Burden Of Informal Care Research Articles

Predictors of informal care burden one year after severe traumatic brain injury: Results from PariS-TBI study

Predictors of informal care burden one year after severe traumatic brain injury: Results from PariS-TBI study

Does country influence the health burden of informal care? An international comparison between Belgium and Great Britain

The aim of this paper is to determine whether the association between the provision of informal care and the health status of caregivers is affected by the country of residence. We focus on two European countries, Belgium and Great Britain, and develop a methodology, which consists of matching a subset of areas from Britain with areas in Belgium that are demographically and socioeconomically similar. These pairs of areas are then used as fixed effects in logistic regressions of poor health. This allows us to take into account the influence of area type on health and to remove the influence of these local contextual characteristics from the estimated country effects. Results suggest that, although caregiving is more prevalent in Britain, the health burden associated with heavy caregiving activities is lower in Britain than in Belgium. This may be explained by the better targeting of long-term home care policies towards more severely dependent patients in Britain than in Belgium.

Perceptions of informal care givers: Health and support services provided to people with multiple sclerosis

Purpose. About 30% of people with multiple sclerosis (MS) need some form of home care assistance, with 80% of that assistance provided by informal or unpaid care givers. This study focuses on the care givers to 530 more disabled people with MS, with the objective to learn more about informal care giving to people with greater dependency and need for assistance.Method. The data presented in this study were collected in a national survey of 530 informal care givers to people with MS who have greater levels of physical dependency.Results. About 70% of informal care givers responded that assisting the person with MS perform daily activities or personal care took up the largest amount of their care giving time. Care givers also reported a range of home and community-based services that would make care giving easier or improve the care provided. However, informal care givers generally reported low satisfaction with health insurance coverage of these services, especially coverage by health maintenance organizations and other managed care plans.Conclusions. Lack of health insurance coverage of needed home and community-based services can reduce the quality of informal care provided, as well as increase the burden of informal care giving.

Evaluation of the home help service and its impact on the informal caregiver's burden of dependent elders

This study looks at the objective and subjective characteristics of home respite service provision and its impact on the informal care burden of dependent elders. A sample of 296 dependent people and their informal caregivers was randomly selected among users and non-users of the Home Help Service (HHS) in an autonomous Spanish region (Comunidad Valenciana). An experimental design was used and a field study was carrying out that collected information on sociodemographic variables of the dependent person and his/her caregiver, HHS characteristics and the assessment of the services delivered by this resource as well as the informal caregivers'burden. The results show that the services of this resource are very limited, with low cover and frequency, and they do not address the real dependency needs in specific activities of daily living. However, users and caregivers are satisfied with this care and experience a higher quality of life since it was implemented, although the HHS does not alleviate informal caregivers' stress. These data show the need to extend the services delivered by the HHS and the duration of care, address the caregiver's need for psychological care, and look at potentially modifiable variables in the care context when designing prevention and psychosocial intervention programmes to lessen the informal caregiver's burden.

Burden of caregiving: evidence of objective burden, subjective burden, and quality of life impacts on informal caregivers of patients with rheumatoid arthritis.

To improve understanding of the nature and magnitude of the burden of informal care and also to indicate important areas for improving the current ways in which informal care is investigated. Information on objective burden (such as care tasks performed and time investment), subjective burden (using the Caregiver Reaction Assessment instrument and a self-rated burden score), and quality of life (using the EuroQoL instrument) were collected in a postal questionnaire of 153 informal caregivers who provide care for rheumatoid arthritis (RA) patients. Caregivers had been caring for the RA patients on average for >11 years, reflecting the chronic nature of RA. They provide a substantial amount of care (27.4 hours per week) and are moderately strained (24.6 on the self-rated burden scale). Caregivers are relatively healthy on average but caregivers of more severe RA patients are relatively unhealthy, which may indicate health losses due to caregiving. Informal care can be burdensome in the context of RA. More information may help assist informal caregivers in caring for RA patients and help to avoid health problems and high subjective burden.

The end of life: informal care for dying older people and its relationship to place of death.

