Background: The introduction of reforms to the Austrian pension system in the early 2000s resulted in a significant increase in the employment rate of older working age women. This increase was highly differentiated along education groups, with increases in employment rates concentrated among those with secondary and tertiary education. Methods: Logistic regression analysis is applied to SHARE data from waves 1 and 6, to determine whether the increase in labour market participation of women aged 50+ in Austria has affected informal caregiving across education lines. Results: Unlike their secondary and tertiary educated counterparts, lower educated women were more likely to provide high intensity care in 2015 than in 2004, resulting in an education gradient that was not present before. In comparison, the overall probability to provide care has not changed significantly, irrespective of older women's education. Other possible adjustments were also explored, such as decreased participation in social activities or higher care burden. There is also limited evidence of compensation by increased informal care provision among men. Conclusions: Both employment and informal care provision have become more segmented in Austria in the wake of the pension reforms of 2004.
Objectives and methods: Using unique data from a Japanese survey, this paper examines whether flexible work arrangements targeted specifically at workers with caregiving responsibilities under the Child Care and Family Care Leave Act help family caregivers reconcile paid work with care provision. Results: The regression results suggest that access to caregiver leave, which allows family caregivers to take a continuous leave of up to 93 days, is negatively and significantly associated with the probability of leaving one's job within one year of the onset of demand for parental care. This alleviating effect of access to caregiver leave remains robust even in the longer term and in a specification where we take into account the possible endogeneity of care provision to the labor supply decision. Conclusions: The findings of this paper thus suggest that the caregiver leave introduced pursuant to the Act in Japan helps meet the need of family caregivers to take a certain period of time off from work to make the necessary arrangements for accommodating the sudden and unexpected demand for elderly care in their daily lives.
Background: The concern in the scientific community for the study of people with dementia and their families is comprehensible, especially the importance of knowing the effects that caring for the patient has on their family dynamic, paying special attention to the main caregiver. Objectives: The objective of this study was to analyze the relationship of resilience and emotional intelligence with functional performance in the main caregivers of people with dementia in Spain according to the phase of the disease. Methods: A cross-sectional, descriptive, and analytical study was carried out. A total of 144 primary family caregivers of patients with dementia in Spain were included in the study. The following variables were measured: sociodemographic, psychosocial, and occupational, as well as resilience and emotional intelligence. Results: The caregivers obtained a low moderate resilience (mean = 64.01 ± 14.5), an emotional intelligence bordering between moderate and high (mean = 78.48 ± 14.82), and a 61.8% self-care categorized as somewhat and quite a bit. The presence of higher levels of resilience in family caregivers of people with dementia were positively related to the time spent on self-care (r = 0.227; p = 0.033) and leisure (r = 0.262; p = 0.014), especially in the moderate phase of the disease, while in the severe phase, this relationship appeared with productivity (r = 0.355; p = 0.034). The higher levels of emotional intelligence were positively related to a greater time dedicated to self-care (r = 0.233, p = 0.005), as well as the data observed in the moderate and severe phase (r = 0.214; p = 0.046 and r = 0.398; p = 0.016 respectively). Conclusions: The primary caregivers of relatives with dementia who have higher levels of resilience and emotional intelligence spend more time on self-care and leisure activities, especially in the moderate phase of the disease.
Objective: To examine the effect of employment status on sleep, care burden, and negative affect among family caregivers (FCs) at home. Methods: An intensive longitudinal design was applied in which 25 FCs underwent in-home assessments for up to 56 days. At baseline, demographic data and employment status were collected. FCs wore a wrist-worn device with an accelerometer to assess objective total sleep time (TST) for consecutive 24-hour periods. FCs answered the Zarit Burden Interview (ZBI) and Positive and Negative Affect Schedule (PANAS) every night before sleep. Linear mixed model analysis was used to examine the effect of objective sleep status on ZBI and PANAS scores the following day. Results: Mean participant age was 66.3 ± 10.8 years (72.0% female), and mean survey period was 29.1 ± 9.6 days (866 observations). Mean TST of FCs was 5.7 ± 1.4 hours. In total, 32.0% of FCs were employed either full- or part-time. TST of employed FCs was significantly associated with care burden and negative affect (B = −0.4 and −1.3, respectively); however, positive affect was not associated with TST. FCs who were unemployed experienced less care burden and negative affect (rate of change: −7.7 and −8.0, respectively). Additionally, TST of unemployed FCs was associated with negative affect; thus, when they slept 1 hour longer than their mean TST, they experienced less negative affect the following day. Conclusion: A reduction in TST could lead to increased care burden and more severe negative affect the following day, which may be moderated by employment status.
Background: A nursing worker who is also a caregiver of an elderly family member, plays a dual-duty role, which is challenging and requires knowledge, skills and professional experience. The interaction between family and work entails a spillover between the two, and affects employees and healthcare organizations. Objectives: The current exploration study examined differences between nursing employees who hold a dual role and those who do not, while identifying implications of the dual-duty role and the correlations between them at the individual level that might negatively affect the organization. Methods: A cross-sectional quantitative study was conducted, including 158 staff members from nursing homes in Israel: 41.8% were also informal caregivers for elderly family members, 62.5% were women, and 79.2% were Arabs. A self-administered questionnaire was used to measure workload, family-work conflict, absenteeism, tardiness, and intentions to leave the organization. Participants with a dual role tended to be older, had more children, had worked for longer period, and held part-time positions compared to those who do not. Results: Preliminary results showed no significant differences between the two groups. Pearson correlations revealed that workload and family-work conflict were positively associated with leaving intentions (dual-role caregivers: r=.30, p<.05, r=.45, p<.01; others: r=.61, p<.01, r=.34, p<.05). Among the dual-role group, workload was related to absenteeism (r=.27, p<.05), and family-work conflict was related to absenteeism and tardiness (r=.24, r=.29, p<.05). Among the other group, only family-work conflict was associated with tardiness (r=.33, p< .01). Conclusions: As negative consequences were indicated for workers with a dual-duty role, additional research in the healthcare sector should be conducted, leading to intervention programs for helping employees and organizations deal with the dual role and serving as the basis of policies and procedures. Key messages Nursing workers often suffer from workload and family-work conflict. Workload and family-work conflict among dual-duty caregivers might result in withdrawal behaviors (tardiness and absenteeism).
Background: Middle-aged adults are commonly confronted with the burden of paid work and multiple caregiving roles. Objectives: This paper examines the relationship between weekly hours of unpaid caregiving and hours of work using data from the baseline survey of the China Health and Retirement Longitudinal Study. Methods: The analysis was conducted on a nationally representative sample of 3645 working-age Chinese adults aged 45–60 years who were not farming and had a young grandchild and/or a parent/parent-in-law. For women and men separately, we combined the use of a Heckman selection procedure and instrumental variables to estimate the relationship between weekly caregiving hours and hours of work. A caregiving threshold was also identified for women and men separately to allow for the testing of a kink and/or a discontinuity in this relationship. Results: We found that for women, their working hours were initially unrelated to hours of caregiving before the threshold of 72 caregiving hours per week; then, their working hours experienced an almost two-fold increase at the caregiving threshold before falling by 2.02 percent for each additional hour of caregiving beyond the threshold. For men, their hours of work fell by 2.74 percent for each hourly increment in caregiving. Although a caregiving threshold of 112 h was identified for men, there was insufficient evidence for a statistically significant kink or discontinuity in this relationship. Conclusions: These findings provide support for a range of fiscal and human resource policies that target employed family caregivers in order to advance their well-being while also maintaining their work productivity.
Background: Over the past decades, informal care has increased in most OECD-countries. Informal care is costly to caregivers and to society in the form of lost income and direct costs of providing care. Existing evidence suggests that providing informal care affects caregivers’ overall health. However, estimates of the social costs of informal care based on national data on individuals are currently scarce. Objective: This study contributes to the existing evidence on the costs of informal care by estimating the direct and indirect costs to caregivers using a purposive national household survey from Sweden. Methods: Adopting a bottom-up, prevalence approach, the direct and indirect costs are estimated using the survey data and the value of working time and leisure time from existing sources. Results: The results suggest that around 15% of the adult population of Sweden provide informal care and that such care costs around SEK 152 billion per year (around 3% of GDP; USD 16,3 billion; EUR 14,5 billion), or SEK 128000 per caregiver. Around 55% of costs are in the form of income loss to caregivers. The largest cost items are reduced work hours and direct costs of providing informal care. Replacing informal caregivers with professional care providers would be costly at around SEK 193,6 billion per year. Conclusions: Findings indicate that, even in a country with a relatively generous welfare system, significant resources are allocated toward providing informal care. The costing analysis suggests that effective support initiatives to ease the burden of informal caregivers may be cost-effective.
Background: Chronic obstructive pulmonary disease (COPD) is associated with substantial humanistic and socioeconomic burden on patients and their caregivers. COPD is expected to be 7th leading cause of disease burden till 2030. Objectives: The objective of the current study was to assess the humanistic and socioeconomic burden of COPD patients and their caregivers in Malaysia. The burden includes the cost of management of COPD, QOL of COPD patients and their caregivers, work productivity and activity impairment of COPD patients and their caregivers due to COPD. Methods: One hundred and fifty COPD patients and their caregivers from the chest clinic of Penang Hospital were included in the study from August 2018 to August 2019. Caregiving cost was estimated using the replacement cost approach, while humanistic and social burden was assessed with the help of health status questionnaires. Results: Overall, 64.66% and 7.1% of COPD patients reported to depend on informal caregivers and professional caregivers respectively. COPD patients reported dyspnoea score as 2.31 (1.31), EQ-5D-5L utility index 0.57 (0.23), CCI 2.3 (1.4), SGRQ-C 49.23 (18.61), productivity loss 31.87% and activity impairment 17.42%. Caregivers reported dyspnoea score as 0.72 (0.14), EQ-5D-5L utility index 0.57 (0.23), productivity loss 7.19% and social activity limitation as 21.63% due to taking care of COPD patients. Conclusions: In addition to the huge direct cost of management, COPD is also associated with substantial burden on society in terms of compromised quality of life, reduced efficiency at the workplace, activity impairment and caregiver burden.
Objective: Children born with Complex Life-Threatening Conditions (CLTCs) often require complex and specialized services. Parents of children with CLTCs balance the role of caregiver with other responsibilities of employment, education, relationships, and self-care. The purpose of this paper is to describe the challenges for parents serving as caregivers of children with CLTCs and their intersection with health care provider expectations through utilization and adaptation of the role theory framework. Methods: We employed a qualitative descriptive design, secondary analysis of a longitudinal study on parent and provider decision making for children with CLTC. There were 218 interviews from sixty-one parents of 35 infants with prematurity, bone marrow transplant, and/or complex cardiac disease, followed for one year unless death occurred. Content analysis and thematic generation were performed capturing the various parental roles embedded within provider expectations of informal parental caregiving. Results: Results showed that parents of children with CLTCs serve multidimensional roles, including that of informal nurse and care coordinator, while maintaining additional personal roles as parent and family provider. Parents experienced challenges as caregivers that were shaped by perceived expectations of health care providers as well as lack of support, often leading to role strain, conflict, overload, and sometimes exit. Conclusions: Parents of children with CLTCs experience both common and unique challenges inn balancing multiple roles as an informal caregiver. Despite utilizing positive coping mechanisms, their status as parent caregiver carries significant risk for role strain and overload. We recommend the implementation of strategies for increasing parental support and family-centered care.
