Skyddandets förnuft : En studie om anhöriga till hjälpbehövande äldre som invandrat sent i livet

This dissertation aims to examine and deepen the knowledge of family member caregiving where the care recipient is an elderly person who immigrated late in life. It also aims to contribute to the knowledge of the complexities underlying informal care giving and add to our understandings of what it means to be an immigrant in Sweden. The caregiver is in focus. The research conducted is explorative and partly inductive. The main material used is a qualitative interview study carried out with family members from different countries who are providing informal care to elderly immigrant relatives. The analysis gives three patterns of caregiving. One shows help from informal caregivers only who are not compensated economically. Another shows help from family members who are compensated. The third shows help from family members and staff from the public care system. Three ideal-typical informal caregiver roles show different positions vis-à-vis the new: “guardian”, “filter” and “reinterpreter of traditional care ideals”. Swedish born and immigrated informal caregivers are also compared through analysis of data gathered in telephone interviews with a representative selection of inhabitants in the County of Stockholm. A philosophy of action together with theory on integration and multiculturalism serves as theoretical frameworks to understand discrepancies and ambiguities in the data. Young immigrants experience different integration processes than do the older ones. They strive to protect older family members from changes linked to the migration experience. Talk about dependence on culture underlines family feelings and legitimates the processes of protection. Preconceptions about great differences between Swedish born and immigrant families are not supported by quantitative data. A conclusion is that protection can be understood in relation both to the traditional and the new, the latter in the forms of meetings with Swedish society where unequal relations prevail. It is a kind of counter-strategy where the range of actions is diminished, and thus it has its own logic. Protection can be loosened up when the circumstances change and the range of actions grow.

Qualidade de vida dos cuidadores informais de doentes de Huntington

Introdução: A Doença de Huntington (DH) é uma patologia neuro degenerativa hereditária de transmissão autossómica dominante que afeta o movimento e conduz a um défice progressivo das capacidades cognitivas e comportamentais. Cuidar um doente de Huntington é um processo complexo e exigente com um grande impacto na saúde, bem-estar e qualidade de vida do cuidador informal. Objetivo: Avaliar o impacto da DH na Qualidade de Vida do Cuidador Informal, e verificar em que medida as variáveis sociodemográficas, contextuais e clínicas se relacionam com essa Qualidade de Vida. Metodologia: Trata-se de um estudo quantitativo, não experimental, transversal numa lógica de análise descritivo-correlacional com 50 Cuidadores Informais de nacionalidade espanhola, membros da “Asociación de Corea de Huntington Española” - ACHE. Utilizamos a versão espanhola do questionário: Huntington’s Disease Quality of Life Battery for Carers (HDQoLC) como instrumento de colheita de dados especifico para a avaliação da QDV dos Cuidadores de Doentes de Huntington . Resultados: Os participantes são na sua maioria do sexo feminino (68%), com uma media de idades de 50,04 anos, casados (72%) com elevado grau de literacia (52%) e no ativo (72%). São essencialmente cônjuges da pessoa dependente (52%) ou filhos(as) (28%). Os resultados sugerem que os CI possuem uma QDV moderada (53%) na qual os “aspetos práticos do cuidar”, ou seja, o papel de cuidador, tem grande impacto na QDV (43%) a “satisfação com a vida e os “sentimentos sobre a vida com DH” parecem atenuar esta sobrecarga. Os dados obtidos revelam que as variáveis que influenciaram significativamente a Qualidade de Vida total são: as habilitações literárias e o número de horas de cuidados diários. No entanto podemos afirmar que a idade, tempo como CI e os motivos que levaram a assumir o papel de cuidador, tem uma relação expressiva com a dimensão “aspetos práticos do cuidar” da QDV. Conclusões: Os resultados reforçam a multidimensionalidade e variabilidade da qualidade de vida dos cuidadores informais de Doentes de Huntington e evidenciam a necessidade dos profissionais de saúde apostarem em programas de intervenção na comunidade, de forma a implementar estratégias de apoio que minimizem as dificuldades sentidas, aumentem a capacidade para a prestação de cuidados e que promovam a qualidade de vida dos que cuidam. Palavras-chave:; Doença de Huntington; Cuidadores Informais; Qualidade de Vida.

