Negative and Positive Caregiving Experiences: A Closer Look at the Intersection of Gender and Relationship

Using data from the 2004 wave of the National Long‐Term Care Survey, we examined how negative and positive caregiving experiences differ by caregivers' gender and relationship to care recipients. We further considered how their caregiving experiences are affected by caregivers' demographic characteristics, care recipients' problem behavior and dependency, caregivers' involvement, reciprocal help from care recipients, and social support available for caregivers. We found that female and adult‐child caregivers, in general, reported having had more negative experiences than male and spouse caregivers, respectively. Wife caregivers were least likely to report positive experiences. We also found different risk factors for negative and positive caregiving experiences, and these factors varied depending on caregivers' gender and relationship to the care recipient. The findings underscore the heterogeneity of caregiving experiences. To sustain informal care, state and local agencies need to tailor services to wife, husband, daughter, and son caregivers' unique needs.     

Predictors of anxiety in family caregivers*

The present study builds on the foundation laid in caring for family caregivers of dependent elderly persons through psycho-educational support. After briefly tracing the development of the programme and its associated evaluation research, an investigation of sociodemographic variables as predictors of caregivers' anxiety is described. In line with previous literature on caregiver stress, it was found that 461 caregivers' pretreatment negative emotional responses were closely related to high levels of anxiety in their particular situations. Less expected were the findings that length of caregiving, relationship to caregiver of care-recipient, residential arrangements, age of caregiver and disability of care-recipient did not contribute significantly to the regression analysis. Even more remarkable was the finding that the strongest predictors of anxiety were the combined factors of masculine gender, unemployment and involvement in fewer than the median number of caregiving responsibilities. Implications and recommendations for research and practice are drawn.     

Caregiver Assessment of Support Need,Reaction to Care,and Assessment of Depression

The aims of this study were to: (a) identify New Zealand informal carers' support needs; (b) assess caregivers' depression; and (c) assess positive and negative aspects of caregiving. A sample of 287 carers from throughout New Zealand was recruited by advertisements in carer support organizations literature, in 2008. Data were collected using Centre for Epidemiologic Short Depression scale (CES-D10), Caregivers Reaction Assessment scale (CRA), and open-ended questions. Carer burden was significant (p ≤ .01) in the 60 to 69 age group. The relationship between CRA and CES-D10 in carers in the 50 to 59, 60 to 69 carer age groups; and 0 to 29, 60 to 69, 70 to 79, and 80 plus care recipient age groups were also significant. Mean burden was highest in the 50 to 59 age group (77/120) with depression mean highest in the 30 to 39 age group (14/30). Carers commonly discussed the adverse effects of caregiving on identity, lifestyle, health, and financial situation. Lack of information, poor respite care, and combining work with care were major frustrations. If the government wishes to successfully pursue initiatives allowing people to remain at home, more resources are needed to adequately support carers.     

Relationship Between Perceived Burden of Caring for a Family Member with Alzheimer's Disease and Decreased Participation in Meaningful Activities

ABSTRACT

Objective: This study examines the relationship between caring for a family member with Alzheimer's disease (AD) and activity participation. Method: A 34-item caregiver questionnaire including items measuring the perceived caregiving burden and the level of participation in meaningful activities was completed by 54 caregivers. Results: A significant negative correlation (r = ?.56, p <.0001) was demonstrated between the two variables: caregiving burden and participation in meaningful activities. Discussion and Conclusion: An increased perception of burden is related to a decrease of participation in desired occupations among family caregivers of people with AD. The findings can help occupational therapy practitioners develop interventions aiming at improving caregivers' quality of life through enhancing opportunities for meaningful occupations.     

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.     

Coping strategies, care manager support and mental health outcome among Japanese family caregivers

Coping and social support are regarded as major modifiers of the caregiving stress and negative mental health effects experienced by caregivers. Under Japan's Long-term Care Insurance (LTCI) system, care managers have played a major role in providing psychosocial support for family caregivers while coordinating formal and informal care resources for elderly people. However, since the launch of the LTCI system in 2000, no evaluation has examined the role care managers play in buffering the negative effects of the caregiver burden among family caregivers in Japan. This study examined the direct and buffering effects of stress-coping strategies and care manager support on caregiver burden and depression among Japanese family caregivers (n = 371) caring for community-dwelling persons aged 65 or over who were having difficulties with the activities of daily living. A self-administrated questionnaire survey was conducted between February and March 2005 in a rural suburb in south-western Japan. Hierarchical regression analyses revealed the following. (i) Coping strategies and 'social talk' by care managers had direct effects on caregiver burden and depression. (ii) 'Avoidant' coping and 'social talk' by care managers had buffering effects on the care needs-depression relationship. (iii) 'Information giving' by care managers had no significant direct effect, but it had a negative effect on the care needs-depression relationship. Overall, results concerning 'approaching' coping were in line with those of previous studies, while findings concerning 'avoidant' coping were not consistent with findings in Western countries. The type of care manager support appeared to have a variable influence on caregiver burden and depression.     

