L’expression de l’identité d’aidant dont le proche est atteint de la maladie d’Alzheimer.

Nous ne pouvons, désormais, ignorer l’implication des aidants familiaux au sein du dispositif des soins de santé. Lors de l’apparition d’une maladie chronique, telle une démence de type Alzheimer, certains aidants prennent considérablement part dans les soins, au risque de sacrifier leur propre santé physique et mentale. Cette population est maintenant considérée vulnérable sur les plans physiques, psychologiques et sociaux, et requiert un soutien adapté à ses besoins. Par ailleurs, la gestion de la prise en charge, ainsi que les stratégies employées par les aidants, sont loin d’être homogènes et varient d’un aidant à un autre. Objectif : Afin d’améliorer le soutien destiné aux aidants, ce mémoire vise à illustrer l’importance de considérer les types de soutien adoptés et à analyser le sens donné par l’aidant dans le soutien envers un proche atteint de démence de type Alzheimer. Sujets : Six aidants familiaux soutenant un proche (conjoint(e) ou parent) atteint de démence de type Alzheimer ont été rencontrés à plusieurs reprises, à un intervalle d’une année et demi, et ce jusqu’au décès du proche. Méthode : L’approche qualitative longitudinale a permis l’analyse des 16 entretiens afin de mieux cerner les types de soutien employés par les aidants à partir des typologies d’aidants élaborées par Clément, Gagnon, & Rolland (2005) et Pennec (2002) et l’identité d’amour de compassion détaillée par Underwood (2009). Les identités décrites par ces auteurs s’avèrent être des idéaltypes inexistants tels quels dans la réalité. Résultats : À l’exception d’un sujet, tous les aidants ont adopté des traits et des stratégies de gestion de prise en charge se rapportant à plus d’une identité d’aidant. Dans le cas de l’aidante à qui nous n’avons pas pu apposer une identité, peu d’information au niveau de ses stratégies dans la gestion de la prise en charge a été partagée. Ceci serait probablement dû au fait que l’aidante est très peu organisée dans le soutien et qu’elle prend peu d’initiatives, étant elle-même atteinte de démence de type Alzheimer. Conclusion : Afin de mieux adapter les services et le soutien destinés aux aidants familiaux, il importe de mieux comprendre les stratégies de soutien des aidants et leur évolution.

Facteurs associés à la résilience des aidantes familiales d’un parent âgé en perte d’autonomie à domicile au Liban

