To accurately capture informal care in healthcare evaluations, rigorous approaches are required to measure and value this important care component. In this systematic review and meta-analysis, we ...intended to summarize the current methods of measuring and valuing informal care costs in healthcare evaluations (full and partial healthcare evaluations, including cost of illness and cost analysis) in stroke.
A systematic search was conducted in Medline, Embase, EconLIT, and CINAHL. We used EndNote 20, Research Screener, and Covidence platforms for screening and data extraction. A meta-analysis was performed on informal care hours, and a sub-group meta-analysis was conducted based on stroke severity.
A total of 31 articles were included in the qualitative synthesis. There was variation among the studies in the informal care measurement and valuation approaches. The meta-analysis of studies where data on informal care hours were available showed an estimate of informal care hours of 25.76 per week (95% Confidence interval CI: 13.36-38.16 with a high heterogeneity (I2=99.97%). The overall risk of bias in the studies was assessed as low.
Standardizing the measurement and valuation of informal care costs is essential for improving the consistency and comparability of economic evaluations. Pilot studies that incorporate standardized informal care cost valuation methods can help identify any practical challenges and capture the impact of informal care more accurately.
•There is a variation in methods used to measure and value informal care cost•Although this review is conducted for stroke, the insights from this review may have relevance in other chronic disease•Standardized methods can help identify practical challenges and improve techniques of informal care measurement and valuation
Full text
Available for:
GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, SBMB, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Informal caregiving constitutes the mainstay of a society's care supply. Motivations for caring and continuing to provide care are crucial to understanding the nature of caregiver experiences and ...their relationship with the person/people they support. This systematic review of qualitative evidence examines determinants of motivations and willingness to provide informal care. One hundred and five qualitative studies published before August 2019 and fitting the inclusion criteria were identified, 84 of them pertaining to cultural and societal motivations for caregiving. Grounded theory-based, thematic synthesis was conducted. Cultural and societal factors strongly underpinned motivations and willingness for informal caregiving. The main cultural motives for caregiving were cultural values and beliefs encompassing the ethnocultural context of the caregiving role, culture-specific norms, cultural and spiritual beliefs, illness beliefs and socialisation. Societal norms and perceived expectations, such as gendered roles, norms and expectations of caregiving, and perceptions of health and social care services further shaped caregiver motivations and willingness to provide care. These meta-synthesis findings contribute towards novel understandings about the cultural and societal aspects shaping informal care provision. These findings bear important implications for theory, research, policy and practice; all of which contributing to the issue of the sustainability of informal care from a 'macro' perspective.
Full text
Available for:
BFBNIB, IZUM, KILJ, NUK, PILJ, PNG, SAZU, UL, UM, UPUK
Informal caregivers often report exhaustion when providing care, which can be related to forms of burnout. Yet, there is no systematic inventory of studies comparing caregivers and non-caregivers in ...terms of burnout. For the present meta-analysis, studies comparing burnout in informal caregivers and non-caregivers were screened and included. Two categories of studies were found: those on family care burnout (spousal or parental burnout) and those on professional burnout (mostly in healthcare). For family care burnout studies, informal caregivers reported more emotional exhaustion, and, to a lesser extent, depersonalization and reduced personal accomplishment than non-caregivers. For studies on professional burnout, workers providing informal care also reported more emotional exhaustion than workers not providing such a care. Overall, the results indicate that providing informal care represents a risk for role burnout. In family care burnout studies, these results confirm the assumption that providing informal care adds extra weight on the individuals' shoulders. In professional burnout, these results support the role accumulation theory, pointing that an additional weight in one's role, i.e., providing informal care, has an impact on another role, work. This work emphasizes the consideration of the multifaceted impact that the caregiving role can have on the individual.
Full text
Available for:
DOBA, FSPLJ, IJS, IZUM, KILJ, NUK, OILJ, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK, VSZLJ
Abstract
Objective
Informal care, the provision of unpaid care to dependent friends or family members, is often associated with physical and mental health effects. As some individuals are more likely ...to provide caregiving tasks than others, estimating the causal impact of caregiving is difficult. This systematic literature review provides an overview of all studies aimed at estimating the causal effect of informal caregiving on the health of various subgroups of caregivers.
Methodology
A structured literature search, following PRISMA guidelines, was conducted in 4 databases. Three independent researchers assessed studies for eligibility based on predefined criteria. Results from the studies included in the review were summarized in a predefined extraction form and synthesized narratively.
Results
The systematic search yielded a total of 1,331 articles of which 15 are included for synthesis. The studies under review show that there is evidence of a negative impact of caregiving on the mental and physical health of the informal caregiver. The presence and intensity of these health effects strongly differ per subgroup of caregivers. Especially female, and married caregivers, and those providing intensive care appear to incur negative health effects from caregiving.
Conclusion
The findings emphasize the need for targeted interventions aimed at reducing the negative impact of caregiving among different subgroups. As the strength and presence of the caregiving effect differ between subgroups of caregivers, policymakers should specifically target those caregivers that experience the largest health effect of informal caregiving.
This study examines how attitudes towards filial responsibility (AFR) have changed in 11 European countries between 2001 and 2017, based on data from the International Social Survey Programme. These ...countries include various types of welfare states and family traditions. The study also analyses the change in AFR according to the respondents’ gender and age. The findings indicate that in 2017, individuals reported lower filial responsibility than in 2001, with the exception of Great Britain, where the AFR increased. The most substantial decreases in AFR were observed in Hungary, France, Denmark, and Finland. This negative shift is visible in both genders and all age groups, particularly late middle-aged women. However, despite the varying intensity of AFR change, it was challenging to identify clear patterns in the variations between countries. These results highlight potential negative effects on political proposals for long-term care for older adults supported by younger generations.
