Demographic Profile, Health, and Associated Factors of Family Caregivers and Functionality of Hospitalized Older Adults: Cross-Sectional, Exploratory, and Descriptive Study.

BACKGROUND: The longevity of the world population can contribute to an increase in hospitalizations and, consequently, to the emergence of functional limitations, resulting in the need for family caregivers. Hospitalized older adults may become dependent and require more care, increasing the burden on family caregivers. Thus, the nursing team in the hospital environment faces a new situation: an increase in the number of older adults occupying hospital beds and the presence of their family caregivers. OBJECTIVE: We aimed to analyze the association between the demographic variables of interest and the self-rated health of family caregivers and to describe the functionality of older adults hospitalized in a university hospital in the Amazonian context. METHODS: This cross-sectional, quantitative, exploratory, and descriptive study was carried out through individual interviews with 98 interviewees, divided into 49 family caregivers and 49 older adults hospitalized in the surgical clinic sector of a university hospital in Brazil between February and March 2023. Demographic data and health conditions were collected from family caregivers, and to describe the functionality of hospitalized older adults, the Barthel Index was applied. Descriptive (frequency and percentage) and inferential analyses were used, and the student t test was applied. The significance level of 5% was adopted. RESULTS: Among the 49 family caregivers, the majority were women (n=40, 81.6%) with an average age of 46.9 (SD 13.3) years. Most were single (n=28, 57.1%) and had completed an average level of education (n=26, 53.1%). Additionally, 25 (51%) caregivers were caring for their parents. Regarding health conditions, respondents self-assessed their health as good (25/49, 51%; P=.01), and they considered that their health status was not affected by the provision of care (36/49, 73.5%; P=.01). There was a significant association between demographic variables (ie, gender, age, and education) and self-assessment of family caregivers (P=.01, P=.01, and P=.04, respectively). Of the 49 older adults hospitalized, the majority (n=31, 63.2%) were men, with a mean age of 69.2 (SD 7.12) years. Regarding the assessment of functionality, most older adults were classified as having mild dependence on care (n=23, 46.9%), specifically in the age group between 60 and 69 years (21/49, 67.8%). CONCLUSIONS: The data revealed that female gender, age, and education of family caregivers contributed favorably to the provision of care to hospitalized older adults with a lower degree of functional dependence. It is important to emphasize that during the older adult's hospitalization, the family caregiver should not be seen as a delegation of responsibilities or as a complement of human resources to assist in their recovery. Health professionals need to implement assertive interventions so that the family caregiver functions as a therapeutic resource.

Nursing interventions to empower the family caregiver of person with lower limb amputation: scoping review / Intervenções de Enfermagem para capacitar o cuidador familiar de uma pessoa com amputação de membro inferior: revisão de escopo / Intervenciones de enfermería para capacitar al cuidador familiar de una persona con amputación de miembro inferior: revisión de alcance

ABSTRACT Objectives: to map nursing interventions that empower the Family caregiver of the person with lower limb amputation for is role. Methods: scoping review guided by Joanna Briggs Institute methodology conducted in different databases (including gray literature). Results: six studies published between 2009 and 2021 were included. Interventions of counselling and support for patients and family; peer support interventions performed by a certified pair; involvement of caregivers or family members in support groups; and key interventions for patient and family caregiver psychological balance. Two studies discussed the importance of caregiver and amputee training and development of coping skills. Another study recommended Interventions of informative support for caregivers regarding care for the amputee and adaptation to home. Conclusions: results of this review allow the identification of recommendations (guidelines) for practice and recommendations/suggestions for interventions according with identified needs of family caregivers of patients with lower limb amputation.

RESUMO Objetivos: mapear intervenções de enfermagem que capacitem o cuidador familiar da pessoa com amputação de membro inferior para seu papel. Métodos: revisão de escopo orientada pela metodologia do Joanna Briggs Institute realizada em diferentes bases de dados (incluindo literatura cinzenta). Resultados: foram incluídos seis estudos publicados entre 2009 e 2021. Intervenções de aconselhamento e apoio para pacientes e familiares; intervenções de apoio de pares realizadas por uma dupla certificada; envolvimento de cuidadores ou membros da família em grupos de apoio; e intervenções-chave para o equilíbrio psicológico do paciente e do cuidador familiar. Dois estudos discutiram a importância do treinamento do cuidador e do amputado e do desenvolvimento de habilidades de enfrentamento. Outro estudo recomendou intervenções de suporte informativo para os cuidadores com relação aos cuidados com o amputado e à adaptação ao lar. Conclusões: os resultados dessa revisão permitem a identificação de recomendações (diretrizes) para a prática e recomendações/sugestões para intervenções de acordo com as necessidades identificadas dos cuidadores familiares de pacientes com amputação de membros inferiores.

RESUMEN Objetivos: mapear intervenciones de enfermería que capaciten al cuidador familiar de la persona con amputación de miembro inferior para su rol. Métodos: es una revisión de alcance guiada por la metodología del Instituto Joanna Briggs, llevada a cabo en diferentes bases de datos (incluyendo literatura gris). Resultados: se tuvieron en cuenta seis estudios publicados entre 2009 y 2021, a saber: intervenciones de asesoramiento y apoyo para pacientes y familiares; intervenciones de apoyo entre iguales realizadas por un par de profesionales certificados; participación de cuidadores o familiares en grupos de apoyo e intervenciones clave para el equilibrio psicológico del paciente y del cuidador familiar. Dos estudios analizaron la importancia de la formación del cuidador y del amputado y del desarrollo de habilidades de afrontamiento. Otro estudio recomendó intervenciones de apoyo informativo para los cuidadores en relación con el cuidado del amputado y su adaptación a la vida hogareña. Conclusiones: los resultados de esta revisión permiten identificar recomendaciones/directrices para la práctica y recomendaciones/sugerencias de intervenciones según las necesidades identificadas de los cuidadores familiares de pacientes con amputación de miembros inferiores.

