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.

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.

Psychoeducation versus psychoeducation integrated with yoga for family caregivers of people with Alzheimer's disease: a randomized clinical trial.

We evaluate and compare the effectiveness of two psychoeducation programs on the burden and quality of life of family caregivers of people with Alzheimer's disease: one of psychoeducation alone and the other integrated with yoga. Forty-nine participants were randomly allocated to two groups, 25 to the psychoeducation integrated with yoga group (G1) and 24 to the psychoeducation group (G2). The programs took place online through Google Meet and consisted of eight weekly meetings, lasting 30 min for psychoeducation and 30 min for yoga. Participants were evaluated by the Burden Interview Scale (BI-Zarit), Quality of Life Scale in Alzheimer's Disease-Caregiver Version (CQOL-AD), Depression, Anxiety and Stress Scale (DASS-21), Mindfulness and Awareness Scale (MAAS) and a satisfaction survey. Both groups showed reduced overload according to the BI-Zarit scale (F(1) = 4.435, p = 0.041, η2p = 0.086) and improvement in the domains of physical health (F(1) = 4.881, p = 0.032, η2p = 0.094), memory (F(1) = 4.192, p = 0.046, η2p = 0.082) and money (F(1) = 4.862, p = 0.032, η2p = 0.094) in the CQOL-AD. We detected a significantly higher improvement of G1 in memory (F(1) = 4.192, p = 0.046 η2p = 0.082), money (F(1) = 7.147, p = 0.010, η2p = 0.132) and friends (F(1) = 4.828, p = 0.033, η2p = 0.093). The G1 when compared to the G2 did not demonstrate significant effects of the BI-Zarit, in the total scores CQOL-AD, MAAS and DASS-21. The study showed that both psychoeducation alone and integrated with yoga reduced the burden of family caregivers of people with Alzheimer's disease, and that the integration of online yoga practice with psychoeducation potentiated the improvement only in some aspects of the quality of life and subjective perception of burden reduction.Clinical trial registration https://ensaiosclinicos.gov.br/ , identifier RBR-794593r, retrospectively registered.

Perceptions of an educational intervention for family caregivers of palliative care patients.

BACKGROUND: Nursing interventions aimed at family caregivers of palliative cancer patients require not only an objective evaluation, but also subjective consideration of their contributions, and a qualitative evaluation that provides an in-depth understanding of these interventions. AIMS: This study aimed to explore the perceptions that family caregivers of palliative cancer patients had of the nursing intervention, PalliActive Caregivers, in reducing the uncertainty associated with illness and improving the caregiver's quality of life. METHODS: A qualitative approach with content analysis was used. Telephone interviews were conducted with 23 caregivers who participated in the intervention. FINDINGS: Five themes emerged from the content analysis: consolidating physical care, adopting a positive attitude, strengthening the support available to the caregiver, strengthening spirituality and strengthening relationships. CONCLUSION: The themes showed a positive impact of the intervention on aspects such as the caregiver's ability to cope, spirituality and social support of caregivers. The results also indicated the possibility of conducting this type of study to identify other assessment variables for future interventions.

Positive Mental Health Scale (PMHS) in Parents of Children with Cancer: A Psychometric Evaluation Using Item Response Theory.

Mental health is currently a public health issue worldwide. However, evidence is lacking regarding the validity of the instruments used to measure and assess positive mental health in specific populations. The objective of this study was to evaluate the psychometric properties of the PMHS using IRT. A cross-sectional retrospective study with non-probabilistic convenience sampling was conducted with 623 parents of children undergoing cancer treatment at the National Institute of Health in Mexico City. The participants responded to a battery of tests, including a sociodemographic questionnaire, the PMHS, Measurement Scale of Resilience, Beck Depression Inventory, Inventory of Quality of Life, Beck Anxiety Inventory, an interview regarding caregiver burden, and the World Health Organization Well-Being Index. PMHS responses were analyzed using Samejima's graded response model. The PMHS findings indicated that the IRT-based graded response model validated the single latent trait model. The scale scores were independent of depression, anxiety, well-being, caregiver burden, quality of life, and resilience. The PMHS scores were associated with low subjective well-being. The PMHS findings reveal that from an IRT-based perspective, this scale is unidimensional and is a valid, reliable, and culturally relevant instrument for assessing positive mental health in parents of children with chronic diseases.

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.

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.

