O cuidador familiar de pessoa com doença de Alzheimer: história oral de vida

The aim of the present study was to understand the feelings and the difficulties faced by the family caregiver in the care of the person affected by Alzheimer`s Disease (AD). It is a descriptive, exploratory study with a qualitative approach, using the oral life history proposed by Bom Meihy as the method. Data collection was conducted in the Basic Health Unit of Candelaria, located in Natal -RN, with five collaborators that carry out the role of family caregivers for people affected by Alzheimer`s disease (AD) and are members of the Group "Caring for those who Care". Caregi vers who resided with the affected family member for at least one year were selected for the study, and as a collection tool, it was opted to use semi-structured interviews via a script of open questions, recorded by permission of the collaborators, then t ranscribed and subsequently returned to respondents for checking the contents described. To analyze the results, the collaborators narrative technique was used in conjuction with the specific literature on the subject.The discussions were organized around five themes inherent to the guiding questions, and defined as follows: the incorporation of the role of the family caregiver; life before and after assuming the role of caregiver, the caregiver`s feelings and attitudes after assuming the care, difficulti es in caring, participation of the group as a foundation for caregivers. The stories showed many difficulties in the daily routine of the caregivers, and also that their participation in the group "Caring for those who Care" helps them in maintaining the q uality of their lives. The results open possibilities for the construction of new forms of approach and care for the people who fulfill the role of family caregiver contributing to strengthening of subsidies that help them better face the daily difficulti es.This study helped shed light on the fact that being a family caregiver of a person affected by AD is a suffered, exhausting and stressful condition involving much self-denial in one´s life. The situation experienced by these collaborators is considered a public health issue, and thus highlights the urgency for governmental political -social actions, besides the programs of care and health promotion for this target group.

Conhecimento e intervenção do cuidador na doença de Alzheimer: uma revisão da literatura

Objetivo: Analisar de forma sistemática o conhecimento da doença de Alzheimer (DA) e as estratégias adotadas pelo cuidador para lidar com os sintomas apresentados pelo idoso com DA. Métodos: Levantamento de estudos publicados nas bases de dados PubMed, MedLine, Lilacs e SciELO, utilizando os seguintes descritores e termos livres para estratégia de busca, de acordo com suas definições no DeCS e no MeSH: “cuidadores” or “educação em saúde” or “treinamento” or “cuidadores de idosos” and “doença de Alzheimer”; “elderly caregiving” or “training” or “health education” or “caregivers” and “Alzheimer disease”; “cuidadores de personas mayores” or “formación” or “educación en salud” or “cuidadores” and “enfermedad de Alzheimer”. Resultados: Foram eleitos 12 artigos para análise e leitura na íntegra. Os artigos foram classificados em três categorias: 1) Conhecimento acerca do declínio cognitivo e funcional da doença de Alzheimer; 2) Conhecimento acerca dos sintomas psicológicos e comportamentais da demência (SPCD); 3) Conhecimento acerca do comprometimento da linguagem. Na maioria dos estudos, verificou-se que a orientação a respeito do que é a enfermidade e a sua evolução pode interferir na maneira como o cuidador planeja e executa as ações de cuidado. Conclusão: É extremamente necessário criar oportunidades para que os cuidadores familiares e profissionais conheçam a doença para compreender o paciente e, consequentemente, as possibilidades de atuação (seguras e eficazes) nesse paciente. Isso é possível mediante implementação de programas psicoeducativos capazes de fornecer informações e orientações práticas para melhorar a assistência oferecida por cuidadores aos pacientes com DA.

