As condições de vida e saúde de pessoas acima de 50 anos com deficiência e seus cuidadores em um município paulista

Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP)

Percepção de cuidadores de crianças acerca da prevenção de acidentes domésticos infantis: análise à luz do modelo de crenças em saúde

This study aimed to analyze the perception of home caregivers of children from zero to five years-old on child domestic accidents and their influence in preventing these events. Exploratory and descriptive study with a qualitative approach, conducted with 20 caregivers attended at the Family Health Unit of Cidade Nova in Natal/Rio Grande do Norte, Brazil. The participants should have age less than 18 years-old, being a caregiver of at least a five year-old child and living in the area ascribed of Family Health Unit in the neighborhood Cidade Nova. Data collection occurred between March and April 2013 and a semistructured interview script was used. This stage was preceded by the acquiescence of the director of health institution where the research was developed, the Health Department of the Municipality of Natal as well as the Ethics Committee in Research of Universidade Federal do Rio Grande do Norte under Opinion nº 219 872 and CAAE nº 12236013.7.0000.5537. It is noted that respondents were asked to formal authorization by the Term of Consent. The data were treated according to the technique of the Collective Subject Discourse and analyzed based on three dimensions of the Health Belief Model, relating to perceptions of susceptibility to infant domestic accidents, self-efficacy to prevent infant and indicia domestic accidents for action of preventing domestic accidents in childhood. The results revealed that all the respondents were women, who, in their majority, they are mothers of the children they care, and predominantly they are aged between 18 and 30 years-old, full high school education and unemployed. Concerning the perception of susceptibility, it was unveiled understanding of deponents on various types of accidents, which are considered preventable. For this purpose, it was highlighted that the constant surveillance of the children is essential, keeping in view their high degree of curiosity and immaturity. On the perceived selfefficacy, the participants reported adopting preventive measures; however, they reported experiencing falls, burns, electric shocks and dog bites. In regard to the meaning attributed to experienced accidents they highlighted their feelings of guilt and despair, particularly about the cases understood as serious. Regarding the last dimension analyzed, related to indications for action, family, friends and television were the main source of information about household accidents and their prevention methods; however, health professionals were rarely cited as issuers of such knowledge. It is concluded that there is a widespread perception of women about prevention of domestic accidents and the weakness in the view of health professionals, including nurses, as disseminators of this information. This suggests the need to strengthen the dialogue on the issue and encouraging the participation of caregivers actively in the prevention of child domestic accidents

Vivências dos cuidadores de idosos durante a internação hospitalar

O estudo objetivou conhecer as vivências do cuidador principal no cuidado do idoso no hospital. Realizou-se uma pesquisa descritiva exploratória de cunho qualitativo. Foi executada nas unidades de clínica médica, cirúrgica e serviço de pronto atendimento de um hospital universitário do sul do país, entre os meses de novembro e dezembro de 2013, através de um roteiro de entrevista, respondido por 11 cuidadores de idosos com doenças crônicas. As entrevistas foram transcritas e analisadas com a técnica de análise temática de Minayo. Nesta pesquisa, os cuidadores se caracterizam por ser, na sua maioria, do sexo feminino, casadas, com filhos, sem emprego remunerado e serem filhas do idoso hospitalizado. Os cuidadores participantes entendem a atividade de cuidar como um dever moral, resultado das relações pessoais e familiares. A partir do momento em que necessitam desempenhar tal papel, o assumem como uma exigência decorrente do fato de viverem em família. Os motivos que levaram o cuidador a desempenhar este papel relacionam-se com fatores inerentes ao idoso, como estado de saúde e grau de parentesco. Ao cuidador, fazem alusão ao dever/obrigação, gratidão/retribuição, grau de parentesco, gênero, proximidade afetiva, estado civil, situação atual de emprego e ausência de outra pessoa para realizar o cuidado. Durante o processo de hospitalização do idoso, o cuidador desenvolve ações, tem facilidades e dificuldades e utiliza estratégias que o auxiliam a cuidar. Ao vivenciar o cuidado ao idoso no hospital é influenciado a tornar-se cuidador, apresenta diversas experiências ao cuidar e precisa promover mudanças, em relação ao cuidado, com a internação do idoso. Ao implementar estratégias de cuidado durante a hospitalização do idoso, o familiar cuidador se organiza para cuidar e faz uso de uma rede de apoio para o cuidado. Constatou-se que o idoso e seu cuidador centralizam as necessidades e as decisões, que a rede de apoio informal é a principal provedora de auxílio durante a hospitalização do idoso e que a rede de apoio formal extrahospitalar é existente, porém não apresenta participação ativa no suporte do cuidador familiar. Por outro lado, a equipe de enfermagem responsável pelo cuidado intra-hospitalar foi uma participante ativa na totalidade dos relatos, provendo tanto o cuidado técnico especializado quanto a ajuda nas situações cotidianas emergentes, bem como suporte emocional aos cuidadores e idosos. Outro aspecto relevante destacado foi a falta de ajuda de alguns familiares no amparo aos cuidadores ou até mesmo ao idoso hospitalizado. Esse fato é considerado, pelos cuidadores, uma situação inaceitável, pois a família é vista como o sustentáculo em momentos de crise. As implicações deste estudo nas intervenções da enfermagem no cuidado ao doente e sua família estão relacionadas às discussões e reflexões, a serem realizadas pela equipe de saúde, acerca da inclusão do familiar no espaço hospitalar, pois a sua presença auxilia na manutenção da estabilidade física e emocional do idoso. Desta forma, a enfermagem poderá oferecer apoio ao familiar acompanhante para que se mantenha estável e possa formar uma parceria de cuidados, contribuindo na reabilitação do idoso.