This study examined the features of informal end-of-life care of older people living in the community and the association between informal care characteristics and dying at home. Retrospective data were obtained from interviews and self-administered questionnaires of 56 persons who had been primary caregivers of older relatives in the last three months of their lives. Results showed that informal caregivers of terminally ill older people living in the community provided a considerable amount of personal, household, and management care. Secondary informal caregivers and formal caregivers assisted resident primary caregivers less often than nonresident primary caregivers. Primary caregivers who felt less burdened, who gave personal care more intensively, and/or who were assisted by secondary caregivers, were more likely to provide informal end-of-life care at home until the time of death. Our study showed that informal care at the end of life of older people living in the community is complex, since the care required is considerable and highly varied, and involves assistance from secondary informal caregivers, formal home caregivers as well as institutional care. Burden of informal care is one of the most important factors associated with home death. More attention is needed to help ease the burden on informal caregivers, specifically with regard to resident caregivers and spouses. Since these resident caregivers were disadvantaged in several respects (i.e., health, income, assistance from other carers) compared to nonresident caregivers, interventions by formal caregivers should also be directed towards these persons, enabling them to bear the burden of end-of-life care.

El impacto de cuidar en la salud y la calidad de vida de las mujeres

Background: Informal care currently lies at the heart of the debate on welfare policies since demands for such care are increasing and the future availability of informal caregivers is uncertain. Objective: To analyze the distribution of the burden of informal care between men and women and its consequences on health and quality of life. Methods: Data from Spain and other neighboring countries obtained from several bibliographic databases, publications, and official reports were gathered. In addition, the results of a home survey conducted by the authors on 1.000 male and female informal caregivers in Andalusia (Spain) were used. Results: The studies reviewed demonstrate that women are the main providers of informal care in Spain. Most informal carers are women with a low educational level, without employment and from a low social class. The negative impact of caregiving was noted by a large proportion of carers, especially financial consequences and loss of employment and time. Informal caregiving also has a considerable impact on health, especially on psychological health, and is associated with high levels of burden. Conclusions: The present study demonstrates the need to reorganize health and social policies and to provide sufficient resources to meet the increasing need for informal care and to mitigate the impact and costs of caregiving on diverse aspects of women’s lives.

Impact of caregiving on women's health and quality of life

Informal care currently lies at the heart of the debate on welfare policies since demands for such care are increasing and the future availability of informal caregivers is uncertain. To analyze the distribution of the burden of informal care between men and women and its consequences on health and quality of life. Data from Spain and other neighboring countries obtained from several bibliographic databases, publications, and official reports were gathered. In addition, the results of a home survey conducted by the authors on 1.000 male and female informal caregivers in Andalusia (Spain) were used. The studies reviewed demonstrate that women are the main providers of informal care in Spain. Most informal carers are women with a low educational level, without employment and from a low social class. The negative impact of caregiving was noted by a large proportion of carers, especially financial consequences and loss of employment and time. Informal caregiving also has a considerable impact on health, especially on psychological health, and is associated with high levels of burden. The present study demonstrates the need to reorganize health and social policies and to provide sufficient resources to meet the increasing need for informal care and to mitigate the impact and costs of caregiving on diverse aspects of women's lives.

Informal care for stroke survivors: results from the North East Melbourne Stroke Incidence Study (NEMESIS).

Informal caregivers play an important role in the lives of stroke patients, but the cost of providing this care has not been estimated. The purpose of this study was to determine the nature and amount of informal care provided to stroke patients and to estimate the economic cost of that care. The primary caregivers of stroke patients registered in the North East Melbourne Stroke Incidence Study (NEMESIS) were interviewed at 3, 6, and 12 months after stroke, and the nature and amount of informal care provided were documented. The opportunity and replacement costs of informal care for all first-ever-in-a-lifetime strokes (excluding subarachnoid hemorrhages) that occurred in 1997 in Australia were estimated. Among 3-month stroke survivors, 74% required assistance with activities of daily living and received informal care from family or friends. Two thirds of primary caregivers were women, and most primary caregivers (>90%) provided care during family or leisure time. Total first-year caregiver time costs for all first-ever-in-a-lifetime strokes were estimated to be A$21.7 million (opportunity cost approach) or A$42.5 million (replacement cost approach), and the present values of lifetime caregiver time costs were estimated to be A$171.4 million (opportunity cost approach) or A$331.8 million (replacement cost approach). Informal care for stroke survivors represents a significant hidden cost to Australian society. Because our community is rapidly aging, this informal care burden may increase significantly in the future.