Necessidades de cuidados no idoso: comparação entre um Centro de Dia e um serviço de apoio domiciliário

RESUMO: Promover a qualidade de vida no envelhecimento implica responder às necessidades de cuidados dos mais velhos. Actualmente, muitos idosos permanecem no seu domicílio, o que exige a prestação adequada de cuidados informais e/ou formais nesse contexto. O presente estudo teve como objectivo identificar e comparar as necessidades de cuidados de utentes de um centro de dia e de um serviço de apoio domiciliário numa Instituição Particular de Solidariedade Social. A amostra foi constituída por 54 utentes idosos e pelos seus cuidadores informais. Os utentes foram avaliados com recurso a: Camberwell Assessment of Need for the Elderly, Geriatric Depression Scale, Mini Mental State Examination, Índice de Barthel e Escala de Lawton e Brody para as actividades de vida diária. Os respectivos cuidadores informais foram avaliados quanto a necessidades de cuidados e a sobrecarga familiar. As necessidades de cuidados mais frequentes na amostra estavam relacionadas com alimentação, companhia, saúde física e actividades diárias. Parte das necessidades estavam cobertas. Porém, muitas necessidades psicológicas e sociais, nomeadamente actividades diárias, companhia e memória, não estavam cobertas, em particular nos utentes de apoio domiciliário. Tal como esperado, foi encontrado um maior número de necessidades de cuidados em situações de dependência e de doenças neuropsiquiátricas. Comparativamente com os utentes de centro de dia, os utentes de apoio domiciliário apresentaram números superiores de necessidades de cuidados, necessidades não cobertas. Uma melhor identificação das necessidades de cuidados e dos factores associados a estas poderá ajudar a delinear intervenções adequadas em centros de dia e em serviços de apoio domiciliário.------------ABSTRACT: To promote quality of life in aging means responding to the health and social needs of older people. Today, elderly people tend to stay at home until later stages of disease, which requires the provision of adequate informal care, formal care or both. This study aimed to identify and compare the needs for care of users of a day centre and a domiciliary care service, in a nonprofit organization in Portugal. The sample consisted of 54 elderly users and of their informal caregivers. The users were assessed using the Camberwell Assessment of Need for the Elderly (CANE), the Geriatric Depression Scale, the Mini Mental State Examination, the Barthel Index and the Lawton and Brody Scale for activities of daily living. Informal caregivers were assessed using the CANE and the Zarit Burden Interview. The more frequent care needs were related to food, company, physical health and daytime activities. A proportion of needs were met. However, many psychological and social needs were unmet, namely daytime activities, company and memory, and this was so in particular concerning domiciliary care users.As expected, a higher number of needs was related to dependency and the presence of neuropsychiatric conditions. The domiciliary care users had more total needs and more unmet needs when compared with day centre users. The identification of needs for care and their associated factors can help in the planning of appropriate interventions in day centres and domiciliary care services.

Adapting the homes of older people: A case study of costs and savings

Meeting the demand for independent living from the increasing number of older people presents a major challenge for society, government and the building industry. Older people's experience of disabling conditions can be affected by the design and layout of their accommodation. Adaptations and assistive technology (AT) are a major way of addressing this gap between functional capacity and the built environment. The degree of adaptability and the differences in the average cost of adaptation of different types of property are large and there is major variation within property type. Based on a series of user profiles, it was found that a comprehensive package of adaptations and AT is likely to result in significant economies arising from a reduction in the need for formal care services. This finding is sensitive to assumptions about how long an individual would use the adaptations and AT, as well as to the input of informal care and the nature of their accommodation. The present study, which focused on social housing, has implications for how practitioners specify ways of meeting individual needs as well as providing a case to support the substantial increase in demand for specialist adaptation work.

Caminhos de uma rede: o percurso do usuário de álcool e outras drogas

Pós-graduação em Psicologia - FCLAS

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.