Perceção dos cuidadores informais sobre o planeamento da alta

Enquadramento: Conhecer a perceção que os cuidadores informais possuem sobre o planeamento da alta dos idosos internados, permite que os enfermeiros conheçam as reais necessidades do cuidador e do idoso, contribuindo assim, para a diminuição da ansiedade, prevenção de complicações e consequentemente uma maior satisfação pelos cuidados recebidos. Objetivos: Conhecer a perceção dos cuidadores informais sobre o planeamento da alta hospitalar do idoso, e analisar associações entre as variáveis sociodemográficas, profissionais, familiares, clínicas e psicossociais e a referida perceção. Métodos/ Procedimentos: Realizou-se um estudo quantitativo, transversal, descritivo e correlacional, utilizando uma amostra não probabilística por conveniência, constituída por 41 cuidadores informais de idosos internados no serviço de Medicina 1 do Centro Hospitalar do Algarve – Unidade de Faro. Recorreu-se ao questionário de caracterização sociodemográfica, profissional, familiar e clínica, bem como a utilização do Índice de Barthel, questionário de Planeamento da Alta (PREPARED) e a escala de Ansiedade e Depressão Hospitalar (HADS). Resultados: Dos 41 cuidadores informais,73,17 % são do género feminino, 78% são casados/ união de fato, 39,0% mantêm-se ativos profissionalmente a tempo inteiro e em 51,2% são filhos do idoso, que apresentam uma média de idade de 78,78 anos. A maioria (82,9%) reside na mesma habitação que o idoso, sendo cuidadores informais há menos de 3 meses (58,5%). Os cuidadores apresentam um nível de ansiedade leve a moderada, sendo superior para o género feminino, embora não se verificasse diferenças estatisticamente significativas. Relativamente à perceção dos cuidadores relacionados com o planeamento da alta, a maioria privilegia as informações relacionadas como conseguir fazer as AVD, afirmando que se sentem preparados para regressar a casa, contudo a maioria não sente confiança para executar as tarefas diárias no domicílio. Constatou-se que a presença de apoio da rede formal influencia significativamente a perceção do planeamento da alta (p< 0,05), sendo que o género, agregado familiar e grau de dependência, embora de forma parcial (apenas para um indicador) também são preditivas da perceção. Conclusões: Apesar do número reduzido da amostra, os resultados obtidos evidenciam a relevância de organização dos cuidados face à satisfação das necessidades dos idosos e seus cuidadores em cuidados de saúde, no que dizem respeito ao planeamento da alta, como busca da qualidade. Palavras-chave: perceção do planeamento da alta, cuidadores informais, idosos.