The United Nations Universal Declaration of Human Rights is widely acknowledged as a landmark document in the history of human rights. Drafted by representatives from all over the world, the declaration was proclaimed by the United Nations General Assembly in Paris on 10 December 1948 (General Assembly resolution 217 A) as a common standard for all peoples and all nations. The declaration sets out a series of articles that articulate a number of fundamental human rights to be universally protected. Article 23 of the declaration relates to the right to work and states that people have a human right to work, or engage in productive employment, and may not be prevented from doing so. The right to work is enshrined in international human rights law through its inclusion in the International Covenant on Economic, Social and Cultural Rights, where the right to work emphasizes economic, social and cultural development. This paper presents ongoing research that highlights how a disruptive co-design approach contributes to upholding UN Article 23 through the creation of a series of innovative working practices developed with people living with dementia. The research, undertaken in collaboration with several voluntary and third sector organizations in the UK, looks to break the cycle of prevailing opinions, traditional mindsets, and ways-of-doing that tend to remain uncontested in the health and social care of people living with dementia. As a result, this research has produced a series of innovative work opportunities for people living with dementia and their formal and informal carers that change the perception of dementia by showing that people living with dementia are capable of designing and making desirable products and offering much to UK society after diagnosis. In this ongoing research, the right to continue to work for people living with dementia post-diagnosis in creative and innovative ways has clearly helped to reconnect them to other people, helped build their self-esteem, identity and dignity and helped keep the person with dementia connected to their community, thus delaying the need for crisis interventions. This paper reports on a series of future work initiatives for people living with dementia where we have used design as a disruptive force for good to ensure that anyone diagnosed with dementia can exercise their right to work and engage in productive and rewarding employment.
For persons with Parkinson’s disease, the loss of autonomy in daily life leads to a high level of dependency on relatives’ support. Such dependency strongly correlates with high levels of perceived stress and psychosocial burden in informal caregivers. Global developments, such as demographic change and the associated thinning infrastructure in rural areas cause a continuously growing need for medical and nursing care. However, this need is not being adequately met. The resulting care gap is being made up by unpaid or underpaid work of informal caregivers. The double burden of care work and gainful employment creates enormous health-related impairments of the informal caregivers, so that they eventually become invisible patients themselves. Expectedly, those invisible patients do not receive the best care, leading to a decrease in quality of life and, in the end, to worse care for PD patients. Suggested solutions to relieve relatives, such as moving the person affected by Parkinson’s to a nursing home, often do not meet the wishes of patients and informal caregivers, nor does it appear as a structural solution in the light of demographic change against an economic background. Rather, it requires the development, implementation and evaluation of new, holistic approaches to care that make invisible patients visible.
Background: Informal caregivers are subject to a heavy work burden, which can have negative repercussions on their work ability. Objectives: This cross-sectional study with 70 informal caregivers aims to evaluate the work ability of informal caregivers caring at home for patients followed by the Public Home Care Service in Bauru, Brazil, as well as to investigate its associated factors. Methods: The association between work ability and the variables under study was estimated using simple and multiple logistic regression models, including a hierarchical model. Work ability, care-related burden, sleep quality and quality of life were assessed through the Work Ability Index, the Zarit Burden Interview Scale, the Mini-sleep Questionnaire, and the 12-Item Short-Form Health Survey, respectively. Results: Almost 36% of the informal caregivers had an inadequate work ability. The variables that increased the probability of an adequate work ability were quality of life (OR: 0.94; CI: 0.92–0.97) and self-perceived physical fitness (OR: 0.32; CI: 0.17–0.60), while those that reduced the likelihood of adequate work ability were age (OR: 1.06; CI: 1.02–1.13), burden (OR: 1.05; CI: 1.01–1.10) and poor sleep quality (OR: 1.07; CI: 1.01–1.12). Conclusions: It is necessary to develop public health policies aimed at informal caregivers who, due to their informality, are not seen as workers.
Background: With an increasing retirement age, more older adults are combining employment with informal care-giving responsibilities. However, little is known about how older workers experience care-giving activities next to their paid jobs. Objective: This study aims to fill this gap by examining how the work situation (i.e. working hours, occupational status and perceived access to human resources practices) is associated with feelings of gratification, burden and stress in care-giving. Methods: Using data from the NIDI Pension Panel Survey, we study care-giving experiences-in other words, the extent to which care-giving activities are gratifying, burdensome or stressful-of 1,651 Dutch older workers (age 60-65) who provide care at least once per week. Results: Multivariate analyses reveal that the work situation plays an explanatory role next to socio-demographic factors and indicators of the care-giving situation. Working care-givers who feel they have access to phased retirement and organisational health support experience care-giving as relatively less burdensome and stressful. Moreover, those with access to phased retirement experience relatively higher levels of gratification in care-giving. Conclusions: Our findings suggest that the availability of organisational support relates to lower levels of care-giving burden and stress, and to some extent to higher levels of gratification. Organisations thus play an important role in facilitating the combination of work and care-giving obligations in a context of longer working lives.
Indicators from the Office for National Statistics’ Opinions and Lifestyle Survey to understand the impacts of the coronavirus (COVID-19) pandemic on unpaid carers in Great Britain.
Background: Cancer patients commonly require assistance from a relative or friend, and many of these “family caregivers” are navigating employment while caring. Objectives: The purpose of this analysis was to understand the experience of employment while providing care to someone with cancer, including these caregivers’ roles and burden, adjustments made to employment, assistance provided by employers, and preferences for employment and financial support. To further highlight this group of cancer caregivers, we compare it with (1) cancer caregivers who were not employed while caring; (2) caregivers for patients with a primary condition other than cancer who were employed while caring; and (3) caregivers for patients with a primary condition other than cancer who were not employed while caring. Methods: This secondary analysis is drawn from the National Alliance for Caregiving’s (NAC)/AARP Caregiving in the US dataset of unpaid adult (i.e., age 18 and older) caregivers. Half of the cancer caregivers were employed while providing care, and these employed caregivers were significantly more likely to be younger than those non-employed while caring. Findings: The employed cancer caregivers provided significantly fewer hours of care per week on average than those non-employed (23.4 vs. 42.5 h/week) but provided a nearly equivalent number of ADLs on average. Nearly half (48%) of the employed cancer caregivers reported coming in late to work, leaving early, or taking off work to accommodate caregiving, while 24% cut back on hours at work or went from full-time to part-time employment and 11% retired early or quit work entirely. The employed cancer caregivers (excluding self-employed) indicated having access to flexible working hours (57%) or paid sick leave (48%), and most (73%) reported that their supervisor was aware of their caregiving role, which was significantly higher than employed non-cancer caregivers (55%). These findings suggest that balancing work and cancer caregiving is especially prevalent among younger caregivers, and that work adjustments are needed but that the cancer caregiving role might be more commonly discussed or shared with supervisors. Conclusions: These findings suggest the need to develop workplace educational resources for employees caring for a cancer patient but also for supervisors to enhance their understanding of caregiver strain, workload, and work-based strategies to assist cancer caregivers.
According to a new Fidelity study, 4 in 10 working caregivers are at risk of choosing between their job and family demands in the next year. [...] when Anthem Inc. implemented caregiving platform ianacare as a benefit for their working caregivers, they saw 83% increase in productivity, 30% decrease in feelings of stress and burden, and a 96% employee satisfaction score. While we wait to see the outcome of federal paid leave, let’s make changes to provide better benefits and options for working family caregivers.
Objectives and Methods: This study compares carers and non-carers as regards experiences of harmful financial events during and immediately after the Great Recession. Findings: Carer status was associated with experiencing more negative financial events since the Great Recession began, even after controlling for covariates in a negative binomial regression. Carers had higher odds of reporting: job loss; moving in with family and friends to save money; and selling possessions to make ends meet. Conclusions: Compared to non-carers, carers were more likely to experience adverse financial events during and following the Great Recession.
Objectives: This article investigates how different types of informal caregiving - upward, lateral and downward - impact men's and women's decisions to retire or to reduce their working hours, and how welfare policy characteristics moderate the linkage between informal care provision and employment participation. Methods: The analyses are based on six waves from the Survey of Health, Ageing and Retirement in Europe (SHARE). We exploit the data's longitudinal structure by applying fixed-effects regression models with lagged, time-varying country characteristics. Results: The results show that, in most cases, upward caregiving to parents is less relevant for deciding to remain in the labour market than lateral care (especially to siblings, friends and neighbours) and downward grandchild care. Conclusion: The welfare context moderates the impact of caregiving on labour market participation, with variation between the different types of care provided. [Abstract]
Background: In Japan, there is a high incidence of family members caring for their elderly. To facilitate this, caregivers often quit their jobs, work reduced hours, and forfeit leisure activities. Objectives: This study examined the relationship between the mental health of the caregivers and the sacrifices and adjustments they make to care for the elderly. Methods: A cross-sectional survey was conducted with responses from 171 caregivers. Referencing Pearlin’s stress process model, the relationship among five types of work change, four types of leisure activity quitting, caregivers’ subjective care burden, and depression were analyzed using t-test and multiple regression analysis. Methods: Caregivers who quit their work or other home activities had significantly more daily living care responsibilities than those who did not. Moreover, caregivers who gave up leisure activities had a greater sense of subjective care burden than those who did not. The experience of giving up peer activities and taking leave of absence from work was significantly associated with increased depressive symptoms. Being a part-timer or financially prosperous was associated with good mental health. Conclusions: To support family caregivers, it is essential to reduce the burden of long-term care and provide financial help and an environment where they interact with their peers, and their moods can be enhanced.
This quality standard covers the provision of support for adults aged 18 or over who provide unpaid care for 1 or more people aged 16 or over with health and social care needs. It describes high-quality care in priority areas for improvement.
It does not cover people who provide paid care or do so as voluntary work.
Objectives: This study aimed to examine the contribution of shift work, work time control (WTC) and informal caregiving, separately and in combination, to sleep disturbances in ageing employees. Methods: Survey data were obtained from two prospective cohort studies with repeated measurements of working conditions, informal caregiving, and sleep disturbances. We used fixed-effect conditional logistic regression analysis to examine whether within-individual changes in shift work, WTC and informal caregiving were associated with changes in sleep. Secondary analyses included between-individuals comparison using standard logistic regression models. Results from the two cohorts were pooled using meta-analysis. Results: Low WTC and informal caregiving were associated with sleep disturbances in within-individual analyses [odds ratios (OR) ranging between 1.13 (95% confidence interval 1.01–1.27) and 1.48 (95% CI 1.29–1.68)] and in between-individuals analyses [OR 1.14 (95% CI 1.03–1.26) to 1.33 (1.19–1.49)]. Shift work alone was not associated with sleep disturbances, but accumulated exposure to shift work, low WTC and informal caregiving was associated with higher risk of sleep disturbances (OR range 1.21–1.76). For some of the sleep outcomes, informal caregiving was related to a higher risk of sleep disturbances when WTC was low and a lower risk when WTC was high. Conclusions: Informal caregiving and low WTC are associated with risk of sleep disturbances among ageing employees. The findings also suggest that low WTC in combination with informal caregiving may increase the risk of sleep disturbances whereas high WTC may alleviate the adverse impact of informal caregiving on sleep. © 2021, Nordic Association of Occupational Safety and Health. All rights reserved.