Vivências compartilhadas de filhos separados pela hanseníase no RN a luz da história oral de vida

Several epidemics marked the lives of individuals and communities in all historical periods, and a prime example is leprosy, infectious disease marked by stigma, prejudice and social exclusion. In the past, the compulsory isolation of patients with leprosy caused serious social and psychological problems, resulting in the separation and the partial or total disruption of the family relationship. Children deprived of this living, removed often inhumanely, were kept and bred in preventoriums / educational establishments. This study aimed to: rescue the oral history of life of the children of leprosy patients that were built in preventorium Osvaldo Cruz, Natal, Rio Grande do Norte; develop a contextual analysis about these children; know the life trajectory of children of leprosy patients institutionalized in preventoriums / educational establishments; produce a documentary on the history of life of children of parents separated by leprosy; forming MORHAN of Rio Grande do Norte state; and implement the I Meeting of MORHAN of Rio Grande do Norte state. This is an exploratory and descriptive study, with a qualitative approach, approved by the ERC No. 024/024/2012 Liga Norteriograndense Contra o Câncer. We used the contributions of the method and technique of oral history of life as methodological reference. We interviewed 10 individuals egress from preventorium Osvaldo Cruz in Natal/RN, sons of former patients proven to be residents in the city, of both sexes, older than 18, with cognitive, intellectual and emotional conditions preserved. The analysis of the histories obtained from collaborators was performed in the light of Thematic Content Analysis. The results and discussions are presented through two articles which meet the proposed objectives. The first, called Contextual Analysis on the children of leprosy patients in preventoriums aimed to record the phenomenon of children of leprosy patients in preventorium through four contextual levels, which identified the need to broaden the debate on public policy in the field of leprosy as a way to enable more effective measures to propagate in the search for harm reduction and direct consequences resulting from stigma and marginalization around patients and their healthy children, egress from preventoriums. The second, Leprosy and the denial of history: the story of separated children , aimed to know the life trajectory of children of leprosy patients who were institutionalized in preventoriums / educational establishments. In this article, we discuss the research question through the establishment of three main themes: 1. Losses and damages: disintegration and reintegration into the family and denied childhood; 2. Unforgettable: remarkable things you do not forget; and 3. Expectancy in living new situations: in search of other paths and destinations. These thematic axis highlighted the negative implications for the lives of the subjects, arising from the separation of their parents, leprosy patients at the time of compulsory isolation; however, has also been shown that this separation was not decisive in their life histories, once they have succeeded in providing a new sense of these experiences and lead their lives with dignity and fortitude. It was concluded that these children demonstrated resilience as form of defense and fighting stigma and prejudice, being able to reinvent themselves and build new paths and destinations

Perfil de cuidadores de idosos com doença de Alzheimer associado à resiliência

Estudo exploratório-descritivo que objetivou descrever variáveis sociodemográficas e de saúde dos cuidadores de idosos com Alzheimer, associando os cuidados realizados à resiliência. Participaram do estudo 101 cuidadores, maiores de 18 anos, que acompanhavam os idosos em unidade básica e em hospital público, no ano 2009. Foram aplicados questionários para perfil, Inventário de Depressão de Beck e Escala de Resiliência. Realizada análise estatística dos dados. A maioria dos cuidadores eram mulheres, sem depressão, recebia ajuda de outras pessoas para cuidar e possuía alto grau de resiliência. Houve associação significativa da resiliência com as variáveis: grau de parentesco, tratamento médico, uso de medicamentos, cansaço, esgotamento, desânimo e saúde mental do cuidador. Saúde física foi associada, significativamente, à experiência no cuidado, sendo que 82 idosos tinham prejuízos cognitivos graves. O idoso no contexto familiar pode ser beneficiado quando o cuidador é mais resiliente.

Qualidade de vida nos cuidadores informais de doentes com doença de Alzheimer

Dissertação de mestrado em Psicologia Aplicada

Gritos de silêncio: na voz dos familiares cuidadores de portadores da doença de Alzheimer