The direct and indirect financial costs of informal cancer care: A scoping review

Informal caregivers are the primary source of support for cancer patients, providing assistance with household tasks, medical care and emotional support. These responsibilities often result in high levels of emotional, physical, social and financial burden for the caregiver. The aim of this study was to perform a scoping review exploring what is known regarding the financial costs experienced by caregivers and identify gaps in the literature. Seven databases were searched for articles published between May 2008 and May 2018 related to direct and indirect costs of informal cancer care. Included articles reported on the costs incurred by cancer caregivers as a dollar value, relied on caregiver‐reported costs and were peer reviewed. A total of 19 studies met the inclusion criteria. These studies reported out of pocket costs? opportunity costs of informal care time and caregiver time loss from paid employment. Care time was the largest source of cancer caregiver costs, averaging $4,809 per month when valued using the proxy good method or $2,877 per month when the opportunity cost approach was used. Caregiver costs were highest when the care recipient was in the palliative phase of the disease. There was an absence of literature reporting costs for cancer caregivers in low and middle income countries and none of the included studies considered costs related to the caregivers' medical expenditures. There were many challenges when comparing the costs across studies due to variations in the type of expenses reported and the methods used to value expenses. Quantifying the financial costs associated with being an informal caregiver can facilitate the communication of the financial burden caregivers experience, potentially spurring the development of policies and programs to reduce their financial burden and better support cancer caregivers.     

Training Needs Among Family Caregivers Assisting During Home Health,as Identified by Home Health Clinicians

ObjectivesTo estimate the proportion of family caregivers assisting older adults during Medicare home health who have an identified need for activity-specific training and identify characteristics associated with caregiver training needs.DesignNationally representative retrospective cohort study.Setting and Participants1758 (weighted n = 8,477,990) Medicare beneficiaries who participated in the National Health and Aging Trends Study (NHATS) and received Medicare-funded home health care between 2011 and 2016.MeasuresOlder adult and caregiving network characteristics before home health (sociodemographic factors, caregiver assistance, older adult health and function) were drawn from NHATS; characteristics during home health (family caregiver training needs, older adult health and function) were drawn from home health patient assessments. Weighted proportions of family caregivers with an identified need for activity-specific training were estimated. Weighted, multivariable logistic regressions modeled associations between older adult/caregiving network characteristics and family caregivers’ identified activity-specific training needs during home health.ResultsMore than 1 in 3 (35.7%) family caregivers assisting older adults during Medicare home health had an identified training need with at least 1 caregiving activity. Rates of need for training varied widely, from 8.6% among caregivers helping with advocacy to 48.2% among caregivers helping with medical procedures. In weighted analyses that adjusted for older adults’ health and function, family caregivers were less likely to have identified training needs when assisting older adults with ongoing disability or who received caregiver assistance before home health admission.Conclusions and ImplicationsFindings highlight the pervasiveness of family caregivers' training needs, particularly with medically oriented activities, and indicate that escalations in older adults’ care needs are linked to caregiver training needs. Therefore, transitions of care may present critical opportunities to connect family caregivers with training resources.     

The Continuation of Home Care to Severely Impaired Children and Aged in Israel:

There are a growing number of children and aged with severe chronic health problems in the community. Mothers become the prime caregivers to these children and aging spouses or middle-aged offspring the caregivers to these aged. The services offered to these families are determined by economic and social conditions, as well as changing fashions, rather than knowledge of the patients' and caregivers' needs. The purpose of this study was to assess the impact of homecare upon families caring for children versus those caring for aged and these families' attitudes toward continuation of home care versus institutionalization. The families included in the study were drawn randomly from the case load of community nurses in central Israel. In-depth interviews were conducted with 92 families of severely impaired children and 181 families of severely impaired adults and aged in their homes. While the majority of both populations carry a heavy burden of caregiving over years. they also receive gratification from their ability to care for their patient at home. There is little difference between those caring for children and those caring for adults in their attitudes toward continuation of home care. Mental rather than physical impairment, a deteriorating illness trajectory; depression, aggression and tension of the care-giver, the absence of sufficient social support and home care services correspond with negative feelings toward continued home care. The perceived impact of caregiving responsibilities upon the caregivers' lives, the ability to tolerate and manage symptoms and above all the quality of the patient-caregiver relationship influenced the caregivers' attitudes toward institutionalization in both populations. Family attitude toward continued homecare and institutionalization of children and adults are compared and the needs for services discussed.     