Background: The concern in the scientific community for the study of people with dementia and their families is comprehensible, especially the importance of knowing the effects that caring for the patient has on their family dynamic, paying special attention to the main caregiver. The objective of this study was to analyze the relationship of resilience and emotional intelligence with functional performance in the main caregivers of people with dementia in Spain according to the phase of the disease. Methods: A cross-sectional, descriptive, and analytical study was carried out. A total of 144 primary family caregivers of patients with dementia in Spain were included in the study. The following variables were measured: sociodemographic, psychosocial, and occupational, as well as resilience and emotional intelligence. Results: The caregivers obtained a low moderate resilience (mean = 64.01 ± 14.5), an emotional intelligence bordering between moderate and high (mean = 78.48 ± 14.82), and a 61.8% self-care categorized as somewhat and quite a bit. The presence of higher levels of resilience in family caregivers of people with dementia were positively related to the time spent on self-care (r = 0.227; p = 0.033) and leisure (r = 0.262; p = 0.014), especially in the moderate phase of the disease, while in the severe phase, this relationship appeared with productivity (r = 0.355; p = 0.034). The higher levels of emotional intelligence were positively related to a greater time dedicated to self-care (r = 0.233, p = 0.005), as well as the data observed in the moderate and severe phase (r = 0.214; p = 0.046 and r = 0.398; p = 0.016 respectively). Conclusions: The primary caregivers of relatives with dementia who have higher levels of resilience and emotional intelligence spend more time on self-care and leisure activities, especially in the moderate phase of the disease.
Background: Studies have shown that children and adolescents with autism and their relatives present a high level of stress and more family problems, impacting parents’ and caregivers’ quality of life (QoL). Despite studies on this subject, there is no specific questionnaire to evaluate QoL in parents or caregivers of children and adolescents with an autistic spectrum disorder (ASD) in Brazil. Therefore, this study’s primary purpose was to develop and validate a specific questionnaire to evaluate QoL in these individuals. Methods: The study was performed using the following steps: development of the ASD Parent/caregiver QoL questionnaire (autistic spectrum disorder parent/caregiver quality of life—ASDPC-QoL), subjective evaluation, validation of the questionnaire by the Delphi method, assessment of internal consistency, responsiveness, and reliability of the ASLPC-QoL, and administration of the questionnaire to 881 Brazilian ASD caregivers or parents. ASDPC-QoL comprises 28 questions divided into four domains (social, concerns, physical and mental health) with good psychometric properties (reproducibility, reliability, internal consistency, responsiveness, and validity). Results: Our data showed that worries and physical health were the domains with the lowest scores in ASDPCA-QoL. ASDPCA-QoL did not differ among gender and age of child considering the total and all domains. Older participants (≥41 y/o) presented the best scores for social and worries domains but did not differ in other domains and the total. Parents or caregivers of ASD children diagnosed for more than three years have better mental and physical health domains than those recently diagnosed (up to 1 year) but did not differ in the total and other domains. Individuals with a partner and with the highest educational level present the best score for the social domain. Employed individuals showed better scores than unemployed ones for all domains and the total, except for worries, which did not differ. It also occurred comparing the individuals that do not use antidepressants and the ones that use them. Conclusions: Assessing and better understanding the QoL of caregivers is highly relevant. By understanding the social, worries, physical, and emotional health domains of caregivers, it is possible to track harmful aspects, prevent and treat pathologies, in addition to assisting in the implementation of effective public policies.
Background: This study used quantitative and qualitative research methods to analyze how acute hepatic porphyria (AHP) affects patients with varying annualized porphyria attack rates. The overall impact of AHP on patients and caregivers, including their quality of life, was explored. The nature and treatment of acute attacks, experiences of long-term heme arginate treatment and access to other appropriate treatment, and the extent of and treatment for chronic symptoms were also investigated within this study. Methods: Patient and caregiver data were collected via an online survey of members of the British Porphyria Association, followed by an optional 1-h telephone interview. Results: Thirty-eight patients and 10 caregivers responded to the survey. Of those, 10 patients and three caregivers completed follow-up interviews. Overall, 19 patients (50%) had experienced an acute attack within the previous 2 years, and the severity and types of symptoms experienced during or between acute attacks varied considerably. There were no clear definitions among patients for ‘mild’ or ‘severe’ attacks. Treatments and treatment settings used to manage attacks also varied. Following unsatisfactory care experiences at hospitals, some patients reported avoiding further hospital services for later attacks. Therefore, using settings of care as a measure of attack severity should be avoided. Ninety-four percent of patients also experienced chronic symptoms, which were as varied as acute attacks. Pain was the predominant chronic symptom and was managed with opioids in severe cases. Regardless of AAR, porphyria heavily impacted the daily lives of patients and caregivers. Although patients experiencing frequent attacks generally endured a greater impact on their daily life, patients with less frequent attacks also experienced impacts on all domains (social, leisure activities, relationship with family, relationships, psychological wellbeing, finances, employment, and study). Caregivers were most affected in the finance, relationships with family, and employment domains, and just over half of the caregivers reported a moderate impact on their psychological wellbeing. Conclusions/implications: The burden of illness with AHP is high across all patients, regardless of frequency of attacks, and AHP negatively affects patients and caregivers alike.
Background: Cancer is increasing in its prevalence in sub-Saharan Africa. Informal caregivers are key to supporting engagement and interaction with palliative care services, but limited literature on their role impedes development of supportive interventions. Aim: We aimed to understand the role, impact, and support of informal caregivers of patients with advanced cancer when interacting with palliative care services in Nigeria, Uganda, and Zimbabwe. Design: Secondary analysis of qualitative interview transcripts. The dataset was assessed for fit and relevance and framework approach was used. Setting/participants: Interview transcripts of informal caregivers included participants aged over 18 years of age recruited from palliative care services across participating countries. Results: A total of 48 transcripts were analyzed. Mean age was 37 (range 19–75) with equal numbers of men and women. Five themes emerged from the data: (1) caregivers are coordinators of emotional, practical, and health service matters; (2) caregiving comes at a personal social and financial cost; (3) practical and emotional support received and required; (4) experience of interacting and liaising with palliative care services; and (5) barriers and recommendations relating to the involvement of palliative care. Conclusions: The role of informal caregivers is multi-faceted, with participants reporting taking care of the majority of medical, physical, financial, and emotional needs of the care recipient, often in the face of sacrifices relating to employment, finances, and their own health and social life. Efforts to develop comprehensive cancer control plans in sub-Saharan Africa must take account of the increasing evidence of informal caregiver needs.
Background: Because of an expected increase in the number of family caregivers, there is a growing public and scientific interest in family caregiving and more specifically in the combination of family care with paid employment. It is important to gain insight in the family caregivers' strain and determining factors in the job and family domain. Aim: The aim of the study was to examine the associations of job and family demands and job and family resources with indicators of caregivers' psychological strain, that is caregiver burden, work‐related emotional exhaustion and general ill mental health. In our research, we focused on individuals who combine paid employment with family caregiving. Methods: A cross‐sectional design was used. The study sample was derived in 2011 from a Dutch financial organisation and a healthcare organisation. A digital fully structured questionnaire was used. The sample consisted of 187 employees who identified themselves as family caregivers. Descriptive statistics and hierarchical linear regression analysis were performed. Results: Job demands (i.e. workload, work–family conflict) and family demands (i.e. family care hours and family–work conflict) were significantly positively associated with all three domain‐specific indicators of strain. The resources of work–family and family–work enrichment and autonomy did not contribute to less experienced strain. More supervisor and colleague support was associated with lower ill mental health. Conclusion: Our study showed that job demands (workload, work–family conflict) and family demands (family care hours, family–work conflict) were clearly associated with caregiver strain, while associations for job and family resources were not evident. It remains necessary to pay attention to the demanding aspects of dual roles of family caregivers but also to investigate the resources they have available at work as well as in their home situation and explore their potential reducing effect on family caregivers' strain.
Background: Falls can lead to social isolation, anxiety and depression for those who fall, although little is known about how informal carers manage those at risk from falling at home. Objectives: This study aimed to explore the experiences of informal carers who care for frail, older people at risk from falling at home. Methods: A qualitative study using thematic analysis was conducted for this purpose. Data were collected via one-to-one, semi-structured interviews. Findings: Informal carers experienced social isolation, significant adjustments to their working lives, a fear of further falls, tiredness, anxiety and depression. Conclusions: These findings mirror previous observations, which have found that falling is a predictor of both physical and psychological changes, although in those who fall rather than those who care for them. This highlights the need for both health and social care services to identify the impact of care recipient falls on the informal carer.
Background: Facing rapidly ageing populations, many Western countries aim to stimulate informal care provision as a way to meet the growing long-term care (LTC) demand. While various studies report the impact of providing informal care on the health of caregivers, it is less clear whether and to what extent this impact differs across countries. Methods: Using propensity score matching we match caregivers to similar non-caregiving individuals using four waves of the Dutch Study on Transitions in Employment, Ability and Motivation and the UK Household Longitudinal Study. The samples consist of 8129 Dutch and 7186 UK respondents, among which respectively 1711 and 1713 individuals are identified as caregivers. We explore whether the health impact of providing informal care differs by country once similar caregivers, in terms of the intensity of provided care, are compared. Results: In both countries we find negative mental health effects of providing informal care. While these effects slightly differ by country, the main differences arise between subgroups of caregivers. Individuals that provide more than 20 hours of informal care per week, and those who face a double burden of care and full-time employment experience the most severe negative mental health effects. Conclusions: These results indicate that health effects of providing informal care are mediated by the specific caregiving context, allowing policymakers to use information on this context to provide targeted aid. In addition, it suggests that previously reported differences of caregiving effects across countries could be driven by differences in the population of informal caregivers which are shaped by countries’ LTC policies.
Background: Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease that causes progressive autonomy loss and need for care. This does not only affect patients themselves, but also the patients’ informal caregivers (CGs) in their health, personal and professional lives. Objectives: The big efforts of this multi-center study were not only to evaluate the caregivers’ burden and to identify its predictors, but it also should provide a specific understanding of the needs of ALS patients’ CGs and fill the gap of knowledge on their personal and work lives. Methods: Using standardized questionnaires, primary data from patients and their main informal CGs (n = 249) were collected. Patients’ functional status and disease severity were evaluated using the Barthel Index, the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) and the King’s Stages for ALS. The caregivers’ burden was recorded by the Zarit Burden Interview (ZBI). Comorbid anxiety and depression of caregivers were assessed by the Hospital Anxiety and Depression Scale. Additionally, the EuroQol Five Dimension Five Level Scale evaluated their health-related quality of life. Results: The caregivers’ burden was high (mean ZBI = 26/88, 0 = no burden, ≥24 = highly burdened) and correlated with patients’ functional status (rp = −0.555, p < 0.001, n = 242). It was influenced by the CGs’ own mental health issues due to caregiving (+11.36, 95% CI [6.84; 15.87], p < 0.001), patients’ wheelchair dependency (+9.30, 95% CI [5.94; 12.66], p < 0.001) and was interrelated with the CGs’ depression (rp = 0.627, p < 0.001, n = 234), anxiety (rp = 0.550, p < 0.001, n = 234), and poorer physical condition (rp = −0.362, p < 0.001, n = 237). Moreover, female CGs showed symptoms of anxiety more often, which also correlated with the patients’ impairment in daily routine (rs = −0.280, p < 0.001, n = 169). As increasing disease severity, along with decreasing autonomy, was the main predictor of caregiver burden and showed to create relevant (negative) implications on CGs’ lives, patient care and supportive therapies should address this issue. Moreover, in order to preserve the mental and physical health of the CGs, new concepts of care have to focus on both, on not only patients but also their CGs and gender-associated specific issues. Conclusions: As caregiving in ALS also significantly influences the socioeconomic status by restrictions in CGs’ work lives and income, and the main reported needs being lack of psychological support and a high bureaucracy, the situation of CGs needs more attention. Apart from their own multi-disciplinary medical and psychological care, more support in care and patient management issues is required.