This work is an investigation related to issues of those who take home care of people who suffer from Alzheimer disease (AD). Thus, it is justified by the need to acknowledge how these relatives perform this task and in which ways they do this. The study has is analytical and qualitative methodology with the use of a thematic oral history approach. The subjects of the research were nine relatives of those who suffer from AD that participate in the home care group in the Candelária neighborhood in the city of Natal in Rio Grande do Norte-Brazil. The data was collected using a semi-structured questionnaire and interview that was booked in advance and had full support from the care takers. After information collection, three thematic axles were defined. After this procedure, three analisys subcategories were also defined. The first thematic axle emphasizes the so called movement of rite of passage, when the relative becomes a care taker of a person with AD. The second category deals with the care takers strategies, either related to their own behalf or on their relative. It is possible to infer that amongst other forms of help, the care taker needs to rely on a support network, such as health services, groups composed by multiprofessionals that enable better articulation between family and collaborators. The dimension related to faith and spirituality was also observed and pointed out as an important aspect in the emotional support process for these relatives. In the third axle the perspectives of struggle, conquests of the right to health and life quality of those who suffer from AD as well as their relatives was observed. These also deal with dreams and hope

História oral de vida de pacientes transplantados renais: novos caminhos a trilhar

The therapeutic possibilities for chronic renal failure closely are related to the biological and social condition, and in this perspective the renal transplant is considered the best option, for providing quality of life better. This study it objectified to apprehend, by means of the rescue of the verbal history of life of the kidney transplant patients, the experiences lived since the diagnosis of the renal to the current with the current therapeutic modality. One is about a study of qualitative boarding, exploratory and descriptive, having the verbal history of life as a technique and method. The colony was formed with the ten first kidney transplant patients of the Rio Grande of the North, taken care of in the clinic of the Nephrology in the University Hospital Onofre Lopes-UFRN, located in the city of Christmas-RN. The net was composed for collaborators of both the sex, in the age band between 21 and 56 years of age, submitted it more than has one year to the renal transplant and that, in some cases, together of its familiar ones, they had voluntarily accepted to participate of the study. The first collaborator interviewed for this was excluded not to desire to participate the study more than. After approval for the Committee of Ethics in Search of the UFRN, we carry through the collection of data, by means of a halfstructuralized interview, recorded individually, in environment chosen for the collaborators. We carry through the transcription of the interviews and later we return to the interviewed ones so that the same ones made the conference, what it made possible in them to carry through the transcriation, after consecutive readings. We analyze the stories by means of the analysis of content of Bardin. Guiding the analysis of the stories of the collaborators, we find three axles thematic: Impact in the social relations, Impact in the social condition and Behavior front the illness and treatment. We conclude in this study that the loss of the renal function reed-echo drastically in the life of the collaborators, but that the acceptance of the pathological condition emerged, mainly for the support of the family and in the belief in God. The renal transplant was seen as the chance for a new life, however, so that they reach an improvement in the quality of life, other questions must be optimized, as the guarantee of constitutional laws, the rescue of the citizenship and offer of bigger support of the professionals of the health, family and society for the confrontation of the problems generated for the chronic renal illness and its treatments

O cuidador familiar do idoso com alzheimer: percepções e sentimentos

The Brazilian Constitution maintains that care for elderly people is a responsibility shared by the state, the family and the society. The politics for the elderly corroborate this understanding and treats home as a privileged place for elderly care taking. This determines the participation of the familiar as a caregiver, but highlights the lack of strategic assistance for the needs of the relative caregiver who feels helplessly and unattended in their responsibility for elderly homecare. In recent years , despite the recently pursuit for health and life quality, there is an increasing incidence of elderly patients with dementia diseases that lead to disability, the most common among then is the Alzheimer��s disease. This disease affects seriously and irreversibly cognition, memory and independence of the elderly, making it dependent on others to perform basic activities of daily life, for all his life. The present study aims to evaluate the perceptions and feelings of family caregivers of elders with Alzheimer on the role of caregiver. This is a qualitative study conducted with family caregivers of seniors with Alzheimer��s, caregivers linked to the group of the Specialized Care Center of the Elderly´s Health, located in Natal / RN. Through semi-structured interview research sought to investigate the perceptions of family caregivers on the role of caregiver, the feelings and the changes in the caregiver´s life since they assumed this role. The data were organized into categories and units of semantic analysis and analyzed using thematic content analysis by Bardin. The reports originated three categories: the perception of the role of caregiver, feelings related to the caregving and consequences of the caregiver role. Perceptions of caregivers of elderly from the requirement of dedication to the care generates losses in personal and professional life for the familiar who assumes this responsibility. The lack of family and social support, aggravates the burden of care for the dependent elderly. Public health politics for the elderly recognize the importance and needs of family caregivers, but not enough to provide support and meet the needs and assist them in supporting their limitations. The research results show the urgent need to take measures to assist the caregivers of seniors with Alzheimer, recognizing them as an action of promotion quality of life and health of the elderly and protection the health of the caregiver