Avec l’avancement en âge, les personnes âgées qui vivent à domicile ont besoin du soutien des membres de leur entourage, notamment d’un aidant familial dont le rôle n’est toutefois pas sans conséquence sur sa santé. Les écrits empiriques ont montré que certains aidants sont résilients, c’est-à-dire qu’ils s’adaptent à leur situation et continuent leur développement. Toutefois, aucune étude n’a été effectuée au Liban auprès des aidantes familiales pour expliquer la résilience dans ce contexte et, plus spécifiquement, pour déterminer les facteurs qui pourraient l’influencer. Cette étude à devis corrélationnel de prédiction avait pour but de vérifier certaines des relations postulées par un modèle empirique découlant des écrits, soit la contribution de facteurs personnels (stratégies de coping et auto-efficacité) et de facteurs contextuels (relations familiales, perception du soutien de l’entourage, et sens accordé au « prendre soin »),à la résilience des aidantes familiales libanaises qui prennent soin d’un proche âgé à domicile. L’étude a été effectuée au Liban auprès d’un échantillon de convenance composé de 140 aidantes familiales principales cohabitant à domicile avec un parent âgé de 65 ans et plus ayant une perte d’autonomie fonctionnelle ou cognitive. La collecte des données a été réalisée en arabe en utilisant un guide d’entrevue standardisé regroupant des instruments nord-américains traduits selon la méthode de traduction inversée parallèle, de même qu’une question ouverte portant sur la perception des aidantes de la résilience, soit des facteurs qui les aident à continuer à prendre soin de leur proche âgé tout en continuant à se développer. Une analyse de régression hiérarchique a permis de vérifier la contribution unique des facteurs personnels et contextuels à expliquer la résilience des aidantes familiales, en contrôlant pour l’âge et le niveau de scolarité des aidantes et pour le niveau de perte d’autonomie et la fréquence des comportements dysfonctionnels de leurs parents âgés. Une analyse de contenu a permis de décrire la perception des aidantes eu égard à la résilience. Les résultats ont montré que le modèle empirique, incluant les variables de contrôle explique 54% de la variance de la résilience et que quatre des facteurs considérés, soit les stratégies de coping centrées sur le problème, les stratégies de coping centrées sur les émotions, le sentiment d’auto-efficacité et le sens du « prendre soin » ont une contribution statistiquement significative à la résilience des aidantes. Parmi ces quatre facteurs, le sens du « prendre soin » et le sentiment d’auto-efficacité expliquent davantage de variance, soit 11% et 5% respectivement. L’analyse qualitative du discours des aidantes a montré qu’elles prennent soin de leur proche âgé surtout par souci de réciprocité, mais également parce qu’il s’agit d’un membre de la famille et par respect pour Dieu. Ce sont par ailleurs leurs croyances et la satisfaction liée au prendre soin qui les aident à continuer et à se développer. Cette étude offre une meilleure compréhension du concept de la résilience des aidantes familiales au Liban et de certains facteurs qui en sont des prédicteurs significatifs. Elle offre des pistes pour l’intervention infirmière dans le but de promouvoir la santé de la personne/famille en tant que partenaire de soins. Des recommandations pour la pratique, la formation et la recherche sont proposées.

La familia del paciente en Unidad de Cuidado Intensivo (UCI)

Introducción: Ingresar a la UCI no es una experiencia exclusiva del paciente; implica e involucra directamente a la familia, en aspectos generadores de estrés, estrategias de afrontamiento, temores, actitudes y expectativas, la participación de la familia en el cuidado y el rol del psicólogo. Objetivo: Revisar de los antecedentes teóricos y empíricos sobre la experiencia de la familia en UCI. Metodología: Se revisaron 62 artículos indexados en bases de datos. Resultados: la UCI es algo desconocido tanto para el paciente como para la familia, por esto este entorno acentúa la aparición de síntomas ansiosos, depresivos y en algunos casos estrés post traumático. La muerte es uno de los principales temores que debe enfrentar la familia. Con el propósito de ajustarse a las demandas de la UCI, los familiares exhiben estrategias de afrontamiento enfocadas principalmente en la comunicación, el soporte espiritual y religioso y la toma de decisiones. El cuidado centrado en la familia permite una mejor comunicación, relación con el paciente y personal médico. El papel del psicólogo es poco explorado en el espacio de la UCI, pero este puede promover estrategias de prevención y de rehabilitación en el paciente y su grupo familiar. Discusión: es importante tener en cuenta que la muerte en UCI es una posibilidad, algunos síntomas como ansiedad, depresión pueden aparecer y mantenerse en el tiempo, centrar el cuidado en la familia permite tomar las decisiones basados en el diagnóstico y pronóstico y promueve expectativas realistas. Conclusiones: temores, expectativas, actitudes, estrategias de afrontamiento, factores generadores de estrés permiten explicar y comprender la experiencia de la familia del paciente en UCI.