Percepções de cuidado ao idoso dependente: estudo qualitativo / Perceptions of care for dependent older adults: a qualitative study / Percepciones de cuidado a ancianos dependientes: estudio cualitativo

Objetivo: compreender as percepções de cuidadores familiares sobre os cuidados aos idosos dependentes. Método: estudo qualitativo na perspectiva do Interacionismo Simbólico, conduzido pelo movimento interpretativo das experiências de cuidado de idosos acamados, após aprovação dos Comitês de Ética em Pesquisa das instituições envolvidas. Participaram oito cuidadores residentes em Palmas, TO, em janeiro a julho de 2020. Os dados foram coletados por meio da observação não participante e entrevista semiestruturada e utilizou-se a análise de conteúdo. Resultados: a partir das falas dos cuidadores, identificaram-se três categorias: "Retribuindo os cuidados de outrora", "Bem-estar, gratidão e afeto" e "Dificuldades no cuidado". O ato de cuidar foi expresso como oportunidade para retribuição, envolvido por sentimentos de satisfação, alegrias e gratidão, mas também, tristeza, mágoa, frustração, impotência e medo da finitude do idoso. Considerações finais: o ato de cuidar de idosos dependentes é marcado por experiências afetivas que provocam vivências de momentos de alegrias e de dificuldades.

Objective: to understand family caregivers' perceptions of care for dependent older adults. Method: this qualitative study was conducted, after research ethics committee approval, from the perspective of Symbolic Interactionism, by the interpretative movement of experiences of caring for very dependent older adults. Eight caregivers residing in Palmas, Tocantins, participated between January and July 2020. Data were collected through non-participant observation and semi-structured interview, and underwent content analysis. Results: the categories identified from the caregivers' statements were: "Repaying care from the past", "Wellbeing, gratefulness, and affection" and "Difficulties in care". The act of caring was expressed as an opportunity for retribution, enveloped in feelings of satisfaction, joy, and gratitude, but also sadness, grief, frustration, impotence, and fear of the older person's finitude. Final considerations: the act of caring for dependent older people is marked by affective experiences that lead to moments of joy and difficulties.

Objetivo: comprender las percepciones de los cuidadores familiares sobre el cuidado de ancianos dependientes. Método: estudio cualitativo en la perspectiva del Interaccionismo Simbólico, realizado por el movimiento interpretativo de las experiencias de cuidado a ancianos encamados, tras la aprobación de los Comités de Ética en Investigación de las instituciones involucradas. Participaron ocho cuidadores residentes en Palmas, TO, de enero a julio de 2020. Los datos fueron recolectados a través de observación no participante y se utilizó análisis de contenido. Resultados: a partir de las declaraciones de los cuidadores, fueron identificadas tres categorías: "Retribuyendo el cuidado del pasado", "Bienestar, gratitud y afecto" y "Dificultades en el cuidado". El acto de cuidar se expresó como una oportunidad de retribución, acompañado de sentimientos de satisfacción, alegría y gratitud, pero también de tristeza, pena, frustración, impotencia y miedo a la finitud del anciano. Consideraciones finales: el acto de cuidar a ancianos dependientes está marcado por experiencias afectivas que conducen a vivencias de momentos de alegría y dificultades.

O significado do consumo de psicofármacos pelos familiares de pessoas com transtorno bipolar / The meaning of psychotropic drugs use by family members of people with bipolar disorder / Significado del consumo de psicotrópicos por familiares de personas com trastorno bipolar

Familiares são importantes cuidadores de pessoas com transtorno bipolar (TB), podendo estar vulneráveis ao assumir esse cuidado e buscarem algum tipo de apoio, como o consumo de psicofármacos. O objetivo deste estudo foi compreender o significado que os familiares cuidadores atribuem para o próprio consumo do psicofármaco. Trata-se de estudo qualitativo com 32 participantes que utilizou o Interacionismo Simbólico (referencial teórico) e a Teoria Fundamentada nos Dados (referencial metodológico). Os dados foram analisados em três etapas: codificação aberta, axial e seletiva. O familiar é impactado por ter que assumir o cuidado e precisa buscar alternativas para se adaptar às dificuldades e efeitos disso. Assim, ele busca o consumo de psicofármacos, mas tal consumo é visto e compreendido de maneiras diferentes ao longo do processo de utilização. Os resultados desta pesquisa oferecem maior compreensão do fenômeno estudado e subsídios para a melhoria da assistência para essa clientela

Family members are essential caregivers of people with bipolar disorder (BD) and may be vulnerable upon assuming this care, seeking some support such as the use of psychotropic drugs. The objective of this study was to understand the meaning that family caregivers attribute to their psychotropics use. This is a qualitative study with 32 participants that used Symbolic Interactionism (theorical reference) and the Grounded Theory (methodological reference). Data were analyzed in three steps: open, axial and selective coding. The family member is impacted by having to assume the care and needs to look for alternatives to adapt to the difficulties and effects of this care. Hence, they seek the use of psychotropics, but this consumption is seen and understood differently throughout the utilization process. This study offers a better understanding of the studied phenomenon and subsidies to improve the assistance to this clientele.