A Percepção dos Cuidadores Informais Relativamente ao Centro de Dia Para Pessoas com Doença de Alzheimer

A sobrecarga familiar provocada pela doença de Alzheimer é reconhecida como um problema de saúde pública: há cada vez menos cuidadores jovens para cada vez mais doentes idosos e as insuficientes respostas de suporte social são uma realidade. O acto de cuidar no domícilio afecta de forma significativa os padrões ocupacionais dos prestadores de cuidados, levando-os a situações de desiquilíbrio ocupacional e a grande desgaste fisico e emocional. Assim, este trabalho pretende compreender a percepção dos cuidadores informais relativamente à integração destas pessoas em centros de dia, como estratégia de melhoria da estabilidade emocional e equilíbrio ocupacional dos seus familiares. Em termos da recolha da informação empírica, recorremos a uma metodologia mista, constituída por procedimentos mais de natureza quantitativa e outros de carácter mais qualitativo. Nesse enquadramento foram administrados a cerca de 10 cuidadores informais, antes e depois do seu familiar ter sido integrado no centro de dia, os instrumentos “Entrevista de Zarit para a sobrecarga do cuidador” e o “Teste abreviado da qualidade de vida” (WHOQOL-Bref), no sentido de se avaliar o impacto desta medida no equilíbrio emocional e percepção subjectiva da qualidade de vida. Concomitantemente, foram realizadas entrevistas também antes e depois da integração no sentido de compreender de que forma a frequência no centro de dia potencia um equilíbrio ocupacional mais adaptado. Os resultados obtidos mostram que ocorreu uma diminuição da sobrecarga emocional e uma melhoria da percepção subjectiva de qualidade de vida por parte dos cuidadores, bem como, um padrão de equilíbrio ocupacional mais ajustado e equilibrado e potenciador de bem-estar, após a frequência de seis meses do familiar com doença de Alzheimer no centro de dia “Memória de Mim”. Ainda que tratando-se de um estudo exploratório, estas conclusões parecem apontar para a importância destas respostas sociais no suporte às pessoas com demências e aos seus familiares.

História oral de vida: buscando o significado da hemodiálise para o paciente renal crônico

Este artigo tem como objetivo mostrar a utilização da história oral de vida como referencial metodológico para obtenção de dados qualitativos, buscando compreender o significado da hemodiálise e o impacto desta modalidade terapêutica na vida de pacientes do serviço de Hemodiálise do Hospital Universitário da Universidade de São Paulo.

Trajetória de vida de mulheres mastectomizadas integrantes de um grupo de auto ajuda a luz da História Oral

Coordenação de Aperfeiçoamento de Pessoal de Nível Superior

Vivenciando a sobrecarga ao vir-a-ser um cuidador familiar de pessoa com acidente vascular cerebral (AVC): análise do conhecimento

Trata-se de trabalho do tipo bibliográfico com a finalidade de fazer uma análise temática da produção do conhecimento em periódicos, acerca da sobrecarga em cuidadores familiares de pessoas com Acidente Vascular Cerebral (AVC). O corpus de análise reuniu artigos localizados nas décadas de 80 e 90, a partir das bases de dados Medline, Lilacs e Cinahl. A análise de conteúdo foi o referencial metodológico que permitiu organizar todo o conhecimento, em um corpo de categorias e subcategorias, denominadas: Categoria 1 - As seqüelas do AVC gerando sobrecarga; Categoria 2 - Aspectos gerando sobrecarga, congregando as subcategorias: o isolamento social, as mudanças e as insatisfações conjugais, as dificuldades financeiras e os déficits na saúde física e no autocuidado do cuidador; Categoria 3 - Outras análises relacionadas à sobrecarga em cuidadores familiares.

