The Context of Caregiving,Kinship Tie and Health: A Comparative Study of Caregivers and Non-Caregivers

ABSTRACT

The present study aimed to compare caregiving appraisal and psychological and physical health between caregivers and non-caregivers and between wives or daughters, and to examine the associations of caregiving context variables (intensity, duration, and co-residence) with health. The sample included 201 individually matched pairs of caregivers and non-caregivers, wives and daughters of older patients discharged from the three Internal Medicine wards at Hadassah Medical Centre in Jerusalem, Israel, during 2003. Caregivers reported significantly more negative appraisal and poorer health compared with non-caregivers, wives differed from daughters in burden appraisal and had significantly poorer health. Almost no significant interactions of care-giving status by kinship tie were observed, suggesting that caregivers differed from non-caregivers irrespective of kinship tie. The multi-variate analyses of health measures by caregiving context revealed that high-intensity caregivers and co-residing daughter caregivers were most vulnerable to poor health. Health services providers need to develop ways for early identification of vulnerable caregivers, providing support and care programs and targeting resources.     

The Association Between Informal Caregiving and Poor Self-rated Health Among Ever-married Women in Japan: A Nationally Representative Survey

BackgroundThe number of people providing informal caregiving, including dual care, which is the combination of child and nursing care, is increasing. Due to the burden of multiple responsibility, dual care could negatively affect the health of informal caregivers. Previous research has not studied the effects of combining different types of informal caregiving. Therefore, we examined, among Japanese women, 1) the association between types of informal caregiving and self-rated health (SRH), and 2) difference in this association according to caregivers’ socio-economic conditions.MethodsWe analyzed the nationally representative 2013 Comprehensive Survey of Living Conditions data of 104,171 women aged 20–59 years. The odds ratios (ORs) for poor SRH by type of informal caregiving (no care, childcare, nursing care, and dual care) were estimated using logistic regression. We also conducted sub-group analyses by socio-economic conditions (equivalent monthly household expenditure and educational attainment).ResultsCompared to the no care group, the adjusted ORs for poor SRH of the childcare, nursing-care, and dual care groups were 0.92 (95% confidence interval [CI], 0.88–0.97), 1.33 (95% CI, 1.21–1.47), and 1.42 (95% CI, 1.23–1.64), respectively. There was no extra risk arisen from combining childcare and nursing care. The sub-group analyses indicated that neither household expenditure nor educational attainment affected the association between caregiving type and poor SRH.ConclusionOur study found that informal nursing care and dual care impose a health burden on female caregivers, regardless of their socio-economic conditions. This highlights the importance of addressing the effects of informal caregiving on the health of women.Key words: nursing care, childcare, dual care, self-rated health, sandwich generation     

Well-being losses by providing informal care to elderly people: Evidence from 310 caregivers in Shanghai,China

A series of policies aimed toward rational resource allocation of long-term care have being actively discussed since the launch of the social long-term care insurance in Shanghai, and it is important to take a societal perspective for informed decision-making. This study aims to explore factors that are associated with well-being of informal caregivers in Shanghai, and to provide empirical evidence of application of an established well-being valuation method to monetise informal caregivers' well-being losses in a developing country. 310 informal caregivers of applicants for social long-term care insurance in Shanghai were interviewed. Univariate and multivariate analyses were conducted to explore the associated factors with life satisfaction of the caregivers. The monetary values of an additional hour of caregiving with and without specification of care tasks were estimated by the well-being valuation method. Life satisfaction was consistently associated with monthly income, health status, and caring hours of the caregivers. The money needed to compensate one additional hour of caring per week was 12.58 CNY (0.3% of the monthly income), and 96.95 CNY (2.0% of the monthly income) for activities of daily living (ADL) tasks. Income, health status, and caregiving are significantly associated with well-being of informal caregivers. Caregivers in relatively poor health condition and/or involved in more ADL tasks should be particularly considered in supporting policies in Shanghai.     

Peer Reviewed: Lack of Choice in Caregiving Decision and Caregiver Risk of Stress,North Carolina, 2005

Introduction

An aspect of caregiving that has received little attention is the degree to which the choice to provide care affects a caregiver''s emotional well-being. We compared a population-based sample of informal caregivers who reported having a choice in caring with caregivers who did not have a choice in caring to determine the extent to which choice affects caregivers'' self-reported stress.

Methods

We identified 341 informal caregivers who completed a caregiving module appended to the 2005 North Carolina Behavioral Risk Factor Surveillance System survey. We determined participants'' self-reported stress by using a 5-point scale that was dichotomized and used adjusted binomial logistic regression to assess the risk of stress given lack of choice in caregiving.