Background: Contemporary Western societies face an increasing demand for informal care. Objectives: The primary goals of the present article are to understand the degree to which employment rights support the needs of working carers' of elder age relatives and to underscore the need to promote social policies to better secure both working carers and their older relatives. Drawing on findings showing that high-intensity caregiving is associated with a reduction in the labour pool for paid work and negatively affects employment status and career, this study examines how employment legislation support working caregivers from an international perspective. Methods: The study utilizes an intrinsic and case study research design to compare the employment rights and entitlements in Australia, England, and Israel. Results: The findings indicate that, first, all three countries surveyed provide basic protection through statutory employment rights which are categorized under three fundamental occupational entitlements: Paid or Unpaid Leave, Sick Days and Equal Rights. Secondly, while Australia and England maintain a legal right to request flexible work to care for elder relatives, the analysis foregrounds the absence of flexible employment legislation in Israel. Conclusions: Thought that the aim of balancing limited public resources with family resources requires a broad understanding of concrete legislation, such comparison can inform policy targeted to reconcile distress along the work-eldercare axis.
Background: There has been a documented increase in the numbers of filial and sandwiched caregivers in the United States. However, past studies have overlooked the impact of work and family overload on caregiver well-being. Methods: This study investigates the moderating influences of the quality and directionality of work and family spillover on the well-being (e.g., positive affect and negative affect, psychological well-being, and global well-being) of 180 filial and sandwiched caregivers from the second wave of the Midlife in the United States Survey. Results: Regression and moderation analyses revealed that sandwiched caregivers with high levels of negative work-to-family spillover exhibited higher negative affect than the comparison groups. Sandwiched caregivers with high levels of negative family-to-work spillover exhibited higher level of negative affect and lower level of self-acceptance than other caregivers. Conclusions: These findings can help create work programs that address spillover between work and home in the effort to promote caregiver well-being.
Background: Many informal caregivers of older adults combine their caregiving tasks with a paid job. Adequate support is important to enable them to combine paid work with caregiving, while maintaining their health and wellbeing. To date, however, knowledge about working caregivers’ support needs is fragmented. This study, therefore, aimed to obtain more insight into the support needs of working caregivers of older adults. Methods: We conducted six online semi-structured focus group interviews with in total 25 working caregivers of older adults living at home. Data were complemented with information from seven working caregivers participating in the study’s advisory board. Data were analyzed using inductive and deductive thematic analysis. Findings: Six themes related to working caregivers’ needs were identified: (1) Recognition of caregivers, including the challenges they face; (2) Attention for caregivers’ health, wellbeing and ability to cope; (3) Opportunities to share care responsibilities; (4) Help with finding and arranging care and support; (5) Understanding and support from the work environment; (6) Technological support tailored to the needs and capacities of caregivers and older adults. To address these needs, working caregivers suggested several options in multiple domains of life (i.e., work, home and social life, care environment, personal health and wellbeing). Conclusions: To successfully support them, a multi-faceted effort, involving actors from multiple settings, is needed.
Family caregiving is a shared experience across people of all age groups, cultures, incomes, and education levels in the United States. Roughly 41 million Americans are serving as a caregiver of an older adult. Many family caregivers, sometimes called informal or unpaid caregivers, are relatives, friends, and neighbors who provide ongoing assistance to adults aged 50 and older with health or functional needs.
Background: The aim of this study was (i) to analyze problems faced by informal caregivers in three areas of their life: health, work and finances, and family and social relationships, (ii) to investigate the main determinants of these problems, and (iii) to explore differences between men and women. Methods: The study population consisted of people aged ≥18 years living in a family home who were providing unpaid care to a dependent person in the same or another home and who were registered as caregivers with the Primary Health Care District of Granada or the Provincial Council of Gipuzkoa. Several logistic regression models were built to analyze the likelihood of caregivers experiencing health, work-related, or social problems as a result of their caregiving responsibilities. Results: Informal female caregivers were more likely to experience problems attributed to caregiving than their male counterparts, particularly in the areas of health and work. Additional factors associated with an increased likelihood of problems were low perceived social support, performance of ungratifying tasks, and fewer years as a caregiver. Conclusions: Informal caregivers in Spain face significant problems as a result of their caregiving duties, and the impact on men and women is different. Policies and interventions to mitigate the negative effects of unpaid caregiving should incorporate differential strategies to meet the specific needs of male and female caregivers in different caregiving contexts.
Background: The increase in the elderly population, chronic and degenerative diseases, as well as accidents at work and on the road in Malaysia would result in an increased demand for informal care. This paper aimed to determine the associated factors of informal caregiving and its effects on health, work and social activities of adult informal caregivers in Malaysia. Methods: The data from the 2019 National Health and Morbidity Survey (NHMS), a nationwide cross-sectional survey with a two-stage stratified random sampling design, was used in this research. The study included respondents who were 18 years and older (n = 11,674). Data were obtained via face-to-face interviews using validated questionnaires. Descriptive and complex sample logistic regression analyses were employed as appropriate. Results: 5.7% of the adult population were informal caregivers. Provision of informal care were significantly associated with the female sex (OR = 1.52, 95% CI [1.21, 1.92]), those aged 36–59 years (OR = 1.61, 95% CI [1.15, 2.25]), and those who reported illness in the past 2 weeks (OR = 1.79, 95% CI [1.38, 2.33]). The risk of having their health affected were associated with female caregivers (OR = 3.63, 95% CI [1.73, 7.61]), those who received training (OR = 2.10, 95% CI [1.10, 4.00]) and those who provided care for 2 years or more (OR = 1.91, 95% CI [1.08, 3.37]). The factors associated with the effects on work were ethnicity, received training and had no assistance to provide the care. In terms of effect on social activities, female caregivers (OR = 1.96, 95% CI [1.04, 3.69]) and caregivers who received training were more likely (OR = 2.19, 95% CI [1.22, 3.93]) to have their social activities affected. Conclusion: Our study revealed that sex, age, and self-reported illness were factors associated with being an informal caregiver in Malaysia. Informal caregivers faced effects on their health, work, and social activities which may be detrimental to their well-being. This understanding is crucial for planning support for caregivers.
Background: Young adults are increasingly taking on caregiving roles in the United States, and cancer caregivers often experience a greater burden than other caregivers. An unexpected caregiving role may disrupt caregiver employment, leading to lost earning potential and workforce re-entry challenges. Methods: We examined caregiving employment among young adult caregivers (i.e., family or friends) using the 2015 Behavioral Risk Factor Surveillance System (BRFSS), which included caregiving, employment, and sociodemographic variables. Respondents’ ages varied between 18 and 39, and they were categorized as non-caregivers (n = 16,009), other caregivers (n = 3512), and cancer caregivers (n = 325). Current employment was compared using Poisson regressions to estimate adjusted incidence rate ratios (aIRR) and 95% confidence intervals (95% CI), including gender-stratified models. We estimated employment by cancer caregiving intensity (low, moderate, high). Results: Cancer caregivers at all other income levels were more likely to be employed than those earning below USD 20,000 (aIRR ranged: 1.88–2.10, all p < 0.015). Female cancer caregivers who were 25–29 (aIRR = 0.71, 95% CI = 0.51–1.00) and single (aIRR = 0.70, 95% CI = 0.52–0.95) were less likely to be employed than their counterparts. College-educated males were 19% less likely to be employed than high school-educated caregivers (95% CI = 0.68–0.98). Conclusions: Evaluating caregiver employment goals and personal financial situations may help identify those at risk for employment detriments, especially among females, those with lower educational attainment, and those earning below USD 20,000 annually.
Methods: We used the 2016–2018 National Survey of Children’s Health to assess restricted work participation among caregivers of children with autism spectrum disorder (ASD) and special health care needs (SHCN). Results: Caregivers of children with ASD (N = 2,041) were especially likely to avoid changing jobs to keep health insurance coverage (20%; 95% CI: 16%, 24%), compared to either caregivers of children with other SHCN (N = 18,189) or children without SHCN (N = 68,499). Conclusion: Identifying effective strategies to mitigate the effects of a child’s ASD diagnosis on parents’ withdrawal from the workforce would add an important piece to comprehensive, family-centered care for this at-risk population.
Background: Care of elderly family members affects the welfare of the elderly and caregivers and has macroeconomic implications. In Eastern Europe, aging populations combined with under-developed care policy increase family care burdens, but the impact of care on labour force participation is understudied in this context. Methods: Using two waves of the Generations and Gender survey, we estimate the impact of care demand on paid employment in Bulgaria. Results: We find that living with an elderly or disabled parent has a negative impact on employment for women and that this impact cannot be explained by reverse causality or unobserved individual characteristics. Conclusions: More developed care policy would benefit caregivers and would be likely to generate broader fiscal benefits.
Objectives: The present study aims to explore the economic distress and pertinent coping strategies in families with a member suffering from a severe mental illness. Furthermore it endeavors to gauge the impact of illness burden and that of the Greek recession on economic distress, while disentangling their contribution. Methods: In total, 190 key relatives of people with severe mental illness were recruited from community mental health services in the region of Attica. Relatives completed a self-reported questionnaire consisting of the Index of Personal Economic Distress, the Family Burden scale and the Family Rituals scale. Information on financial strategies for tackling recession and income loss due to the recession was also gleaned. Results: Regarding economic distress, only 15% had frequent difficulty meeting routine financial demands in their household. The preponderant strategy was spending savings (56.8%). Income category and spending less on basic needs were the main predictors of economic distress. Conclusions: Objective poverty indices rather than burden predicted economic distress to a greater extent.
Background: Grandmothers in the "sandwich generation" are considered as those women who are potential caregivers for two generations: older relatives and grandchildren. Methods: With the goal of understanding the factors that affect their stress and health, 149 women from southwestern Spain were interviewed using an ad hoc questionnaire that included standardized scales and subscales. Results: The results showed that age, coping strategies based on emotional support and acceptance, as well as optimism and social support improved the health of these women by reducing their perceived stress. Although caring for older relatives is related to family conflicts and worse health, conversely, caring for grandchildren is related to slightly better health. Conclusions: The results are useful for planning psychological interventions with these women and highlight the need to include family interventions.
Background: The number of informal caregivers over the age of 50 who care for multiple family members including children and elderly relatives – a practice termed 'double care' – has steadily increased in Asian countries. Despite the rise in depression and stress among such caregivers, few studies have examined factors that may mitigate their emotional exhaustion. Methods: This research examines relationships between care responsibilities and emotional exhaustion, and the mediation effects of self-care on people in their 50s through 70s who provide care to multiple family members including children and elderly parents or relatives. The participants of this study were 183 people who were providing double care. The authors used care responsibilities as the independent variable, self-care as a mediator, and emotional exhaustion as the dependent variable. Results: Results indicate that care responsibilities significantly affect emotional exhaustion, and that emotional exhaustion is mediated by self-care. Conclusions: The findings suggest that attention to self-care may reduce emotional exhaustion among caregivers in this older age group.
Background: 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. Methods: For the present meta-analysis, studies comparing burnout in informal caregivers and non-caregivers were screened and included. Findings: 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. Conclusion: 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.
