Positive and negative evaluation of caregiving among three different types of informal care relationships.
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ABSTRACT:
SUBMITTER: Broese van Groenou MI
PROVIDER: S-EPMC5549208 | biostudies-other | 2013 Dec
REPOSITORIES: biostudies-other
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Project description:BackgroundOur ageing society is putting tremendous strain on public health and welfare programs to meet the needs of ageing individuals. Promoting informal caregiving is one way for policymakers to reduce this burden. However, caregiving may be experienced as stressful and is associated with adverse health consequences. While quite a lot of research focuses on caregiving for community-dwelling older adults, little is known about informal care in institutionalised long-term care (ILTC). Therefore, the objectives of this study were: 1) to compare characteristics of informal caregivers and care receivers and caregiver outcomes - at home and in ILTC; 2) to study the association between these characteristics and positive and negative caregiver outcomes; 3) to investigate the moderating effect of the setting (at home vs. ILTC) on these associations.MethodsA cross-sectional study was conducted using the TOPICS-MDS DataSet. A total of 5197 Dutch dyads were included. The average age of the care receivers and caregivers was respectively 80.7 years and 63.2 years. Several sociodemographic, health-related and caregiving-related characteristics of care receiver and caregiver and two caregiver outcomes (i.e., subjective burden and care-related quality of life) were included in the analyses.ResultsCaregivers in both settings experienced comparable levels of subjective burden. Caregivers at home had slightly lower care-related quality of life than caregivers in ILTC. Several care receiver characteristics (i.e., male sex, married/cohabiting, more morbidities/disability, and less self-perceived health/psychological wellbeing) and several caregiver characteristics (i.e., female sex, being younger, living together with the care receiver, more objective burden, less self-perceived health, and more support) were associated with an increase in burden and/or a decrease in care-related quality of life. Some of these associations were stronger for dyads at home compared to dyads in ILTC.ConclusionsInformal caregiving does not stop with admission to an ILTC facility. Both settings need an informal caregiving policy, which is (1) tailored to the individual characteristics of care receivers and caregivers; (2) pays attention to the identified risk groups; and (3) reduces the negative caregiver outcomes and emphasizes the positive outcomes at the same time.
| S-EPMC5635563 | biostudies-literature
Project description:BackgroundFamilies and friends provide a considerable proportion of care for patients and elderly people. Caregiving can have substantial effects on caregivers' lives, health, and well-being. However, because clinical trials rarely assess these effects, no information on caregiver burden is available when evaluating the cost effectiveness of treatments.ObjectiveThis study develops an algorithm for estimating caregiver time using information that is typically available in clinical trials: the EQ-5D scores of patients and their gender.MethodsFour datasets with a total of 8012 observations of dyads of caregivers and a gamma model with a log-link estimated with the Bayesian approach were used to estimate the statistical association between patient scores on the EQ-5D-3L dimensions and the numbers of hours of care provided by caregivers during the previous week. The model predicts hours of care as mean point estimates with 95% credible intervals or entire distributions.ResultsModel predictions of hours of care based on the five EQ-5D dimensions ranged from 13.06 (12.7-14.5) h/week for female patients reporting no health problems but receiving informal care to 52.82 (39.38-66.26) for male patients with the highest level of problems on all EQ-5D dimensions.ConclusionsThe iCARE algorithm developed in this study allows researchers who only have patient-level EQ-5D data to estimate the mean hours of informal care received per week, including a 95% Bayesian credible interval. Caregiver time can be multiplied with a monetary value for caregiving, enabling the inclusion of informal care costs in economic evaluations. We recommend using the tool for samples that fall within the confidence intervals of the characteristics of our samples: men (age range 47.0-104.2 years), women (age range 55-103 years).
| S-EPMC6323105 | biostudies-literature
Project description:This article adds to the literature on the 'supply side' of informal care, by examining the socio-demographic determinants of co-resident and extra-resident informal caregiving. Results from the population survey "Care in Flanders" (N = 2826), provide evidence for a different relationship between socio-demographic characteristics and informal caregiving, according to the location of care. Women, persons living without children and married (vs. unmarried) persons are more likely to be involved in extra-resident care. Involvement in co-resident care on the other hand, is more common among persons in less good health and sharing a household with someone other than a spouse or child, mostly a parent. The relationship between socio-demographic factors and care intensity is not uniform as well: while younger age and having no paid work are related to more intensive caregiving within the household, this is not the case among extra-resident caregivers. Results may be explained by the fact of some groups having more/less access to "legitimate excuses" for providing less extra-resident care, unequal risks of being confronted with (higher) care needs, as well as selection effects. Overall, our results were weak, pointing to the weakness of a strictly supply based approach in order to predict evolutions in informal care. Future studies should be aware of the differences between co-resident and extra-resident caregiving, taking into account factors from a supply as well as a demand perspective.