Results

In the fully adjusted model, caregivers without a choice in caring were more than 3 times as likely to report stress as caregivers with a choice in caring. High level of burden also increased stress. Caregivers with no choice in caring were most commonly the primary caregiver of a parent.

Conclusion

Caregivers who do not have a choice in caregiving were at increased risk of stress, which may predispose them to poor health outcomes. Further investigation is needed to determine whether interventions that target caregivers without a choice in caring can reduce their levels of stress.     

Economic cost and quality of life of family caregivers of schizophrenic patients attending psychiatric hospitals in Ghana

Background

Low and middle income countries face many challenges in meeting their populations’ mental health care needs. Though family caregiving is crucial to the management of severe mental health disabilities, such as schizophrenia, the economic costs borne by family caregivers often go unnoticed. In this study, we estimated the household economic costs of schizophrenia and quality of life of family caregivers in Ghana.

Methods

We used a cost of illness analysis approach. Quality of life (QoL) was assessed using the abridged WHO Quality of Life (WHOQOL-BREF) tool. Cross-sectional data were collected from 442 caregivers of patients diagnosed with schizophrenia at least six months prior to the study and who received consultation in any of the three psychiatric hospitals in Ghana. Economic costs were categorized as direct costs (including medical and non-medical costs of seeking care), indirect costs (productivity losses to caregivers) and intangible costs (non-monetary costs such as stigma and pain). Direct costs included costs of medical supplies, consultations, and travel. Indirect costs were estimated as value of productive time lost (in hours) to primary caregivers. Intangible costs were assessed using the Zarit Burden Interview (ZBI). We employed multiple regression models to assess the covariates of costs, caregiver burden, and QoL.

Results

Total monthly cost to caregivers was US$ 273.28, on average. Key drivers of direct costs were medications (50%) and transportation (27%). Direct costs per caregiver represented 31% of the reported monthly earnings. Mean caregiver burden (measured by the ZBI) was 16.95 on a scale of 0–48, with 49% of caregivers reporting high burden. Mean QoL of caregivers was 28.2 (range: 19.6–34.8) out of 100. Better educated caregivers reported lower indirect costs and better QoL. Caregivers with higher severity of depression, anxiety and stress reported higher caregiver burden and lower QoL. Males reported better QoL.

Conclusions

These findings highlight the high household burden of caregiving for people living with schizophrenia in low income settings. Results underscore the need for policies and programs to support caregivers.

     

The desire for support and respite care: preferences of Dutch informal caregivers

Informal care is an indispensable element in the care for many patients. In order to maintain a sustainable input of informal care, it seems important to identify measures to alleviate the burden of care giving for caregivers at risk of burn out or other serious health problems, such as support and respite care. Thus, far research has focused on the burden of caregiving and on the supply of respite care. The demand side: what type of care is preferred by informal caregivers and what determines their preferences, is virtually unknown. We analysed the preferences and the underlying determinants for several types of support and respite care in a sample of 950 Dutch informal caregivers. Almost 80% of the respondents desire support or respite care in general, 42-47% would prefer more communication with other informal caregivers or more information of professional caregivers. Some time off is preferred by 40% of the respondents. The results show that caregiver characteristics, care recipient characteristics, elements of the caregiving situation and institutional variables determine the desire for support and respite care. Especially, the subjective burden of caregiving is important, whereas the number of caregiving tasks and the time invested (objective burden) hardly affect the desire for support and respite care.     

The impact of older person’s frailty on the care-related quality of life of their informal caregiver over time: results from the TOPICS-MDS project

Purpose

To examine the impact of changes in an older person’s frailty on the care-related quality of life of their informal caregiver.

Methods

Five research projects in the TOPICS-MDS database with data of both older person and informal caregiver at baseline and after 12 months follow-up were selected. Frailty was measured in five health domains (functional limitations, psychological well-being, social functioning, health-related quality of life, self-rated health). Care-related quality of life was measured with the Care-Related Quality of Life instrument (CarerQoL-7D), containing two positive (fulfilment, perceived support) and five negative dimensions (relational problems, mental health problems, physical health problems, financial problems, problems combining informal care with daily activities).

Results

660 older person/caregiver couples were included. Older persons were on average 79 (SD 6.9) years of age, and 61% was female. Caregivers were on average 65 (SD 12.6) years of age, and 68% was female. Results of the multivariable linear and logistic regression analyses showed that an increase in older person’s frailty over time was related to a lower total care-related quality of life of the caregiver, and to more mental and physical health problems, and problems with combining informal care with daily activities at follow-up. A change in the older person’s psychological well-being was most important for the caregiver’s care-related quality of life, compared to the other health domains.

