequent dissemination. As a result of the research, the literature identified what guidance caregivers and/or family members of elderly people who suffered a stroke should receive regarding post-stroke care in preparation for hospital discharge. The video script was produced, which was validated by the agreement of the expert judges (IVC= 0.93). The video was composed of 51 scenes in Full HD resolution, lasting 8 minutes. There was 99% agreement among family caregivers of participating elderly people, making it appropriate and validated. After completing this stage, the application was completed to issue the Brazilian product certificate for the educational video at the National Cinema Agency, published on the YouTube digital platform. The video proved to be a tool that helped in the acquisition of fundamental knowledge on the topic, as it is a way of disseminating information in an attractive, simple, dynamic and democratic way. The developed product has the potential to be replicated in other units of the institution that serve the same patient profile, as the technology provides guidance and clarification to family caregivers of elderly people on the topic.

Analysis of palliative care needs and related factors of family caregivers of patients with advanced Alzheimer's disease / 重庆医学

Objective To explore the needs and influencing factors of palliative care among primary car-egivers in families of patients with advanced Alzheimer's disease(AD).Methods The main caregivers of 148 patients with advanced AD who were diagnosed at the Memory Clinic of this hospital from January 2021 to December 2022 were randomly selected as the research subjects.A self-designed questionnaire on palliative care needs was used for investigation and statistical analysis.Results The total score of the main caregivers for palliative medical needs was(91.88±15.19),with a score indicator of 66.57％.The highest score indicator was the demand for professional medical care guidance,and the lowest was the demand for social support.There were statistical differences in the scores of palliative medical care needs of caregivers with different a-ges,education level,relationship with patients,nursing experience,death of relatives and friends,annual family income,medical payment method and physical condition(P＜0.05).The results of linear regression analysis showed that education level,relationship with patients and nursing experience were the influencing factors of family caregivers'easing medical needs(P＜0.05).Conclusion The main caregivers of advanced AD patients have a high demand for palliative care,and there is an urgent need to strengthen palliative care services.

Establishment and application of family-centred health education programe for family caregivers of Autistic children / 现代临床护理

Objective To propose a family-centred health education program for family caregivers of Autistic children and investigate its clinical value.Methods Delphi method was used to establish a family-centred Autistic children care program for family caregivers looking after the Autistic children,which involved two rounds of expert consultation.The pre-and post-control method for different cases was employed in the study.Forty Autistic caregivers in our hospital from January 2022 to October 2022 were assigned to the control group and another 40 in our hospital from November 2022 to January 2023 were assigned to the observation group.The family caregivers of Autistic children in the control group received traditional care education,while those in the observation group was managed with the family-centred Autistic children health education program.The two groups were compared in terms of care burden,knowledge of health education,and evaluation of clinical symptom of Autistic children.Results The expert authority coefficient of the first round of expert consultation was 0.875 respectively and those in the second round was 0.900,respectively.The coefficient of variation of the coordination degree of each index was 0.04-0.20.Kendalls W scores of the two rounds were 0.794 and 0.786,respectively.A health education program for family-centred Autistic children caregiver was established to consist of three subjects:caregiver training,family-centred parental care and activation of positive emotions of autistic caregivers.Autism caregivers in both groups had completed the study.In comparison with the control group,the care burden of the observation group was significantly lower,the knowledge of health education was significantly higher,and the evaluation of children's clinical symptoms was better among the family caregivers of autistic children in the observation group(all P<0.05).Conclusions The family-centred autistic children care program for family caregivers is scientific and applicable.It is conducive to providing health education guidance for family caregivers of Autistic children,effectively reducing the care burden and enhancing the knowledge of health education.

Correlation of dietary intake during home stay of postoperative patients with digestive malignant tumors and the nutritional knowledge of their primary family caregivers / 现代医院

Objective To investigate the dietary intakes of postoperative patients with digestive malignant tumor during their recovery at home and explores the correlation of the intakes with the food nutritional knowledge of their primary family care-givers.Methods A total of 108 primary caregivers of prospective patients with digestive malignant tumors were selected for a sur-vey conducted at home from October 2022 to March 2023 in Guangzhou,from two tertiary hospitals.In this cross-sectional study,this paper investigated these caregivers using its general information questionnaire,a nutritional knowledge-attitude-behavior ques-tionnaire,and a simple dietary self-assessment tool(SDSAT).Results The SDSAT score of the patients was collected(4.16±1.22).Significant differences were observed among patients with various tumor types in terms of the recovery time at home after surgery.The total score of family primary caregivers'nutritional knowledge,attitude,and behavior was(47.64±6.97).Pearson's correlation analysis revealed a positive correlation between the knowledge of dietary guidelines and the patient's dietary intakes during home stay(r=0.285,P＜0.05).Multiple linear regression analysis revealed that caregivers'knowledge of dieta-ry guidelines significantly influenced the dietary intake of the prospective patients.Conclusion It is essential to regularly monitor the dietary intake of prospective patients at home.Medical personnel can concentrate on intervening with the patient's caregivers and encouraging them to participate in nutrition management together.This approach can improve the quality of family care and the nutritional status of the patients.