| S-EPMC5547284 | biostudies-other
Project description:IntroductionAlthough physical activity (PA) is crucial for health, the literature is mixed about how individuals' PA decisions are affected by their spouses. To fill this gap, we examined the extent to which providing care for one spouse affects the PA of the other spouse among those aged 50 or older in the United States.MethodsWe analyzed 9,173 older adults living with their spouses or partners from the 2004 to 2016 waves of the Health and Retirement Study. To identify the causal effect of spousal caregiving on the PA of older adults, we estimated individual-fixed effects models using a two-stage least squared instrumental variable approach with spousal falls as our instrument. We also estimated the models by splitting the sample by gender and race/ethnicity to identify heterogeneous impacts of spousal caregiving on PA decisions among subgroups.ResultsWe found that a one percentage point increase in the probability of providing care to spouses led to an increase in the probability of initiating moderate or vigorous PA (MVPA) by 0.34-0.52 percentage points. This effect was salient, especially among female and non-Hispanic white older adults.DiscussionCaregiving experience might provide opportunities to learn about caregiving burdens and trigger an emotional response about the salience of an event (i.e., they need care in the future). Older caregivers might start MVPA in an effort to improve or maintain their health and avoid burdening their families for caregiving in the future. This study demonstrated spousal influence on PA. Instead of delivering PA-promotion information (e.g., the harm of sedentary lifestyle and benefits of regular PA) to individuals, risk communication and education efforts on PA promotion might be more effective considering the family context. Family events such as health shocks or the emergence of caregiving needs from family members provide windows of opportunities for intervening. Subgroup differences should also be considered in targeted interventions.
| S-EPMC9800888 | biostudies-literature
Project description:BackgroundTo investigate the prevalence of caregiving and its relationship with work, health and socio-economic circumstances in the Health and Employment After Fifty (HEAF) study.MethodsThe HEAF study comprises 8134 men and women aged 50-64 years recruited from 24 general practices. Socio-demographic, lifestyle and health characteristics and hours per week giving personal care were elicited by postal questionnaire. Objective clinical information about diagnoses/medications was retrieved from health records. Work-related and health risk factors for intense caring responsibilities (≥20 h/week vs. no hours) were explored using logistic regression with adjustment for age and social class.ResultsIn all, 644 (17%) men and 1153 (26%) women reported caring responsibilities, of whom 93 and 199 were intense caregivers, who were more likely to be socio-economically disadvantaged; less likely to be working and, if combining caring with working (41 men and 90 women), more likely to be part-time/working shifts, than non-carers. Men caring ≥20 h/week were more likely to have COPD and to report musculoskeletal pain, poor/fair self-rated health, depression and sleep problems. Among working women, caring ≥20 h/week was associated with these same health outcomes and also with a doctor-diagnosed mental health problem or musculoskeletal pain in the previous year.ConclusionsCaregiving is common and unequal in the HEAF cohort, with more high-intensity informal care provided by those with greater levels of socio-economic deprivation, which could affect their employment and health. Caregivers need support to lead long, healthy lives, rather than becoming care needers themselves. Employers and governments need to take caregiving into account and support it actively.
| S-EPMC7445037 | biostudies-literature
Project description:BackgroundCaregiver interventions may help improve the quality of informal care. Yet the lack of a systematic framework specifying the targets and outcomes of caregiver interventions hampers our ability to understand what has been studied, to evaluate existing programs, and to inform the design of future programs. Our goal was to develop an organizing framework detailing the components of the caregiving activities and the caregiver and care recipient outcomes that should be affected by an intervention. In so doing, we characterize what has been measured in the published literature to date and what should be measured in future studies to enable comparisons across interventions and across time.MethodsOur data set comprises 121 reports of caregiver interventions conducted in the United States and published between 2000 and 2009. We extracted information on variables that have been examined as primary and secondary outcomes. These variables were grouped into categories, which then informed the organizing framework. We calculated the frequency with which the interventions examined each framework component to identify areas about which we have the most knowledge and under-studied areas that deserve attention in future research.ResultsThe framework stipulates that caregiver interventions seek to change caregiving activities, which in turn affect caregiver and care recipient outcomes. The most frequently assessed variables have been caregiver psychological outcomes (especially depression and burden) and care recipient physical and health care use outcomes.ConclusionsBased on the organizing framework, we make three key recommendations to guide interventions and inform research and policy. First, all intervention studies should assess quality and/or quantity of caregiving activities to help understand to what extent and how well the intervention worked. Second, intervention studies should assess a broad range of caregiver and care recipient outcomes, including considering whether expanding to economic status and health care use of the caregiver can be accommodated, to ease subsequent economic evaluations of caregiving. Third, intervention studies should measure a common set of outcomes to facilitate cross-time and cross-study comparisons of effectiveness.