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

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

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

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

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

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

Experiencias del cuidador familiar con la utilización de las Tecnologías de la Información y la Comunicación: Implementación de una intervención educativa / Experiences of the family caregiver with the use of Information and Communication Technologies: Implementation of an educational intervention

Introducción: Las Tecnologías de la Información y Comunicación (TICs) son un recurso a través del cual los profesionales de la salud pueden proporcionar apoyo y asesoría a distancia. Objetivo: Describir las experiencias de una cuidadora familiar (CF) con el uso de las TICs en la implementación de una intervención educativa como apoyo para su autocuidado y el cuidado del adulto mayor (AM). Metodología: Estudio de caso con abordaje cualitativo. Una pasante de la licenciatura en Enfermería y Obstetricia implementó una intervención educativa en una CF del 15 diciembre 2020 al 25 junio 2021, periodo de pandemia por COVID-19. La recolección de datos se realizó a partir de entrevistas a profundidad, mensajes de texto y voz de WhatsApp, así como por observación. Se realizó análisis de contenido tipo temático según de Souza Minayo. Resultados: Se identificó el teléfono celular como el dispositivo más utilizado, las funciones de videollamada y mensaje de voz de WhatsApp como las herramientas más útiles y preferidas por la CF, y las infografías y videos como los materiales educativos más adecuados para esta población. Limitaciones: Solo se incluyó una CF y un AM, lo cual puede generar un sesgo de respuesta, ya que la CF quizás estuvo más motivada y dispuesta a participar que otros cuidadores hipotéticos. Valor: Implementar un nuevo canal de comunicación entre el profesional de enfermería, el AM, la CF y otros familiares. Conclusiones: El uso de las TICs fue aceptado por la CF para recibir capacitación en su autocuidado y cuidado del AM.

Introduction: Health professionals can use Information and Communication Technologies (ICTs) to provide support and advice at a distance. Objective: Description of the experiences of a family caregiver (FC) with the use of ICTs in the implementation of an educational intervention to support her self-care and the care of the Older Adult (OA). Methodology: Case study with qualitative approach. An undergraduate intern in Nursing and Midwifery implemented an educational intervention with a FC from December 15, 2020 to June 25, 2021, during the covid-19 pandemic. Data collection was gathered with in-depth interviews, Whatsapp text and voice messages, as well as direct observation. Thematic type content analysis was performed according to de Souza Minayo. Results: The cell phone was identified as the most used device, Whatsapp video call and voice message functions as the most useful and preferred tools by the FC, and infographics and videos as the most appropriate educational materials for this population. Limitations: Only one female FC and one male OA were included in this study. This may generate response bias, as the FC was perhaps more motivated and willing to participate than other hypothetical caregivers. Value: Implementation of a new communication channel between the nursing professional, the OA, the FC, and other family members. Conclusions: Training in the use of ICTs was accepted by the FC to improve her self-care and care of the OA.

Barriers to and enablers of the promotion of patient and family participation in primary healthcare nursing in Brazil, Germany and Spain: A qualitative study.

BACKGROUND: Most health systems are insufficiently prepared to promote the participation of chronically ill patients in their care. Strong primary health care (PHC) strengthens patients' resources and thus promotes their participation. The tasks of providing continuous care to people with chronic diseases and promoting self-management are the responsibility of PHC nurses. Recent research assessing enablers of or barriers to nurses' efforts to support patients' participation has mostly not considered the special situation of patients with chronic diseases or focused on the PHC setting. OBJECTIVE: To investigate enablers of and barriers to PHC nurses' efforts to promote the participation of chronically ill patients in their care. METHODS: We interviewed 34 practicing PHC nurses and 23 key informants with advanced knowledge of PHC nursing practice in Brazil, Germany and Spain. The data was analyzed using thematic coding. RESULTS: We identified four categories of barriers and enablers. (1) Establishing bonds with patients: Interviewees emphasized that understanding patients' views and behaviours is important for PHC nurses. (2) Cooperation with relatives and families: Good relationships with families are fundamental, however conflicts within families could challenge PHC nurses efforts to strengthen participation. (3) Communication and cooperation within PHC teams: PHC nurses see Cooperative team structures as a potential enabler, while the dominance of a 'biomedical' approach to patient care is seen as a barrier. (4) Work environment: Interviewees agreed that increased workload is a barrier to patient participation. DISCUSSION AND CONCLUSIONS: Supporting patient participation should be acknowledged as an important responsibility for nurses by general practitioners and PHC planners. PHC nurses should be trained in communicative competence when discussing participation with chronically ill patients. Interprofessional education could strengthen other professionals' understanding of patient participation as a nursing task. PATIENT OR PUBLIC CONTRIBUTION: This study is part of a research project associated with the research network 'forges: User-oriented care: Promotion of health in the context of chronic diseases and care dependency'. The study's focus and provisional results were discussed continuously with partners in health and social care practice and presented to and discussed with the public at two conferences in which patient representatives, professionals and researchers participated.

Validez y confiabilidad del instrumento Adopción del rol de cuidador con uso de medicamentos / Validade e confiabilidade do instrumento Adoção do papel de cuidador com uso de medicamentos / Validity and reliability of the instrument Adoption of the caregiver role under medication use

Objetivo: realizar la validación de constructo, convergente y discriminante del instrumento Adopción del rol del cuidador con uso de medicamentos (ROL-M) y evaluar la consistencia interna de este. Materiales y método: estudio de validación psicométrica realizado entre agosto de 2020 y febrero de 2022, con una muestra de 321 cuidadores familiares. Resultados: escala con 32 ítems originales, que luego del análisis del constructo teórico y de los resultados iniciales condujo a la eliminación de 12 ítems y la realización de un nuevo análisis factorial exploratorio forzado a tres factores con los ítems restantes. Los 20 ítems definitivos fueron ajustados a los factores con adecuadas cargas y son congruentes con el planteamiento teórico del instrumento. Se obtuvo un alfa de Cronbach de 0,72, un coeficiente de Pearson de 0,233 con el instrumento rol y uno de -0,147 con el instrumento Zarit, lo que demuestra su validez convergente y divergente, respectivamente. Conclusiones: el instrumento rol-M mide de forma lógica el constructo y los ítems que lo conforman representan adecuadamente sus dominios. Este se proyecta como una herramienta clínica clave para desarrollar actividades educativas con relación a la promoción de la transición del cuidado y la educación farmacológica en el hogar.