Background: Understanding the determinants of the intensity of informal care may assist policy makers in the identification of supports for informal caregivers. Little is known about the utilization of informal care throughout the palliative care trajectory. Aim: The purpose of this study was to analyze the intensity and determinants of the use of informal care among cancer patients over the palliative care trajectory. Design: This was a longitudinal, prospective cohort design conducted in Canada. Regression analysis using instrumental variables was applied. Setting/participants: From November 2013 to August 2017, a total of 273 caregivers of cancer patients were interviewed biweekly over the course of the care recipient’s palliative care trajectory. The outcome was the number of hours of informal care provided by unpaid caregivers, that is, hours of informal care. Results: The number of hours of informal care increased as patients approached death. Home-based nursing care complemented, and hence, increased the provision of informal care. Patients living alone and caregivers who were employed were associated with the provision of fewer hours of informal care. Spousal caregivers provided more hours of informal care. Patient’s age, sex, and marital status, and caregiver’s age, sex, marital status, and education were associated with the number of hours of informal care. Conclusions: The intensity of informal care was determined by predisposing, enabling, and needs-based factors. This study provides a reference for the planning and targeting of supports for the provision of informal care.
Background: Siblings often share in the care of parents with dementia, but little is known about how care is shared. Research suggests that in comparison with their brothers, sisters provide the majority of care to a parent with dementia and this can contribute to the sisters experiencing poorer health outcomes. There is limited knowledge about how to guide siblings who share in the care of a parent with dementia. Aim: Our qualitative descriptive study sought to explore the experiences of adult daughters sharing care responsibilities with their siblings. The study protocol was approved by institutional (University of Toronto and Baycrest Health Sciences) research ethics boards. Materials & methods: Thirty‐four daughters participated in an online qualitative survey. Data were analysed using Braun and Clarke's (Qualitative Research in Psychology, 3, 2006, 77) 6‐step process. Results: In an overarching theme, daughters expected shared caregiving with their siblings. They conceptualised this to be a practice of being equitable in dividing care responsibilities and fulfilling a supportive role for a parent with dementia; however, this expectation was not met by most daughters. Two subthemes were identified: (a) factors facilitating/constraining shared caregiving and (b) consequences of sharing care. The findings highlight the importance of understanding shared caregiving among siblings when caring for a parent with dementia. Discussion: Results from this study suggest that although shared caregiving is often the goal, factors such as gender roles, geographical proximity, caregiver expertise/skill set and work schedules affect caregivers' abilities to share caregiving. These factors affected whether daughters viewed the caregiving situation as being shared equitably or inequitably, and this led to feelings of acceptance or resentment of their sibling's contribution to the care of their parent. Conclusions: Healthcare providers can utilise these findings to better support adult–child caregivers negotiating care with their siblings.
Background: Population ageing, an emphasis on home-based care of palliative patients and policies aimed at prolonging participation in the labour market are placing a growing demand on working family caregivers. This study aimed to provide insight into experiences with combining paid work and family care for patients at the end of life, factors facilitating and hindering this combination, and support needs. Method: Semi-structured interviews were held between July 2018 and July 2019 with 18 working family caregivers of patients with a life-threatening illness who were living at home. Transcripts were analysed following the principles of thematic analysis. Results: Some family caregivers could combine paid work and family care successfully, while this combination was burdensome for others. Family caregivers generally experienced a similar process in which four domains — caregiver characteristics, the care situation, the work situation and the context — influenced their experiences, feelings and needs regarding either the combination of paid work and care or the care situation in itself. In turn, experiences, feelings and needs sometimes affected health and wellbeing, or prompted caregivers to take actions or strategies to improve the situation. Changes in health and wellbeing could affect the situation in the four domains. Good health, flexibility and support at work, support from healthcare professionals and sharing care tasks were important in helping balance work and care responsibilities. Some caregivers felt ‘sandwiched’ between work and care and reported physical or mental health complaints. Conclusions: Experiences with combining paid work and family care at the end of life are diverse and depend on several factors. If too many factors are out of balance, family caregivers experience stress and this impacts their health and wellbeing. Family caregivers could be better supported in this by healthcare professionals, employers and local authorities.
Presents an argument that one of the ways that we can more properly value family caregivers is by understanding that employment policies have implications for families’ and older adults’ well-being, and that policies targeted at families of all forms can affect the health, employment, and general well-being of the nation.
Background: The double role of caregiver-employee (CE) defines those workers who simultaneously serve as an informal, unpaid care provider for sick, disabled, or elderly relatives, and it is a situation that is on the increase in most western countries. Providing informal caregiving can lead to detrimental effects on emotional well-being and several physical and psychological diseases (e.g., caregiver-burden). CEs can suffer double discomfort (at work and at home), but, first of all, they can be exposed to a high level of home-to-work conflict (HWI). In this study, we analyzed the CE phenomenon in a typical Italian public company, where the mean age of workers is particularly high. Methods: An online questionnaire related to the perception of HWI, well-being, and discomfort at work (depression, emotional exhaustion, job engagement) in relation to the family load (none, parents with <12 children to care for, caregiver to other adults, or children and older adults to care for/old/children to care for employees) was answered by 1704 administrative workers. Results: More than 20% of our sample was included in the elder caregiver condition or in the double role or “sandwiched” condition with older adults and children to care for. The family load changed significantly between the different age groups: for workers aged between 55 and 64 years, the percentage was nearly 27%. CEs had higher levels of HWI and of personal and job discomfort and lower levels of engagement, when compared with non-CEs. Having “only” older adults to care for (the typical CE condition) was associated with having the most negative results. Conclusion: This study confirms and underlines the increasing number of CEs in western organizations and their higher levels of HWI, work disengagement, emotional exhaustion, and depression. As the general population and workforce experience increased “graying,” and many more workers become CEs out of necessity, stable caregiver-friendly workplace policies (CFWPs) should be developed.
Carers UK carried out an online survey between March and May 2019. A total of 8,069 carers and former carers responded to the survey – we have only included responses from the 7,525 people who are currently providing care in this report. Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. Of respondents to the survey:
As not all respondents completed every questions in the survey, a number of the figures given in this report, including those presented in this Appendix, are based upon responses from fewer than 7,525 carers. This, together with the sample sizes of different groups, should be taken into consideration when reading the results.
With increasing life expectancy, changes in family structure and, most recently, the relaxation of the hitherto strict family planning policies, understanding how mid-life individuals support multiple generations, particularly their older parents and younger grandchildren, is of increasing research and policy significance in China. This paper analyses data from the 2011 China Health and Retirement Longitudinal Study (CHARLS) to examine the characteristics of Chinese mid-life individuals aged 45–64 who are potentially being ‘sandwiched’ between providing care to older parents/parents-in-law and/or younger grandchildren (under age 16). Binary logistic and multinomial regression models shed light on the factors associated with providing support to one generation or multiple generations. The results highlight that amongst the Chinese mid-life sandwich generation, 58 per cent only provide care to their young grandchildren, 23 per cent only provide care to their parents/parents-in-law, whilst 15 per cent are simultaneously supporting both generations. Rather than acting as competing demands upon the mid-lifers’ time, the multivariate analysis provides evidence that the provision of intergenerational care is complementary, with caring for grandchildren increasing the probability of also supporting one's parents/parents-in-law, and vice versa. However, an increase in the number of younger grandchildren has a negative impact on the care provided to older parents/parents-in-law, indicating that at higher care intensities there may be competing demands across the generations.
Background and Objectives Although sleep is a critical health outcome providing insight into overall health, well-being, and role functioning, little is known about the sleep consequences of simultaneously occupying paid and unpaid caregiving roles. This study investigated the frequency with which women employed in U.S.-based nursing homes entered and exited unpaid caregiving roles for children (double-duty-child caregivers), adults (double-duty-elder caregivers), or both (triple-duty caregivers), as well as examined how combinations of and changes in these caregiving roles related to cross-sectional and longitudinal sleep patterns. Research Design and Methods The sample comprised 1,135 women long-term care employees who participated in the baseline wave of the Work, Family, and Health Study and were assessed at three follow-up time points (6-, 12-, and 18-months). Sleep was assessed with items primarily adapted from the Pittsburgh Sleep Quality Index and wrist actigraphic recordings. Multilevel models with data nested within persons were applied. Results Women long-term care employees entered and exited the unpaid elder caregiving role most frequently. At baseline, double-duty-child and triple-duty caregivers reported shorter sleep quantity and poorer sleep quality than their counterparts without unpaid caregiving roles, or workplace-only caregivers. Double-duty-elder caregivers also reported shorter sleep duration compared to workplace-only caregivers. Over time, double-duty-elder caregiving role entry was associated with negative changes in subjective sleep quantity and quality. Discussion and Implications Simultaneously occupying paid and unpaid caregiving roles has negative implications for subjective sleep characteristics. These results call for further research to advance understanding of double-and-triple-duty caregivers' sleep health and facilitate targeted intervention development.
Rising life expectancy has led to the growth of the ‘Sandwich Generation’ – men and women who are caregivers to their children of varying ages as well as for one or both parents whilst still managing their own household and work responsibilities. This book considers both the strains and benefits of this position.
The increasing worldwide prevalence and intensity of grandparenting has attracted an attention to its health implications for caregivers against the backdrop of population aging. Thanks to prolonged life expectancy and reduced infant mortality, extended families that comprise four generations, co-residential or not, are no longer rare in China. The current study examines health consequences when Chinese grandparents provide care to not only grandchildren but also their own elderly parents or parents-in-law (i.e., great-grandparents). Drawing on data from the 2011–2013 China Health and Retirement Longitudinal Study (CHARLS), mental health was captured by levels of life satisfaction and depressive symptoms, and physical health was measured by levels of high sensitivity C-reactive protein (CRP), hypertension, high-risk pulse rate, and diabetes. Overall grandparents who cared for grandchildren only had better mental and physical health, compared with non-caregivers. There was some evidence that the 'sandwich' grandparents who cared for both grandchildren and great-grandparents reported greater life satisfaction, fewer depressive symptoms, and reduced hypertension compared with non-caregivers. The health advantage of caregiving was most pronounced in urban grandfathers whose caregiving conformed to the norm of filial piety and who did so most likely to seek emotional reward instead of an intergenerational time-for-money exchange. In contrast, rural grandmothers were the most vulnerable group and their health disadvantage seemed to arise from caring for great-grandparents. These findings highlight the importance of rural-urban context and gender role in studying the health effects of intergenerational caregiving on Chinese grandparents. • About 30% of the Chinese elderly are grandparents in four-generation families. • The majority of them care for grandchildren, great-grandparents, or both. • Urban grandfathers enjoy health benefits from intergenerational caregiving. • Rural grandmothers suffer health risks from intergenerational caregiving.
Although job stress models suggest that changing the work social environment to increase job resources improves psychological health, many intervention studies have weak designs and overlook influences of family caregiving demands. We tested the effects of an organizational intervention designed to increase supervisor social support for work and nonwork roles, and job control in a results-oriented work environment on the stress and psychological distress of health care employees who care for the elderly, while simultaneously considering their own family caregiving responsibilities. Using a group-randomized organizational field trial with an intent-to-treat design, 420 caregivers in 15 intervention extended-care nursing facilities were compared with 511 caregivers in 15 control facilities at 4 measurement times: preintervention and 6, 12, and 18 months. There were no main intervention effects showing improvements in stress and psychological distress when comparing intervention with control sites. Moderation analyses indicate that the intervention was more effective in reducing stress and psychological distress for caregivers who were also caring for other family members off the job (those with elders and those "sandwiched" with both child and elder caregiving responsibilities) compared with employees without caregiving demands. These findings extend previous studies by showing that the effect of organizational interventions designed to increase job resources to improve psychological health varies according to differences in nonwork caregiving demands. This research suggests that caregivers, especially those with "double-duty" elder caregiving at home and work and "triple-duty" responsibilities, including child care, may benefit from interventions designed to increase work-nonwork social support and job control.