Anhörigas upplevelser i samband med vård av en äldre person i hemmet : En litteraturöversikt

SAMMANFATTNINGSyftet: Syftet med denna systematiska litteraturstudie var att studera hur anhöriga till äldre personer upplevde sin situation i i samband med att de vårdade sina äldre hemma, hur de hanterade sin situation, samt vilka strategier de använde sig av för att hantera sin roll som anhörigvårdare. Metod: Databaserna Cinahl och Medline användes i sökningarna efter relevanta artiklar. Sökord som användes var relative and older people and home care, home health care and family caregiver elderly people, family caregivers and care givers of aging people, elderly people and family care givers of aging people, family care givers of older people, family caregivers and frail elderly, family caregiver and older people and home care, home care older people and family caregivers older people, family caregivers older people. Efter genomläsning bedömdes 16 artiklar vara användbara i resultatet. Dessa kom från vetenskapliga tidskrifter och artiklarna innehöll både kvalitativa studier som kvantitativa studier. Resultat: De flesta anhörigvårdare var kvinnor, de kunde uppleva en högre belastning än män. De anhöriga påverkades både mentalt, fysiskt och emotionellt. De kände sig bundna men kunde även känna ett välbefinnande i vården av den äldre personen. Anhöriga upplevde sin roll som anhörigvårdare till äldre personer i hemmen som att de var delaktiga i omsorgen genom praktiskt som känslomässigt stöd. Deras situation hade även inverkan på deras upplevelse av stress och hur de hanterade situationen. En del äldre anhörigvårdare var själva äldre och i behov av hjälp. Konsekvenserna av deras reaktioner/upplevelser beskrevs som både subjektiv och objektiv belastning. Samt att de även var mindre benägna att söka stöd i form av avlastning för sina äldre personer. Slutsats: Rollen som anhörigvårdare till äldre personer som vårdas i hemmen innebar förändringar i anhörigas livssituation, de fick ta ett stort ansvar för den äldre personen. De upplevde stora påfrestningar både känslomässigt som praktiskt, många kände sig ensamma utan stöd, andra hade olika sätt att hantera sin situation. Äldre anhörigvårdare var mer utsatta för belastning av olika skäl när de vårdade äldre personer i hemmet, dels var de själva äldre samt att de själva kunde vara i behov av hjälp för sina hälsoproblem. Kvinnorna var den grupp anhörigvårdare som upplevde störst belastning i vården av äldre personer i hemmet. När det gällde att söka hjälp och stöd såg det olika ut bland anhörigvårdarna, trots att kvinnorna upplevde störst belastning var de minst benägna att söka hjälp.

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.

Práticas populares de cuidado à criança: o saber/fazer de cuidadoras

Popular practices correspond to the resources used by households, lay people and popular therapists, whose perception of knowledge is constructed in the everyday. In this context, the sick child can become vulnerable to be dependent on a family caregiver, who often decide to employ popular practices. Thus, the child care should be shared between carer and health professional. However, they know little about the resources that the family uses to detect a grievance in infant. Therefore, the present research aimed to analyse the use of popular practices by caregivers of children with zero to five years old. We conducted an exploratory and descriptive study with a qualitative approach, together with 15 caregivers of children who were treated at the Joint Unit Felipe Shrimp, located in Natal, Rio Grande do Norte, Brazil. To select the participants, they should be age and above 18 years; be caregivers of children up to five years of age; and reside in the area ascribed the Joint Unit Felipe Shrimp. The data collection took place between September and October 2013, through in depth interview. This step was preceded by the approval of the Health Department of the city of Natal; the direction of the Joint Unit Felipe Shrimp; as well as, the Committee on Ethics in Research from the Federal University of Rio Grande do Norte with Certificate of Presentation and Consideration Ethics, No 15467013.8.0000.5537. Furthermore, the interviewees formally authorized their participation in the research by signing the consent form. The data were treated according to the technique of content analysis in the form of thematic analysis according to Bardin. This process, four categories emerged: "Types of popular practices used in the care of the child"; "Source of information of popular practices"; "Results obtained with popular practices"; "Factors that hinder the adoption of common practices." The results showed the use of popular practices by caregivers in the case of illness to children such as the homemade preparations with medicinal plants and folk healers. The family environment was referenced as the main learning space and spread of popular practices, which are influenced by cultural relations present in this context. As to the results obtained with popular features, the caregivers said to be satisfactory, and this triggers a feeling of confidence and acceptability of such measures. It is concluded that the use of popular practices in child care persists in everyday most of the participants, despite the hegemony of allopathic therapy. The caregivers stated that such practices are effective and easy to obtain, being secured in context by popular culture. In addition, health professionals, especially nurses, were seldom mentioned by the caregivers as to the information concerning popular resources used by them, which suggests the weakness in dialogic process of negotiating practices between both of them