Representações sobre a doença mental por parte dos cuidadores formais, em instituições de apoio e acolhimento a pessoas idosas: a realidade transfronteiriça entre Portugal e Espanha

Segundo (Lage; 2005) o cuidador informal sempre existiu ao longo da história da humanidade, ao séc. XX a família tinha um papel muito importante, após o sec. XX a família e o cuidar informal foi substituído pela medicina e pelo cuidador formal. O aumento do envelhecimento populacional, o aumento da esperança média de vida e a desertificação trouxeram um conjunto de preocupações e responsabilidades, às famílias e às entidades sociais e da saúde, devido aos cuidados que são necessários prestar às pessoas idosas dependentes e com doença mental, devido à crise dos sistemas sociais, de saúde e financeiro das entidades governamentais, a maioria dos casos de doença mental e idosos foram como que obrigados a recorrer aos cuidos informais para fazer face as despesas. Com o presente estudo, de caráter qualitativo, procuramos conhecer os estigmas que existem face a doença mental em dois países transfronteiriços, Portugal e Espanha. A amostra da população selecionada é constituída por quarenta cuidadores formais em instituição de acolhimento e apoio a pessoas idosas, em que quarto instituições distintas, duas em Portugal e duas em Espanha. Os cuidadores inquiridos referiram que há pouca procura por parte dos doentes mentais a estas instituições, uma vez que requerem mais cuidados presenciais e equipas direcionadas aos problemas específicos, embora todos tenham uma formação abrangente, mas é mais difícil cuidar deste tipo de clientes.

Moderating Variables Impacting Adherence to the Reducing Disability in Alzheimer's Disease (RDAD) Intervention

Thesis (Ph.D.)--University of Washington, 2016-06

Perceived risk of death in older primary care patients

There is a large gap between life expectancy and healthy life years at age 65. To reduce this gap, it is necessary that people with medical concerns perceived at higher risk of adverse outcomes are readily identified and treated. The same goes for the need to implement prevention plans. The main objectives of this study are to, in a first step, (a) estimate the percentage of medical concerns, (b) identify factors associated with this concern; in a second step, (c) estimate the perceived risk of death, and (d) evaluate the ability of medical concerns to predict this risk. Results show that the existence and severity of medical concerns are crucial in the prediction of perceived risk of death. Early identification of severity of medical concerns and the availability and adequacy of informal caregiving should allow healthcare professionals to promptly initiate an appropriate assessment and treatment of older patients.

Opinião dos Estudantes do Curso de Licenciatura em Enfermagem, sobre a sobrecarga do cuidador de Doentes com demência tipo de Alzheimer

Projeto de Graduação apresentado à Universidade Fernando Pessoa como parte dos requisitos para obtenção do grau de licenciada em Enfermagem

Conhecimento dos Cuidadores Informais no cuidar do seu familiar idoso dependente

Projeto de Graduação apresentado à Universidade Fernando Pessoa como parte dos requisitos para obtenção do grau de licenciada em Enfermagem

Trabalho de projeto - Gestão da formação em educação para a saúde em cuidadores informais de utentes em cuidados continuados integrados: Guia de boas práticas na prevenção de úlceras de pressão

O cuidador informal é aquela pessoa sobre quem recai a responsabilidade pela prestação da maioria dos cuidados ligados ao doente dependente, sem que para isso tenha sido preparado. Cabe-nos a nós técnicos de saúde orientar, no sentido de apoio e ajuda a estes cuidadores informais que têm a seu cargo um doente dependente, de modo a desenvolver as competências que lhes permita superar as mudanças e consequentemente favorecer um processo de adaptação mais rápido e consciente, melhorando a sua Qualidade de Vida e a do doente. Através da implementação de intervenções específicas, Educação para a Saúde. Neste sentido, o presente trabalho passou pela criação de um Guia de Boas Práticas e pela elaboração de um Plano de Formação com o objectivo de estabelecer linhas de orientação para a educação para a saúde e normalizar procedimentos que garantam as boas práticas na prevenção de Úlceras de Pressão em particular

Development of the Andalusian Registry of Patients Receiving Community Case Management, for the follow-up of people with complex chronic diseases.