Relationship between life satisfaction of family caregivers and degree of disability of disabled elderly people in Xinjiang / 中国心理卫生杂志

Objective:To explore the relationship between the life satisfaction of family caregivers and the de-gree of disability of disabled elderly people in Xinjiang Uygur and Kazak nationality,and the role of family mem-bers'participation in the relationship.Methods:A total of 431 elderly people with disabilities at home and their fam-ily caregivers(247 without family members and 184 with family members)were selected from Xinjiang Uygur and Kazak ethnic groups,and the survey was conducted with the Activity of Daily Living Scale(ADL)and Life Satis-faction Index B(LSIB).Results:The LSIB scores in family caregivers were negatively correlated with the ADL scores in the disabled elderly(r=-0.19,P＜0.01),and the family members'participation in care was positively correlated with the LSIB scores of family caregivers(r=0.52,P＜0.01).Family members'participation in care could moderate the negative effect of the ADL scores in the disabled elderly on the LSIB scores in family caregivers(β=0.08,P＜0.05).Conclusion:The involvement of family members in care has a moderating effect on the life satisfaction of Uyghur and Kazak family caregivers and the degree of disability of disabled elderly people.

Place et vécu psychosocial des proches de schizophrènes suivis au service d'addictologie et d'hygiène mentale d'Abidjan (SAHM) / Psychosocial place and experience of relatives of schizophrenics followed at the addiction and mental hygiene service of Abidjan (SAHM)

La survenue de la schizophrénie chez un membre de la famille n'affecte pas que le malade, elle a une répercussion sur l'ensemble de la sphère familiale. À la vue de cette réalité, nous avons mené une étude transversale à visée descriptive ayant portée sur un échantillon sur 132 proches de patients schizophrènes à Abidjan. Les résultats de cette étude ont montré que : - Dans la majorité des cas (87,13%), les aidants familiaux des patients schizophrènes étaient des membres de la famille nucléaire. Ces aidants familiaux qui assuraient l'essentiel de la prise en charge, exerçaient pour plus de la moitié (57,58%) d'entre eux dans le secteur informel, avaient à 72.22% un revenu mensuel inférieur à 100.000 F.CFA (152,7 euro). Tous nos participants à l'enquête ont affirmé ne recevoir aucune aide extérieure ; - En termes de degré d'implication des proches il ressort que les parents géniteurs et la fratrie étaient les plus impliqués à 78,29%dans frais des médicaments, à 73,49% dans le suivi de l'observance thérapeutique et à 61,36% dans l'apport d'assistance dans les besoins quotidiens de leur proche atteint de schizophrénie ; - Parmi les difficultés rencontrées par les proches dans la prise en charge des schizophrènes, celles qui ont les fréquences les plus élevées sont celles de la stigmatisation (77,78%), l'épuisement financier (73,33%), la fragilité de la santé (62,22%), des difficultés liées à la couchette et à l'alimentation (53,33%) et du manque de temps pour soi-même (46,67%) ; - Les principales réactions psychologiques enregistrées à l'annonce du diagnostic de schizophrénie chez nos enquêtés étaient : tristesse (88,89%) ; découragement (86,67%) et stress (77,78%). Il a été cependant noté qu'au décours du suivi des patients, les principales attitudes enregistrées chez nos participants face à cette situation étaient : renforcement de l'affection (52,67%) et le soutien moral (35,11%).

The occurrence of schizophrenia in a family member does not only affect the patient, it has an impact on the entire family sphere. In view of this reality, we conducted a descriptive cross-sectional study involving a sample of 132 relatives of schizophrenic patients in Abidjan. The results of this study showed that: -In the majority of cases (87.13%), family caregivers of schizophrenic patients were members of the nuclear family. These family carers who provided most of the care, worked for more than half (57.58%) of them in the informal sector, had at 72.22% a monthly income of less than 100,000 CFA francs (152,7 euro). All of our survey participants said they receive no outside help; - In terms of degree of involvement of relatives, it appears that parents and siblings were the most involved at 78.29% in drug costs, at 73.49% in monitoring therapeutic compliance and at 61, 36% in providing assistance with the daily needs of their loved one with schizophrenia. - Among the difficulties encountered by relatives in the care of schizophrenics, those with the highest frequencies are those of stigmatization (77.78%), financial exhaustion (73.33%), the fragility of health (62.22%), difficulties related to bed and food (53.33%) and lack of time for oneself (46.67%). - The main psychological reactions recorded at the announcement of the diagnosis of schizophrenia among our respondents were: sadness (88.89%); discouragement (86.67%) and stress (77.78%). It was however noted that during the follow-up of the patients, the main attitudes recorded by our participants in the face of this situation were: reinforcement of affection (52.67%) and moral support (35.11%)