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

Interação cuidador familiar-pessoa com AVC: autonomia compartilhada

Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq)

Vivência do cuidador familiar de paciente com câncer

Pós-graduação em Enfermagem (mestrado profissional) - FMB

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

Generalized resistance resources of informal caregivers: A study of demands for care, competing demands, perception of burden and cognitive stress

This study examines the relationship among psychological resources (generalized resistance resources), care demands (demands for care, competing demands, perception of burden) and cognitive stress in a selected population of primary family caregivers. The study utilizes Antonovsky's Salutogenic Model of Health, specifically the concept of generalized resistance resources (GRRs), to analyze the relative effect of these resources on mediating cognitive stress, controlling for other care demands. The study is based on a sample of 784 eligible caregivers who (1) were relatives, (2) had the main responsibility for care, defined as a primary caregiver, and (3) provided a scaled stress score for the amount of overall care given to the care recipient (family member). The sample was drawn from the 1982 National Long-Term Care Survey (NLTCS) of individuals who assisted a given NLTCS sample person with ADL limitations.^ The study tests the following hypotheses: (a) There will be a negative relationship between generalized resistance resources (GRRs) and cognitive stress controlling for care demands (demands for care, competing demands, and perceptions of burden); (b) of the specific GRRs (material, cognitive, social, cultural-environmental) the social domain will represent the most significant factor predicting a decrease in cognitive stress; and (c) the social domain will be more significant for the female than the male primary family caregiver in decreasing cognitive stress.^ The study found that GRRs had a statistically significant mediating effect on cognitive stress, but the GRRs were a less significant predictor of stress than perception of burden and demands for care. Thus, although the analysis supported the underlying hypothesis, the specific hypothesis regarding GRRs' greater significance in buffering cognitive stress was not supported. Second, the results did not demonstrate the statistical significance or differences among the GRR domains. The hypothesis that the social GRR domain was most significant in mediating stress of family caregivers was not supported. Finally, the results confirmed that there are differences in the importance of social support help in mediating stress based on gender. It was found that gender and social support help were related to cognitive stress and gender had a statistically significant interaction effect with social support help. Implications for clinical practice, public health policy, and research are discussed. ^

Longitudinal dyadic data analysis of stroke survivors and their spousal caregivers

Approximately 795,000 new and recurrent strokes occur each year. Because of the resulting functional impairment, stroke survivors are often discharged into the care of a family caregiver, most often their spouse. This dissertation explored the effect that mutuality, a measure of the perceived positive aspects of the caregiving relationship, had on the stress and depression of 159 stroke survivors and their spousal caregivers over the first 12 months post discharge from inpatient rehabilitation. Specifically, cross-lagged regression was utilized to investigate the dyadic, longitudinal relationship between caregiver and stroke survivor mutuality and caregiver and stroke survivor stress over time. Longitudinal meditational analysis was employed to examine the mediating effect of mutuality on the dyads’ perception of family function and caregiver and stroke survivor depression over time.^ Caregivers’ mutuality was found to be associated with their own stress over time but not the stress of the stroke survivor. Caregivers who had higher mutuality scores over the 12 months of the study had lower perceived stress. Additionally, a partner effect of stress for the stroke survivor but not the caregiver was found, indicating that stroke survivors’ stress over time was associated with caregivers’ stress but caregivers’ stress over time was not significantly associated with the stress of the stroke survivor.^ This dissertation did not find mutuality to mediate the relationship between caregivers’ and stroke survivors’ perception of family function at baseline and their own or their partners’ depression at 12 months as hypothesized. However, caregivers who perceived healthier family functioning at baseline and stroke survivors who had higher perceived mutuality at 12 months had lower depression at one year post discharge from inpatient rehabilitation. Additionally, caregiver mutuality at 6 months, but not at baseline or 12 months, was found to be inversely related to caregiver depression at 12 months.^ These findings highlight the interpersonal nature of stress in the context of caregiving, especially among spousal relationships. Thus, health professionals should encourage caregivers and stroke survivors to focus on the positive aspects of the caregiving relationship in order to mitigate stress and depression. ^