Conclusions

Health professionals observing decreasing psychological well-being of an older person and increasing hours of informal care provision should be aware of the considerable problems this may bring to their informal caregiver, and should tailor interventions to support informal caregivers according to their specific needs and problems.

     

The context of caregiving, kinship tie and health: a comparative study of caregivers and non-caregivers

The present study aimed to compare caregiving appraisal and psychological and physical health between caregivers and non-caregivers and between wives or daughters, and to examine the associations of caregiving context variables (intensity, duration, and co-residence) with health. The sample included 201 individually matched pairs of caregivers and non-caregivers, wives and daughters of older patients discharged from the three Internal Medicine wards at Hadassah Medical Centre in Jerusalem, Israel, during 2003. Caregivers reported significantly more negative appraisal and poorer health compared with non-caregivers, wives differed from daughters in burden appraisal and had significantly poorer health. Almost no significant interactions of caregiving status by kinship tie were observed, suggesting that caregivers differed from non-caregivers irrespective of kinship tie. The multivariate analyses of health measures by caregiving context revealed that high-intensity caregivers and co-residing daughter caregivers were most vulnerable to poor health. Health services providers need to develop ways for early identification of vulnerable caregivers, providing support and care programs and targeting resources.     

Burden of caregivers of adult patients with schizophrenia in a predominantly African ancestry population

Purpose

There is relative inattention to caregiving burden in black populations in developing economies. This study seeks to assess the level of perceived burden and social determinants of burden of care in caregivers of adult patients with schizophrenia.

Methods

In this cross-sectional study, 115 dyads of patients with schizophrenia caregivers attending public mental health clinics were consecutively recruited. Burden of care was evaluated using the 22-item Zarit Burden Scale (maximum score, 88). Multiple linear regression model explored factors associated with caregiver burden.

Results

Caregivers were predominantly females (75.7 %) and were on average 50.8 ± 15.0 years. Most patients with schizophrenia were males (65.2 %) and were on average 43.6 ± 17.2 years old. Caregivers showed on average, mild-to-moderate burden (score, 30.0 ± 14.7; median, 28.0). There was tendency for caregivers of patients who were parents or spouses to have higher levels of burden. In multivariable analyses, higher burden of caregiving was associated with patient’s inability to perform self-care (B ± SE, 5.12 ± 1.40; p = 0.0001), closer kinship and higher numbers of psychotic episodes in previous year. The length of caregiving relationship was inversely related.

Conclusions

Poorer functioning and demographic factors were important determinants of caregiver burden. Community mental health services should include self-care interventions in rehabilitation programs in Jamaica.

     

Positive perceptions encouraging continued caregiving at home among family caregivers

PURPOSE: Few data are available on factors encouraging continued caregiving at home, especially in relation to positive perceptions of caregiving and the care burden. This study was conducted to explore this question. METHODS: We collected data from forty caregivers using Visiting nursing station, with structured interviews conducted at home. RESULTS: 1. Sixty-five percent of caregivers had positive perceptions of the worth and enjoyment of their work in caregiving. 2. Encouraging continued caregiving was associated with positive perceptions and these are relatively independent of the care burden. 3. Caregivers who had high encouraging continued caregiving were spouses or children of the clients. They had positive attitude to caregiving, an intention to use social services and satisfaction in caregiving. 4. Events from which caregivers felt worth and enjoyment in their work were improvement of client's health conditions, gratitude in client response, learning of care skills and strengthening bonds of family relationship. CONCLUSION: The findings suggest it is important to approach caregivers for the positive perceptions, rather than simply by decreasing burden.     

An Analysis of the Public Financial Support Eligibility Rule for French Dependent Elders with Alzheimer’s Disease

BackgroundIt is crucial to define health policies that target patients with the highest needs. In France, public financial support is provided to dependent patients: it can be used to finance informal care time and nonmedical care use. Eligibility for public subsidies and reimbursement of costs is associated with a specific tool: the autonomie gérontologie groupes iso-ressources (AGGIR) scale score.ObjectiveOur objective was to explore whether patients with Alzheimer’s disease who are eligible for public financial support have greater needs than do noneligible patients.MethodsUsing data from the Dépendance des patients atteints de la maladie d’Alzheimer en France study, we calculated nonmedical care expenditures (in €) using microcosting methods and informal care time demand (hours/month) using the Resource Use in Dementia questionnaire. We measured the burden associated with informal care provision with Zarit Burden Interview. We used a modified two-part model to explore the correlation between public financial support eligibility and these three variables.ResultsWe find evidence of higher informal care use, higher informal caregivers’ burden, and higher care expenditures when patients have an AGGIR scale score corresponding to public financial support eligibility.ConclusionsThe AGGIR scale is useful to target patients with the highest costs and needs. Given our results, public subsidies could be used to further sustain informal caregivers networks by financing programs dedicated to lowering informal caregivers’ burden.     