| S-EPMC3258201 | biostudies-literature
Project description:The purpose of this study was to describe the unique characteristics of informal hospice cancer caregiving.Researchers conducted a secondary analysis of data drawn from a randomized clinical trial of an informal hospice caregiving intervention (N?=?348). Demographic characteristics and measures of the informal caregiving experience of hospice patients and their informal caregivers were compared based on the patient's diagnosis using chi-square tests for association of categorical variables and t tests for continuous variables.Informal caregivers of cancer patients differed from their non-cancer counterparts in a number of respects including patient age, caregiver age, patient residence, relationship between patient and caregiver, amount and duration of care provided, likelihood to incur out-of-pocket expenses related to patient care, caregiver problem-solving style, and impact on caregiver daily schedule. There were no statistically significant differences between cancer and non-cancer caregivers in terms of gender, race, employment status, anxiety, and quality of life.While cancer and non-cancer caregivers are similar in many respects, a number of unique features characterize the informal hospice cancer caregiving experience. Attention to these unique features will allow hospice providers to tailor supportive care interventions to better address cancer caregivers' needs.
| S-EPMC4449794 | biostudies-literature
Project description: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.
| S-EPMC6850889 | biostudies-literature
Project description:Much attention has been paid to the effects of the COVID-19 pandemic on long-term care but the impact on informal caregivers has remained speculative. In Austria, like in other European countries, informal care is carried out overwhelmingly by (non-cohabiting) relatives. Limited care services available during the pandemic, social-distancing, increased unemployment and competing care needs within households (e.g. due to school closures) may have changed the prevalence and intensity of informal caregiving. Moreover, these changes may have increased the psychological strain experienced by caregivers. Focusing on Austria, this study aims to empirically analyse the following research questions: how have the prevalence and intensity of informal care changed due to the pandemic? How has the psychological well-being of informal caregivers been affected? We use a pre- and post-onset of the pandemic research design based on a representative survey carried out in Austria in June 2020 (N = 2000) in combination with comparable 2015 data from the European Social Survey. Findings suggest that neither prevalence nor intensity of informal care changed significantly due to the pandemic. However, the psychological well-being gap between carers and non-carers increased with the start of the pandemic, especially among men. Findings are discussed in relation to the policy measures implemented and possible policy implications for the future.Supplementary informationThe online version contains supplementary material available at 10.1007/s10433-021-00611-z.
| S-EPMC7952831 | biostudies-literature
Project description:Positive and negative parental affect influence developing parent-child attachment relationships, especially during infancy as well as children's social-emotional, academic, and behavioral functioning later in life. Increasingly, because both mothers and fathers can play central caregiving roles, the parenting qualities of both parents demand consideration. Therefore, this study investigated whether parental gender and caregiving role were associated with mothers' and fathers' positive affect and negative affect during interactions with their 4-month-old firstborn infant, while determining whether parenting stress, infant temperament, having a singleton/twin, and living in the Netherlands, France, or the United Kingdom were related to parental positive affect and negative affect. In all, 135 different-sex, same-sex male, and same-sex female couples (113 fathers and 157 mothers, comprising 147 primary, and 123 secondary caregivers) who conceived through artificial reproductive techniques were studied. The couples were videorecorded at home while in feeding, cleaning, and playing contexts to assess the levels of positive and negative parental affect. In addition, the couples completed questionnaires about their caregiving role, parenting stress, and the infants' temperament. Mixed linear models indicated that the levels of positive and negative parental affect toward the infant in all contexts were not related to parental gender, caregiving role, the interaction between parental gender and caregiving role, parenting stress, infant temperament, or singleton/twin status. However, the target parental behaviors were related to the country of origin, suggesting differences among Dutch, French, and British parents. Overall, we found no evidence that gender or caregiving roles were associated with the levels of positive and negative affect shown by the parents.
| S-EPMC10956513 | biostudies-literature