Caregiving experience and its influencing factors : rural versus urban adult-child caregivers caring for parents with dementia in China

Background: It is predicted that China will have the largest number of cases of dementia in the world by 2025 (Ferri et al., 2005). Research has demonstrated that caring for family members with dementia can be a long-term, burdensome activity resulting in physical and emotional distress and impairment (Pinquart & Sorensen, 2003b). The establishment of family caregiver supportive services in China can be considered urgent; and the knowledge of the caregiving experience and related influencing factors is necessary to inform such services. Nevertheless, in the context of rapid demographic and socioeconomic change, the impact of caregiving for rural and urban Chinese adult-child caregivers may be different, and different needs in supportive services may therefore be expected. Objectives: The aims of this research were 1) to examine the potential differences existing in the caregiving experience between rural and urban adult-child caregivers caring for parents with dementia in China; and 2) to examine the potential differences existing in the influencing factors of the caregiving experience for rural as compared with urban adult-child caregivers caring for parents with dementia in China. Based on the literature review and Kramer.s (1997) caregiver adaptation model, six concepts and their relationships of caregiving experience were studied: severity of the care receivers. dementia, caregivers. appraisal of role strain and role gain, negative and positive well-being outcomes, and health related quality of life. Furthermore, four influencing factors (i.e., filial piety, social support, resilience, and personal mastery) were studied respectively. Methods: A cross-sectional, comparative design was used to achieve the aims of the study. A questionnaire, which was designed based on the literature review and on Kramer.s (1997) caregiver adaptation model, was completed by 401 adult-child caregivers caring for their parents with dementia from the mental health outpatient departments in five hospitals in the Yunnan province, P.R. China. Structural equation modelling (SEM) was employed as the main statistical technique for data analyses. Other statistical techniques (e.g., t-tests and Chi-Square tests) were also conducted to compare the demographic characteristics and the measured variables between rural and urban groups. Results: For the first research aim, the results indicated that urban adult-child caregivers in China experienced significantly greater strain and negative well-being outcomes than their rural peers; whereas, the difference on the appraisal of role gain and positive outcomes was nonsignificant between the two groups. The results also indicated that the amounts of severity of care receivers. dementia and caregivers. health related quality of life do not have the same meanings between the two groups. Thus, the levels of these two concepts were not comparable between the rural and urban groups in this study. Moreover, the results also demonstrated that the negative direct effect of gain on negative outcomes in urban caregivers was stronger than that in rural caregivers, suggesting that the urban caregivers tended to use appraisal of role gain to protect themselves from negative well-being outcomes to a greater extent. In addition, the unexplained variance in strain in the urban group was significantly more than that in the rural group, suggesting that there were other unmeasured variables besides the severity of care receivers. dementia which would predict strain in urban caregivers compared with their rural peers. For the second research aim, the results demonstrated that rural adult-child caregivers reported a significantly higher level of filial piety and more social support than their urban counterparts, although the two groups did not significantly differ on the levels of their resilience and personal mastery. Furthermore, although the mediation effects of these four influencing factors on both positive and negative aspects remained constant across rural and urban adult-child caregivers, urban caregivers tended to be more effective in using personal mastery to protect themselves from role strain than rural caregivers, which in turn protects them more from the negative well-being outcomes than was the case with their rural peers. Conclusions: The study extends the application of Kramer.s caregiving adaptation process model (Kramer, 1997) to a sample of adult-child caregivers in China by demonstrating that both positive and negative aspects of caregiving may impact on the caregiver.s health related quality of life, suggesting that both aspects should be targeted in supportive interventions for Chinese family caregivers. Moreover, by demonstrating partial mediation effects, the study provides four influencing factors (i.e., filial piety, social support, resilience, and personal mastery) as specific targets for clinical interventions. Furthermore, the study found evidence that urban adult-child caregivers had more negative but similar positive experience compared to their rural peers, suggesting that the establishment of supportive services for urban caregivers may be more urgent at present stage in China. Additionally, since urban caregivers tended to use appraisal of role gain and personal mastery to protect themselves from negative well-being outcomes than rural caregivers to a greater extend, interventions targeting utility of gain or/and personal mastery to decrease negative outcomes might be more effective in urban caregivers than in rural caregivers. On the other hand, as cultural expectations and expression of filial piety tend to be more traditional in rural areas, interventions targeting filial piety could be more effective among rural caregivers. Last but not least, as rural adult-child caregivers have more existing natural social support than their urban counterparts, mobilising existing natural social support resources may be more beneficial for rural caregivers, whereas, formal supports (e.g., counselling services, support groups and adult day care centres) should be enhanced for urban caregivers.