Caregiving Experiences and Health Conditions of Women Veteran and Non-Veteran Caregivers

BackgroundUnique experiences, for example, trauma, of women veteran caregivers may create differences in the caregiving experience and may be associated with health concerns. We examined caregiving factors and health concerns in women veteran caregivers compared to non-veteran women (civilian) caregivers, and identified variables associated with being a woman veteran caregiver.MethodsWe conducted secondary data analyses using data from a multistate survey to examine sociodemographics, the caregiver experience (relationship to recipient, duration as caregiver, hours of care provided, area help is needed, and greatest difficulty faced as a caregiver); emotional support; life satisfaction; lifestyle behaviors; general, physical, and mental health; and chronic conditions in women informal caregivers.FindingsOf women caregivers, more veteran caregivers provided activities of daily living (ADL) help (33%) than non-veteran caregivers (21%; p = .02). There were no differences in years as a caregiver, hours of care provided, or the relationship to the recipient. Poor sleep and poor mental health were experienced by more women veteran caregivers (vs. non-veteran), but physical health, general health, and chronic condition prevalence did not differ. Women veteran caregivers had twofold greater odds of being Black, never married, college educated, and providing ADL assistance. Odds of obesity were lower for women veteran caregivers relative to other women caregivers.ConclusionsWomen veteran caregivers experience health concerns, including sleeplessness, poor mental health, and some chronic conditions. Our cohort were young women, yet had concerns that may be exacerbated by being a veteran and assuming a caregiver role. Comprehensive services to support their needs as veteran patients and as caregivers are needed.     

Perceptions of caregiver distress,health behaviors,and provider health-promoting communication and their relationship to stress management in MS caregivers

This study applied the Stress/Health Model to examine a novel approach for promoting stress management among 67 caregivers of persons with multiple sclerosis, who often face unique caregiving challenges. Hierarchical regressions indicated that caregiver distress (i.e., emotional burden) and engagement in other health-promoting activities (i.e., controlling alcohol use) were the best predictors of caregiver stress management. Communication with the MS care recipient’s health provider about caregiver engagement in health-promoting activities was associated with caregiver stress management, but not significantly more so than explained by the other factors (i.e., caregiver distress and engagement in health-promoting behaviors). A more controlled study would be indicated to further explain how to encourage, within the medical setting, caregiver engagement in self-care activities.     

Analysis of burden in caregivers of people with Alzheimer’s disease using self-report and supervision hours

Objectives

This study aimed to describe the baseline characteristics of informal carers of community-living Alzheimer’s disease (AD) patients by AD severity group and to identify factors associated with two measures of caregiver burden.

Design and setting

GERAS is a prospective observational study in France, Germany, and the UK, designed to assess costs and resource use associated with AD, for patients and their caregivers, stratified by disease severity.

Participants

1497 community-dwelling AD patients and their primary caregivers.

Measurements

Subjective caregiver burden assessed using the Zarit Burden Interview [ZBI] and time spent supervising patients (an objective measure of burden recorded using the Resource Utilization in Dementia instrument) during the month before the baseline visit were recorded. Separate multiple linear regression analyses using ZBI total score and caregiver supervision time as dependent variables were performed to identify patient and caregiver factors independently associated with caregiver burden.

Results

Increasing AD severity was associated with both subjective caregiver burden (ZBI total score) and overall caregiver time, which includes supervision time (both p<0.001, ANOVA). Better patient functioning (on instrumental activities of daily living) was independently associated with both a lower ZBI total score and less supervision time, whereas higher levels of caregiver distress due to patient behavior were associated with greater caregiver burden. Other factors independently associated with an increased ZBI total score included younger caregiver age, caregiver self-reported depression, caring for a male patient, and longer time since AD diagnosis. Caregivers living with the patient, being a male caregiver, patient living in a rural location, higher patient behavioral problem subdomain scores for apathy and psychosis, more patient emergency room visits, not receiving food delivery and receiving financial support for caregiving were all associated with greater caregiver supervision time.