Background: Complex chronic diseases are a challenge for the current configuration of Health services. Case management is a service frequently provided for people with chronic conditions and despite its effectiveness in many outcomes, such as mortality or readmissions, uncertainty remains about the most effective form of team organization, structures, and the nature of the interventions. Many processes and outcomes of case management for people with complex chronic conditions cannot be addressed with the information provided by electronic clinical records. Registries are frequently used to deal with this weakness. The aim of this study was to generate a registry-based information system of patients receiving case management to identify their clinical characteristics, their context of care, events identified during their follow-up, interventions developed by case managers, and services used. Methods and design: The study was divided into three phases, covering the detection of information needs, the design and its implementation in the healthcare system, using literature review and expert consensus methods to select variables that would be included in the registry. Objective: To describe the essential characteristics of the provision of ca re lo people who receive case management (structure, process and outcomes), with special emphasis on those with complex chronic diseases. Study population: Patients from any District of Primary Care, who initiate the utilization of case management services, to avoid information bias that may occur when including subjects who have already been received the service, and whose outcomes and characteristics could not be properly collected. Results: A total of 102 variables representing structure, processes and outcomes of case management were selected for their inclusion in the registry after the consensus phase. Total sample was composed of 427 patients, of which 211 (49.4%) were women and 216 (50.6%) were men. The average functional level (Barthel lndex) was 36.18 (SD 29.02), cognitive function (Pfeiffer) showed an average of 4.37 {SD 6.57), Chat1son Comorbidity lndex, obtained a mean of 3.03 (SD 2.7) and Social Support (Duke lndex) was 34.2 % (SD 17.57). More than half of patients include in the Registry, correspond lo immobilized or transitional care for patients discharged from hospital (66.5 %). The patient's educational level was low or very low (50.4%). Caregivers overstrain (Caregiver stress index), obtained an average value of 6.09% (SD 3.53). Only 1.2 % of patients had declared their advanced directives, 58.6 had not defined the tutelage and the vast majority lived at home 98.8 %. Regarding the major events recorded at RANGE Registry, 25.8 % of the selected patients died in the first three months, 8.2 % suffered a hospital admission at least once time, 2.3%, two times, and 1.2% three times, 7.5% suffered a fall, 8.7% had pressure ulcer, 4.7% had problems with medication, and 3.3 % were institutionalized. Stroke is the more prevalent health problem recorded (25.1%), followed by hypertension (11.1%) and COPD (11.1%). Patients registered by NCMs had as main processes diabetes (16.8%) and dementia (11.3 %). The most frequent nursing diagnoses referred to the self-care deficit in various activities of daily living. Regarding to nursing interventions, described by the Nursing Intervention Classification (NIC), dementia management is the most used intervention, followed by mutual goal setting, caregiver and emotional support. Conclusions: The patient profile who receive case management services is a chronic complex patient with severe dependence, cognitive impairment, normal social support, low educational level, health problems such as stroke, hypertension or COPD, diabetes or dementia, and has an informal caregiver. At the first follow up, mortality was 19.2%, and a discrete rate of readmissions and falls.

Caregivers’ burden experienced by relatives living with a person suffering from schizophrenia

Abstract: Schizophrenia is a complex chronic disease that turns the affected person into a dependent and disorganized patient. This pathology is responsible for a major burden on the family members who are in charge of taking care of that person. Analyze to what extant can socio-demographic, clinical and environmental variables interfere with the burden felt by family members who live with someone suffering from schizophrenia; to analyze the relationship between a depressive mood state and the burden on the family members who live with a person suffering from schizophrenia were our objectives. As a methodology, quantitative and non-experimental, cross-sectional, descriptive and correlational study. The data collection was done through socio-demographic questionnaires; Vaz Serra and Pio Abreu’s Portuguese version of Beck Depression Inventory (1973); Zarit Burden Interview adapted by Sequeira (2007). 95 informal caregivers taking care of schizophrenic patients were assessed. Participants are mainly female (66%), aged 40 or over (79%) and 36 % are the patients’ mothers. Gender, age and existing family ties variables interfered significantly with the impact caused on the caregiver’s burden. There was a statistically significant correlation between the depressive symptomatology and the burden experienced by the family caregivers. Family/ informal caregiver experience several difficulties when they have to go through a daily process of taking care of a family member suffering from schizophrenia. This situation may cause exhaustion, conflicts, emotional suffering and even depressive symptomatology. This burden of care grows stronger as the patients are older, when they are male and when there are no families ties binding patient and caregiver. These variables must be taken into account in these caregivers’ service plans.

Experiencia y construcción de significados en relación con su rol en cuidadores de personas con esquizofrenia

La perspectiva de los conocimientos situados es una postura epistemológica que surge de la corriente feminista y permite comprender las experiencias y la construcción de significados de un sujeto desde la posición que ocupa dentro de un contexto específico. Esta perspectiva no pretende generar un conocimiento generalizable, más bien busca comprender una realidad particular que viven las personas frente a problemáticas específicas. Esta perspectiva se implementó en este trabajo de grado con el objetivo de entender el significado que tiene para un cuidador informal cuidar a una persona con un diagnóstico de esquizofrenia. Este trabajo utilizó una metodología fenomenológica desde la cual se realizaron cinco entrevistas en profundidad al mismo número de cuidadores de personas con esquizofrenia donde se busca indagar acerca de la experiencia del cuidador en relación con su rol, las circunstancias por las se llega a ser cuidador, las condiciones bajo las cuales se da el cuidado, la percepción de la salud de los cuidadores y las expectativas de estas personas. La información se registró por medio de audio y de manera escrita. El análisis de la información se realizó de forma manual teniendo en cuenta a los autores Bautista (2011); Giraldo y González (2015) y Fernández (2006). Inicialmente se generaron categorías orientadoras que se fundamentaron a partir de la teoría y posteriormente se realizó la construcción de categorías emergentes. Acto seguido se contrastaron ambos tipos de categorías (teóricas y empíricas) para reflexionar acerca de la experiencia y construcción de significados de los cuidadores de personas con esquizofrenia. Se identificó que la experiencia de las cuidadoras está enmarcada en relación con el género femenino el cual ha asumido tradicionalmente esta función y también es característica que termina justificando el rol que asumen.