Les aidants de personnes âgées non dépendantes ont-ils des spécificités ? Étude auprès de 876 dyades personnes âgées-aidants

BackgroundThe increase in life expectancy and the aging of the population have a significant impact on the informal care provided by caregivers. Protecting caregivers against excessive burden has become a public health priority. The majority of studies target only those providing care for dependent elderly people. The aim of this study was to describe the characteristics of informal caregivers of non-dependent elderly persons, their difficulties and their level of burden.MethodsA cross-sectional study was conducted among 876 dyads: elderly people (over 70 years of age, non-dependent, living at home and having requested assistance from CARSAT South-East) and their caregivers. Two questionnaires were administered: one for the elderly (including the Frailty Group Iso-Resource Evaluation) and one for caregivers (including the Mini-Zarit Scale). A multi-component analysis and a logistic regression were performed.ResultsThe elderly were mainly women (77.6%) with a mean age of 82.2 ± 5.8 years and most were frail (94.7%). Most of the caregivers were women (64.5%) with a mean age of 62.7 ± 13.7 years. The multi-component analysis showed three categories of caregivers: spouses, children and others. Among them, spouses performed the most tasks (4.8 ± 2.6) and had the greatest burden. Caregivers in the “others” category were the least burdened and were the least impacted in their daily life. The children category caregivers were divided into two subgroups: those with characteristics similar to “others” caregivers and those with characteristics similar to “spouse” caregivers. Heavy burden was related to greater impact on daily life, poor relationships with the elderly and caregivers’ difficulties in performing their role.ConclusionThis study confirms the heterogeneous nature of informal caregiver profiles. It also shows that the characteristic features and the burden of these caregivers are similar whether the elderly person is dependent or non-dependent but frail.     

Factors associated with caregiver burden among adult (19–64 years) informal caregivers – An analysis from Dutch Municipal Health Service data

Due to the ageing population and the rising prevalence of chronic diseases, it is expected that the demand on informal caregivers will increase. Many informal caregivers experience burden, which can have negative consequences for their own health and that of the care recipient. To prevent caregiver burden, it is important to investigate factors associated with this burden. We aimed to identify factors associated with caregiver burden in adult informal caregivers. Among a sample of adult informal caregivers (n = 1,100) of the Dutch region of Zaanstreek‐Waterland, perceived caregiver burden, demographic factors, caregiving situation, health‐related factors and socio‐financial factors were measured as part of the national Health Survey in 2016. Using univariate and multivariate logistic regression analysis, for which a backward selection method was applied, associations with caregiver burden were studied. In the multivariate model, time spent providing informal care was significantly associated with perceived caregiver burden, with an odds ratio (OR) [95% confidence interval] of 7.52 [3.93–14.39] for those spending >16 hr compared to 1–2 hr on informal care. Also providing care to their child(ren) (OR: 2.55 [1.51–4.31]), poor perceived health (OR: 1.80 [1.20–2.68]) and loneliness of the caregiver (OR: 2.05 [1.41–2.99]) were significantly associated with caregiver burden. To possibly prevent and reduce informal caregiver burden, factors associated with such burden should be intervened on. As such, special attention should be paid to caregivers who provide many hours of care or provide care to their child(ren), as well as those who have a poor perceived health themselves and/or experience feelings of loneliness.     

Intention of Use of Long-Term Care Facilities and Home Support Services by Chinese-Canadian Family Caregivers

ABSTRACT

One common myth about ethno-cultural minority family caregivers is that they do not use formal services. This study examined the intention of using home support and long-term care facilities by a random sample of 339 Chinese-Canadian family caregivers, using a modified version of the Andersen-Newman service utilization model. Filial piety, caregiving burden, care receivers, and health conditions are the common predictors identified. Filial obligation is most likely manifested through facilitating the care receivers to make use of the services needed, particularly for caregivers who reported a high level of caregiving burden.     