Qualidade de interação entre familiar/cuidador e adulto ou idoso pós-acidente vascular cerebral (AVC)

Considerando a família como instituição primária a qual se tem acesso, e a sua relevância nos diversos processos os quais o ser humano passa durante a vida, um resultado desse movimento são as mudanças na dinâmica familiar, quando há, por exemplo, o adoecimento de algum dos membros e um familiar torna-se cuidador. , atentando-se para as necessidades de cada sistema familiar. O objetivo deste estudo foi descrever a qualidade da relação entre o cuidador familiar e adulto ou idoso pós-Acidente Vascular Cerebral, que se encontram no processo de reabilitação. Participaram deste estudo, familiares de 11 pacientes que se encontram em atendimento na Clínica de Fonoaudiologia da Faculdade de Odontologia de Bauru FOB/USP. Para a coleta de dados foram agendadas entrevistas com a aplicação de questionários para caracterizar os aspectos interacionais entre o cuidador familiar e a pessoa cuidada, avaliar o nível de dependência na realização de atividades básicas e instrumentais diárias e como esses fatores podem influenciar na sobrecarga do cuidador, considerando o tempo do Acidente Vascular Cerebral (tAVC) e tempo de convivência diária (tCD) e, consequentemente, oferecer uma qualidade da relação insatisfatória. A média de idade dos participantes foi de 49 anos, houve predominância do sexo feminino (63,6%), a média de tAVC de 44 meses e a média de tCD foi de 19 horas. Para a análise dos dados optou-se por uma análise descritiva e abordagem quantitativa para a apresentação dos dados, para determinar a correlação entre as variáveis foi utilizado o Coeficiente de Correlação de Spearman e adotado nível de significância de 5% (p<0,05). Os resultados oferecem subsídios para estudos complementares direcionados ao desenvolvimento de intervenções no âmbito familiar. A psicologia pode auxiliar nessa tarefa de observar os comportamentos e as interações dos indivíduos, além de avaliar o contexto desse paciente, em especial, na descrição da qualidade da relação entre paciente-familiar, partindo da atual situação vivenciada.

Autopercepción del bienestar del cuidador familiar del adulto mayor y características sociodemográficas

Introducción: La autopercepción del bienestar dimensional se relaciona con características de cuidadoras. Objetivo: Establecer asociación de autopercepción en dimensiones de bienestar y características de cuidadores. Método: Estudio descriptivo, analítico y correlacional. Muestra 300 cuidadores. Matamoros Tamaulipas, México. Cuestionarios: Datos Sociodemográficos, Índice Barthel, Calidad Vida: dimensiones física, psicológica, social; y espiritual, éste con alpha de Cronbach 0.69. Pruebas chi-cuadrada y coeficiente correlación de Pearson. Resultados: Características mayoría mujeres, 42 años, casadas, hija, alfabetizadas, labores hogar, baja escolaridad, sin trabajo o ingresos limitados. Autopercepción con significancia en bienestar general, alfabetización y parentesco; dimensiones física, edad y género; psicológica, escolaridad; social, parentesco y espiritual alfabetización, situación laboral, ocupación y estado civil. Discusión: Características vulneran a cuidadoras a efectos adversos del cuidado y determinan mayor percepción de carga que altera su bienestar dimensional.

Cuidador familiar - Um parceiro na prevenção das úlceras por pressão

Relatório de Estágio apresentado para a obtenção do grau de Mestre na área de Enfermagem de Saúde Familiar