Conclusion

Our results show that subjective caregiver burden and caregiver time are influenced by different factors, reinforcing the need to consider both aspects of caregiving when trying to minimize the burden of AD. However, interventions that minimize caregiver distress and improve patient functioning may impact on both subjective and objective burden.     

Health literacy of caregivers of adult care recipients: A systematic scoping review

Caregivers play a vital role in providing support to adults with a chronic condition, or cognitive or physical impairment. Low health literacy in caregivers has the potential to impact adequate care provision, and consequently, care recipient health outcomes. The aim of the study was to systematically review literature related to health literacy of caregivers of adult care recipients, and examine its relationship with care recipient, and caregiver, health outcomes. Electronic databases were searched for relevant English‐language publications that assessed health literacy in caregivers. Included studies were abstracted into evidence tables and assessed using an eight‐item quality scale. The search identified 2717 new titles and abstracts, with 67 shortlisted for full review. Twelve papers from 2003 to 2015 met the inclusion criteria. The prevalence of limited health literacy in caregivers ranged from 0% to 52.5% depending on the measure and cut‐off criteria used. Associations were found between low caregiver health literacy and (i) poorer care recipient self‐management behaviours; (ii) increased care recipient use of health services; and (iii) increased caregiver burden. The quality of the studies ranged from fair to excellent. Low health literacy in caregivers differed depending on the measures and scoring criteria used. Evidence to support the relationship between caregiver health literacy and care recipient, and caregiver health outcomes was limited to single studies. Recommendations for further research include: the development of caregiver health literacy measures across different populations; examination of associations between caregiver health literacy and care recipient outcomes; and the development of interventions designed to improve caregiver health literacy.     

Burden of Providing Informal Care for Patients with Atrial Fibrillation

ObjectivesPatients with atrial fibrillation (AF) have rapid and irregular heart rates, increasing the risk of comorbidities and mortality. Next to formal medical care, many patients receive informal care from their social environment. The objective of this study was to examine the well-being and economic burden of providing informal care to patients with AF in the UK, Italy, and Germany.MethodsCaregivers of patients with AF completed an online survey based on the iMTA Valuation of Informal Care Questionnaire, with questions about their caregiving situation, perceived burden of caregiving, and absence from work due to health problems resulting from caregiving. Care-related quality-of-life utilities were calculated using the Care-related Quality of Life instrument and associated tariffs. Societal costs of caregiving were calculated based on the proxy good method.ResultsA total of 585 caregivers participated in this study. On average, caregivers provided 33 hours of informal care per week to patients (SD 29 hours). On a scale from 0 to 10, their self-rated burden was 5.4. The average Care-related Quality of Life utility was 72. Caregivers primarily indicated problems with daily activities, mental health, and physical health. Still, the vast majority of caregivers (87%) derived fulfillment from providing care. Weekly societal costs of caregiving were on average €636. Comorbidities contributed substantially to the caregiver time and burden.ConclusionsCaring for a patient with AF is associated with substantial objective and subjective burden, but also provides fulfillment from being able to care for a loved one.     

The Costs and Rewards of Caregiving Among Aging Spouses and Adult Children*

Using a social exchange perspective and data from a national sample of 978 spouse and child caregivers of older family members, this study assessed the association between caregiver relationship and gender and the costs and rewards of caregiving. We also evaluated whether relationship and gender moderate the effects of helpfulness on caregiver costs and rewards. Results supported the hypotheses that women, whether wives or daughters, experience more caregiving costs than do men, and that adult children experience more rewards than do spousal caregivers. In addition, care recipient helpfulness was associated with greater increases in rewards for spousal caregivers than for adult children caregivers.     

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.     