Los impactos de los cuidados de salud en los ámbitos de vida de las personas cuidadoras

El objetivo del artículo es analizar la distribución del tiempo de las personas cuidadoras en las distintas esferas de la vida (la esfera laboral, la privada o personal y la doméstica). El estudio se basa en el análisis de los datos de la Encuesta de Empleo del Tiempo 2002-2003 del Instituto Nacional de Estadística (INE). Los resultados de la investigación muestran los impactos negativos del cuidado informal sobre los distintos ámbitos de la vida en términos de reducción de la vida privada o personal, de la participación en el ámbito laboral y de mayor carga del trabajo total. Asimismo, también ponen de manifiesto la heterogeneidad de los efectos del cuidado informal en la vida cotidiana de las personas cuidadoras según el sexo, la edad y el nivel de ingresos.

Como a doença de Alzheimer afeta os cuidadores informais no concelho de Abrantes

Trabalho de Projeto apresentado à Escola Superior de Educação do Instituto Politécnico de Castelo Branco para cumprimento dos requisitos necessários à obtenção do grau de Mestre em Gerontologias Social.

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.

Mental Health and Morbidity of Caregivers and Co-Residents of individuals with Dementia: A Quasi-Experimental Design

Objectives: To determine if providing informal care to a co-resident with dementia symptoms places an additional risk on the likelihood of poor mental health or mortality compared to co-resident non-caregivers.
Design: A quasi-experimental design of caregiving and non-caregiving co-residents of individuals with dementia symptoms, providing a natural comparator for the additive effects of caregiving on top of living with an individual with dementia symptoms. 
Methods: Census records, providing information on household structure, intensity of caregiving, presence of dementia symptoms and self-reported mental health, were linked to mortality records over the following 33 months. Multi-level regression models were constructed to determine the risk of poor mental health and death in co-resident caregivers of individuals with dementia symptoms compared to co-resident non-caregivers, adjusting for the clustering of individuals within households.
Results: The cohort consisted of 10,982 co-residents (55.1% caregivers), with 12.1% of non-caregivers reporting poor mental health compared to 8.4% of intense caregivers (>20 hours of care per week). During follow-up the cohort experienced 560 deaths (245 to caregivers). Overall, caregiving co-residents were at no greater risk of poor mental health but had lower mortality risk than non-caregiving co-residents (ORadj=0.93, 95% CI 0.79, 1.10 and ORadj=0.67, 95% CI 0.56, 0.81, respectively); this lower mortality risk was also seen amongst the most intensive caregivers (ORadj=0.65, 95% CI 0.53, 0.79).
Conclusion: Caregiving poses no additional risk to mental health over and above the risk associated with merely living with someone with dementia, and is associated with a lower mortality risk compared to non-caregiving co-residents.

Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe

BACKGROUND: The aim of this study was to determine the social/economic costs and health-related quality of life (HRQOL) of patients with epidermolysis bullosa (EB) in eight EU member states. METHODS: We conducted a cross-sectional study of patients with EB from Bulgaria, France, Germany, Hungary, Italy, Spain, Sweden and the United Kingdom. Data on demographic characteristics, health resource utilisation, informal care, labour productivity losses, and HRQOL were collected from the questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D) questionnaire. RESULTS: A total of 204 patients completed the questionnaire. Average annual costs varied from country to country, and ranged from euro9509 to euro49,233 (reference year 2012). Estimated direct healthcare costs ranged from euro419 to euro10,688; direct non-healthcare costs ranged from euro7449 to euro37,451 and labour productivity losses ranged from euro0 to euro7259. The average annual cost per patient across all countries was estimated at euro31,390, out of which euro5646 accounted for direct health costs (18.0 %), euro23,483 accounted for direct non-healthcare costs (74.8 %), and euro2261 accounted for indirect costs (7.2 %). Costs were shown to vary across patients with different disability but also between children and adults. The mean EQ-5D score for adult EB patients was estimated at between 0.49 and 0.71 and the mean EQ-5D visual analogue scale score was estimated at between 62 and 77. CONCLUSION: In addition to its negative impact on patient HRQOL, our study indicates the substantial social/economic burden of EB in Europe, attributable mostly to high direct non-healthcare costs.