Objetivo: realizar a validação do construto, convergente e discriminante, e avaliar a consistência interna do instrumento Adoção do papel do cuidador no uso de medicamentos (ROL-M). Materiais e método: estudo de validação psicométrica realizado entre agosto de 2020 e fevereiro de 2022, com amostra de 321 cuidadores familiares. Resultados: escala com 32 itens originais, que, após a análise do construto teórico e dos resultados iniciais, decidiu-se eliminar 12 itens e realizar uma nova análise fatorial exploratória forçada a três fatores com os itens restantes. Os 20 itens definitivos foram ajustados aos fatores com cargas adequadas e condizentes com a abordagem teórica do instrumento. Obteve-se alfa de Cronbach de 0,72, coeficiente de Pearson de 0,233 com o instrumento rol-M e de -0,147 com o instrumento de Zarit, o que demonstra sua validade convergente e divergente, respectivamente. Conclusão: o instrumento ROL-M mensura logicamente o constructo, e os itens que o compõem representam adequadamente seus domínios. Desenha-se como uma ferramenta clínica-chave para desenvolver atividades educacionais com relação à promoção da transição de cuidados e educação farmacológica no domicílio.

Objective: To conduct the construct, convergent, and discriminant validation of the instrument "Adoption of the role of the caregiver under medication use" (ROL-M) and evaluate its internal consistency. Materials and method: Psychometric validation study conducted between August 2020 and February 2022, with a sample of 321 family caregivers. Results: Scale with 32 original items, which after the analysis of the theoretical construct and initial results was subject to the elimination of 12 items and a new exploratory factor analysis forced to three factors with the 20 remaining items. These items were then adjusted to the factors with adequate loads and are consistent with the theoretical approach of the instrument. A Cronbach's alpha of 0.72 was obtained, while Pearson coefficient was 0.233 with the rol instrument and -0.147 with the Zarit instrument, demonstrating its convergent and divergent validity, respectively. Conclusions: The instrument Role Adoption in Medication Administration ROL-M logically measures the construct and the items that comprise this tool adequately represent its domains. This is projected as a key clinical input to develop educational activities related to the promotion of caregiving transition and pharmacological education at home.

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

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

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

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

End-of-life perspectives according to family caregivers of older adults with dementia: A qualitative study.

BACKGROUND: Family caregivers are primarily responsible for the care of older adults with dementia, and the demands of this care increase as the end of life approaches. Experiencing the end of a family member's life can be stressful, and caregivers consider important to know how to identify when their loved one is approaching the end of life in order to prepare for this moment. Thus, as the family is primarily responsible for the older adult with dementia, it is essential to know the meanings of the end of life attributed by family caregivers. OBJECTIVE: To analyze the perceptions of family caregivers of older adults with dementia about the end of life. METHODS: This is a qualitative, descriptive and exploratory study. The convenience sample consisted of family caregivers of older adults with dementia. The inclusion criteria were being a family member directly involved in the care of the older adult with dementia and being 18 years of age or older. Data were collected from individual semi-structured interviews. The number of participants was defined during the interviews using the saturation criterion. Data were analyzed using the thematic analysis technique. RESULTS: A total of 63 family caregivers participated, 74.6% of whom were women, predominantly wives and daughters. Two themes resulted from the data analysis: (i) Different perspectives on the end of life: from death itself to a sad, painful and long grief process; and (ii) End of life in the perspective of transcendence. The meaning of the end of life was perceived in different ways by family caregivers. Understanding how they perceive and experience the end-of-life process of the older adult with dementia helps to clarify the best ways for the health professionals to approach and intervene with these families.

Iniquidades de gênero entre cuidadoras de idosos dependentes / Gender inequalities among caregivers of dependent older adults

Resumo Esta pesquisa tem como objetivo compreender as experiências e os sentidos atribuídos pelas mulheres para se tornarem cuidadoras de idosos dependentes, à luz da análise da socialização de gênero. Estudo qualitativo com 53 cuidadoras familiares, realizado de junho a setembro de 2019, nas cidades de Belo Horizonte, Rio de Janeiro, Porto Alegre, Araranguá, Manaus, Fortaleza e Teresina. A análise das informações guiou-se pelo referencial teórico-metodológico da hermenêutica-dialética. Os achados foram organizados em quatro categorias: a função cuidadora como algo "natural" da mulher; homens ausentes no ato de cuidar e a manutenção da masculinidade; a responsabilidade marital de esposas e a identidade de gênero para o cuidar; a economia e o cisheteropatriarcado como norteadores para assumir o cuidado. As mulheres exercem o cuidado em decorrência da socialização de gênero. Esse fato é potencializado pelas circunstâncias de estarem solteiras, residirem com a pessoa idosa, ausência masculina na partilha do cuidado, responsabilidade marital e pressão para se retirarem do mercado de trabalho. Em conclusão, o modelo de cuidado centrado na família é sustentado pelas mulheres devido as dinâmicas sociais construídas em uma sociedade capitalista e centrada no cisheteropatriarcado. Isto sinaliza para a necessidade de a sociedade intervir, refletir e propor ações para um cuidado equilibrado entre homens e mulheres.

Abstract This research aimed to understand the experiences and meanings that women attributed to becoming caregivers of dependent older adults, considering the analysis of gender socialization. Qualitative study with 53 family caregivers, carried out from June to September 2019, in the cities of Belo Horizonte, Rio de Janeiro, Porto Alegre, Araranguá, Manaus, Fortaleza, and Teresina. The analysis of the information was guided by the theoretical-methodological framework of hermeneutics-dialectics. The findings were organized into four categories: the caregiver role as something "natural" for women; men absent from the act of caring and maintenance of masculinity; the marital responsibility of wives and gender identity for care; and the economy and cisheteropatriarchy as determinants to undertake care. Women exercise care due to gender socialization. This fact is reinforced by the circumstances of being single, living with the older adults, male absence from sharing care, marital responsibility, and pressure to withdraw from the job market. In conclusion, the family-centered care model is sustained by women, due to the social dynamics built in a capitalist, cisheteropatriarchal-centered society. This indicates the need for society to intervene, reflect, and propose actions for balanced care between men and women.