Process utility from providing informal care: the benefit of caring

Though economics is usually outcome-oriented, it is often argued that processes matter as well. Utility is not only derived from outcomes, but also from the way this outcome is accomplished. Providing care on a voluntary basis may especially be associated with such process utility. In this paper, we discuss the process utility from providing informal care. We test the hypothesis that informal caregivers derive utility not only from the outcome of informal care, i.e. that the patient is adequately cared for, but also from the process of providing informal care. We present empirical evidence of process utility on the basis of a large sample of Dutch caregivers (n=950). We measure process utility as the difference in happiness between the current situation in which the care recipient is cared for by the caregiver and the hypothetical situation that someone else takes over the care tasks, all other things equal. Other background characteristics on patient and caregiver characteristics, objective and subjective caregiver burden and quality of life are also presented and related to process utility. Our results show that process utility exists and is substantial and therefore important in the context of informal care. Almost half of the caregivers (48.2%) derive positive utility from informal care and on average happiness would decline if informal care tasks were handed over to someone else. Multivariate regression analysis shows that process utility especially relates to caregiver characteristics (age, gender, general happiness, relation to patient and difficulties in performing daily activities) and subjective caregiver burden, whereas it also depends on the number of hours of care provided (objective burden). These results strengthen the idea of supporting the use of informal care, but also that of keeping a close eye on the position of carers.     

Older Caregiving Parents: Division of Household Labor,Marital Satisfaction,and Caregiver Burden*

Abstract: Based on a sample of 126 families, this study investigated how division of household labor is related to marital satisfaction and caregiving burden among older married parents caring for adult children with intellectual disabilities. For mothers, greater spousal participation in household work and satisfaction with the division of labor were positively related to marital satisfaction. Satisfaction with division of labor also appeared to buffer maternal caregiving stress, decreasing the relationship between behavior problems of the adult child and caregiver burden. For fathers, there was no relationship between division of household labor and marital satisfaction. Behavior problems of the adult child predicted paternal caregiving burden only when men were satisfied with the labor division. Practice implications for professionals working with older caregiving parents are discussed.     

The neglected burden of caregiving in low- and middle-income countries

BackgroundThe number of persons with disability worldwide is estimated at more than one billion, and low- and middle-income countries (LMIC's) have particularly high prevalence. The consequences of disability have garnered growing attention, but the burden of caregiving for persons with disease or disability remains largely unquantified especially in LMIC's.ObjectiveThe goal of this paper is to report the results of a review of literature on caregiving in LMIC's, describing the characteristics of caregivers and of persons with disease or disability for whom care is provided, and the burden of caregiving in several domains.MethodsWe reviewed electronically available literature up to March 2012. Data were extracted pertaining to the following categories: caregiver demographics, caregiving activities, psychological burden, social burden, financial burden, physical burden, and time burden.ResultsOur review demonstrates that there is considerable and neglected burden on caregivers in LMIC's in physical, psychological, social, time, and financial realms. Existing literature is limited by the small volume of published research available on this topic, diverse methodologies, and lack of consensus on how to define and measure caregiver burden. However the evidence is clear that there are adverse consequences that arise as a result of the role of caregiver in this setting.ConclusionsIn light of the mounting evidence of the significant burden placed on caregivers of persons with disease and disability, it is imperative that the opportunity be taken to ensure that evidence informs best practice and policy in order to provide the support and services necessary to make an impact.     

Factors associated with caregiver burden among caregivers of patients with cancer in a hospice setting

Purpose: Previous research has examined caregiver burden in the context of chronic illness, but little is known about this problem in hospice settings. The objective of this project was to identify factors associated with caregiver perceptions of burden among those caring for the terminally ill, with a long-term goal of better understanding the links between the level of burden and the risk of adverse medical and psychological outcomes. Our expectation was that certain groups (e.g., older women) would experience greater burden.Methods: We conducted a cross-sectional survey of primary caregivers in a hospice setting. Among 388 caregivers of patients with cancer admitted between October 1999 and September 2000, 200 (52%) agreed to participate. In-person interviews were conducted to ascertain data on the caregivers' socio-demographic characteristics, self-reported health status, support systems, religiosity, and amount of assistance they provided to their patients. Using this information, we also calculated a composite social network index, incorporating marital status, religious activities, contact with friends, and participation in community groups. Caregiver burden was measured using a 9-item subset of the Zarit burden inventory, and the summary scores were dichotomized at the upper quartile. Using logistic regression, unadjusted and adjusted analyses identified factors significantly associated with increased burden scores.Results: We found that increased caregiver burden was related to younger age (OR 1.49, CI 1.12–1.99), a worse score on the social network index (OR 1.43, CI 1.05–1.95), and the number of activities in which the caregivers themselves were restricted due to their caregiving responsibilities (OR 1.32, CI 1.11–1.58).Conclusions: Although several factors were associated with caregiver feelings of burden, the specific results we found were not anticipated. Future research should examine these factors, as well as others that might be more easily modifiable, when evaluating increased risk among caregivers.