Evaluar la calidad de vida de los cuidadores en enfermos de Alzheimer

[ES]Los cambios sociodemográficos y el aumento de la esperanza de vida han dado lugar a un aumento de algunas enfermedades, incluyendo la enfermedad de Alzheimer. La enfermedad de Alzheimer no sólo afecta a la persona que padece dicha enfermedad, sino que también repercute en la familia. Los cuidadores familiares son los que, de manera mayoritaria, se hacen cargo de la atención de estos pacientes con un compromiso de 24 horas, con lo que implica hacer cambios en sus estilos de vida. Los objetivos de este estudio son describir las características socio-demográficas, determinar la sobrecarga de los cuidadores informales y evaluar la calidad de sueño de los cuidadores. Se realizará un estudio transversal que incluirá a 40 cuidadores de enfermos de Alzheimer, seleccionados por un muestreo no probabilístico de selección por cuotas. Los participantes serán los cuidadores informales de pacientes con la enfermedad de Alzheimer que estén en el estadío III o IV de dicha enfermedad. Nuestra variable dependiente será el sueño y como variable independiente la sobrecarga. El estudio se realizará en la asociación de familiares de Alzheimer de Bilbao (A.F.A - Bizkaia), dónde se captará a la muestra de estudio y donde se procederá a aplicar los cuestionarios pertinentes para dicho estudio. Para participar en el estudio es necesario que firmen el consentimiento informado. Los instrumentos que se utilizarán son el cuestionario de Pittsburg que evalúa la calidad de sueño y la escala de carga de Zarit. Para el análisis de datos se utilizará el programa SPSS 15.0. Palabras clave: enfermedad de Alzheimer, cuidadores, cuidadores familiares, demencia, sobrecarga, sueño.

Pro dia nascer feliz: Possibilidades de articulação entre educação formal e não formal no Colégio Estadual Guadalajara

Esta pesquisa tem por objetivo geral analisar a dinâmica de funcionamento das atividades não formais do Colégio Estadual Guadalajara e apontar para possíveis pontes-diálogo entre educação formal e não formal nesse espaço escolar. Para atingir esse objetivo a dissertação contemplou: a) a descrição das atividades do Núcleo de Cultura do Guadá desde a sua implementação, b) a análise das possíveis relações estabelecidas entre as atividades não formais e as atividades oferecidas pela instituição a partir do proposto pela rede oficial de ensino e c) a influência do Programa Mais Educação na promoção das atividades não formais de ensino pela escola. Nesse sentido, a investigação em foco, ressalta o regime colaborativo entre o ideal de educação integral proposto pelo programa e a perspectiva de formação holística do indivíduo presente nas atividades não formais do C.E. Guadalajara. Para isso conta com aporte teórico de autores como Gohn (2010), Trilla (2008), Gadotti (2005) e Libâneo (2010) para conceituar e categorizar educação formal e não formal. E, com Ferreira (2007), Guará (2006), Cavaliere (2002) e Coelho (s/d) para esclarecer a perspectiva de educação integral e problematizá-la. Os procedimentos metodológicos adotados foram: observação não-participante, análise documental, história oral e aplicação de entrevistas semi-estruturada realizadas com as duas animadoras culturais do Núcleo de Cultura. Os resultados revelam que, de fato existem articulações pontuais entre educação formal e não formal na escola pesquisada. Este aspecto está relacionado com a participação de professores no planejamento das atividades não formais e a melhoria do rendimento dos alunos nas disciplinas formais em virtude da participação nas oficinas ofertadas pelo núcleo. No tocante a colaboração do Programa Mais Educação para a promoção das atividades não formais da escola foi constatado que o programa serviu como auxílio para subsidiar atividades que já ocorriam no espaço escolar sem seu financiamento.

Os Pontos de Cultura como espaços não-formais de ensino: Práticas educativas na Baixada Fluminense.