La familia es importante cuidadora de personas con trastorno bipolar (TB) y por asumir ese cuidado se quedan vulnerables a la búsqueda de apoyo por medio del consumo de psicofármaco. Por ese motivo, el objetivo de este estudio fue el de comprender el significado que los familiares cuidadores atribuyen al proprio consumo de psicofármaco. El estudio ocurrió por análisis cualitativo de 32 participantes y utilizó el Interaccionismo Simbólico (referencial teórico) y la Teoría Fundamentada en Datos (referencial metodológico). El análisis de datos ocurrió en tres etapas: la codificación abierta, axial y selectiva. El familiar es impactado por asumir el cuidado y necesita buscar alternativas para adaptarse a las dificultades y efectos de eso. Por lo tanto, se busca el consumo de psicofármacos, pero dicho consumo es visto y comprendido de diferentes maneras a lo largo del proceso de utilización. Los resultados de esta pesquisa ofrecen una comprensión más grande del fenómeno estudiado y ofrecen también subsidio para perfeccionamiento de la asistencia a eses clientes.

Meanings and Experiences of End-of-Life Patients and Their Family Caregivers in Hospital-to-Home Transitions: A Constructivist Grounded Theory Study.

This study explored the meanings and experiences of patients with terminal chronic diseases and their caregivers, who face the imminence of death in the home environment after hospital discharge. The qualitative study used constructivist grounded theory. The participants were individuals with a terminal chronic illness, discharged to home, and their family caregivers. Data were gathered from in-depth interviews and field notes, and a comparative analysis was conducted to identify categories and codes, according to Charmaz's theory. The sample consisted of 21 participants. Three inter-related data categories emerged: "Floating between acceptance and resistance: Perceiving the proximity of death", "Analysing the end from other perspectives: it is in the encounter with death that life is understood" and "Accepting the path: between the love of letting go and the love of wanting to stay". The categories translate the reconstruction of those facing end-of-life occurring in the home environment. It is amid the imminence of death that life gains intensity and talking about the finitude of life configures an opportunity to see life from other perspectives. Giving voice to individuals facing the mishaps of a terminal illness fosters the path to a comfortable death. For health professionals, it is an opportunity to provide structured and humanized care with an ethical attitude, in defence of human dignity.

Depression Associated with Caregiver Quality of Life in Post-COVID-19 Patients in Two Regions of Peru.

Due to COVID-19, the workload experienced by caregivers has increased markedly which has led them to experience fatigue, anxiety and depression. This study aims to determine the relationship between quality of life and depression in caregivers of post-COVID-19 patients in two regions of Peru. In a cross-sectional analytical study, the sample was non-probabilistic and by snowball, and consisted of 730 caregivers, to whom the questionnaires "Modified Betty Ferell Quality of Life" and the "Beck Depression Inventory" were applied. It was determined that being a male caregiver (OR: 2.119; 95% CI: 1.332-3.369) was associated with a good quality of life. On the other hand, caregivers who had children (OR: 0.391; 95% CI: 0.227-0.675), were vaccinated against COVID-19 (OR: 0.432; 95% CI: 0.250-0.744), were immediate family members (OR: 0.298; 95% CI: 0.117-0.761) and had high depression (OR: 0.189; 95% CI: 0.073-0.490) were associated with poor quality of life. The results of this study allow us to conclude the association between depression and poor quality of life in caregivers of these patients so it is necessary to monitor the mental health of caregivers, and to develop adaptation strategies to pandemic conditions.

Substance Use in Relation to Mental Illness: A Study of Mexican-Origin Latinos with Schizophrenia and Their Family Members.

Little is known about family context and substance use behaviors among Latinos with schizophrenia. Learning about patient and family caregiver perceptions of use is critical to our understanding of how best to support these vulnerable patients and family caregivers. This study explored perceptions of substance use in relation to mental illness among Latinos primarily of Mexican origin with schizophrenia and their family caregivers. Semistructured interviews were conducted with 34 participants (20 family caregivers; 14 patients) with direct and indirect substance use experience, in their preferred language. Data were analyzed using thematic analysis, which consisted of comparing codes across and within patient and family caregiver transcripts. Findings revealed that substance use affected well-being, particularly patient recovery and caregiver burden. Strategies to address well-being included limiting substance use, being vigilant about patient use, and communicating the negative impact of use. The environmental impact and stigma of substance use were major contextual challenges. Patients addressed these by limiting their socialization. Family social context was important to how substance use was perceived and managed by patients and caregivers. As such, treatment models should consider a holistic perspective that incorporates family context when addressing substance use among Latinos with schizophrenia.

