A longitudinal study on public policy and the health of in-house caregivers in Europe

Caregiving has negative effects on the health of informal caregivers. The current aging of the population predicts an increase in the number of informal caregivers worldwide. The effect of available public policies that support informal caregivers in their self-perceived health is an understudied topic. We analyzed the differences in the effects of public support policies in 11 European countries using longitudinal data from waves 5 and 6 of the Survey of Health Ageing and Retirement in Europe. In this cohort, 2303 respondents were in-house informal caregivers. Logistic regression models were fitted adjusting for the main determinants of caregiving. Respite care and caregiver allowances emerged as the most effective measures of support for caregivers’ health maintenance (relative risk [RR] = 0.2; 95 % CI = 0.1?0.8 and RR = 0.5; 95 % CI = 0.3?0.9). Despite the differences in the welfare systems of Scandinavian and Mediterranean countries, informal caregivers in these countries were less likely than those living in Continental or Eastern countries to have declined health two years later. Our results indicate that public support policies are significantly related to caregivers’ subsequent health, but the effects vary by country. Country-specific studies should be performed to take into account the determinants of caregiving linked to the social context of each country.     

Evaluation of gender differences of family caregivers with reference to the mode of caregiving at home and caregiver distress in Japan

PURPOSE: Male caregivers are growing in number, as the frequency of spouse caregiving rapidly increases. This study aimed to examine gender differences in family caregivers with reference to the mode of caregiving and caregiver distress in Japan. It was designed to clarify the characteristics of both female and male caregivers. METHODS: The subjects were 2,020 users of public Long-term Care Insurance, randomly stratified and sampled in Higashi-osaka city, Osaka prefecture. Data were collected through mailed, anonymous self-report questionnaires. 1,287 (63.7%) surveys were collected and data from 868 caregivers and care recipients were analyzed, after excluding incomplete cases from 947 participants who were family caregivers. We compared males and females for the level of nursing needs, cognitive disorders of their care recipients, the types and amounts of care provided, the levels of their burdens and the depression associated with providing care, the availability of informal support, the frequency of usage of Long-term care insurance services, and the types of stress coping strategies. RESULTS: Of the total, 27.1% of the caregivers were male. Their age was higher than that of females, but the age of care recipients of female caregivers was significantly higher than that of care recipients of males. There were no significant gender differences in the level of nursing needs of recipients. However, cognitive disorders of care recipients of female caregivers were more severe. Female caregivers spent more time providing care, and performed a greater number of care activities. In particular, female caregivers assisted their care recipients in taking medications, dressing, bathing, eating, meal preparation, shopping, laundry, and money management more often to a significant degree. Furthermore, the average scores for burden and depression were higher in female than in male caregivers. Concerning the usage of Long-term care insurance services, males used a Home-helper service more often. Female caregivers used types of Informal support seeking and Positive acceptance of caregiving role as coping strategies more often than the men. Multiple logistic regression analysis indicated that caregiver's subjective burden and types of informal support seeking, as well as acceptance of the caregiving role were significantly higher in female caregivers. CONCLUSIONS: These results suggest that there are significant gender differences regarding the mode of caregiving and experience of caregiver distress in Japan. It is important that future research be focused on supplying appropriate social support for family caregivers, taking gender differences into account.     

Measurement challenges of informal caregiving: a novel measurement method applied to a cohort of palliative care patients

Informal caregiving is a complex concept, and inconsistencies are found in the literature regarding how to measure it. The differences in tasks included in the definition of caregiving, as well as the different methods used to measure caregiving time may explain the huge variations in results found in the literature. The current paper aimed to lay out the challenges of how to calculate the time spent by informal caregivers on providing care and assistance to an ill person at home. It also proposes a method for measuring informal caregiving time, which attempts to distinguish between "normal" activities and "caregiving" activities. The proposed measurement method is then applied to a cohort of informal caregivers of palliative care patients. The illustration study revealed that this method brought advantages comparatively to other methods, and that persisting challenges remain in measuring informal caregiving time. We conclude that, the estimate of time spent caregiving for palliative care patients may be useful in guiding support programs for the families taking care of a loved one at home during the palliative phase of care.     

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

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

The influence of culture on home-based family caregiving at end-of-life: a case study of Dutch reformed family care givers in Ontario, Canada

Families are facing increased pressure to provide care to their terminally-ill or dying kin in the home. It is known that balancing care with other personal and social roles can adversely affect family caregivers’ (FCGs) health, yet access to supportive services which can mitigate burden is often inadequate. Cultural factors are known to shape the experience of caregiving; however, most research to date tends to neglect the experiences of FCGs from different cultural groups. This understanding is necessary to ensure that supportive services are both meaningful and culturally-appropriate. Using qualitative methods, we undertook longitudinal research with a sample of Dutch Reformed FCGs (n = 5) to understand their experiences of caregiving and bereavement. The results of the study are suggestive of a cultural specificity with respect to caregiving that impacts both responsibilities and reactions to care. Three themes were salient to this group as a cultural entity: cultural attitudes towards care, religious beliefs and coping, and culturally-informed care-seeking behaviours. These three themes were seen to be a function of their religious and ethnic identities and were reinforced by ties to the communities in which they resided. Cultural identity provided a framework through which to understand and make sense of the experience, while group membership provided access to networks of informal support. This research contributes to the geographical literature on care/caregiving by providing insight into the social, cultural and religious context of informal family caregiving with a population who live in close geographic proximity. On a practical level, this case study indicates the importance of considering how these factors may operate in other settings in order to implement timely and appropriate interventions to better support FCGs who are caring for their terminally-ill loved-ones at home.     