Invenções tecnológicas de cuidadores familiares na perspectiva de profissionais da atenção domiciliar / Invenciones tecnológicas de los cuidadores familiares desde la perspectiva de los profesionales del cuidado domiciliario / Technological inventions of family caregivers from the perspective of home care professionals

Resumo Objetivo descrever as invenções tecnológicas desenvolvidas por cuidadores familiares na perspectiva de profissionais da atenção domiciliar, discutindo-as a luz das necessidades de cuidado no domicílio. Método pesquisa qualitativa, multicêntrica, apoiada no modelo teórico das Necessidades Humanas Básicas, de Wanda Horta. Os dados foram obtidos a partir de entrevistas com 52 profissionais de equipes de Atenção Domiciliar de quatro municípios de Minas Gerais, submetidas à Análise de Conteúdo. Resultados foram identificadas 27 invenções criadas por cuidadores com materiais/recursos existentes no domicílio. A maior parte das invenções foi motivada pelas necessidades psicobiológicas de movimentação, posicionamento, proteção e conforto, alimentação, eliminações fisiológicas, higiene e terapêutica medicamentosa. Outras invenções foram motivadas pelas necessidades psicossociais e psicoespirituais para melhorar a comunicação entre o cuidador e o familiar, proporcionar lazer, distração e conforto espiritual. Conclusões/Implicações para a prática os processos de invenção de cuidadores explicitam consciência reflexiva ao articularem, assistemática e intuitivamente, recursos e objetos existentes no domicílio, gerando estratégias ou produtos semelhantes a tecnologias existentes. Estas invenções podem ser avaliadas, estimuladas, orientadas ou refutadas pelos profissionais de saúde cotidianamente envolvidos no cuidado domiciliar.

Resumen Objetivo describir las invenciones tecnológicas desarrolladas por los cuidadores familiares desde la perspectiva de los profesionales de la atención domiciliaria, discutiéndolas a la luz de las necesidades de atención en el hogar. Método investigación cualitativa, sustentada en el modelo teórico de las Necesidades Humanas Básicas. Los datos fueron obtenidos a partir de entrevistas con 52 profesionales de equipos de Atención Domiciliaria de cuatro municipios de Minas Gerais, sometidos al Análisis de Contenido. Resultados se identificaron 27 inventos creados por cuidadores con materiales disponibles en casa. La mayoría de los inventos fueron motivados por las necesidades psicobiológicas de movimiento, posicionamiento, protección y comodidad, alimentación, eliminaciones, higiene y farmacoterapia. Otros inventos fueron motivados por las necesidades psicosociales y psicoespirituales de mejorar la comunicación entre el cuidador y el familiar, proporcionando entretenimiento, distracción y consuelo espiritual. Conclusiones/Implicaciones para la práctica las invenciones de los cuidadores muestran una conciencia reflexiva al articular, de manera asistemática e intuitiva, los recursos y objetos existentes en el hogar, generando estrategias o productos similares a las tecnologías existentes. Estas invenciones pueden ser evaluadas, estimuladas, guiadas o refutadas por profesionales de la salud.

Abstract Objective To describe the technological inventions developed by family caregivers from the perspective of home care professionals, discussing them in the light of the care needs at home. Method qualitative, multicenter research, supported by the theoretical model of the Basic Human Needs of Wanda Horta. The data were obtained from interviews with 52 professionals from Home Care teams in four municipalities of Minas Gerais, which were submitted to Content Analysis. Results were identified 27 inventions created by caregivers with materials/resources existing at home. Most of the inventions were motivated by the psychobiological needs of movement, positioning, protection and comfort, feeding, physiological eliminations, hygiene and drug therapy. Other inventions were motivated by psychosocial and psychospiritual needs to improve communication between caregiver and family member, provide leisure, distraction, and spiritual comfort. Conclusions/Implications for practice the processes of invention of caregivers show reflective awareness by articulating, unsystematically and intuitively, existing resources and objects at home, generating strategies or products similar to existing technologies. These inventions can be evaluated, stimulated, guided or refuted by health professionals involved in home care on a daily basis.

Implicações do cuidado informal à saúde de pessoas dependentes assistidas no domicílio pós-alta hospitalar / Implicaciones de la atención informal para la salud de las personasdependientes atendidas en el domicilio tras el alta hospitalaria / Implications of informal health care of dependent people assisted at home after hospital discharge

Objetivo:identificar as implicações do cuidado informal à saúde de pessoas dependentes assistidas no domicílio após a alta hospitalar. Método: estudo transversal realizado com 41 díadescuidadoresinformais-pessoas dependentes que receberam alta para o domicílio. Coletaram-se os dados por meio de questionários. Realizou-se Regressão Logística Binomial. Resultados: deixar as atividades laborais eleva em 55,79 as chances de cuidar de pessoa com lesão por pressão. O uso de medicamentos contínuos associou-se ao desenvolvimento de lesões por pressão (OR=37,80), eventos adversos (OR=40,39) e óbito (OR=54,68). O tempo em horas dedicado ao cuidado reduz a chance de lesão por pressão (OR=0,81), a idade do cuidador diminui os eventos adversos (OR=0,91) e o óbito após a desospitalização (OR=0,91). Conclusão: as implicações foram as lesões por pressão, eventos adversos e o falecimento da pessoa dependente após a alta hospitalar, as quais se associaram ànecessidade de deixar o emprego e ao uso de medicações contínuas

Objective:to identify the implications of informal health care for dependent people assisted at home after hospital discharge. Method:a cross-sectional study carried out with 41 dyads of informal caregivers-dependent people who were discharged home. Data were collected through questionnaires. Binomial Logistic Regression was performed. Results:leaving job activities increases the chances of caring for a person with a pressure injury by 55.79. The use of continuous medication was associated with the development of pressure injuries (OR=37.80), adverse events (OR=40.39) and death (OR=54.68). The time in hours dedicated to care reduces the chance of pressure injury (OR=0.81), the age of the caregiver decreases adverse events (OR=0.91) and death after discharge (OR=0.91). Conclusion:the implications were pressure injuries, adverse events and the death of the dependent person after hospital discharge, which were associated with the need to leave the job and the use of continuous medications.

