Formal home health care, informal care, and family decision making

We use the 1993 wave of the Assets and Health Dynamics Among the Oldest Old (AHEAD) data set to estimate a game-theoretic model of families' decisions concerning the provision of informal and formal care for elderly individuals. The outcome is the Nash equilibrium where each family member jointly determines her consumption, transfers for formal care, and allocation of time to informal care, market work, and leisure. We use the estimates to decompose the effects of adult children's opportunity costs, quality of care, and caregiving burden on their propensities to provide informal care. We also simulate the effects of a broad range of policies of current interest. © (2009) by the Economics Department of the University of Pennsylvania and the Osaka University Institute of Social and Economic Research Association.

Developing an effective electronic social care record for care in the home

Cooper, J. & Urquhart, C. (2005). Developing an effective electronic social care record for care in the home. In J. Bryant (Ed.), Current Perspectives in Healthcare Computing conference, Harrogate 21-23 March 2005 (CD-ROM). Swindon: BCS HIC Sponsorship: AHRC

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

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.

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.

Enabling older people to stay at home: The costs of substituting and supplementing care with assistive technology

A wide-ranging multiprofessional research project explored issues relating to the introduction of assistive technology into the existing homes of older people in order to provide them with the opportunity to remain at home. The financial relationship between assistive technology and packages of formal care was also explored. The costs of residential care and those of a number of packages containing differing quantities of assistive technology, formal care and informal care were compared. The analyses provide a strong financial case for substituting and/or supplementing formal care with assistive technology, even for individuals with quite disabling conditions. Although needs and hence the cost of provision rise with an increasing level of disability, the savings in care costs accrue quickly. The consideration of a variety of users with different needs and informal care provision, and occupying a very wide range of housing, leads to the conclusion that in comparison with traditional care packages, at worst, incorporating significant amounts of assistive technology into care packages is cost neutral, but that with careful specification of assistive technology major savings are feasible.

Exploring care relations in later life: disentangling notions of care and choice

The experience of later life varies widely and is often framed in terms of the active lifestyles of the Third Age and the frailty and abjection of the Fourth Age. This thesis sought to understand how the concepts of care and choice are enacted, experienced and interrelated in the context of both informal and formal care in later life and how older people themselves, their families and significant others understand and experience these concepts. The discourse of personalisation that dominates care services has led to an emphasis on individual choice, control and independence so that those in need of care are faced with what has been described as the ‘logic of choice’, a focus on individual responsibility rather than care. Adopting a Feminist Foucauldian theoretical approach and drawing on Tronto’s (1993) ethic of care, this thesis explores the experiences of older people and their informal carers through dialogical narrative analysis. The stories begin with the recognition by individuals that there is a need for care and how this need is met through negotiations with families and significant others. As needs increase the physical and logistical limits of informal care by individuals are reached, often leading to a need to ‘choose’ formal care. Rather than impacting solely on the care recipient, formal care is shown as being an experience that is shared with informal carers. Indeed, the participants depict how informal care continues alongside formal care and how the boundaries between them become blurred. I argue that a binary division between actively making choices and being a passive recipient are not appropriate to understandings of care. By disentangling the notions of care and choice this thesis explores the extent to which these concepts are relevant to the experience of older people in specific care situations.

Caregiving and its impact on families of the terminally ill

Changes in the health care system have meant that increasing numbers of the terminally ill receive the majority of their care at home. The purpose of this paper was to document patterns of informal and formal care provided to the terminally ill and assess the impact caregiving has on family members. One hundred and fifty-one family caregivers were recruited for interviews from two community-nursing agencies in an urban region of the province of Ontario, Canada. The majority of respondents 119 (79%) were the female spouses of the patient. The numbers of caregivers providing assistance in specific functional activities were: bathing, 133 (88%); mobility, 123 (81%); dressing and undressing, 114 (76%); toileting, 101 (67%), and assistance at night 97 (64%). Sixty-two (41%) respondents reported that they had been providing some form of caregiving for over one year. They also reported that physical demands in caregiving increased substantially during the last three months of the care recipient's life. As family caregivers provided more assistance in activities of daily living they were at greater risk of reporting high caregiver burden. The results of this paper identify the types of care provided by family caregivers of the terminally ill and the impact these demands have on the family caregiver.

Comparing the experiences of rural and urban family caregivers of the terminally ill

Introduction: There are many challenges in delivering rural health services; this is particularly true for the delivery of palliative care. Previous work has identified consistent themes around end-of-life care, including caregiver burden in providing care, the importance of informal care networks and barriers imposed by geography. Despite these well-known barriers, few studies have explored the experience of palliative care in rural settings. The purpose of the present study was to compare the experiences of rural family caregivers actively providing end-of-life care to the experiences of their urban counterparts. Methods: Caregivers' perceived health status, the experience of burden in caregiving, assessment of social supports and the pattern of formal care used by the terminally ill were explored using a consistent and standardized measurement approach. A cross-sectional survey study was conducted with 100 informal caregivers (44 rural, 56 urban) actively providing care to a terminally ill patient recruited from a publicly funded community agency located in northeastern Ontario, Canada. The telephone-based survey included questions assessing: (i) caregiver perceived burden (14-item instrument based on the Caregiver's Burden Scale in End-of-Life Care [CBS-EOLC]); (ii) perceived social support (modified version of the Multidimensional Scale of Perceived Social Support [MSPSS] consisting of 12 items); and (iii) functional status of the care recipient (assessed using the Eastern Collaborative Oncology Group performance scale). Results: Rural and urban caregivers were providing care to recipients with similar functional status; the majority of care recipients were either capable of all self-care or experiencing some limitation in self-care. No group differences were observed for caregiver perceived burden: both rural and urban caregivers reported low levels of burden (CBS-EOLC score of 26.5 [SD=8.1] and 25.0 [SD=9.2], respectively; p=0.41). Urban and rural caregivers also reported similarly high levels of social support (mean MSPSS total score of 4.3 [SD=0.7] and 4.1 [SD=0.8], respectively; p=0.40). Although caregivers across both settings reported using a comparable number of services (rural 4.8 [SD=1.9] vs urban 4.5 [SD=1.8]; p=0.39), the types of services used differed. Rural caregivers reported greater use of family physicians (65.1% vs 40.7%; p=0.02), emergency room visits (31.8% vs 13.0%; p=0.02) and pharmacy services (95.3% vs 70.4%; p=0.002), while urban caregivers reported greater use of caregiver respite services (29.6% vs 11.6%; p=0.03). Conclusion: Through the use of standardized tools, this study explored the experiences of rural informal family caregivers providing palliative care in contrast to the experiences of their urban counterparts. The results of the present study suggest that while there are commonalities to the caregiving experience regardless of setting, key differences also exist. Thus, location is a factor to be considered when implementing palliative care programs and services. © K Brazil, S Kaasalainen, A Williams, C Rodriguez, 2013.