Despite rising legal claims, little research has examined discrimination against job applicants or employees because of their family caregiving responsibilities. Across three studies, we examine discrimination in hiring and starting salary decisions among equally qualified job applicants based on their elder, child, or sandwiched caregiving responsibilities. In study 1, primary caregiving parents were less likely to be hired, were offered lower salaries, and were rated as less competent, committed, available, and agentic, compared to non-primary caregiving parents. In study 2, primary child and elder caregivers were less likely to be hired and received lower salaries, and they were evaluated more negatively on job-related factors than non-caregivers, especially if they were female. In study 3, primary sandwiched caregivers (i.e., those responsible for both elder and child care) were less likely to be hired and were given lower salaries than primary child caregivers in a male-dominated job. Sandwiched caregivers were evaluated more negatively than other caregivers in both female- and male-dominated jobs.
Drawing from role theory, stress and coping, and caregiving literatures, this paper develops a model of family-role overload involving two forms of caregiver burden (subjective, objective) and two types of maladaptive changes in employee behavior (at work, personal), and hypothesizes that caregiver type (eldercare-only vs. sandwich) moderates all paths in the model. Partial Least Squares structural equation modeling (SEM) supported all hypothesized direct paths. Contrary to our hypotheses, data analysis showed two positive relationships (i.e., objective caregiver burden to family-role overload, family-role overload to maladaptive changes in personal behavior) were stronger for those in the eldercare-only sample than for those in the sandwich sample. Post hoc analysis revealed five significant gender differences in the relationships included in our model. This study contributes to work–family theory by reinforcing the need to consider both caregiver type and gender when researching the challenges faced by employees trying to balance work and caregiving.
Men in the United States are increasingly involved in their children's lives and currently represent 40% of informal caregivers to dependent relatives or friends aged 18 years and older. Yet much more is known about the health effects of varying family role occupancies for women relative to men. The present research sought to fill this empirical gap by first comparing the health behavior (sleep duration, cigarette smoking, alcohol consumption, exercise, fast food consumption) of men who only occupy partner roles and partnered men who also fill father, informal caregiver, or both father and informal caregiver (i.e., sandwiched) roles. The moderating effects of perceived partner relationship quality, conceptualized here as partner support and strain, on direct family role-health behavior linkages were also examined. A secondary analysis of survey data from 366 cohabiting and married men in the Work, Family and Health Study indicated that men's multiple family role occupancies were generally not associated with health behavior. With men continuing to take on more family responsibilities, as well as the serious health consequences of unhealthy behavior, the implications of these null effects are encouraging - additional family roles can be integrated into cohabiting and married men's role repertoires with minimal health behavior risks. Moderation analysis revealed, however, that men's perceived partner relationship quality constituted a significant factor in determining whether multiple family role occupancies had positive or negative consequences for sleep duration, alcohol consumption, and fast food consumption. These findings are discussed in terms of their empirical and practical implications for partnered men and their families.;
More than 1 million people who are caring for children and older relatives are at a significantly higher risk of mental health problems and more likely to be struggling for money than the general population, official data has revealed.
The “sandwich generation” who find themselves squeezed between older and younger dependents account for 1.3 million people, according to the Office for National Statistics (ONS). It found the more care people give to both older and younger relatives simultaneously, the more likely they are to report symptoms of mental ill health.
Aims To examine the dual caregiving and nursing responsibilities of nurses in New Zealand with a view to identifying potential strategies, policies and employment practices that may help to retain nurses with caregiving responsibilities in the workplace. Background As the nursing workforce ages, child-bearing is delayed and older family members are living longer, family caregiving responsibilities are impacting more on the working life of nurses. This may complicate accurate workforce planning assumptions. Method An explorative, descriptive design using interviews and focus groups with 28 registered nurses with family caregiving responsibilities. Results A depth of (largely hidden) experience was exposed revealing considerable guilt, physical, emotional and financial hardship. Regardless of whether the nurse chose to work or had to for financial reasons, family always came first. Conclusions Demographic and societal changes related to caregiving may have profound implications for nursing. Workplace support is essential to ensure that nurses are able to continue to work. Implications for nursing management Increased awareness, support, flexibility and specific planning are required to retain nurses with family caregiving responsibilities.
This article describes an examination of the sociodemographic characteristics of adult children, particularly Baby Boomer caregivers, who provide financial care to older parents with dementia. The sample including 1,011adult children dementia caregivers aged 50 to 64 years is selected from a nationally representative sample in the 2010 Health and Retirement Study. Exact logistic regression revealed that race, provision of financial assistance to caregiver children, and the number of their children are significantly associated with financial caregiving of parents. Non-White caregivers are more likely to provide financial care to their parents or parents-in-law with dementia; those who have more children and provide financial assistance to their children are less likely to provide financial care to parents with dementia. The current findings present valuable new information on the sociodemographic characteristics of adult children who provide financial assistance to parents with dementia and inform research, programs, and services on dementia caregiving.
Sandwich carers – those who care for both sick, disabled or older relatives and dependent children – are more likely to report symptoms of mental ill-health, feel less satisfied with life, and struggle financially compared with the general population.
Introduction: Health professionals were found to have an elevated burnout risk compared to the general population. Some studies also reported more emotional exhaustion - a component of burnout - for health professionals with informal caregiving responsibilities for children (double-duty child caregivers) or adults (double-duty adult caregivers) or a combination of both (triple-duty caregivers) compared to health professionals without informal caregiving roles (formal caregivers). However, the potential mediating effect of the work-privacy conflict in this relationship as well as differences between occupational groups have not yet been studied in healthcare settings.; Aim: To assess the impact of informal caregiving on burnout risk among health professionals and whether this relationship is mediated by work-privacy conflict or differs between occupational groups.; Methods: Data were collected through an employee survey in six hospitals from German-speaking Switzerland in 2015/2016. Mediation analyses were performed using linear mixed models with fixed effects for caregiving situation and work-privacy conflict as well as random effects for hospitals.; Results: Triple-duty caregivers were found to have a significantly higher burnout risk compared to formal caregivers only. Work-privacy conflict did not mediate this relationship, except among the "other health professionals" group.; Conclusion: Additional and large-scale studies focusing on the combination of formal and informal caregiving roles are needed to better understand its effect on burnout among healthcare professionals and to evaluate the role of work-privacy conflict.;
Introduction: Indian families are known for adopting the role of caregiver naturally when someone in the family falls ill to cancer. Although there were strong family structure and system existed here, now the changing family pattern and structure are challenging the role of cancer caregiving as well. Objective: This study analyses the life situation of caregivers of cancer survivors during the course of treatment and attempts to explore the areas of interventions for caregivers themselves. Methods: A descriptive research design was adopted for the study. A sample of 40 respondents was chosen for the study through purposive sampling technique. Results: Majority of the caregivers were females (75%) and fell into the age group of 35 to 45 years (65%). The education among the caregivers was varying between illiteracy to postgraduation. Majority of 95% of them adapted the dual role voluntarily and 85% of them felt that they were finding it very difficult to cope with the dual responsibility. About 60% of them felt that they would fail in their roles and were not satisfied with their performances dually. Conclusion: Adaptation to a dual role involves time factor and as part of care to the caregiver, a guided interaction and orientation towards managing these roles would help them better ways to adapt. Given the scarcity of support system on Indian settings, the caregivers who do dual role have huge responsibility and challenges to deliver quality caregiving and fulfill their other roles as well. It is the duty of the complete health care system to seriously take this into consideration and to act on it.
In some cases, parents caring for an adult child with an intellectual and/or developmental disability (IDD) must balance this with caregiving for another family member. This dual responsibility, referred to as 'compound caregiving', may contribute to increased feelings of distress, or change their perceived ability to care for their child. The current study examined how compound caregivers differ from other parents of adults with IDD, and whether compound caregiving is significantly associated with family distress. Data was available for 199 parents aged 38 to 91 years who were seeking adult services for their son or daughter with IDD. Parents completed a mailed questionnaire and telephone interview in which they indicated compound caregiver responsibilities. Parents identified as compound caregivers were then compared to those who were not in terms of family characteristics, as well as parental perceptions of burden and mastery, and family distress as measured by the Revised Caregiver Appraisal Scale and the Brief Family Distress Scale, respectively. Nearly half of the parents reported being compound caregivers. The demographic profile of these parents was no different from that of the other parents but their children were slightly younger. Compound caregiving was significantly associated with parental perceptions of burden and mastery and family distress. Demands outside of caring for an adult child with IDD can negatively influence family functioning and must be included as part of caregiving assessments.
The term sandwich generation refers to the middle-aged generation who are responsible for caring elderly parents and dependent children. This situation is worse in case of working women who have job obligations along with family responsibilities. Therefore, this study is aimed to investigate level of the four-dimensional work-family conflict among working women of the sandwich generation. This cross-sectional study was conducted among 90 Malaysian working women using self-reported data. Multiple-stage simple random sampling was used to recruit women from public service departments of Malaysia. Self-administrated questionnaires were used for data collection. Data were analyzed using SPSS version 21. One-third of our respondents (33.3%) are members of sandwich generation who simultaneously provide care to elderly parents and children. However, 66.7% of women in this study are caregivers for either elderly parent or their children. The results of t-test showed that level of time-based FIW was significantly (t = − 2.02, p < 0.05) higher in sandwich generation members (Mean = 12.33, SD = 1.95) compared to women caring for either parent or children (Mean = 11.25, SD = 2.58). The results of Multiple linear regression indicated that membership in sandwich generation significantly predict (b = 0.26, p < 0.05) FIWt after controlling for the effect of socio-demographic variables. Our findings showed that women who simultaneously take care of both elderly parent and children significantly experience higher level of time-based Family Interference into Work (FIWt). In contrast, membership in sandwich generation was not related to higher level of time-based Work Interference into Family (WIFt).
Data from the National Longitudinal Survey are used to estimate the number and characteristics of women 45 to 56 years old who care for both their children and their parents; these women transfer a significant amount of money to their children and time to their parents.
Despite its familiarity, the realities of care are both complex and contested. This book offers a unique approach to scrutinising the co-existence of both care and abuse in relationships. It demonstrates ways of increasing critical reflexivity when working with people involved in difficult care relationships. The book emphasises that when talking about care, we need to care about talk. Discourse analysis is introduced as a method of investigating relationships, policy and literature in informal care. Analytic tools are considered alongside case studies to illustrate how both carer and caree construct their relationship and account for difficulties with each other. The book addresses key questions, including: What can we learn by muddying the false polarities between `care/abuse' and `carer/caree'? How do carers and carees use life histories to explain troubled relationships? What can discourse analysis add to how we make sense of individual carer/caree accounts? How can health and social care practitioners [...]
Lifelong couple Brian and Olive live in specialist supported accommodation. Brian has been Olive’s carer since she developed dementia. The housing complex where they live is managed as a community in which each individual is valued for the contribution they can make. The manager explains how important it is for carers as well as the person with dementia to maintain their individual identity and role as partner. The value of having a flexible, responsive individual care plan is also emphasised in the film. Richard, whose mother has dementia, explains how important it was for his mum and dad to be able to stay living together, even when his mum’s needs increased. The film concludes by stating that having well trained and selected staff is vital for achieving personalisation.
