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- ‘Living Together With Dementia’: preliminary results of a training programme for family caregiversPublication . Sousa, Lia; Sequeira, Carlos; Ferré‐Grau, Carme; Graça, LuísThe aim of this article was to present the preliminary results of a training programme for family caregivers of people with dementia at an early to moderate stage living at home - 'Living Together With Dementia'. In this randomised controlled trial, 27 family caregivers who met the inclusion criteria were recruited from the neurology outpatient consultation clinic of a hospital in the north of Portugal and randomised into two groups (control and experimental) between October 2015 and March 2016. The programme 'Living Together With Dementia' was applied to the participants of the experimental group. The strategies used, overload, difficulties and satisfaction of the caregivers were assessed at three different stages (at the beginning and end of the intervention, as well as at follow-up). For the data analysis, quantitative parametric measures were applied. The Health Ethical Commission of the Hospital Centre approved the study, and its protocol and Helsinki Declaration ethical principles were considered throughout the process. In the final assessment, an improvement in the overload and difficulties was confirmed, as was an increase in the caregivers' satisfaction level and an improvement in coping/problem-solving strategies. In the follow-up stage, the results tended to revert towards those of the initial assessment. The programme 'Living Together With Dementia' appeared to be a major contribution enabling family caregivers of people with dementia, although there is a need to develop an efficacy study using a more substantial sample. The programme contributed to a reduction in the overload and difficulties borne by the family caregivers of people with dementia at an early to moderate stage living at home and to increased caregiver satisfaction.
- Necessidades dos cuidadores familiares de pessoas com demência a residirno domicílio : revisão integrativaPublication . Sousa, Lia; Sequeira, Carlos; Ferré-Grau, Carme; Martins, Daniela; Neves, Pedro; Fortuño, Mar LleixàCONTEXTO: o aumento da incidência e da prevalência da demência constituem um problema signi!cativo de saúde pública, o que implica uma maior atenção às necessidades dos cuidadores familiares, sendo essencial identi!ca-las. OBJETIVO: identi!car as principais necessidades dos cuidadores familiares de pessoas com demência a residir no domicílio. METODOLOGIA: revisão integrativa da literatura, através das bases de dados Pubmed, Repositório Cientí!co de Acesso Aberto de Portugal (RCAAP), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Mediclatina e Medline, utilizando como descritores: cuidadores familiares, avaliação das necessidades de cuidados de saúde, demência e idoso. A pesquisa incluiu publicações entre 2005 e 2015, sendo identi!cados 8 artigos para revisão que obedeciam aos critérios de inclusão. RESULTADOS: a análise dos dados recolhidos permitiu identi!car as necessidades dos cuidadores familiares e elenca-las em três grandes grupos: i) necessidades relacionadas com o cuidador familiar; ii) necessidades relacionadas com o papel de cuidador e iii) necessidades relacionadas com o contexto do cuidar. CONCLUSÕES: foi possível identi!car e reunir as necessidades destes cuidadores numa lista, o que pode servir de base para o planeamento dos cuidados dos pro!ssionais de saúde e para o desenvolvimento de serviços de suporte para os cuidadores familiares.
- Information needs of family caregivers of dependent individualsPublication . Neves, Pedro Nuno; Sequeira, Carlos; Mar, Lleixà-Fortuño; Sousa, Lia; Ferre-Grau, CarmeThe increase in the number of dependent individuals means that more and more families find themselves in the situation of caregivers, with all the consequences that performing this role entails. Based on this reality, we considered it to be completely relevant to systematize knowledge in this area. This study aimed to identify the information needs of the family caregiver-dependent individuals in the available scientific literature, having performed an integrative review of the literature. The main results and conclusions indicate that the information needs of family caregivers can be grouped into three main themes: 1) caregiver knowledge and skills, 2) potential resources for the caregiver and 3) caregiver coping strategies and well-being. The comprehensive nature of the integrative review as the chosen method allowed us to get a good understanding of the information needs of family caregivers of dependent individuals. The relevance of this study to clinical practice is that, although it is still necessary to expand and enhance the scope of research in this area, we consider this information essential for all health professionals seeking to provide effective support to family caregivers, as well as to serve as support for the development of intervention projects and health services
- Envelhecimento e Comunicação: Desafios para os(as) Enfermeiros(as)Publication . Araújo, Odete; Sousa, Lia; Vieira, Teresa; Sequeira, Carlos
- Características de um programa de capacitação para familiares cuidadores de pessoas com demência a residir no domicílioPublication . Sousa, Lia; Sequeira, Carlos; Ferré-Grau, Carmé; Neves, Pedro; Lleixà-Fortuño, MarCONTEXTO: Construir, implementar e avaliar programas de capacitação para familiares cuidadores de pessoas com demência a residir no domicílio deve ser um objetivo para a Enfermagem de Saúde Mental. OBJETIVO: Identificar as características definidoras de um programa de capacitação para familiares cuidadores de pessoas com demência a residir no domicílio. METODOLOGIA: Focus Group. RESULTADOS: Como tipologia para estes programas propõe-se: 6/8 semanas, 6/8 sessões individuais, com duração de 60 minutos cada. Principais temas a abordar: doença e as suas fases, necessidades do cuidador, entre outros. As abordagens metodológicas passam pela discussão dos temas e pelas técnicas de resolução de problemas. A avaliação deve realizar-se antes e após o programa, através de instrumentos que mensurem as características sociodemográficas, a sobrecarga, a satisfação, entre outros. CONCLUSÃO: Este estudo permitiu identificar as principais características que devem integrar os programas de capacitação para familiares cuidadores de pessoas com demência a residir no domicílio, abrindo portas para o desenvolvimento de intervenções nesta área e para futuros projetos de investigação.