Objetivo:identificar las implicaciones del cuidado informal de la salud para las personas dependientes asistidas en el domicilio después del alta hospitalaria. Método:estudio transversal realizado con 41 díadas de personas dependientes-cuidadoras informales que fueron dadas de alta domiciliarias. Los datos fueron recolectados a través de cuestionarios. Se realizó Regresión Logística Binomial. Resultados:la salida de las actividades laborales aumenta en un 55,79 las posibilidades de cuidar a una persona con lesión por presión. El uso de medicación continua se asoció con el desarrollo de lesiones por presión (OR=37,80), eventos adversos (OR=40,39) y muerte (OR=54,68). El tiempo en horas dedicado al cuidado reduce la posibilidad de lesión por presión (OR=0,81), la edad del cuidador disminuye los eventos adversos (OR=0,91) y la muerte tras el alta (OR=0,91). Conclusión:las implicaciones fueron las lesiones por presión, los eventos adversos y la muerte de la persona dependiente después del alta hospitalaria, que se asociaron con la necesidad de dejar el trabajo y el uso continuo de medicamentos

Coping strategies of caregivers in performing oral hygiene care in adults with special needs: A qualitative study.

INTRODUCTION: Basic and daily oral hygiene care is essential for maintaining oral health in adults with special needs. The caregivers act in this process and need to be understood about the difficulties and the resources they use to deal with this demand. The aim of this qualitative study was to understand the difficulties and strategies of caregivers regarding oral hygiene for adults with special health care needs (SHCN) METHODS: Twenty-one caregivers of adults with SHCN participated in an interview in which the following questions were asked: What are the greatest difficulties in performing oral hygiene for the adult with SHCN you take care? and "How do you overcome these difficulties?" The interviews were recorded and the qualitative data were analyzed using the Discourse of the Collective Subject technique RESULTS: All respondents were female with a mean age of 58.5 years (± 10.8) and the adults with SHCN presented mean age of 30 years (± 18). The greatest difficulty pointed out by caregivers regarding oral hygiene for adults with SHCN was their non-cooperation to do such activity. Regarding coping strategies, caregivers pointed out several strategies to perform oral hygiene in adults with SHCN, such as supervising their brushing, seek for a qualified dentist to assist with this task, performing oral hygiene during the bath, performing physical restraint, among others CONCLUSION: The caregivers' perspectives indicate feelings of failure, discomfort, but also the use of creative resources to deal with the task. The results bring up themes that refer to anxieties and are related to technical and dental issues, that could be explored and need to be recognized by the reference oral healthcare team, whose responsibility it is also to work for the empowerment of caregivers.

Importância da psicoeducação para familiares de pacientes com esquizofrenia e transtorno afetivo bipolar / Importancia de la psicoeducación para los miembros de la familia de pacientes con esquizofrenia y afectivo bipolar / Importance of psychoeducation for families of patients with schizophrenia and bipolar affective disorders

Objetivo: identificar na literatura os impactos da psicoeducação para familiares de pacientes com Esquizofrenia e Transtorno Afetivo Bipolar. Método: revisão integrativa realizada na plataforma BVS por artigos publicados em periódicos nacionais e internacionais, utilizando-se as bases de dados LILACS, MEDLINE e BDENF com os descritores "Esquizofrenia" AND "Transtorno Bipolar" AND "Familiar Cuidador". Foram analisados artigos em português, inglês e espanhol publicados nos últimos dez anos (2010 a 2020). Resultados: Os estudos revisados mostraram que a psicoeducação em enfermagem é um recurso valioso na intervenção com as famílias, além de instrumentalizar os familiares de pacientes portadores de transtorno mental grave em relação à doença de seus entes. Conclusão: Com a Psicoeducação, é possível implementar estratégias de promoção, prevenção e cuidado de enfermagem, não apenas para o indivíduo, mas também para a família, a fim de proporcionar um cuidado integral.(AU)

Objective: to identify in the literature the impacts of psychoeducation on family members of patients with Schizophrenia and Bipolar Affective Disorder. Method: integrative review carried out on the VHL platform for articles published in national and international journals, using the LILACS, MEDLINE and BDENF databases with the descriptors "Schizophrenia" AND "Bipolar Disorder" AND "Family Caregiver". Articles in Portuguese, English and Spanish published in the last ten years (2010 to 2020) were analyzed. Results: The reviewed studies showed that psychoeducation in nursing is a valuable resource in intervention with families, in addition to providing tools for family members of patients with severe mental disorders in relation to their loved ones' illness. Conclusion: With Psychoeducation, it is possible to implement promotion, prevention and nursing care strategies, not only for the individual, but also for the family, in order to provide comprehensive care.(AU)

Objetivo: identificar en la literatura los impactos de la psicoeducación en familiares de pacientes con Esquizofrenia y Trastorno Afectivo Bipolar. Método: revisión integradora realizada en la plataforma BVS de artículos publicados en revistas nacionales e internacionales, utilizando las bases de datos LILACS, MEDLINE y BDENF con los descriptores "Esquizofrenia" Y "Trastorno bipolar" Y "Cuidador familiar". Se analizaron artículos en portugués, inglés y español publicados en los últimos diez años (2010 a 2020). Resultados: Los estudios revisados mostraron que la psicoeducación en enfermería es un recurso valioso en la intervención con las familias, además de brindar herramientas a los familiares de pacientes con trastornos mentales graves en relación con la enfermedad de sus seres queridos. Conclusión: Con la Psicoeducación es posible implementar estrategias de promoción, prevención y atención de enfermería, no solo para el individuo, sino también para la familia, con el fin de brindar una atención integral.(AU)

Construção de uma cartilha educativa para familiares cuidadores sobre cuidado domiciliar ao idoso dependente Amazônico / Construction of an educational booklet for family caregivers about home care for the elderly dependent in the amazon / Construcción de un folleto educativo para cuidadores familiares sobre el cuidado en el hogar de ancianos dependientes en la amazonía