For black caregivers:•Men were more likely to have lower cognition.•Caregivers without a college education were more likely to have lower cognition.•Lower positive appraisal of caregiving was ...associated with normal cognition.•Sharing a dwelling with the care recipient may be protective for caregiver cognition.•Stress from individual and institutional racism may be related to caregiver cognition.
This study investigated factors associated with cognitive performance among Black caregivers of persons living with two chronic conditions: dementia or cancer. Fifty-six Black caregivers of people living with dementia or cancer were recruited from clinic and community sources. Variables measured included: depression, anxiety, stress, sleep, fatigue, and caregiver burden. Cognitive performance was assessed using the Montreal Cognitive Assessment (MoCA). Descriptive statistics and non-parametric analyses were conducted to identify factors related to MoCA scores. Caregivers were 58.3 years of age and predominantly female. The average MoCA score was 25.23. Gender and education, along with positive appraisal of caregiving were significantly associated with cognitive performance. Several other factors approached significance including cohabitation with the care recipient, fatigue, and stress due to perceived individual and institutional racism. Our findings suggest several factors that warrant further investigation for understanding the relationship between caregiving and cognitive performance in Black caregivers of people living with cancer or dementia.
Full text
Available for:
GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Australia has been less impacted by COVID-19 than most other countries, partly due to strong preventive responses by government. While these measures have resulted in lower rates of infection, family ...and friend carers have been disproportionately affected by public health orders. The
heightened risk of transmission to vulnerable populations, combined with the impact of economic uncertainty, unclear government communication, significant restrictions on movement and personal contact, and the reduction in formal support services, have highlighted pre-existing, systemic shortcomings
in support for carers. The COVID-19 pandemic left many carers more stressed, isolated and worse off financially.
This research note presents the findings of changes in the gender gap in informal care provision and caregiver burden during the Spring 2020 COVID‐19 lockdown in the Netherlands. Government measures ...in response to the pandemic strongly restricted informal caregivers in providing help and care to persons with health‐related needs. At the same time, formal care was scaled back and informal caregivers' urge to help their loved ones was likely higher than before the pandemic. Generally, women pick up a larger share of informal care and experience more caregiver burden. We assessed whether the COVID‐19 pandemic affected the gender gaps in informal caregiving by analyzing unique data on Dutch informal caregivers (N = 1672 caregiving situations in 1196 respondents). Results showed that women, compared to men, were more likely to have stopped and reduced caregiving, but also to have cared more during the pandemic. Moreover, based on longitudinally comparing levels during and before the lockdown, we found that the gender gap in caregiver burden narrowed down, especially because burden decreased for women. This means that the caregiver burden was more equally distributed among women and men during the Spring 2020 COVID‐19 lockdown than before.
Full text
Available for:
BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, UILJ, UKNU, UL, UM, UPUK
Countries around the world face increasing demand for long-term care in the older population. Yet, the longitudinal patterns of long-term care use and the underlying predictors have not been well ...understood, which impedes efficient care planning and timely service delivery. This study investigates the trajectories of informal care intensity in the oldest-old Chinese population and identifies the most important predictors of care trajectories. The data come from four waves of the Chinese Longitudinal Health Longevity Survey (CLHLS 2005–2014, N = 10,292). We conducted the latent trajectory analysis (LTA) to cluster people's diverse trajectories into a finite number of groups. We built machine learning (ML) models to predict people's care trajectories and ranked the relative importance of the predictors. The LTA identified three distinct trajectories of informal care intensity: the low, increased and high intensity trajectories. Care intensity increases in all three trajectories. Older people with more severe limitations, females, urban residents, people with a higher income, and people with more daughters in the first wave are more likely to follow the increased or high intensity trajectory rather than the low intensity trajectory in the following decade. The random forest classifier has the best overall prediction performance among the four machine learning models. Its prediction accuracy can be further improved via model optimisation. Oldest-old people in China follow divergent trajectories of care utilisation, and inequality of informal care intensity is discernible across time, demonstrating the need for timely and targeted delivery of government support to those who need it most. Accurate prediction of care trajectories will be of great value to policy makers and practitioners in relation to the planning of personalised care and the equitable allocation of care resources.
•Latent trajectory analysis (LTA) identified three trajectories of care intensity.•Intensity of informal care for older people increased in all three trajectories.•The random forests classifier has the best prediction performance.•Accurate prediction of care trajectories informs timely and equitable care provision.
Full text
Available for:
GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Background:
Family members provide vital care at end of life, enabling patients to remain at home. Such informal care contributes significantly to the economy while supporting patients’ preferences ...and government policy. However, the value of care-givers’ contributions is often underestimated or overlooked in evaluations. Without information on the activities and expenditures involved in informal care-giving, it is impossible to provide an accurate assessment of carers’ contribution to end-of-life care.
Aim:
The aim of this study was to investigate the contributions and expenditure of informal, family care-giving in end-of-life cancer care.
Design:
A national census survey of English cancer carers was conducted. Survey packs were mailed to 5271 people who registered the death of a relative to cancer during 1–16 May 2015. Data were collected on decedents’ health and situation, care support given, financial expenditure resulting from care, carer well-being and general background information.
Results:
In all, 1504 completed surveys were returned (28.5%). Over 90% of respondents reported spending time on care-giving in the last 3 months of the decedent’s life, contributing a median 69 h 30 min of care-giving each week. Those who reported details of expenditure (72.5%) spent a median £370 in the last 3 months of the decedent’s life.
Conclusion:
Carers contribute a great deal of time and money for day-to-day support and care of patients. This study has yielded a unique, population-level data set of end-of-life care-giving and future analyses will provide estimates of the economic value of family care-givers’ contributions.
Full text
Available for:
NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
PDF