Expectativas de famílias de crianças elegíveis para cuidados paliativos / Expectations of families of children eligible for palliative care

Resumo O estudo objetivou compreender as expectativas das famílias frente às necessidades de cuidado de crianças elegíveis para cuidados paliativos (CP). Trata-se de uma pesquisa qualitativa de estudo de casos múltiplos, realizadas em duas etapas: 1) identificação das crianças elegíveis para cuidados paliativos; e 2) estudo de unidades caso, através da entrevista semiestruturada com 18 familiares diretamente ligados ao acompanhamento das crianças. Utilizou-se a análise temática em Bardin, da qual emergiram três categorias: 1) à espera de um milagre; 2) entre a aceitação e o milagre; e 3) aceitando e buscando estratégias para o cuidado. Observaram-se vivências de negação e a aceitação da doença, com impactos nas expectativas em relação aos desfechos. A religião surgiu como elemento essencial para o enfrentamento e busca por sentido da experiência vivida. A aceitação da doença em alguns casos incentivava a busca por estratégias para cuidado, sem exclusão de esperanças. Surgiram expressões não explícitas de luto e sem indícios de abordagem pela equipe. Conclui-se que existe uma necessidade de acolhimento, escuta qualificada, orientação e apoio das equipes de saúde relativos a esperanças e necessidades dos familiares de crianças elegíveis para CP, pois as expectativas dos familiares repercutem diretamente nas possibilidades de enfrentamentos menos traumáticos.

Abstract The study aimed to understand families' expectations regarding the care needs of children eligible for palliative care (PC). This is a qualitative multiple case study research, carried out in two stages: 1) identification of children eligible for palliative care; and 2) study of case units, through semi-structured interviews with 18 family members directly linked to monitoring the children. Bardin's thematic analysis was used, from which three categories emerged: 1) waiting for a miracle; 2) between acceptance and miracle; and 3) accepting and seeking strategies for care. Experiences of denial and acceptance of the disease were observed, with impacts on expectations regarding outcomes. Religion emerged as an essential element for coping and searching for meaning in the lived experience. Acceptance of the disease in some cases encouraged the search for care strategies, without excluding hope. There were non-explicit expressions of grief and no signs of an approach by the team. It is concluded that there is a need for welcoming, qualified listening, guidance and support from health teams regarding the hopes and needs of family members of children eligible for PC, as family expectations have a direct impact on the possibilities of less traumatic coping.

O que dizem familiares de autistas sobre o trabalho desenvolvido pelos CAPSi? / What do family members of autistic people say of the work carried out by the CAPSi?

Resumo A política de saúde mental infantojuvenil, implantada no Brasil no início do século XXI, estabeleceu os Centros de Atenção Psicossocial Infantojuvenis (CAPSi) como equipamentos estratégicos para priorizar os casos de maior complexidade, com destaque para os autistas. Este estudo visa cotejar duas fontes de informação sobre a percepção de familiares de autistas acerca do trabalho desenvolvido pelos CAPSi: a primeira foi colhida em pesquisa de 2011, que utilizou grupos focais; e a segunda, a partir da literatura produzida sobre o tema nos 10 anos seguintes. As narrativas foram organizadas em quatro eixos temáticos: percepção sobre os efeitos do trabalho psicossocial; compartilhamento de informações; percepção sobre os processos de cuidado; e demandas e reivindicações. A despeito da heterogeneidade entre os estudos, os resultados indicaram que o trabalho dos CAPSi produz efeitos positivos, principalmente em relação à socialização. Contudo, essa percepção não é acompanhada de melhor entendimento do quadro clínico e dos processos de cuidado. O valor do tratamento é frequentemente atribuído à atitude pessoal dos profissionais, indicando a ausência de compartilhamento e participação dos familiares. Esses aspectos devem instigar os CAPSi a envolver os familiares como parceiros do cuidado, dando atenção especial à transmissão da lógica psicossocial, suas estratégias e direção do cuidado.