A presente pesquisa consiste em um panorama das práticas educativas desenvolvidas pelas ONGs atuantes como Pontos de Cultura situadas na região da Baixada Fluminense. Este trabalho tem como objetivo geral analisar as ações desenvolvidas pelas ONGs contempladas como pontos de cultura na região da Baixada Fluminense de acordo com os seguintes objetivos específicos: identificar aquelas ações que podem ser consideradas de caráter educativo não-formal e as relações entre estas ações ao conceito de cultura política. A partir da discussão dos conceitos de Cultura apresentados por Marilena Chauí, do histórico das políticas culturais no Brasil, por Antonio Albino Canelas Rubim e das definições que originaram o programa fruto de uma política pública recente no Brasil, estas ações são entendidas dentro da categoria não-formal. Assim sendo, há a discussão do papel da educação não-formal nestes processos através do desenvolvimento dos conceitos por autores como Maria da Glória Gohn, José Carlos Libâneo e Jaume Trilla, uma descrição da região e a análise de dados oriunda das respostas obtidas através de duas entrevistas e dez formulários respondidos pelos gestores responsáveis pelas organizações em 2014. Os resultados encontrados indicaram que o Programa Cultura Viva atua como uma espécie de preenchimento das lacunas apresentadas por Gohn no que se refere à educação não-formal e de que embora as organizações possuam campos de atuação bem heterogêneos, as práticas educativas realizadas possuem em comum a abordagem da cultura como direito humano e que estas podem ser uma mola propulsora para a construção de uma nova cultura política.

Saúde Mental e Necessidades nos Cuidadores de Familiares com Demência

Dissertação apresentada à Universidade Fernando Pessoa como parte dos requisitos para obtenção do grau de Mestre em Psicologia, especialização em Psicologia Clínica e da Saúde.

Dificuldades sentidas pelos cuidadores informais de Pessoas Idosos

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

Prevalence and predictors of HIV-related stigma among institutional- and community-based caregivers of orphans and vulnerable children living in five less-wealthy countries.

BACKGROUND: In the face of the HIV/AIDS epidemic that has contributed to the dramatic increase in orphans and abandoned children (OAC) worldwide, caregiver attitudes about HIV, and HIV-related stigma, are two attributes that may affect caregiving. Little research has considered the relationship between caregiver attributes and caregiver-reported HIV-related stigma. In light of the paucity of this literature, this paper will describe HIV-related stigma among caregivers of OAC in five less wealthy nations. METHODS: Baseline data were collected between May 2006 through February 2008. The sample included 1,480 community-based and 192 institution-based caregivers. Characteristics of the community-based and institution-based caregivers are described using means and standard deviations for continuous variables or counts and percentages for categorical variables. We fit logistic regression models, both for the full sample and separately for community-based and institution-based caregivers, to explore predictors of acceptance of HIV. RESULTS: Approximately 80% of both community-based and institution-based caregivers were female; and 84% of institution-based caregivers, compared to 66% of community-based caregivers, said that they would be willing to care for a relative with HIV. Similar proportions were reported when caregivers were asked if they were willing to let their child play with an HIV-infected child. In a multivariable model predicting willingness to care for an HIV-infected relative, adjusted for site fixed effects, being an institution-based caregiver was associated with greater willingness (less stigma) than community-based caregivers. Decreased willingness was reported by older respondents, while willingness increased with greater formal education. In the adjusted models predicting willingness to allow one's child to play with an HIV-infected child, female gender and older age was associated with less willingness. However, willingness was positively associated with years of formal education. CONCLUSIONS: The caregiver-child relationship is central to a child's development. OAC already face stigma as a result of their orphaned or abandoned status; the addition of HIV-related stigma represents a double burden for these children. Further research on the prevalence of HIV-related acceptance and stigma among caregivers and implications of such stigma for child development will be critical as the policy community responds to the global HIV/AIDS orphan crisis.