Relatório de estágio de intervenção comunitária

Numa sociedade cada vez mais envelhecida, em que o aumento da necessidade de apoio às pessoas idosas dependentes emerge como um problema prioritário, interrogamo-nos sobre a necessidade de dar mais atenção à prestação de cuidados informais à pessoa idosa dependente em contexto domiciliário. O planeamento em saúde serve como suporte para as mudanças que se pretendem implementar em qualquer contexto ao nível da saúde, oferecendo o acesso a cuidados de qualidade, aprimorando a eficácia e a eficiência de uma forma contínua a cuidadores informais de diferentes realidades. O presente relatório tem como finalidade registar de forma clara e objetiva as atividades realizadas, observadas e proporcionadas pela prática clínica referente ao estágio realizado na comunidade no âmbito do terceiro curso de mestrado em enfermagem com especialização em saúde comunitária da Escola Superior de Saúde de Portalegre. Pretendo ainda através deste relatório, refletir sobre o contributo do mesmo para o meu desenvolvimento pessoal e profissional como futura enfermeira especialista em saúde comunitária. A metodologia seguida neste relatório assim como no estágio realizado foi a metodologia do planeamento em saúde. O estágio decorreu de Setembro de 2013 a Fevereiro de 2014 na UCC de Elvas e posteriormente nos domicílios dos cuidadores informais. Foram inseridos na intervenção dez cuidadores informais e relativamente à satisfação manifestada pelos mesmos acerca da intervenção obteve-se um resultado de 100% que se mostraram muito satisfeitos ou extremamente satisfeitos. Este estágio de intervenção comunitária permitiu-nos adquirir a maioria das competências gerais do enfermeiro especialista assim como as competências específicas do enfermeiro especialista em enfermagem comunitária e de saúde pública definida pela Ordem dos Enfermeiros.

Constructions of children's needs in informal kinship care in rural China

Kinship care is the oldest form of alternative child care in the world. Recent years have witnessed a significant increase in the number of children being placed in kinship care across Western countries. However, in contrast to rapid knowledge advances about formal kinship care, far less is known about the needs of children in informal kinship care, especially in Asian contexts. This thesis and the study upon which it is formed sought to redress this knowledge gap. Qualitative approach was adopted to explore social constructions of children in informal kinship care in rural China. Parents in China seeking work in cities have left behind around 58 million rural children, mostly with relatives and without the involvement of the state. The present study examined caregivers’ and school personnel’s understandings of these school-age children’s needs through semi-structured interviews with 23 kin caregivers and five school personnel in Shijiapu Town, Jilin Province, China. The central question that guided the whole study is: What are the needs of children in informal kinship care in rural Jilin Province, China? Interpretative Phenomenological Analysis was used to categorise and interpret the qualitative data. Based on participants’ constructions, this study developed a need model with eight themes. They are: (1) emotional needs and mental health, (2) relationships, (3) empowerment and agency, (4) safety, (5) education, (6) basic care, (7) physical health, and (8) personal development. These needs are grounded in the Chinese context, and therefore a good understanding of Chinese culture is essential to address them. The first four needs particularly capture children’s separations from their parents, and the rest are more general, and can be applied to most Chinese children. To meet the most important need for children left behind, namely education, these caregivers determined that others needs sometimes have to be compromised. Children left behind are a vulnerable group in contemporary rural China, and their diverse needs are attended to by several groups. This study found that as children’s closest kin while their parents are away, caregivers play a vital role in salving the children’s emotional loss. Caregivers’ love and familial obligations strongly motivate them to care for these children, and sensitivity to social stigma makes them strive to show their love and care to compensate for perceived differences between these children and their peers. Caregivers’ efforts to make children happy, however, were sometimes criticised by some school personnel, who see this as spoiling. The conflicting viewpoint between caregivers and school personnel indicate their different roles and perceptions in children’s lives, and the latter influence these children in a more authoritative way. Informal kinship care has several advantages of addressing children’s needs, especially their needs for emotional bonds with family. Community-based kin networks provide children with both emotional and material support. However, these advantages sometimes are restricted by caregivers’ child rearing capacity. Having developed a model of the needs of children left behind in China, this study suggests that caregivers, school personnel and government social services work in harmony to be child-centred and meet these children’s diverse needs. The unmet needs of children left behind mainly result from unbalanced development between urban and rural China, therefore, it is imperative to enhance state policies and programs that improve wellbeing for this growing part of China’s people.