OBJETIVO: descrever a construção de uma cartilha educativa para familiares cuidadores sobre o cuidado domiciliar ao idoso dependente no contexto Amazônico. MÉTODO: trata-se de um estudo metodológico, realizado no período de setembro de 2019 a agosto de 2021. A produção tecnológica seguiu quatro etapas: Levantamento bibliográfico; Construção textual da cartilha; Pesquisa e definição das imagens e Layout e diagramação da cartilha. RESULTADOS: a cartilha aborda os cuidados referentes às dificuldades e necessidades dos cuidadores domiciliares ­ higiene corporal, banho no chuveiro, banho na cama, higiene intima, higiene da boca, troca de fraldas, prevenção de quedas, mobilização e transferência, cuidados com a alimentação, cuidados com os medicamentos, cuidados para evitar quedas, cuidados quanto ao uso de redes e cuidados quanto ao uso de remédios caseiros. CONCLUSÃO: a cartilha apresenta orientações sobre as principais atividades assistenciais que o cuidador desempenha no dia a dia no cuidado à pessoa idosa dependente, sendo divididas em tópicos. A cada atividade seguem orientações necessárias ao cuidado para que o cuidador preste uma assistência mais segura e as dificuldades vivenciadas na prática sejam minimizadas. (AU)

Objective: To describe the construction of an educational booklet for family caregivers about home care for dependent elderly in the Amazon context. Methods: This is a methodological study, carried out from September 2019 to August 2021. Technological production followed four stages: Bibliographic survey; Textual construction of the booklet; Research and definition of images and Layout and diagramming of the booklet. Results: The booklet addresses the care related to the difficulties and needs of home caregivers - body hygiene, showering, bathing in bed, intimate hygiene, mouth hygiene, changing diapers, preventing falls, mobilization and transfer, care with food, care with medications, care to prevent falls, care regarding the use of hammocks and care regarding the use of home remedies. Conclusion: The booklet provides guidance on the main care activities that the caregiver performs on a daily basis in caring for the dependent elderly person, being divided into topics. Each activity follows the necessary care guidelines so that the caregiver provides safer care and the difficulties experienced in practice are minimized. (AU)

Objetivo: Describir la construcción de un folleto educativo para cuidadores familiares sobre el cuidado domiciliario de ancianos dependientes en el contexto amazónico. Métodos: Se trata de un estudio metodológico, realizado de septiembre de 2019 a agosto de 2021. La producción tecnológica siguió cuatro etapas: Encuesta bibliográfica; Construcción textual del folleto; Investigación y definición de imágenes y Maquetación y diagramación del folleto. Resultados: El folleto aborda los cuidados relacionados con las dificultades y necesidades de los cuidadores domiciliarios - higiene corporal, bañarse en la ducha, bañarse en la cama, higiene íntima, higiene bucal, cambio de pañales, prevención de caídas, movilización y traslado, cuidados con la alimentación, cuidados con medicamentos, cuidado para evitar caídas, cuidado con el uso de hamacas y cuidado con el uso de remedios caseros. Conclusión: El folleto brinda orientación sobre las principales actividades de cuidado que el cuidador realiza a diario en el cuidado del anciano dependiente, dividido en temas. Cada actividad sigue las pautas de cuidado necesarias para que el cuidador brinde una atención más segura y se minimicen las dificultades experimentadas en la práctica. (AU)

Caracterización de los cuidadores de pacientes terminales / Characterization of Caregivers of Terminally ill Patients

Introducción: Resultan alarmantes las cifras de pacientes terminales tanto a nivel mundial como en Cuba, por lo que es necesario estudiar la preparación de los cuidadores de estos pacientes. Objetivo: Caracterizar al cuidador del paciente con enfermedad terminal, su preparación, experiencia, conocimientos sobre los cuidados y sobrecarga emocional en el municipio de San Luis. Métodos: Se realizó un estudio descriptivo y transversal en el periodo 2017-2019, en un universo de 47 cuidadores, a los que se les aplicó un muestreo no probabilístico. La muestra quedó conformada por 20 cuidadores que cumplieron los criterios de inclusión establecidos y dieron su consentimiento informado. Los instrumentos usados fueron la entrevista individual y la escala de carga del cuidador de Zarit. Se utilizó el método empírico y el estadístico y los textos se procesaron con Word XP, las tablas y gráficos se realizaron con Excel XP. Resultados: Prevaleció el nivel de escolaridad preuniversitaria y el estado civil casado. El grado de parentesco más frecuente en la muestra fue los hijos que no poseían experiencia previa de cuidado. Las causas más frecuentes de las enfermedades terminales fueron las demencias. Conclusiones: Predominaron los mayores de 60 años, el sexo femenino con escasos conocimientos sobre los cuidados, lo que influyó en la alta sobrecarga emocional presente en ellos(AU)

Introduction: The figures corresponding to terminally ill patients, both worldwide and in Cuba, are alarming, a reason why it is necessary to study the preparation of the caregivers of these patients. Objective: To characterize the caregiver of the terminally ill patient, their preparation, experience, knowledge about care and emotional overload in San Luis Municipality. Methods: A descriptive and cross-sectional study was carried out in the period 2017-2019, with a universe of 47 caregivers, to whom a nonprobabilistic sampling was applied. The sample was made up of twenty caregivers who met the established inclusion criteria and gave their informed consent. The instruments used were the individual interview and the Zarit Caregiver Load Scale. Empirical and statistical methods were used. The texts were processed with Word XP. The tables and graphs were made with Excel XP. Results: There was a prevalence of pre-university education level and married as marital status. The most frequent degree of kinship in the sample was made up of children who had no previous caregiving experience. The most frequent causes of terminal illnesses were dementias. Conclusions: Those over sixty years of age predominated, as well as the female sex with little knowledge about care, which influenced the high emotional overload present in them(AU)

Ensayo controlado aleatorizado de un programa multicomponente para cuidadores informales de pacientes con Alzheimer / Randomized controlled trial of a multicomponent program for informal caregivers of Alzheimer's patients / Ensaio controlado randomizado de um programa multicomponente para cuidadores informais de pacientes com Alzheimer