Abstract The child and adolescent mental health policy, implemented in Brazil from the beginning of the 21st century, established the Centros de Atenção Psicossocial Infantojuvenis (CAPSi - Psychosocial Care Centers for Children and Adolescent) as strategic services to prioritize more complex cases, with emphasis on autism. This study aims to compare two sources of information on the perception family members of autistic people regarding the work carried out by CAPSi: the first was collected in a 2011 survey, which used focus groups; and the second, from the literature produced on the subject in the following 10 years. The family member's narratives were organized into four thematic axes: perception of the effects of psychosocial care; information sharing; perception about care processes; and demands and claims. Despite the heterogeneity between the studies, the results indicated that the work of the CAPSi produces positive effects, especially regarding socialization. However, this perception is not accompanied by a better understanding of the clinical picture and care processes. The value of treatment is often attributed to the personal attitude of professionals, indicating the lack of sharing and participation by family members. These aspects should encourage the CAPSi to involve family members as partners in care, particularly valuing the transmission of the psychosocial reasoning, its strategies and direction of care.

Lecciones aprendidas en Apropiación Social del Conocimiento en cuidadores familiares de personas con enfermedad crónica / Lessons learned in Social Knowledge Appropriation in family caregivers of people with chronic diseases

INTRODUCCIÓN: Los cuidadores familiares de personas con enfermedad crónica se ven enfrentados a cambios de orden individual, familiar y social, lo que afecta su calidad de vida y son expuestos a prácticas saludables y no saludables. OBJETIVO: Transferir el conocimiento generado en la línea de adopción de rol del cuidador de la persona con enfermedad crónica. METODOLOGÍA: Estrategia de Apropiación Social del Conocimiento (ASC) con enfoque de investigación participativa basada en la comunidad. Se contemplaron las siguientes fases: revisión y actualización de literatura científica, identificación de actores, diagnóstico situacional; planeación y desarrollo de la estrategia, y seguimiento. En Bogotá y Cajicá (Colombia), con cuidadores familiares de personas con condiciones crónicas. RESULTADOS: Se confirma la necesidad de dinamizar las redes a través de estrategias de ASC. Se realizaron grupos focales en donde se priorizaron 21 temáticas que fueron abordadas conjuntamente entre los cuidadores y los Jóvenes Talento. Aplicación del pre y postest del instrumento Rol en donde se evidenció un aumento en la adopción del rol. CONCLUSIONES: Se evidenció una constante retroalimentación bidireccional entre los Jóvenes Talento y los cuidadores participantes; contribuyendo a la generación de conocimiento teniendo como fundamentos la evidencia científica.

INTRODUCTION: Family caregivers of people with chronic diseases are faced with individual, family, and social changes that affect their quality of life and are exposed to healthy and unhealthy practices. OBJECTIVE. Transfer the knowledge gained in the process of adopting the role of the chronic illness patient's caregiver. METHODS: Social Knowledge Appropriation (SKA) strategy incorporating a community-based participatory research methodology. Consideration was given to the following phases: review and update of scientific literature, identification of actors, situational analysis, planning and development of the strategy, and follow-up. In Bogotá and Cajicá, with family caregivers of chronically ill patients. RESULTS confirm the need to energize networks with SKA strategies. Twenty-one topics were prioritized and discussed by caregivers and young talent in focus groups. Application of the pre- and post-test of the role instrument, which revealed an increase in role adoption. CONCLUSIONS: A constant bidirectional feedback was observed between the young talents and the participating caregivers, which contributed to the generation of scientifically based knowledge.

Efectividad de un programa de automanejo para cuidadores familiares / Effectiveness of a self-management program for family caregivers

INTRODUCCIÓN: La carga de cuidado en los cuidadores familiares (CF), tiene un efecto en la salud física y mental, relaciones familiares, laborales y estado financiero, aumentando la necesidad de intervenciones efectivas para mejorar el automanejo de su condición y el cuidado al familiar en el hogar. OBJETIVO: evaluar la efectividad de un programa para promover el automanejo en CF. METODOLOGÍA: de diseño cuasi experimental con mediciones pre y post intervención, en una muestra no probabilística, intencionada de 19 CF de personas mayores con nivel de dependencia. El programa "Trabajando juntos en colaboración" (TJC), implementado por facilitadores entrenados y certificados, promueve el automanejo y habilidades para cuidar a su familiar en casa. Para evaluar el efecto de la intervención se aplicó pre y post-test el Instrumento de "Automanejo en Cuidadores Familiares", la prueba Shapiro-Wilks, el análisis de diferencias por la t-Student y test de Wilcoxon, se calculó el tamaño del efecto y la potencia estadística (1- ß). RESULTADOS: se encontró una diferencia estadísticamente significativa entre el pre y post intervención, observando un incremento en el resultado de la sumatoria global y en las tres dimensiones del automanejo. Estas diferencias muestran un efecto relevante a considerar (>,80) y una potencia alta (>,80). CONCLUSIÓN: El Programa TJC, muestra efectividad en mejorar el automanejo en CF, con una potencia adecuada que podría permitir generalizar resultados en poblaciones similares. Siendo este un programa genérico, podría ser aplicado en cualquier caso de CF, independiente a la enfermedad o condición de su familiar.