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.

Can adapting the homes of older people and providing assistive technology pay its way?

Background: Adaptations and assistive technology (AT) have an important role in enabling older people to remain in their own homes. Objective: To measure the feasibility and cost of adaptations and AT, and the scope for these to substitute and supplement formal care. Design: Detailed design studies to benchmark the adaptability of 82 properties against the needs of seven notional users. Setting: Social rented housing sector. Main outcome measures: Measures of the adaptability of properties, costs of care, adaptations and AT, and relationships between these costs. Results: The adaptability of properties varies according to many design factors and the needs of occupiers. The most adaptable properties were ground floor flats and bungalows; the least were houses, maisonettes and flats in converted houses. Purpose-built sheltered properties were generally more adaptable than corresponding mainstream properties but the opposite was the case for bungalows. Adaptations and AT can substitute for and supplement formal care, and in most cases the initial investment in adaptations and AT is recouped through subsequently lower care costs within the average life expectancy of a user. Conclusion: Appropriately selected adaptations and AT can make a significant contribution to the provision of living environments which facilitate independence. They can both substitute for traditional formal care services and supplement these services in a cost-effective way.

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.

Caracterização da educação em saúde dos cuidadores formais em institutições de longa permanência para idosos de Botucatu-SP

Pós-graduação em Enfermagem (mestrado profissional) - FMB

Interação entre irmãos em situação de cuidados formais

Este trabalho teve como objetivo descrever as principais características de famílias onde os filhos mais velhos são responsabilizados pela execução das tarefas domésticas e pelo cuidado aos irmãos menores, durante a ausência dos pais. Participaram deste estudo vinte famílias residentes à Vila Paranoá, Distrito Federal, com filhos de um a dezesseis anos de idade. Os dados foram colhidos através de entrevistas e sessões de observação sistemática do comportamento em ambiente natural, realizadas durante o período de almoço. A análise se deteve na organização familiar, desempenho em tarefas domésticas e interação entre irmãos, tendo sido possível classificar as famílias em três grupos qualitativamente distintos. Os resultados são discutidos em termos da necessidade de se considerar fatores de ordem social na análise do grupo familiar.

Qualidade de vida e vulnerabilidade ao stress dos cuidadores formais de uma unidade de cuidados continuados integrados do Alentejo

Viver um maior número de anos não significa necessariamente que se viva com qualidade. Devido às alterações demográficas verificadas nos últimos anos e face ao envelhecimento progressivo da população mundial e consequente aumento da esperança média de vida, ao acréscimo das doenças crónicas e à dependência a elas associada, surgem dificuldades que os doentes e os seus cuidadores enfrentam no seu quotidiano de internamento. Assim, surgiu a necessidade de equacionar a problemática da Qualidade de Vida e a Vulnerabilidade ao Stress dos Cuidadores Formais, que diariamente trabalham numa Unidade de Cuidados Continuados Integrados do Alentejo. Este trabalho foi desenvolvido numa Unidade de Cuidados Continuados Integrados com duas valências de internamento, a Média e a Longa Duração, com os Cuidadores Formais que nele aceitaram participar. Entre eles, encontram-se as mais diversas profissões, desde Auxiliares de Lar, Enfermeiros, Fisioterapeutas, Psicólogos, Animadores Socioculturais, Técnicos de Psicomotricidade, Terapeutas da Fala e Assistentes Sociais. Todos eles representam um papel muito importante no cuidado aos seus clientes, cada um na sua área. Ao delinear este estudo, o Problema prático identificado foi se existia uma relação entre a Qualidade de Vida e a Vulnerabilidade ao Stress dos Cuidadores Formais de uma Unidade de Cuidados Continuados Integrados do Alentejo. Este estudo foi desenvolvido com uma população de 63 elementos, todos Cuidadores Formais a desempenhar funções no local de estudo já referenciado. Foi utilizada a abordagem quantitativa, que é uma metodologia de investigação de vertente epistemológica positivista. Neste estudo, foram utilizados dois instrumentos para aplicar e recolher os dados: um destinado a medir a vulnerabilidade ao stress (23 QVS) dos cuidadores formais; outro para avaliar a qualidade de vida (WHOQOL-Bref), gentilmente cedidos pelos seus autores. Os dados recolhidos, após analisados apontaram no sentido de que à medida que a qualidade de vida aumentava nos diferentes domínios, diminuía a vulnerabilidade ao stress.