Informal kinship care in rural China : the influence of Confucianism and attachment

This article examines the role of informal kinship care in addressing the emotional needs and mental health, along with relationships, of school-age children left behind in rural China. Rural–urban migration in China has caused many rural children to be left behind in their local communities. Based on semi-structured interview data, this article explores Confucianism’s impact on Chinese kin caregivers’ understandings of children’s needs and their childrearing practices to address these needs. Through the lens of attachment theory, this study identified a close affective bond between children left behind and their kin caregivers. This relationship is underpinned by kin caregivers’ high commitment and love for children, and the Confucian concept of ‘benevolence’. It not only provides children left behind with a sense of belonging, it also alleviates their trauma/grief due to separation from their parents

Homecare and the informal information grapevine: implications for the electronic record in social care

Cooper, J. & Urquhart, C. (2008). Homecare and the informal information grapevine: implications for the electronic record in social care. Health Informatics Journal, 14(1), 59-69. Sponsorship: AHRC

Preferences for place of care and place of death among informal caregivers of the terminally ill

Objectives: (1) To determine informal caregivers perceptions about place of care and place of death; and (2) to identify variables associated with a home death among terminally ill individuals who received in-home support services in a publicly funded home care system. Participants and design: A total of 216 informal caregivers participated in a bereavement interview. Data collection included care recipient and informal caregiver characteristics, the use of and satisfaction with community services, and preferences about place of death. Results: Most caregivers reported that they and the care recipient had a preferred place of death (77 and 68%, respectively) with over 63% reporting home as the preferred place of death. Caregivers had a greater preference for an institutional death (14%) than care recipients (4.7%). While 30% of care recipients did not die in their preferred location, most caregivers (92%) felt, in retrospect, that where the care recipient died was the appropriate place of death. Most caregivers reported being satisfied with the care that was provided. The odds of dying at home were greater when the care recipient stated a preference for place of death (OR: 2.92; 95% CI: 1.25, 6.85), and the family physician made home visits during the care recipients last month of life (Univariate odds ratios (OR): 4.42; 95% CI: 1.46, 13.36). Discussion: The ethic of self-control and choice for the care recipient must be balanced with consideration for the well being of the informal caregiver and responsiveness of the community service system. © 2005 Edward Arnold (Publishers) Ltd.

The stress process in palliative cancer care:A qualitative study on informal caregiving and its implication for the delivery of care

Objective: The primary objective of this study was to examine how the comprehensive nature of the Stress Process Model could elucidate on the stressors associated with caring for a palliative cancer patient. Method: A qualitative research strategy involving home-based face-to-face interviews with 12 bereaved family caregivers was used to examine the caregiving experience. Results: The primary stressors associated with caring for the palliative cancer care patients stemmed from care recipient symptoms and personal care needs. The absence of adequate support from the formal health care delivery system was a consistent message from all participants. There was evidence of financial stress primarily associated with the purchase of private home care to supplement formal care. In contrast, the resources that family caregivers relied on to moderate the stressful effects of caregiving included extended family, friends, and neighbors. While the stress of direct caregiving was high, the study revealed that formal care was also a significant source of stress for family caregivers. Conclusion: It was concluded that an appropriately financed, integrated system of care that followed a person-centered philosophy of care would best meet the needs of the patient and his or her family. © The Author(s) 2010.