INTRODUCTION: The caregiving burden on family caregivers (FC) has an impact on physical and mental health, family relationships, work, and financial status, increasing the need for effective interventions to improve self-management of their condition and care for the family member at home. OBJECTIVE: to evaluate the effectiveness of a program to promote self-management in FC. METHODOLOGY: The study employed a quasi-experimental design with pre- and post-intervention measurements in a non-probabilistic, purposive sample of 19 FC of older individuals with a level of dependency. The "Trabajando Juntos en Colaboración" (TJC) program, implemented by trained and certified facilitators, promotes self-management and skills to care for their family member at home. To assess the intervention's effect, pre and post-tests were administered using the "Automanejo en Cuidadores Familiares" instrument, along with the Shapiro-Wilks test, t-Student analysis of differences, and Wilcoxon test. Effect size and statistical power (1- ß) were calculated. RESULTS: indicated statistically significant differences between the pre- and post-intervention periods, with an observed increase in the overall sum and in all three dimensions of self-management. These differences demonstrate a relevant effect (>0.80) and high statistical power (>0.80). CONCLUSION: the TJC program proves effective in enhancing self-management in CF, with sufficient power to potentially generalize results to similar populations. As a generic program, it could be applied in any FC case, regardless of the disease or condition of their family member.

Síndrome congênita do zika e impactos para as famílias: uma revisão integrativa / Congenital zika syndrome and family impacts: an integrative review

Resumo Em 2015, um espectro de anomalias congênitas, incluindo microcefalia, acometeu recém-nascidos como resultado da transmissão vertical pelo vírus zika, posteriormente denominada síndrome congênita do zika (SCZ). Desde então, cerca de 4 mil crianças foram afetadas em 27 países, sendo o Brasil o mais atingido. Cuidadores familiares também têm sido impactados. Esse estudo analisa publicações científicas que investigam as maneiras como a doença afetou as dinâmicas de vida de cuidadores familiares de crianças com SCZ. Realizou-se uma revisão integrativa de literatura consultando as bases de dados PubMed, Biblioteca Virtual em Saúde e Embase. Após as etapas de triagem, foram identificados 31 artigos. Os principais resultados foram agrupados em quatro categorias: a) impactos sociais que evidenciaram mudanças nas relações familiares, nos projetos de vida e no convívio social; b) impactos subjetivos - sentimentos de resiliência, solidão, luto, sobrecarga, medo, incerteza e relação com a espiritualidade; c) impactos econômicos e materiais - perda de renda, aumento de despesas, mudança de moradia e desemprego e d) impactos na saúde - despreparo dos serviços, renúncia do cuidado de si, modificações dos padrões nutricionais e de sono, repercussão para a saúde mental e níveis de estresse, ansiedade e depressão.

Abstract In 2015, a range of congenital anomalies resulting from mother-to-child transmission of the zika virus emerged. Later called congenital zika syndrome (CZS), the condition includes microcephaly. Since then, around 4,000 children have been affected in 27 countries, with Brazil accounting for the largest proportion of cases. Family caregivers have also been affected. This study analyzes the literature on caregivers of children with CZS and how the disease has affected their everyday lives. We conducted an integrative review using the PubMed, Virtual Health Library, and Embase databases. Thirty-one articles were identified for analysis after screening. The findings were grouped into four categories: a) social impacts - changes in family relationships, life projects, and social life; b) subjective impacts - feelings of resilience, loneliness, grief, overburdening, fear, uncertainty, and spirituality and religion; c) economic and material impacts - loss of income, increased household expenses, change of residence, and unemployment; and d) health impacts - service unpreparedness, selflessness, self-care, changes in nutritional and sleep patterns, and mental health problems, including stress, anxiety and depression.

Caracterización psicosocial del cuidador familiar del paciente con padecimientos oncológicos

Fundamento: dentro de las problemáticas que afrontan los cuidadores familiares de pacientes con padecimientos oncológicos está el hecho, que estos asumen el cuidado de sus familiares sin los conocimientos específicos, ni las habilidades requeridas para el ejercicio del cuidado, lo que genera una sobrecarga en ellos. Objetivo: identificar las principales características psicosociales del cuidador familiar del paciente con padecimientos oncológicos en la zona urbana de Niquero, durante el período de noviembre de 2019 a marzo del 2022. Métodos: se realizó un estudio descriptivo en el período comprendido de noviembre 2019 a marzo 2022 en el municipio Niquero en la provincia Granma. El universo de estudio quedó conformado por 305 cuidadores familiares de pacientes con padecimientos oncológicos, escogiéndose una muestra de 255 de ellos por medio de los criterios establecidos. Las variables analizadas fueron: edad, sexo, nivel de escolaridad, factores psicosociales presentes. Se realizó un muestreo intencional y probabilístico. Resultados: prevaleció el grupo de 50-59 años, el sexo femenino y como nivel de escolaridad, predominó el de secundaria básica, el miedo fue el estado emocional más referido por ellos. En los antecedentes sociales la situación económica desfavorable fue la que prevaleció, así como el nivel de afrontamiento familiar inadecuado ante el rol de cuidador. Conclusión: el miedo, la situación económica desfavorable y el nivel de afrontamiento inadecuado ante el rol de cuidador, fueron las principales características psicosociales que predominaron.