- ‘Living together with dementia’ – Conceptual validation of training programme for family caregivers: Innovative practicePublication . Sousa, Lia; Sequeira, Carlos; Ferré-Grau, CarmeThis article presents results from a conceptual validation of the programme ‘Living Together with Dementia’, through an e-Delphi study carried out during April/May, 2015 with 26 Portuguese and Spanish experts. The programme consists of seven individual weekly sessions and two group sessions over a seven-week period. It covers dementia, communication and behaviour; demands and expectations of the caregiver role; basic activities of daily living; coping and problem solving strategies; physical and mental health of the caregiver and community support. The programme methods mainly consist of discussion sessions, practical examples/simulations and skill training.
- Residencias de ancianos en Portugal durante la COVID-19: desafíos para el futuroPublication . Araujo, Odete; Sequeira, Carlos; Ferré-Grau, Carme; Sousa, LiaObjetivo: Este estudio pretende explorar la percepción de los especialistas sobre el desempe˜no de las residencias de ancianos durante la COVID-19. Método: Este es un estudio desarrollado en 2 fases: 1) un grupo focal, con el que se trabajó en mayo 2020, con 5 especialistas y 2) un Delphi modificado, implementado en septiembre 2020 con 22 especialistas, ambos en el área de asistencia en residencias de ancianos del norte y centro de Portugal. Resultados: Los resultados permitieron identificar 3 áreas principales que influenciaron el desempe˜no de las residencias de ancianos desde el inicio del brote de la COVID-19: modelos de organización y recursos; salud física y mental de los residentes y; la familia como apoyo. Conclusiones: Las personas mayores que residen en residencias para ancianos quedan particularmente vulnerables a la COVID-19, pues esta enfermedad puede tener para ellos consecuencias muy graves o incluso conducirle a la muerte. Es importante que las residencias prevengan la fragilidad física y mental de los ancianos, así como la soledad que muy probablemente les asola debido a las circunstancias pandémicas. Los responsables por las residencias de ancianos deben percibir que las personas mayores que viven en ellas tienen. por lo general. problemas de salud, lo que debería determinar la implementación de nuevas estrategias, entre ellas el aumento del número de profesionales debidamente capacitados.
- Construção de um apoio online para o familiar cuidadorPublication . Neves, Pedro; Sequeira, Carlos; Sousa, Lia; Lleixà-Fortuno, MarThe increase in the number of dependent individuals means that more and more families find themselves in the situation of caregivers, with all the consequences that performing this role entails. Based on this reality, we consider it to be completely relevant to systematize knowledge in this area towards the develop of an educational online support tool for caregivers. We conducted a focus group with experts in this field to identify what appropriate content an online caregiver support program should have. Our goal is to build an online tool that works as a complement to the work of professionals and is safe for carers. The main results and conclusions, after we analyze the focus group incomes indicate that the online support tool should contain topics that can be grouped into three main themes: 1) caregiver knowledge and skills, 2) potential resources for the caregiver and 3) caregiver coping strategies and well-being. It was also possible to obtain important complementary information that will be very useful in the construction of the online tool. The relevance of this study to clinical practice is that, although it is still necessary to expand and enhance the scope of research in this area, we consider this information essential for all health professionals seeking to provide effective support to family caregivers, as well as to serve as support for the development of intervention projects and health services.
- Features of family caregivers of people with dementia attended at a neurology consultationPublication . Sousa, Lia; Sequeira, Carlos; Ferré-Grau, Carme; Neves, Pedro; Lleixà-Fortuno, MarProviding care to someone with dementia is a complex task, that requires a set of speci*c skills and knowledge that family caregivers often lack. Training family caregivers of people with dementia is paramount, and the *rst step towards such purpose should be the identi*cation of their features and the evaluation of their needs. The main aim of this study is to identify the major characteristics of family caregivers of people with dementia in early or moderate stage living at home, who attend the dementia consultation at a hospital in the north of Portugal, through a quantitative, descriptive and cross-sectional study. This study is a section from a previous randomized controlled trial, performed to assess the short-term e+cacy of a training programme for family caregivers of people with dementia (the programme “Living together with Dementia”). Regarding the *ndings, we realized that the average age of family caregivers is 52, and these are mostly women, married, with basic education levels and employed. They display intense overload and di+- culties levels, but also high degrees of satisfaction. They mostly resort to mixed coping/ problem resolution strategies and their main needs are expressed as follows: managing emotions and feelings associated with the caring process; developing strategies to preserve physical and mental health; developing knowledge about dementia and its stages and *nally, seeking support from formal institutions
- Training programmes for family caregivers of people with dementia living at home: integrative reviewPublication . Sousa, Lia; Sequeira, Carlos; Ferré-Grau, Carme; Neves, Pedro; Lleixà-Fortuño, MarTo establish primary features of training programmes designed to assist family caregivers of people with dementia living at home and to propose a model programme based on literature findings.