Purpose of the Study: Findings are reported from a study that examined the effects of the Tailored Caregiver Assessment and Referral (TCARE®) protocol, a care management process designed to help family caregivers, on care planning and caregiver outcomes. Design and Methods: A longitudinal, randomized controlled trial was conducted with 97 caregivers enrolled in a demonstration project in Georgia. Data included on care plans pertaining to service recommendations, compliance, and use were reviewed. Caregiver identity discrepancy, objective burden, relationship burden, stress burden, and depressive symptoms were assessed up to 4 times during a 9-month observation period. Chi-square tests, independent samples t tests, random effects regression growth curve analysis, and random intercept regression analysis were conducted. Results: A greater variety of services were recommended to and used by caregivers in the intervention group than in the control group. Caregivers in the intervention group had lower caregiver identity discrepancy, stress burden, and depressive symptoms over time than caregivers in the control group. Implications: Study findings provide initial support for the merits of the TCARE® protocol as a process that can be used to effectively target services to individual caregivers’ needs.
Investigations into the act of proving care to a dementing family member typically approach the phenomenon from a stress/burden paradigm. Many studies have sought to highlight the relationship between of a range of dementia care factors (such as illness duration, patient symptoms/characteristics, service provision, etc.) and the experience of caregiver stress. Caregiving a spouse with dementing illness is complex and multidimensional (Gubrium, 1995) it is therefore not surprising that the vast majority of stressor-based approaches, though very revealing, have been largely equivocal in their findings. The relationship between the social support of family and friends and caregiver coping is no exception and therefore remains essentially unclear particularly in terms of its contribution in ameliorating stress (Thompson et al, 1993). Caregiver studies do however consistently highlight the pathogenic qualities of coping with an experience in which 'families are faced with often overwhelming and uncontrollable stress than can take a toll on their emotional health and well-being' (Zarit et al, 1998; Bourgeois et al, 1996). This article, emanating from a PhD study into caregiver coping (Upton, 2001), illuminates the study of caregiving from a different perspective. It highlights and describes how phenomenological exploration deepens our understanding of how and why spouse caregivers cope and uses the influence of social support as an exemplar of the value and need for such exploration both for its own sake and also to inform service providers. The results revealed a universal phenomenon of psycho-physical distancing by family and friends affecting all forty-six spouse caregivers included in this study. The implications of these finding are discussed along with what constituted social support for these carers. Other phenomenological insights are revealed, not least how the individual caregiver's relationship to time, space and their own identity shaped their caregiving experiences.
An increasing demand for both formal and informal care is likely to result from the ongoing demographic transition at the same time as there is a further move away from the traditional domestic division of labour. Public policy-making that aims at increasing the supply of informal care necessitates knowledge about the relative importance of various incentives for individual care providers. This paper takes as a point of departure that the willingness to supply informal care is partly explained by the extent to which it adversely affects labour-market outcomes and analyses the effect on labour-market outcomes of providing informal care to one's elderly parent(s) among the 50+ of Europe. Data from SHARE (Survey of Health, Ageing, and Retirement in Europe) was used to examine the association between, on the one hand, hours of informal care provided and, on the other, (1) the probability of employment, (2) hours worked, and (3) wages, respectively. The results suggest that giving informal care to one's elderly parents is associated with significant costs in terms of foregone labour-market opportunities and that these adverse effects vary between countries.
The ‘sandwich generation’ has been conceptualised as those mid-life adults who simultaneously raise dependent children and care for frail elderly parents. Such a combination of dependants is in fact very unusual, and the more common situation is when adults in late mid-life or early old age have one or more surviving parents and adult but still partly dependent children. It can be hypothesised that for parents in this pivotal position, the demands from adult children and from elderly parents compete, with the result that those who provide help to one are less likely to provide help to the other. An alternative hypothesis, however, is that family solidarity has an important influence but is not universal, so that some pivotal-generation parents engage in intergenerational exchange in both directions, and there is a positive association between helping parents and helping children. To investigate this question, the paper presents an analysis of data from two broadly comparable national surveys, in Great Britain and the United States, on the care provided by women aged 55–69 years to their descendent and ascendent relatives. The results show that around one-third of the women reported providing help to members of both generations, and that around one-fifth provided support to neither. They broadly support the solidarity hypothesis, but provide some evidence that having three or more children is associated with a reduced likelihood of providing help to a parent.
In July 2010, the Department of Health published a call for views on the key priorities, supported wherever possible by evidence of good practice that will have the greatest impact on improving carers’ lives in the next four years. In total, 764 responses were received. This strategy document identifies the actions that the Government will take over the next four years to support its priorities to ensure the best possible outcomes for carers and those they support, including: supporting those with caring responsibilities to identify themselves as carers at an early stage, recognising the value of their contribution and involving them from the outset both in designing local care provision and in planning individual care packages; enabling those with caring responsibilities to fulfil their educational and employment potential; personalised support both for carers and those they support, enabling them to have a family and community life; and supporting carers to remain mentally and physically well.
Informal carers underpin community care policies. An initial cohort of 105 informal live-in carers of new stroke patients from the South Coast of England was followed up before discharge, six weeks after discharge and 15 months after stroke with face-to-face interviews assessing physical and psychological health, and social wellbeing. The carer cohort was compared to a cohort of 50 matched non-carers over the same time period. Carer distress was common (37–54%), started early on in the care-giving experience and continued until 15 months after stroke. Carers were 2.5 times as likely as non-carers to have significant psychological distress. Presence of early distress predicted 90% of those significantly distressed 15 months after stroke. Female carers were likely to develop distress earlier than male carers and in anticipation of the care-giving situation. Male carers developed similar levels of distress but only once the care-giving situation became reality. Further research is needed to establish ways to screen for psychological distress early after onset of caregiving, to find ways to tailor proven support interventions to the individual carer, and to evaluate the effect of early detection and support provision on later carer distress.
This report presents the findings of a survey exploring the challenges of raising young children alongside supporting older parents or disabled family members. The findings of the survey included that: only 12% of sandwich carers felt they were juggling everything well, over four in ten (42%) were struggling to cope or at breaking point; three quarters (74%) said that caring for both children and older or disabled loved ones had a negative impact on their ability to earn; over two thirds (69%) said they had seen a negative impact on their ability to afford household bills; almost two thirds (63%) said that sandwich caring had taken a toll on their relationship with their spouse or partner; seven in ten (69%) had seen their friendships suffer; and only half of sandwich carers surveyed were able to juggle work and care. The experiences of sandwich carers set out in this report demonstrate that, without support, the pressure of combined caring responsibilities can take a serious toll on families’ health, finances, careers and relationships.
The importance of informal carers has only been partially recognised in the UK. A brief examination of recent policy such as the UK Carers Act will highlight the need for further action in this area. The conceptual debate about ‘what is caring’ is summarised: does it involve physical activities only? Are emotional elements also involved? The significance of the informal caregiver's role is discussed. Informal caregiving can bring rewards, but it often has to coincide with other equally demanding roles including employment. Moreover, psychological distress is common among informal carers generally, and the likelihood of poor psychological well-being is greater in carers of people with dementia compared with relatives of older people without dementia. The need to ‘care for carers’ is discussed. Many interventions aimed at caregivers are inadequate, and the optimum type of intervention may vary depending on the needs of the individual carer. Wider social and demographic changes may jeopardise the informal caring network, as it currently exists. Should our ‘invisible’ carers become unwilling, or unable, to sustain their caring role then the consequences could be bleak.
The success of 'ageing-in-place' aged care policy in Australia relies heavily on the unpaid work of informal carers. While there is a wealth of research regarding informal carers more generally, we know relatively little about the experiences of the 'sandwich generation': Adult children (mainly daughters) who provide care for a parent while often juggling paid work and the care of their own children or grandchildren. In this paper I undertake a critical analysis of 'ageing-in-place' policy through the lens of 'sandwich generation' carers of people with dementia. Drawing from a composite case study, I argue that these carers are located at the interstices of powerful discourses such as 'individualisation' and 'care' and explore how the everyday practice of care is negotiated within these spaces. Inhabiting these spaces can be costly for carers and we need to consider how policies can better support intergenerational carers if 'ageing-in-place' is to be sustainable.
Background: Support groups have proved to be effective in reducing the burden on family caregivers of dementia patients. Nevertheless, little is known about the factors that influence utilisation or quality expectations of family caregivers. These questions are addressed in the following paper.
Methods: The cross-sectional study was carried out as an anonymous written survey of family caregivers of dementia patients in Germany. Qualitative and quantitative data from 404 caregivers were analysed using content analysis and binary logistic regression analysis.
Results: The only significant predictor for utilisation is assessing how helpful support groups are for the individual care situation. Family caregivers all agree that psycho-educative orientation is a priority requirement.
Conclusions: In order to increase the rate of utilisation, family caregivers must be convinced of the relevant advantages of using support groups. Support groups which offer an exchange of experiences, open discussion, information and advice meet the requirements of family caregivers.
The video explores how service user and carer participation has become an increasingly important part of how adult social care services are developed and delivered. The video uses the example of how Manchester adult social care services are involving service users and carers. The film highlights the jigsaw model of participation, this connects four aspects of participation: Culture, Structure, Practice and Review. For further details about the jigsaw model see SCIE Guide 17. Participation operates at many different levels, from individual care packages to service design and commissioning. Any organisation wishing to develop meaningful participation must first develop a positive attitude towards the process. The process of meaningful participation can represent a real change from the previous process of service delivery and can help with the Putting People First agenda. There is a need to embed the idea of participation through all levels of social care. Service users and carers must feel that they have a stake in the service they receive.
This article investigates care provided to parents and parents-in-law by mid-life adults with dependent children at home. Data from the General Household Survey are used first to estimate the prevalence of this 'two-way' care over the past decade, and second to develop forecasts of two-way care for a generation of women who have just finished their childbearing years. Having a higher education qualification is associated with later ages both of caring for parents and of having children at home. Increasingly late first childbearing, however, points towards a potentially greater caring 'squeeze' for higher qualified women, with a little over one in ten at age 45 projected to be caring for a parent while still having a child under 18 in the household.
We analyse the impact of the provision of care on the health and quality of life (QoL) of adult female informal caregivers using a representative sample drawn from the survey of health, ageing and retirement in Europe (SHARE). We match each informal caregiver with a non-carer using propensity score matching and test whether matched individuals differ on self-assessed health and a functional indicator of QoL and whether this relationship differs across European regions. We find a North–South gradient both for self-assessed health and QoL, and our results show that the provision of caregiving to close relatives in Europe impacts on the caregivers’ QoL and health in a way that depends on their geographical location, the degree of formal care and specific cultural and social factors of the area. We find that informal caregiving is a complex phenomenon which may bring both psychological rewards and distress to providers of care and this complexity, along with the geographical gradient highlight the importance of ensuring that policies match the needs of individual carers in their own geographical areas and cultural contexts.