Background: among the problems faced by family caregivers of patients with oncological diseases is the fact that they take care of their relatives without the specific knowledge or skills required for the exercise of care, which generates an overload in them. Objective: to identify the main psychosocial characteristics of the family caregiver of the patient with oncological conditions in the urban area of ​​Niquero, during the period from November 2019 to March 2022. Methods: a descriptive study was carried out in the period from November 2019 to March 2022 in the Niquero municipality in the Granma province. The universe of study was made up of 305 family caregivers of patients with oncological conditions, choosing a sample of 255 of them by means of the established criteria. The variables analyzed were: age, sex, level of education, psychosocial factors present. An intentional and probabilistic sampling was carried out. Results: the age group prevailed in the family caregivers of cancer patients aged 50-59 years, the female sex and as level of education, the basic secondary predominated, fear was the emotional state most referred to by them. In the social background, the unfavorable economic situation was the one that prevailed, as well as the level of inadequate family coping with the role of caregiver. Conclusion: fear, the unfavorable economic situation and the inadequate level of coping with the role of caregiver, were the main psychosocial characteristics that prevailed.

Qualitative Insights on the Caregiving of Gastrointestinal Cancer Patients with Low Quality of Life Scores

@#Introduction: Caring for gastrointestinal cancer patients can be demanding and to some, caregivers, burdensome; resulting in them having low quality of life (QOL) and thus they may become the next potential patients. Hence, true heartfelt experiences need to be captured to highlight issues and preventive measures that are not voiced out as most often caregiving is done in silence and out of responsibility. Therefore, this study aimed to explore on the caregivers’ insights on how caregiving experience has resulted in their low QOL. Methods: Seven family caregivers were purposively selected from two oncology centres in the Klang Valley, Malaysia for this qualitative case study. The selection was based on the low scores obtained from Malay Caregiver Quality of Life Cancer (MCQOL) questionnaire during an initial cross-sectional study. Following that, in-depth interviews were performed on those selected caregivers. Interview data were triangulated with the questionnaire and observations for validity. Member and expert checking were conducted to ensure credibility and trustworthiness. A thematic content analysis was later performed. Results: Thematic analysis revealed four distinct contributors to the caregivers’ QOL; namely, patients’ financial and stress management; impact towards physical, psychological, social (including relationship) wellbeing, communication; and support from families, organisation and community. Conclusion: The qualitative study discovered evidence for collaborative support needed to ensure better QOL for the caregivers.

Research progress on spiritual needs of family caregivers of cancer patients / 中国实用护理杂志

This article reviewed the concept of spirituality and spiritual needs of family caregivers of cancer patients, types of spiritual needs, assessment tools, priorities, and influencing factors, aiming to provide a reference for hospice teams to identify the spiritual needs of family caregivers of cancer patients and carry out spiritual care.

Research progress of benefits finding for family caregivers of stroke patients / 中国实用护理杂志

The concept of benefit finding, the assessment tools and the status quo of benefit finding for family caregivers of stroke patients were elaborated, the influencing factors of benefit finding of family caregivers of stroke patients were summarized, the current problems and the development direction of future research were pointed out, aiming to provide a reference for clinical staff to conduct research on benefit finding of family caregivers of stroke patients in China.

Survey on health literacy and influencing factor of family caregivers of chronic disease patients in Beijing / 中华全科医师杂志