Resumen Objetivo Evaluar la eficacia del programa multicomponente más respiro en la sobrecarga y el apoyo social de cuidadores informales de pacientes con Trastorno Neurocognitivo Mayor tipo Alzheimer. Materiales y Método Ensayo controlado aleatorizado en paralelo en 58 cuidadores aleatorizados a uno de los tres grupos de comparación: Grupo de intervención multicomponente más respiro (n=19), grupo de sólo respiro (n=19) y grupo control (n=20), se evaluaron la sobrecarga y el apoyo social mediante las escalas de Zarit y Medical Outcomes Study, en línea de base, post intervención a 5 meses y un seguimiento a 10 meses. La evaluación del efecto se realizó mediante un modelo de efectos mixtos de covarianza no estructurada. Resultados Los cuidadores fueron en su mayoría los hijos de los pacientes (72%), mujeres (76%) con una edad media de 55.1(12) años y con educación inferior a secundaria (58%). Se encontró una reducción significativa de la sobrecarga de 13.1 (IC95% -19.3:6.9) puntos en el grupo multicomponente más respiro, con un sostenimiento del efecto a 10 meses (p<0.001). Se encontró un incremento, aunque no significativa del apoyo social post intervención de 10.8 (-1,7; 23,4) para el grupo multicomponente y respiro, sin embargo, el efecto se incrementó en el tiempo logrando un aumento a 13,2 puntos (p=0.039) a los 10 meses de seguimiento. No se observó un efecto significativo en la sobrecarga ni apoyo social para el grupo que solo recibió respiro. Conclusiones El programa multicomponente más respiro mostró tener un efecto benéfico en la sobrecarga y apoyo social de cuidadores de Alzheimer.

Abstract Objective To evaluate the efficiency of a multicomponent plus respite care program on care burden and social support for informal caregivers of patients with major neurocognitive disorders associated with Alzheimer's disease. Materials and Methods A parallel randomized controlled trial was conducted with 58 caregivers who were randomly allocated to one of the following three comparison groups: a multicomponent plus respite care group (n=19), a respite care group (n=19), and a control group (n=20). Burden and social support were assessed by using the Zarit Scale and Medical Outcomes Study at baseline with a post-intervention at 5 months and follow-up at 10 months. The assessment of effects was measured by using a mixed-effects model with an unstructured covariance matrix. Results Caregivers were mostly patients' children (72%), female (76%) having a mean age of 55.1 years (12) and less than secondary education (58%). A significant reduction of 13.1% (95%CI -19.3:6.9) in caregiver burden was found in the multicomponent plus respite care group, showing a sustained effect at 10 months (p<0.001). A non-significant increase of 10.8% (-1.7;23.4) in post-intervention social support was found in the multicomponent plus respite care group. However, the effects increased over time achieving an increase at 13.2% (p=0.039) at the 10-month follow-up. No significant effects on caregiver burden or social support were reported for the respite care group. Conclusions The multicomponent plus respite care group demonstrated beneficial effects on care burden and social support for Alzheimer's caregivers.

Resumo Objetivo Avaliar a eficácia do programa multicomponente mais alívio na sobrecarga e suporte social de cuidadores informais de pacientes com Transtorno Neurocognitivo Maior do tipo Alzheimer. Método Ensaio controlado randomizado em paralelo em 58 cuidadores randomizados para um dos três grupos de comparação: Grupo de intervenção multicomponente mais alívio (n=19), grupo apenas alívio (n=19) e grupo de controle (n=20), foram avaliados a sobrecarga e suporte social usando as escalas de Zarit e Medical Outcomes Study, linha de base, pós-intervenção em 5 meses e um acompanhamento de 10 meses. A avaliação do efeito foi realizada usando um modelo de efeitos mistos de covariância não estruturada. Resultados Os cuidadores eram, em sua maioria, filhos dos pacientes (72%), mulheres (76%) com uma de idade de média de 55,1 (12) anos e com escolaridade inferior ao ensino médio (58%). Foi encontrada uma redução significativa na sobrecarga de 13,1 (IC95% -19,3:6,9) pontos no grupo multicomponente mais alívio, com uma sustentação de efeito em 10 meses (p<0,001). Foi encontrado um aumento, embora não significativo, no suporte social pós-intervenção de 10,8 (-1,7; 23,4) para o grupo multicomponente e alívio, no entanto, o efeito aumentou ao longo do tempo, alcançando um aumento para 13,2 pontos (p=0,039) aos 10 meses de acompanhamento. Nenhum efeito significativo na sobrecarga ou suporte social foi observado para o grupo que apenas recebeu alívio. Conclusões O programa de multicomponente mais alívio mostrou ter um efeito benéfico na sobrecarga e no suporte social dos cuidadores de Alzheimer.

Rol del cuidador familiar novel de adultos en situación de dependencia: Scoping Review / Role of Novice Family Caregivers of Dependent Adults: A Scoping Review / Papel do novo cuidador familiar de adultos em situação de dependência: Scoping Review

Resumen Introducción El incremento del número de personas adultas, en situación de dependencia, discapacidad y con necesidades de cuidado, ha generado el surgimiento de los cuidadores familiares, quienes asumen esta responsabilidad, sin la formación o conocimientos previos, situación que puede comprometer el desempeño de este nuevo rol y sus resultados en el receptor de cuidado. Materiales y Métodos Se realizó un Scoping Review con la metodología de Arksey y O'Malley, que incluyó la revisión de los estudios disponibles en bases de datos en línea, en idioma inglés y español, a partir de lo cual se extrajo información relacionada con la asunción del rol de cuidador familiar novel de adultos en situación de dependencia. Resultados Se incluyeron un total de 42 artículos y surgieron cinco temas; que incluyen, las tendencias sociodemográficas, la trayectoria y dinámicas a lo largo del tiempo, las transiciones que implica el nuevo rol, la participación en la toma de decisiones y los dominios e impactos en quien ejerce el cuidado. Discusión Se evidenció que ejercer el rol de cuidador familiar novel de personas en situación de dependencia, implica adquirir una serie de competencias, conocimientos, y habilidades, además; de requerir un adecuado soporte social, aspectos que deben ser explorados, reconocidos y abordados por Enfermería. Conclusiones Este estudio proporciona información para comprender las experiencias e implicaciones que tiene convertirse en cuidador novel, de forma que los profesionales de la salud adapten las intervenciones destinadas a apoyar a los cuidadores y mejorar su bienestar.

Abstract Introduction An increase in the number of adults with dependencies, disabilities or care needs has led to the emergence of family caregivers, who regularly assume this responsibility without any previous training or knowledge, which may result in compromising their performance in this new role and their outcomes in care recipients. Materials and Methods A scoping review was conducted following Arksey and O'Malley's scoping framework, which included the review of studies in English and Spanish that are available in online databases to extract the information related to the adoption of the role of novice family caregiver of dependent adults. Results A total of 42 articles was selected from which five major themes were identified, including sociodemographic trends, course and dynamics over time, transitions involved in this new role, participation in decision making, and domains and impacts on caregivers. Discussion Performing the role of a novice family caregiver of dependent adults involves acquiring a series of competencies, knowledge and skills, as well as requiring adequate social support, all of which are aspects that should be explored, recognized and addresses by nursing professionals. Conclusions This study provides information to understand the experiences and implications of becoming a novice caregiver, thus enabling healthcare professionals to adapt interventions aimed to support caregivers and improve their well-being.