Background Nearly 50 million Americans provide informal care to an older relative or friend. Many are members of the "sandwich generation", providing care for elderly parents and children simultaneously. Although evidence suggests that the negative health consequences of caregiving are more severe for sandwiched caregivers, little is known about how these associations vary by sociodemographic factors. Methods We abstracted data from the Behavioral Risk Factor Surveillance System to determine how the association between caregiving and health varies by sociodemographic factors, using ordinal logistic regression with interaction terms and stratification by number of children, income, and race/ethnicity. Results The association between informal caregiving and health varied by membership in the "sandwich generation," income, and race/ethnicity. This association was significant among subjects with one (OR = 1.13, 95% CI [1.04, 1.24]) and two or more children (OR = 1.17, 95% CI = 1.09, 1.26]), but not in those without children (OR = 1.01, 95% CI [0.97, 1.05]). Associations were strongest in those earning $50,000-$75,000 annually, but these income-dependent associations varied by race/ethnicity. In Whites with two or more children, the strongest associations between caregiving and health occurred in lower income individuals. These trends were not observed for Whites without children. Conclusions: Our findings suggest that the added burden of caregiving for both children and elderly relatives may be impacted by income and race/ethnicity. These differences should be considered when developing culturally appropriate interventions to improve caregiver health and maintain this vital component of the US health care system.
Introduction The multi-faceted nature of Huntington's disease (HD) presents an argument for professionals to work in close collaboration with care givers in training and service provision. It is argued that there is a case to further develop services where part of the required care is jointly delivered by professionals and carers at the same clinical setting. This will enhance mutual understanding of the scientific and clinical aspects of HD together with specific individual needs. While professionals are at risk of overgeneralization and ‘stereotyping’ patients, carers find it difficult to disentangle HD from the ‘person’ behind it. It is also sometimes difficult for carers to utilize the outcome of various assessments therapeutically to benefit their loved ones and ‘lighten up’ their care giving burden. Our model Carers are usually invited to give formal talks to the team and trainees. A carers’ representative is always invited to service development meetings. That person does also act as a mediator seeking other carers’ views and communicating any concerns to managers. Similarly, our team members are regular attendees to the local support group meetings. This is not only for educational purposes but also to communicate and seek views on service changes. Team members did joint publications with carers. In the context of our inter-disciplinary clinic, a carer is always available at the waiting area explaining to patients what they should expect. She also provides information about the disorder and the role of the support group using a variety of posters and leaflets. Many carers take the opportunity to discuss their concerns; often raising different matters with ‘a fellow carer’ than with other team members. She will then attend part of the meeting after the clinic to feedback on how the clinic was run. Further, that carer spends time with trainees who find talking to a carer with a firsthand experience of HD quite enlightening. They are then able to appreciate the consequences of this disorder on family dynamics. They also have a better understanding of how scientific and clinical information be personalized to help patients and families. Conclusion The value of involving carers in shaping services and tailoring individual care plans as well as training junior clinicians cannot be over estimated.
In the past 20 years there has been considerable growth in the provision of palliative care services. The shift in emphasis from hospice and hospital care to the development of community services has been significant. This enables people to be cared for at home and is in keeping with Government agenda. While this may be beneficial for the patient and fit in with the wishes of the family, it is likely to put heavy demands on the coping resources of individual carers. The views of service users are of paramount importance when discussing service evaluation and patient, family and carer empowerment. This research presents the findings of an evaluation of the domiciliary occupational therapy service provided for patients in the palliative stage of cancer care in North and West Belfast from the perspective of the patients and carers. For the purpose of this study, the palliative stage of cancer care is defined as the point from which the patient is no longer responsive to curative treatment, until death. A sample of 30 patients and their primary informal carers were selected using purposive sampling. A structured interview was carried out with both the patients and their carers to obtain views. Results suggest that although both patients and their carers value the service provided and report high levels of satisfaction, there are gaps identified in service provision and a lack of clear information among patients and their carers about the role of the occupational therapist and the range of services they can provide. There is a need to build upon the good work being done by domiciliary occupational therapists in the area of palliative cancer care and increase education and resources to ensure that a patient-centred, holistic, approach to care is used, addressing both the needs of the patient and their carers.
This strategy identifies the actions that the UK Government plans take over the next four years to ensure the best possible outcomes for carers and those they support. Over the summer of 2010, the Department of Health sought views on what these priorities should be. Over 750 responses were received, representing the views of over 4,000 carers. These views are summarised in an Annex and quotes from respondents are included in the strategy. Key messages included: the need for better and timely access to health, social care and financial information; often feeling excluded by clinicians; finding accessing assessments overly bureaucratic and slow; feeling forced to give up work to care; neglecting their own health and well-being; the need breaks from caring; the value of Carer’s Allowance is considered inadequate; and more needs to be done to identify and support young carers. Four priority areas have been identified for the strategy: supporting those with caring responsibilities to identify themselves as carer
Proposals for councils to register adult placement schemes will come as a relief to individual carers who will be spared the regulatory load. Anabel Unity Sale looks at why change is necessary and asks whether it will improve practice. [Introduction]
INTRODUCTION: Informal caregivers are important resources for community-dwelling frail elderly. But caring can be challenging. To be able to provide long-term care to the elderly, informal caregivers need to be supported as well. The aim of this study is to review the current best evidence on the effectiveness of different types of support services targeting informal caregivers of community-dwelling frail elderly. METHODS: A systematic literature search was performed in Medline, PsychINFO, Ovid Nursing Database, Cinahl, Embase, Cochrane Central Register of Controlled Trials and British Nursing Index in September 2010. RESULTS: Overall, the effect of caregiver support interventions is small and also inconsistent between studies. Respite care can be helpful in reducing depression, burden and anger. Interventions at the individual caregivers' level can be beneficial in reducing or stabilizing depression, burden, stress and role strain. Group support has a positive effect on caregivers' coping ability, knowledge, social support and reducing depression. Technology-based interventions can reduce caregiver burden, depression, anxiety and stress and improve the caregiver's coping ability. CONCLUSION: Integrated support packages where the content of the package is tailored to the individual caregivers' physical, psychological and social needs should be preferred when supporting informal caregivers of frail elderly. It requires an intense collaboration and coordination between all parties involved.
Background: Informal carers play an important role in supporting people with long-term conditions living at home. However, the caring role is known to have adverse effects on carers such as poorer emotional health and social isolation. A variety of types of respite may be offered to carers but little is known about the benefits of respite, carers’ experiences with it, or their perceptions of care workers. This study therefore investigated these experiences and perceptions.
Method: Recorded, semi-structured interviews were undertaken with twelve carers receiving weekly four-hourly respite. Carers were either caring for a person over sixty or were over sixty themselves. Interviews were analysed thematically.
Results and Discussion: Respite sometimes alleviated carers’ constant sense of responsibility for their cared for. Trust, whether in the service provider or individual care workers, was essential. Carers lacking this trust tended to perceive respite as less beneficial. Low expectations were common with carers often unwilling to find fault. Care workers were frequently seen as very kind with some carers valuing their company. Care workers who were flexible, communicated well and responded to the cared for’s needs were valued. Stimulation of the cared for during respite was very important to most carers but the perceived benefits for carers were often very individual. Many carers used respite to catch up with routine, domestic tasks, rarely using it to socialise.
Conclusions: For many carers, respite was a way of maintaining normality in often difficult, restricted lives. Respite allowed continuation of what most people take for granted. Carers frequently viewed respite as intended to improve their cared for’s quality of life, rather than their own. This centrality of the cared for means that carers can only really benefit from respite if the cared for is happy and also seen to benefit. Future research should investigate the perspectives of carers and their cared for, focussing on different demographic groups by features such as age, gender, ethnicity and diagnostic groups. However, without greater clarity about what respite is intended to achieve, clear evidence of a positive impact of this intervention may remain difficult to identify.
Background: Job satisfaction and quality of life among home care workers who serve simultaneously as informal carers for their own family members have seldom been explored. This study examined how this dual role influences job satisfaction and quality of life by comparing these dual carers with home care workers who do not provide informal care. The study also explored whether the factors related to job satisfaction and quality of life between these two groups were different.
Method: Standardized self-administered questionnaires (Job Satisfaction Survey, the World Health Organization Quality of Life (WHOQOL) scales and various social demographic questions) were administered to the two groups of home care workers in Taiwan from March to April 2009. A total of 1,641 home care workers working in 119 non-government organizations sponsored by 23 local authorities completed and returned the questionnaires.
Results: The two groups did not differ in individual characteristics, work characteristics or job satisfaction. Analysis results indicate that the lowest mean scores for all home care workers were the domains of promotion and pay within their job satisfaction and the domain of environment within their quality of life.
Conclusions: Multiple regression analysis revealed a significant effect of unpaid caregiving in terms of quality of life but not in terms of job satisfaction. Moreover, job satisfaction and quality of life among home care workers were significantly determined by both their work conditions (e.g. travelling time, salary and length of work experience) and personal variables (e.g. age, family income and family support).
The use of respite services by carers has been shown to extend the length of time people with dementia can remain living in the community with family support. However, the use of respite services by informal carers of people with dementia is often low and does not appear to match carer need. To better understand how to address carers' unmet need for respite, the factors that impede respite service use must be identified. To achieve this, a narrative synthesis of published academic literature (1990–2011) was undertaken regarding factors associated with not utilising different types of respite services utilising Anderson's Behavioural Model of Service Use. The review reinforces the importance of the assessment and matching of services to the needs of individual carers and care recipients at the local level. It also highlights the need to move beyond care pathways for individuals. To support respite use there is a need for local action to be augmented at a community or population level by strategies to address attitudinal and resource barriers that influence sub-groups of the carer population who may be more vulnerable to service non-use.
Objectives: The aim of this review is to discuss how existing models of information behaviour may help to improve provision of information to carers of people with dementia. The article analyses existing models of information behaviour derived from information science, describes studies that have examined these models in relation to health and discusses ways in which they help to understand the information behaviours of carers of people with dementia.
Methods: A comprehensive review of the literature on studies of information needs and a critical examination of models of information behaviours in relation to health were undertaken.
Results: Two dominant paradigms in information science research were identified, involving system-centred and user-centred approaches. System-centred approaches and studies are limited in that they have made assumptions on the types of information that people may require, the way in which information should be provided, the timing of information provision and have homogenous treated groups, failing to take account of individual preferences. In contrast, user-centred approaches recognise the unique needs of individuals and that information needs are subjective and affected by a variety of factors. User-centred models of information behaviour, particularly Dervin's sense-making theory and Wilson's Information Seeking Behaviour Models, could be useful in developing a better understanding of the information behaviours of carers of people with dementia.
Conclusion: Adopting a user-centred approach to study the information behaviours of carers of people with dementia will take account of individual needs. Testing existing models of information behaviour within this group may help to develop interventions to meet the needs of individual carers and people with dementia.
This article reports research funded as part of the recent ESRC Growing Older initiative. The project ‘Family, Work and Quality of Life’ explored changes in economic and social roles across four birth cohorts passing through mid-life (45–59/64 years) in Britain. The relationship between multiple role responsibilities and a range of indicators of quality of life, including material resources, health and engagement in social activities were investigated. The research was based upon secondary analysis of four different surveys: the 2000 British Household Panel Study, the 1994–95 Family and Working Lives Survey, the 1985, 1990, 1995, and 2000 General Household Surveys, and the longitudinal Retirement Survey (1988/89 and 1994). A particularly interesting finding is that being ‘caught in the middle’, in terms of having simultaneous care-giving responsibilities to dependent children and frail parents whilst in paid work, has been atypical. Only one-in-nine British women, and one-in-ten British men, aged 45–49 years (born in 1941–45) occupy all three roles concurrently, but multiple role occupancy is increasing across cohorts, particularly the combination of caring and paid work. Role occupancy significantly affects the accumulation of pension entitlements (particularly second-tier pensions), with the effect that many women who have fulfilled the important social roles of carer and parent will face a low income in old age. Where adverse health outcomes were found, parental role in mid-life was most frequently associated with such poor health, suggesting that continued parental demands in mid-life may have negative health consequences.