Objective:To survey the health literacy and related factors of family caregivers of patients with chronic diseases in Beijing.Methods:A survey was conducted from September to November 2018, among 1 350 family caregivers of patients with chronic diseases selected by stratified random sampling from 6 districts of Beijing. A self-filling questionnaire was used for the survey, which consisted of the basic information and health literacy of family caregivers. Health literacy included three parts: daily living habits, basic knowledge (knowledge of prevention and management of behavioral risk factors, knowledge related to chronic diseases and knowledge related to first aid) and chronic disease-related skills.Results:A total of 1 268 valid questionnaires were collected with a recovery rate of questionnaires was 93.9%. The median age of 1 268 family caregivers was 62 years (23-86) and 75.7% (960/1 268) were females. In terms of daily habits, smokers and drinkers accounted for 11.3% (143/1 268) and 21.5% (272/1 268) respectively; 82.7% (1 049/1 268) caregivers exercised regularly accounted, of whom 72.5% (761/1 049) exercised at least 4 times a week; 28.9% (366/1 268) caregivers had habit of light diet. In terms of basic knowledge of health literacy, 12.9% (163/1 268) of family caregivers mastered the basic knowledge (≥80% total score); family caregivers who were able to measure blood pressure, blood sugar, pulse, coping with hypoglycemia, cardiopulmonary resuscitation and dialing the emergency number correctly accounted for 27.4% (347/1 268), 18.1% (230/1 268), 15.1% (191/1 268), 15.7% (199/1 268), 6.0% (76/1 268) and 33.8% (429/1 268), respectively. For the six chronic disease-related skills, 23.7% (301/1 268) were able to call emergency number correctly and only 2.6% (33/1 268) were able to perform CPR. There were significant differences in the knowledge of behavioral risk factors ( χ 2=3.88, P=0.017), chronic disease related knowledge ( χ2=7.40, P=0.025), first-aid related knowledge ( χ2=12.04, P=0.002) and overall basic knowledge ( χ2=13.56, P=0.001) among family caregivers with different educational levels. There were significant differences in the knowledge of chronic diseases among family caregivers in different occupations ( χ2=8.78, P=0.012). Conclusion:The health literacy level of family caregivers of patients with chronic diseases in Beijing needs to be further improved, and there are differences in the health literacy of family caregivers with different educational qualifications and occupations.

A longitudinal study of trajectories of change in benefit finding among family caregivers of patients with lung cancer / 中国实用护理杂志

Objective:To explore the change trajectory and influencing factors of benefit finding of family caregivers of patients with lung cancer, so as to provide reference for formulating individualized intervention strategies.Methods:This study was a cross-sectional survey. From September 2021 to October 2022, 232 family caregivers of patients with lung cancer from General Hospital of PLA Central Theater Command and Tianyou Hospital affiliated to Wuhan University of Science and Technology were collected by convenience sampling method. The level of benefit finding of family caregivers was investigated at 1 month, 3 months and 6 month, after the patients were diagnosed. Growth Mixture Model was applied to identify distinct trajectory categories. Multinomial Logistic regressions were performed to analyze predictors of trajectory categories.Results:The overall level of benefit finding of family caregivers of lung cancer patients showed an upward trend over time ( F=83.06, P<0.01), from 1 month (47.02 ± 14.79) to 6 months (58.13 ± 13.18). Three categories of benefit finding trajectories were identified, named as "the high level-decline group" 12 cases, "the moderate level-stability group" 67 cases, and "the low level-elevation group" 153 cases. Univariate analysis showed that age and education level of family caregivers, average income per person in patient family, type of medical payment, whether the tumor was metastasized, the treatment method of the patient, whether they lived with the patient, and whether they had co-caregivers were related to the category of benefit finding trajectory ( χ2 values were 6.71-15.05, all P<0.05). Multivariate Logistic regression analysis showed that age and education level of family caregivers, average income per person in patient family, treatment method of the patient and whether they lived with the patients were the main influencing factors of benefit finding trajectory categories(all P<0.05). Conclusions:The benefit finding of family caregivers of lung cancer patients showed different trajectories with the time of diagnosis, and the overall level shows an upward trend. More than half of the family caregivers belong to the low level-elevation group. Medical staff should give family caregivers stage and specific nursing intervention according to the change trajectory of benefit finding and its influencing factors.

Advances in the application of e-health technology in family caregivers of cancer patients / 中华护理杂志

With the rapid development of the Internet,e-health technology-based interventions provide high-quality supportive care to meet the care needs of family caregivers of cancer patients,thereby improving the physical and mental health of family caregivers.This article aims to summarize the concept of e-health technology,its current applications,intervention content,and effects among family caregivers of cancer patients.Additionally,it analyzes the shortcomings in the current stage of research and applications,with the goal of providing insights for promoting the utilization of e-health technology in the context of family caregivers of cancer patients.