Canada's Compassionate Care Benefit:Is it an adequate public health response to addressing the issue of caregiver burden in end-of-life care?

Background: An increasingly significant public health issue in Canada, and elsewhere throughout the developed world, pertains to the provision of adequate palliative/end-of-life (P/EOL) care. Informal caregivers who take on the responsibility of providing P/EOL care often experience negative physical, mental, emotional, social and economic consequences. In this article, we specifically examine how Canada's Compassionate Care Benefit (CCB) - a contributory benefits social program aimed at informal P/EOL caregivers - operates as a public health response in sustaining informal caregivers providing P/EOL care, and whether or not it adequately addresses known aspects of caregiver burden that are addressed within the population health promotion (PHP) model. Methods. As part of a national evaluation of Canada's Compassionate Care Benefit, 57 telephone interviews were conducted with Canadian informal P/EOL caregivers in 5 different provinces, pertaining to the strengths and weaknesses of the CCB and the general caregiving experience. Interview data was coded with Nvivo software and emerging themes were identified by the research team, with such findings published elsewhere. The purpose of the present analysis was identified after comparing the findings to the literature specific to caregiver burden and public health, after which data was analyzed using the PHP model as a guiding framework. Results: Informal caregivers spoke to several of the determinants of health outlined in the PHP model that are implicated in their burden experience: gender, income and social status, working conditions, health and social services, social support network, and personal health practises and coping strategies. They recognized the need for improving the CCB to better address these determinants. Conclusions: This study, from the perspective of family caregivers, demonstrates that the CCB is not living up to its full potential in sustaining informal P/EOL caregivers. Effort is required to transform the CCB so that it may fulfill the potential it holds for serving as one public health response to caregiver burden that forms part of a healthy public policy that addresses the determinants of this burden. © 2011 Williams et al; licensee BioMed Central Ltd.

Bereavement After Informal Caregiving: Assessing Mental Health Burden Using Linked Population Data

Methods. We linked prescription records for antidepressant and anxiolytic drugs to characteristics and life-event data of members of the Northern Ireland Longitudinal Study (n = 317 264). Using a case-control design, we fitted logistic regression models, stratified by age, to model relative likelihood of mental health problems, using the proxy measures of mental health–related prescription.

Results. Both caregivers and bereaved individuals were estimated to be at between 20% and 50% greater risk for mental health problems than noncaregivers in similar circumstances (for bereaved working-age caregivers, odds ratio = 1.41; 95% confidence interval = 1.27, 1.56). For older people, there was no evidence of additional risk to bereaved caregivers, though there was for working-age people. Older people appeared to recover more quickly from caregiver bereavement.

Cancer and serious mental illness – patient, caregiver and professional perspectives: study protocol

Aim: To explore the experience of serious mental illness and cancer from the perspective of patients, significant others and healthcare professionals involved in their care. Background: Serious mental illness is associated with poorer cancer outcomes. Those suffering from this comorbidity receive fewer specialist interventions and die earlier than the general population. Prior qualitative research in this area has comprised of a single study focussing on healthcare professionals and there is little evidence regarding the experiences of patients and caregivers.Design: A qualitative exploration using approximately 36 semi-structured interviews.Methods: Semi-structured digitally recorded interviews conducted with: adults living with serious mental illness and diagnosed with cancer; those providing them with informal support and care; and healthcare professionals. Questions will focus on the experience of having cancer and serious mental illness or caring for someone with this comorbidity, experiences of healthcare and priorities for patients and carers. Framework analysis will be used. Research Ethics Committee and Trust Research & Development approval was obtained. A steering group comprising six people with experience of either cancer or mental illness provided feedback and ratified the patient information sheets and interview schedules. Discussion: There is a paucity of research addressing stakeholder perspectives on the experience of cancer and of cancer services for people with serious mental illness. Dissemination of findings will inform practice relating to the care of an often neglected population, informing better support for their significant others and the professionals involved in their care.

Processo de desenvolvimento do instrumento de avaliação do nível de dificuldade do cuidador informal ao cuidar do idoso

Pós-graduação em Saúde Coletiva - FMB