Resilience measurement scale in family caregivers of children with cancer: Multidimensional item response theory modeling.

Background: Currently, information about the psychometric properties of the Resilience Measurement Scale (RESI-M) in family caregivers of children with cancer according to item response theory (IRT) is not available; this information could complement and confirm the findings available from classical test theory (CTT). The objective of this study was to test the five-factor structure of the RESI-M using a full information confirmatory multidimensional IRT graded response model and to estimate the multidimensional item-level parameters of discrimination (MDISC) and difficulty (MDIFF) from the RESI-M scale to investigate its construct validity and level of measurement error. Methods: An observational study was carried out, which included a sample of 633 primary caregivers of children with cancer, who were recruited through nonprobabilistic sampling. The caregivers responded to a battery of tests that included a sociodemographic variables questionnaire, the RESI-M, and measures of depression, quality of life, anxiety, and caregiver burden to explore convergent and divergent validity. Results: The main findings confirmed a five-factor structure of the RESI-M scale, with RMSEA = 0.078 (95% CI: 0.075, 0.080), TLI = 0.90, and CFI = 0.91. The estimation of the MDISC and MDIFF parameters indicated different values for each item, showing that all the items contribute differentially to the measurement of the dimensions of resilience. Conclusion: That regardless of the measurement approach (IRT or CTT), the five-factor model of the RESI-M is valid at the theoretical, empirical, and methodological levels.

The impact of stressors and overload on informal caregivers of patients with cirrhosis: The first use of the Burden Scale for Family Caregivers in Brazil.

INTRODUCTION: Cirrhosis affects liver functions and compromises much of the body's organs. The significant increase in chronic diseases, including cirrhosis, has led to changes in medical practice and health systems, leading the informal caregiver to play a major role because of family ties or some level of proximity to the patient, assuming daily care function. However, the burden generated by informal caregivers for uninterrupted care is present at different levels (physical, mental, social, professional, and financial) and even in the prognosis of the patient. OBJECTIVE: The present study aims to evaluate the impact of stressors and overload on informal caregivers of cirrhosis patients. METHOD: Cross-sectional study, conducted with 54 informal caregivers of cirrhosis patients, followed up at the Liver Transplant Service Outpatient Clinic of the University of São Paulo School of Medicine Hospital das Clínicas, where they had access to a sociodemographic questionnaire, history of the patient's disease and the scale Burden Scale for Family Caregivers. RESULTS: It was observed that higher levels of education and income of the caregiver correlates with a lower degree of stress. In addition, there is a significant difference found in the caregiver's age variable, which indicates that the youngest are those who have the highest degree of stress. The variable Na mEg/l of the patient also presents a statistically significant difference. CONCLUSION: Our study was a precursor using the BSFC scale of worldwide coverage and that had not yet been applied in any study in Brazil, thus allowing a look at the various aspects that affect the quality of life of caregivers of patients with cirrhosis. Our results and the literature corroborate the importance not only of the patient, but also the informal caregiver's health.

"You begin to give more value in life, in minutes, in seconds": spiritual and existential experiences of family caregivers of patients with advanced cancer receiving end-of-life care in Brazil.

PURPOSE: Facing the end of life may trigger significant distress in family caregivers of patients with advanced cancer. However, few studies have addressed the spiritual and existential concerns of these family caregivers in their end-of-life care journey. This study aimed to understand the spiritual and existential experience of family caregivers of patients with advanced cancer facing the end of life in Brazil. METHODS: A purposive sample of 16 family caregivers of hospitalized terminally ill cancer patients in Brazil participated in in-depth interviews. Data collection and analysis were based on interpretative phenomenological analysis. RESULTS: Three superordinate themes in their spiritual and existential experience were identified: (i) connectedness through caregiving, personal relationships, and spiritual beliefs; (ii) shifting hope: from death as a possibility to preparation for impending death; (iii) reframing suffering and meaning. For these caregivers, the relationship with the patient and with others, their spiritual beliefs, and hope were significant sources of meaning. Hope was sustained by death avoidance, oscillating with death acceptance and hope that it would occur with comfort. Family caregivers also experienced existential and spiritual suffering in the form of guilt, suppressed emotions, and loneliness. CONCLUSION: Health care providers should address and support caregivers' spiritual needs and their relationships with the patient and others during end-of-life care and facilitate reflection regarding existential concerns, meaning, and preparation for impending death.