Gender differences among Canadian spousal caregivers at the end of life

The purpose of this study was to examine gender differences in spousal caregiving at the end of life. The primary research question was to determine gender differences in caregiver strain among spousal caregivers. Secondary research questions investigated included (i) the presence of gender differences among spousal caregivers in the duration of care provided; (ii) gender differences among spousal caregivers in formal service use and unmet service needs; and (iii) whether support to care recipients in activities of daily living varied according to the gender of the spousal caregiver. The study was conducted over a 2-year period (2000-2002) in south-central Ontario, Canada. The study sample included 283 informal spousal caregivers (198 females, 85 males) each of whom were caring for a terminally ill spouse at the time they participated in a cross-sectional telephone survey. The analysis showed that females reported a significantly greater level of caregiving strain than males (t = -2.12, d.f. = 281, P = 0.035). When considering source of support in activities of daily living for the care recipient, differential assistance was noted on the basis of caregiver gender. Female caregivers had almost twice the odds of providing support in toileting-related tasks than male caregivers (odds ratio (OR) = 1.98, 95% confidence interval (CI) = 1.01-3.85, P = 0.044), while male caregivers had approximately twice the odds of providing support in mobility-related tasks (OR = 0.41, 95% CI = 0.21-0.81, P = 0.011). Care recipients who had a female caregiver had lower odds of receiving support from family and friends in tasks associated with personal care (OR = 0.17, 95% CI = 0.05-0.53, P = 0.002). To address gender differences in caregiving, a realistic home-based palliative care approach must take into account the importance of informal caregivers. © 2008 Blackwell Publishing Ltd.

Bereavement Adjustment and Support among Caregivers

The objective of this study was to examine the influence of health status, demographics, duration of bereavement, caregiving experience, and the use of formal services on bereavement adjustment for caregivers. Participants were 151 bereaved family caregivers who participated in a telephone survey. The most frequently reported symptoms by caregivers were sleeplessness, followed by depression, and loss of appetite. One hundred thirty-five respondents (89%) felt that things were going reasonably well for themselves at the time of the interview, and 91 respondents (60%) had come to terms with their loved one's death. Hierarchical regression models revealed that being a younger caregiver, reporting poorer mental health status, and being the spouse of the care recipient were predictive of a greater number of reported depressive symptoms in bereavement. Poorer mental health status, being a spousal caregiver, and reporting negative consequences of caregiving on caregiver's health were predictive of poorer recovery in bereavement. Study results also revealed that relatives and friends played an important role in assisting the bereaved to manage the bereavement process. This article identifies factors associated with poor reactions in bereavement and that bereavement as a social process where family and friends play an important role in the recovery process.

Caregiving at the end of life:perspectives from spousal caregivers and care recipients.

OBJECTIVE: The purpose of this study is to examine the perspectives of both the spousal caregiver and care recipient on the caregiving experience in home-based palliative care. METHODS: A qualitative research strategy involving home-based face-to-face interviews with older palliative care patients and their spousal caregivers was used to examine the caregiving experience. RESULTS: Ten spousal caregivers and care recipient dyads participated in the study. Most informal caregivers viewed caregiving as an extension of the family relationship where caregiving responsibilities evolved over time. Spousal caregivers identified many negative reactions to caregiving, such as fatigue or weariness, depression, anger and sadness, financial stresses, and lack of time. Care recipients acknowledged the emotional and financial strain and expressed concern for their spouses. Both caregivers and care recipients were appreciative of home care services although they identified the need for additional services. They also identified difficulties in communication with formal providers and poor coordination of care among the various services. Both caregivers and care recipients disclosed some challenges with informal supports, but on the whole felt that their presence was positive. Additional positive aspects of caregiving reported by spouses included strengthened relationship with their spouse and discovering emotional strength and physical abilities in managing care. SIGNIFICANCE OF RESULTS: Health care and social service professionals need to recognize and understand both caregiver and care recipient perspectives if they are to successfully meet the needs of both members of the dyad.

A Comparison of Support Needs Between Rural and Urban Family Caregivers Providing Palliative Care

The present study examined the support needs for urban and rural family caregivers of a palliative family member using a cross-sectional telephone survey in northeastern Ontario, Canada (n = 140; 70 urban, 70 rural). Support needs identified as most important by both the groups were informational. Rural caregivers reported greater unmet needs in tangible support (P =.01). No differences were observed between the groups for emotional or informational support needs (P =.25 and P =.35, respectively). Rural and urban caregivers perceived care for care recipients as accessible (mean accessibility score 1.9, standard deviation [SD] = 0.09 and 1.7, SD = 0.7, respectively, P =.20); the majority indicated that when needed, services were easily and quickly obtained. Although there are similarities in the formal care experiences, rural caregivers experience greater unmet needs in receiving support for instrumental activities. © The Author(s) 2013.