Subjective oral health measures in caregivers of patients with autism spectrum disorder and down syndrome: a preliminary study

This study aimed to address the subjective oral health measures of caregivers of individuals with autism spectrum disorder (ASD) and Down syndrome. This cross-sectional study included 15 caregivers of individuals with ASD (n = 7) and Down syndrome (n = 8). Sociodemographic data, sense of coherence (SOC) (SOC-13 scale), social support (Social Support Scale [MOS-SSS]), oral health-related quality of life (OHRQoL) (OHIP-14), and self-rated oral health assessed on a 5-point Likert scale were collected. A descriptive analysis was performed in addition to correlation analyses (Spearman correlation coefficient). Most primary caregivers were parents of the individual (86.6%). The age of the caregivers ranged between 40 and 59 years (60%). Most caregivers have had 9 to 11 years of education (53.3%). Monthly family income was less than USD 186,28 for ASD caregivers (57.2%) and between USD 327,56 and USD 931,40 for Down syndrome caregivers (50%). Of the caregivers, 33.3% reported good oral health and 33.3% reported neither good nor bad. The average SOC score, social support and OHRQoL was 48.9, 69.3 and 10.9, respectively. The higher the family income, the better the OHRQoL (rs = -0.62, p = 0.014). SOC was correlated with the score of the emotional support domain (rs = 0.54, p = 0.039). It was concluded that caregivers had a strong SOC and high perceived support. Moreover, caregivers did not report a high impact on OHRQoL A better understanding of the caregivers' protective and coping factors in caring for individuals with disabilities may better promote their quality of life.

Cuidar de pessoas em paliação: o olhar do familiar cuidador / Caring for people undergoing palliation: the look of the family caregiver / Cuidar a personas en paliación: la mirada del cuidador familiar

Objetivo: Compreender a visão do familiar ao assumir o papel de cuidador de um ente em paliação. Método: Estudo exploratório e descritivo de abordagem qualitativa, realizado com 27 familiares cuidadores de pacientes com diagnóstico oncológico acompanhados num ambulatório de uma cidade de grande porte no estado de Pernambuco. Os dados foram coletados usando a entrevista semiestruturada e organizados no Software IRaMuTeQ®, considerando a Técnica de Análise de Conteúdo de Bardin, possibilitando assim a sua análise e discussão à luz da Teoria de Enfermagem Humanística. Resultados: Foi possível inferir que os familiares têm conhecimento sobre o diagnóstico de câncer; conhecem os riscos da doença e tratamento e, demonstram resiliência e altruísmo ao prestar os cuidados com amor e afeto. Reconhecem que para uma boa adesão ao tratamento, paciente e família precisam se sentirem acolhidos por toda equipe, com ênfase na equipe de enfermagem. Considerações finais: Possibilita refletir sobre a importância do familiar no processo de tratamento, e aponta para a necessidade de que a equipe esclareça sobre as mudanças que este familiar enfrentará no processo de cuidar, assim como de que seja dada visibilidade ao que são os cuidados paliativos, de modo a proporcional alívio ao sofrimento do paciente e família.

Objective: To understand the view of the family member when assuming the role of caregiver of a person undergoing palliation. Method: Exploratory and descriptive study with a qualitative approach, carried out with 27 family caregivers of patients with an oncological diagnosis followed at an outpatient clinic in a large city in the state of Pernambuco. Data were collected using semistructured interviews and organized in the IRaMuTeQ® Software, considering Bardin's Content Analysis Technique, thus enabling its analysis and discussion in the light of the Humanistic Nursing Theory. Results: It was possible to infer that family members are aware of the cancer diagnosis; they know the risks of the disease and treatment and demonstrate resilience and altruism when providing care with love and affection. They recognize that for good adherence to treatment, the patient and family need to feel welcomed by the entire team, with an emphasis on the nursing team. Final considerations: It makes it possible to reflect on the importance of the family member in the treatment process, and points to the need for the team to clarify the changes that this family member will face in the care process, as well as to give visibility to what palliative care is, in order to provide relief in the suffering of the patient and family.

Objetivo Comprender la mirada del familiar al asumir el rol de cuidador de una persona en paliación. Método: Estudio exploratorio y descriptivo con enfoque cualitativo, realizado con 27 cuidadores familiares de pacientes con diagnóstico oncológico seguidos en un ambulatorio de una gran ciudad del estado de Pernambuco. Los datos fueron recolectados mediante entrevista semiestructurada y organizados en el Software IRaMuTeQ®, considerando la Técnica de Análisis de Contenido de Bardin, posibilitando así su análisis y discusión a la luz de la Teoría Humanística de Enfermería. Resultados: Se pudo inferir que los familiares conocen el diagnóstico de cáncer; conocen los riesgos de la enfermedad y el tratamiento y demuestran resiliencia y altruismo al brindar atención con amor y afecto. Reconocen que para una buena adherencia al tratamiento, el paciente y la familia necesitan sentirse acogidos por todo el equipo, con énfasis en el equipo de enfermería. Consideraciones finales: Permite reflexionar sobre la importancia del familiar en el proceso de tratamiento, y apunta la necesidad de que el equipo aclare los cambios que este familiar enfrentará en el proceso de cuidado, así como dar visibilidad a lo que son los cuidados paliativos, con el fin de brindar alivio en el sufrimiento del paciente y su familia.