Resumo Introdução O aumento do número de adultos, em situação de dependência, incapacidade e com necessidades de cuidados, tem gerado o surgimento de cuidadores familiares, que assumem essa responsabilidade, sem formação ou conhecimento prévio, situação que pode comprometer o desempenho deste novo papel e seus resultados no recebedor de cuidados. Materiais e Métodos Foi realizada uma Scoping Review com a metodologia de Arksey e O'Malley, que incluiu uma revisão dos estudos disponíveis em bases de dados on-line, nos idiomas inglês e espanhol, de onde foram extraídas informações relacionadas à aceitação do papel como novo cuidador familiar de adultos em situação de dependência. Resultados Foram incluídos um total de 42 artigos e surgiram cinco temas; que incluem as tendências sociodemográficas, a trajetória e dinâmica ao longo do tempo, as transições implicadas pelo novo papel, a participação na tomada de decisões e os domínios e impactos em quem exerce cuidado. Discussão Evidenciou-se que o exercício da função de novo cuidador familiar de pessoas em situação de dependência implica em adquirir uma série de competências, conhecimentos e habilidades, além disso; de exigir suporte social adequado, aspectos que devem ser explorados, reconhecidos e abordados pela Enfermagem. Conclusões Este estudo fornece informações para compreender as experiências e implicações de se tornar um cuidador iniciante, de forma que os profissionais de saúde adaptem as intervenções destinadas a apoiar aos cuidadores e melhorar seu bem-estar.

Habilidad de cuidado del cuidador principal del adulto mayor con diálisis peritoneal / Caregiver skills of the main caregiver of the older adult with peritoneal dialysis

Introducción: la enfermedad renal crónica tiene consecuencias graves para los adultos mayores. La diálisis peritoneal continua ambulatoria es una alternativa de tratamiento, pero afecta la calidad de vida del paciente, la familia y el cuidador primario, por lo que se requiere un cuidador con habilidades que ofrezca apoyo en algunas actividades elementales y, además, apoye emocional y espiritualmente al paciente. Objetivo: identificar el nivel de la habilidad del cuidador primario del adulto mayor con diálisis peritoneal. Metodología: estudio descriptivo en 80 cuidadores familiares de adultos mayores con diálisis peritoneal continua ambulatoria. Se utilizó el instrumento Habilidad de cuidado del cuidador familiar, que consta de 55 reactivos y se divide en tres dimensiones: relación, 27 reactivos; comprensión, 18 reactivos; y modificación de la vida, 10 reactivos. El instrumento incluye variables sociodemográficas, de parentesco y tiempo dedicado al cuidado. Se elaboró una base de datos y éstos se analizaron mediante estadística descriptiva. Resultados: la habilidad de cuidado fue alta en 65%; la dimensión de relación resultó alta en 38.8% y media en 61.3%, con una comprensión alta en 86.2% y modificación de la vida alta en 68.8%. Los cuidadoras fueron mujeres en 85%; 46.3% cuidó > 37 meses; 50% cuidó > 24 h, y padres y esposa(o) apoyaron en 91.3%. Conclusión: estos hallazgos muestran que las habilidades de los cuidadores primarios fueron en general buenas, con la notoria participación del personal de enfermería en la capacitación y el apoyo recibido.

Introduction: Chronic kidney disease has severe consequences for older adults, and continuous ambulatory peritoneal dialysis is an alternative treatment, but it affects the quality of life of patient, family, and primary caregiver. It requires a caregiver with caregiving skills to provide support in some elemental activities, as well as emotional and spiritual support to the patient. Objective: To identify the level of caregiving skills of the primary caregiver of the older adult on peritoneal dialysis. Methodology: Descriptive study in 80 family caregivers of older adults with continuous ambulatory peritoneal dialysis. It was used the Caregiving skill of the family caregiver instrument, which consists of 55 items, divided into three dimensions: relationship, 27 items; understanding, 18 items; and life modification, 10 items. The instrument includes sociodemographic, relationship and time spent variables. A database was created and it was used descriptive statistics analysis. Results: Caregiving skills were high in 65%; relationship dimension high in 38.8%, and medium in 61.3%; understanding high in 86.2%; life modification high in 68.8%. 85% were female caregivers; 46.3% spent > 37 months providing care, 50% provided care > 24 hours; parents and wife/husband supported in 91.3%. Conclusion: Our findings show that caregiving skills of pri- mary caregivers were generally good with the significant involvement of the nursing staff in the training and support received.

Nursing Home Care Intervention Post Stroke (SHARE) 1 year effect on the burden of family caregivers for older adults in Brazil: A randomized controlled trial.

The purpose of this study is to evaluate the effect of home-care nursing intervention on the burden of family caregivers for older adults surviving a stroke. A randomised clinical trial blinded for outcome evaluation. Forty-eight family caregivers of older adults surviving a stroke took part in the study. The intervention group (IG) received three home visits by nurses in 1 month after hospital discharge for guidance on the disease and care activities for the elderly people. The control group (CG) relied on the service network that had access. The Caregiver Burden Scale was applied to assess the burden outcome 1 week, 60 days and 1 year after hospital discharge. The caregivers of the intervention and CGs had no difference regarding baseline data. There was an interaction effect between the CG and the IG in the isolation domain (p = 0.037) and in the emotional involvement domain (p = 0.003) over time. These findings provide support for strengthening a care line for the elderly people after a stroke, with adequate discharge planning, indicating the importance of integrating care network services such as primary care, home care and hospital care with a view to achieving an effective care transition. It is also necessary to construct a specific instrument to evaluate other outcomes, such as the knowledge and learning of caregivers in relation to the care activities taught. This study is registered in the Clinical Trials with name Nursing Home Care Intervention Post Stroke (SHARE) and under number NCT02807012.