A experiência do cuidador familiar e da equipe multiprofissional com processo de cuidar de doentes renais crônicos em hemodiálise

Pós-graduação em Enfermagem (mestrado profissional) - FMB

Trajetória de pessoas com AIDS em situação de vulnerabilidade social: à luz da história oral de vida

The epidemic caused by HIV presents a global, dynamic and unstable phenomenon, which depends on the individual and collective human behavior. Efforts to deconstruct the stigmatized image caused by infection of AIDS are still often associated with adoption of socially unacceptable behavior to be a circumscribed the susceptibilities of vulnerable individuals and communities to infection, illness and death by HIV. This study aimed to: narrate the trajectory of life of people with AIDS more vulnerable enrolled in the Municipal Social Assistance Parnamirim / RN. It is a study of qualitative, exploratory and descriptive approach, taking oral history of life as technical and methodological framework. The colony consisted of 186 people with AIDS. The network was comprised of 13 employees of both sexes, aged between 19 and 62 years old with positive diagnosis and agreed to voluntarily participate. After approval by the Ethics Committee of the Federal University of Rio Grande do Norte (CEP / UFRN), in the opinion No. 719,926 CAAE: 30408114.5.0000.5537 on 6 June 2014 data were collected from August to September 2014. The employees signed the Informed Consent and Informed and letter of assignment. Held transcribing the interviews and later returned to respondents to retest, ie so that they confer what allowed us to carry out transcreation after consecutive readings. The reports were analyzed through Bardin content analysis. Guiding the analysis of the accounts of employees, we find three themes: Prejudice and discrimination in living with AIDS; Reacting to the diagnosis and the accession process to antiretroviral treatment; and religious coping in people with AIDS. It can be concluded in this study, that employees have shown great emotional impact after positive diagnosis for HIV / AIDS, especially with regard to social life, the family ties, work and above all to the prejudice of society. Treatment with antiretroviral drugs was seen as a motivation to regain dreams and plans for a future once uncertain, and even if it is not a cure therapy, provided the employees improved quality of life.

Trajetória de pessoas com AIDS em situação de vulnerabilidade social: à luz da história oral de vida

The epidemic caused by HIV presents a global, dynamic and unstable phenomenon, which depends on the individual and collective human behavior. Efforts to deconstruct the stigmatized image caused by infection of AIDS are still often associated with adoption of socially unacceptable behavior to be a circumscribed the susceptibilities of vulnerable individuals and communities to infection, illness and death by HIV. This study aimed to: narrate the trajectory of life of people with AIDS more vulnerable enrolled in the Municipal Social Assistance Parnamirim / RN. It is a study of qualitative, exploratory and descriptive approach, taking oral history of life as technical and methodological framework. The colony consisted of 186 people with AIDS. The network was comprised of 13 employees of both sexes, aged between 19 and 62 years old with positive diagnosis and agreed to voluntarily participate. After approval by the Ethics Committee of the Federal University of Rio Grande do Norte (CEP / UFRN), in the opinion No. 719,926 CAAE: 30408114.5.0000.5537 on 6 June 2014 data were collected from August to September 2014. The employees signed the Informed Consent and Informed and letter of assignment. Held transcribing the interviews and later returned to respondents to retest, ie so that they confer what allowed us to carry out transcreation after consecutive readings. The reports were analyzed through Bardin content analysis. Guiding the analysis of the accounts of employees, we find three themes: Prejudice and discrimination in living with AIDS; Reacting to the diagnosis and the accession process to antiretroviral treatment; and religious coping in people with AIDS. It can be concluded in this study, that employees have shown great emotional impact after positive diagnosis for HIV / AIDS, especially with regard to social life, the family ties, work and above all to the prejudice of society. Treatment with antiretroviral drugs was seen as a motivation to regain dreams and plans for a future once uncertain, and even if it is not a cure therapy, provided the employees improved quality of life.