Conspiracy mentality among informal caregivers as a risk factor for caregiver burden,mental health,perceived loneliness and social isolation during the COVID-19 pandemic: findings of a representative online study from Germany

Quality of Life Research - This study aims to analyze if and how conspiracy mentality is associated with mental health, burden and perceived social isolation and loneliness of informal caregivers...     

Economic Analysis of the Intangible Impacts of Informal Care for People with Alzheimer’s Disease and Other Mental Disorders

ObjectivesValuation of the intangible impacts of informal care remains a great challenge for economic evaluation, especially in the framework of care recipients with cognitive impairment. Our main objective was to explore the influence of intangible impacts of caring on both informal caregivers’ ability to estimate their willingness to pay (WTP) to be replaced and their WTP value.MethodsWe mapped characteristics that influence ability or inability to estimate WTP by using a multiple correspondence analysis. We ran a bivariate probit model with sample selection to further analyze the caregivers’ WTP value conditional on their ability to estimate their WTP.ResultsA distinction exists between the opportunity costs of the caring dimension and those of the intangible costs and benefits of caring. Informal caregivers’ ability to estimate WTP is negatively influenced by both intangible benefits from caring (P < 0.001) and negative intangible impacts of caring (P < 0.05). Caregivers’ WTP value is negatively associated with positive intangible impacts of informal care (P < 0.01).ConclusionsInformal caregivers’ WTP and their ability to estimate WTP are both influenced by intangible burden and benefit of caring. These results call into question the relevance of a hypothetical generalized financial compensation system as the optimal way to motivate caregivers to continue providing care.     

Caregivers' experiences with major depression concealed by physical illness in patients recruited from central Ugandan Primary Health Care Centers

In this article, we present caregivers' grapples with major depression seen among their physically ill patients. A thematic analysis of 29 in-depth caregiver interviews identified four themes: (a) caregivers' perceptions of depression, (b) barriers to caregivers' focus on depression, (c) resources and opportunities for managing depression, and (d) caregivers' perspectives on consequences of depression. Patients' physical illnesses concealed depressive episodes. Caregivers could not apply the label of "depression" but enumerated its indicative features. Stigmatization of depression, common with other mental illnesses and poverty, undermined caregiving. Vital caregiving resources included caregivers' willingness to meet patients' basic needs, facilitating patients' access to health care, informal counseling of patients, and ensuring patients' spiritual nourishment. Caregivers' management of depression in physically ill patients was expensive, but they coped; however, caregiving was burdensome. Ongoing support should be given not only to patients but caregivers, as well. To provide appropriate care, caregivers deserve sensitization about depression in the context of physical illness.     

Care for a break? An investigation of informal caregivers' attitudes toward respite care using Q-methodology

OBJECTIVE: To investigate informal caregivers' attitudes toward respite care. METHOD: Interviews with informal caregivers during open-house support groups (three) for informal caregivers, conducted late 2004 at Informal Care Support Centres in the city of Rotterdam, The Netherlands. A Q-methodological study was conducted. Informal caregivers were asked to rank-order 39 statements regarding motivation for providing informal care; supporting capacity; physical, psychological, practical, financial, relational and social obstacles; subjective burden; need for support; experienced support; and propensity and impediments to make use of respite care. In addition, respondents explained their Q-sort in writing and completed a questionnaire regarding characteristics of the caregiver, the care recipient, and the objective and subjective burden of their care giving situation. Individual Q-sorts were analysed using PQMethod 2.11 (statistical method factor analysis with a varimax rotation). Objective of Q-analysis was to reveal a limited number of corresponding ways the statements were sorted. For the factors identified, composite sorts were determined. Factors were interpreted and described using the composite sorts, differences and similarities in rank value of statements between factors and the explanations by respondents. RESULTS: We found three distinct groups of caregivers: informal caregivers who need and ask for respite care, those who need but won't ask for respite care, and those that do not need respite care. Caregivers in the first two groups experience substantial burden, while those in the third group enjoy sufficient support and appear to manage pretty well. Caregivers in the second and third group derive considerable satisfaction from care giving. On balance, caregivers in the first two groups would sometimes rather have someone else take over their task. The first group feels misunderstood and undervalued by health and welfare organisations and has problems obtaining respite. The desire for respite of caregivers in the second group is not unambiguous, affected by care recipient resistance against respite. CONCLUSIONS: Respite care programmes should target caregivers in the first two groups. Regarding the second group, effort should be directed to both caregiver and care recipient. They need to be convinced that it is in their mutual interest to make the care giving task manageable in the long run, because they report serious burden from care giving coupled with a resistance to respite care.