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Informal care

Gaps in end-of-life care and lack of support for family carers in Poland and Central Eastern Europe

The growth of life expectancy in Central Eastern Europe and increase in the number of older people in that region are the consequences of changes in the 1990s period, connected to transition from the communism into a market economy. Central Eastern Europe is already facing consequences of fast ageing and insufficient development of state health care and social services. Those result in gaps in the provision of end-of-life care and overburden of family caregivers.

Fri, 07/23/2021 - 16:10

Validation of the Hungarian version of the CarerQol instrument in informal caregivers: results from a cross-sectional survey among the general population in Hungary

Purpose: The CarerQol instrument has been designed and validated as an instrument able to measure both the positive and the negative impacts of caregiving on the quality of life of informal caregivers (CarerQol-7D), as well as their general happiness (CarerQol-VAS). The aim of this study was to assess the construct validity of the CarerQol in the Hungarian context.; Methods: The CarerQol was translated into Hungarian.

Fri, 07/23/2021 - 15:37

The caregiving bind: Concealing the demands of informal care can undermine the caregiving identity

Disagreements and misunderstandings between informal caregivers and care-receivers have been widely reported, but the causes are unclear. The present article compares the views of people with acquired brain injury and their main informal caregivers (28 dyads, n = 56). First, we report a quantitative analysis finding that the majority of disagreements were about caregivers' identity. Caregivers saw themselves as less confident, less intelligent, more embarrassed, more independent and more overprotective than care-receivers rated them to be.

Tue, 06/15/2021 - 15:22

Is informal caregiving at odds with optimal health behaviour? A cross-sectional analysis in the caregiving partners of persons with spinal cord injury

Background: The intricate relationship between caregiving and health may to some extent be determined by the burden and restrictions imposed on informal caregivers, and the impact these experiences have on health behaviours. It is assumed that a positive caregiver experience leads to health promoting behaviours in caregivers, whereas a negative experience induces the opposite.

Mon, 04/05/2021 - 16:26

Important components for Dutch in-home care based on qualitative interviews with persons with dementia and informal caregivers

Background Dementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs.

Mon, 04/05/2021 - 15:25

Validity and Responsiveness of Preference-Based Quality-of-Life Measures in Informal Carers: A Comparison of 5 Measures Across 4 Conditions

Objectives: Carer quality-of-life (QoL) effects are recommended for inclusion in economic evaluations, but little is known about the relative performance of different types of QoL measures with carers. This study evaluated the validity and responsiveness of 3 care-related QoL measures (the Carer Experience Scale [CES], CarerQoL-7D, and ASCOT-Carer), 1 health-related QoL measure (the EQ-5D-5L), and 1 generic QoL measure (the ICECAP-A).

Wed, 01/20/2021 - 11:58

Time to care? The effects of retirement on informal care provision

This paper analyzes the impact of women's retirement on their informal care provision. Using SOEP data, we address fundamental endogeneity problems by exploiting variation in the German pension system in two complementary ways. We find a significant effect of retirement on informal care provision, when using early retirement age thresholds as instruments. Heterogeneity analyses confirm the underlying behavioral mechanism, a time conflict between labor supply and informal care.

Fri, 01/15/2021 - 12:51

Relationship between Distress Related to Caregiver Burden and Physical Activity in Informal Caregivers of Patients with COPD

Chronic obstructive pulmonary disease (COPD) can lead to increased dependence on the informal caregiver and, consequently, to distress associated with caregiving burden. In the general population, higher levels of physical activity (PA) are related to lower distress levels; however, this relationship has been scarcely studied in COPD.

Mon, 12/14/2020 - 10:52

Myocardial infarction: Economic, health, and social impacts on informal caregivers

Objectives: The aim of the study was to measure the economic impact of informal care (IC) on caregivers assisting myocardial infarction (MI) survivors in France. Health and social impacts were also described. Methods: Data from the prospective 2008 Health and Disabilities Households Survey (Enquête Handicap-Santé), carried out among the French general population, were used to obtain information about patients with MI and their informal caregivers.

Fri, 12/11/2020 - 18:24

Measuring Carer Outcomes in an Economic Evaluation: A Content Comparison of the Adult Social Care Outcomes Toolkit for Carers, Carer Experience Scale, and Care-Related Quality of Life Using Exploratory Factor Analysis

Background. To incorporate the spillover effects experienced by carers providing informal care in health policy decisions, new carer-related preference-based measures have been developed for use in economic evaluation, which include the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer), Carer Experience Scale (CES), and Care-Related Quality of Life (CarerQoL). The aim of this study was to investigate the extent to which these 3 instruments measure complementary or overlapping constructs. Methods.

Fri, 12/11/2020 - 17:59

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