Who's there and who cares: age as an indicator of social support networks for caregivers among people living with motor neurone disease

This paper explores the social support networks available to the informal carers of people living with motor neurone disease (MND). An ethnographic case study was undertaken using eco mapping, observation and conversational interviews to collect data from 18 primary carers of people living with MND. Interviews took place in participants' homes in metropolitan, regional and rural locations. Participants discussed the content of their support network and drew lines between individuals to indicate the type and strength of relationship. Changes to the network were depicted on eco maps during subsequent interviews. While health policy-makers assume that healthy social capital exists in Australian communities and that social cohesion will ensure active and available support networks in times of illness or disability, data from this exploratory study indicated that this was not consistently the case. Support networks varied in size and composition; however, age was identified as a discriminator of the availability and consistency of support. People in older age groups identified more diverse but consistent support systems while people in younger age groups reported more fluctuations in the strength of relationships and declines in support as caregiving became more demanding. Individual assessment of support networks at regular intervals in the caregiving trajectory is vital for all carers. However carers in younger age groups may need specific support to manage the psychological crises that occur and more access to paid care. Older carers may need consistent support to handle more of the instrumental aspects of care and assistance to mobilise their support networks. Community workers should be alert to the possible need for crisis intervention when tensions in relationships threaten carers' ability to provide effective care.     

The system of informal caregiving as inequality

In our setting, it is families, not the health and social services, who play the greatest role in providing continuous care to persons in need of such services. Informal health care poses two key questions with regard to the issue of equity: differences in the burdens borne by men and women, which contribute to gender inequality and, depending on their educational and socio-economic level, inequities in their ability to choose and gain access to needed resources and support services, thus contributing to social class inequalities. Distributing the burden of caregiving between men and women, and between the family and the state, constitutes a crucial debate in public health. This study analyzes the concept and characteristics of informal care, provides data on its dimensions in our setting, and analyzes the profile of caregivers, as well as the work they do and the impact it has on their lives. Finally, it presents currently existing models and support strategies for informal caregivers. It is largely women who assume the principal role of providing informal care, undertaking the most difficult and demanding tasks and dedicating the largest share of their time to them. As a result, women bear an elevated cost in their lives in terms of health, quality of life, access to employment and professional development, social relations, availability of time for themselves, and economic repercussions. Unemployed, under-educated women from the least privileged social classes constitute the largest group of informal caregivers in our country. Any policies aimed at supporting those who provide such care should keep in mind the unequal point from which they start and be evaluated in terms of their impact on gender and social class inequality.     

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

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

Understanding Social Support Burden Among Family Caregivers

Despite the abundance of research on social support, both as a variable in larger studies and as a central focus of examination, there is little consensus about the relationship between social support and health outcomes. Current social support measures typically account only for frequency and size of network, and a paucity of research exists that has explained social support burden, defined as the burden associated with accessing and receiving support from others. We analyzed audio-recorded discussions by hospice family caregivers about their caregiving problems and potential solutions to examine social relationships within networks and identify the processes that influence social support seeking and receiving. Using qualitative thematic analysis, we found that caregivers providing hospice care experience social support burden resulting from perceived relational barriers between friends and family, the inclination to remain in control, recognition of the loss of the patient as a source of social support and guidance in decision making, family dynamics, and decreased availability of emotional support. Social support researchers should consider how the quality of communication and relationships within social networks impacts the provision and subsequent outcomes of social support in varying contexts. Findings from this study suggest that hospice social support resources should be tailored to the caregiver’s support needs and include assessment on the type of support to be offered.     

Relationship Between Methods of Coping, Social Support and Receipt of Preventive Care Procedures by Primary Grandmother Caregivers

The purpose of this study was to examine the relationship between receipt of preventive care procedures, social support and methods used by primary grandmother caregivers to cope with the demands of caregiving. A self-administered questionnaire comprised of items on preventive procedures and standardized measures of social support and methods of coping was used to collect data from a sample of 86 primary grandmother caregivers (56 ± 8 years). Results show that blood pressure check ups (94%) and general physical examination (89%) were the preventive care procedures received by most participants. The average adherence score for the nine preventive care procedures was 6.60 ± 2.10 and 50% of the participants had received each of the nine preventive care procedures considered by this study. Significant relationships were found between avoidance coping and receiving a general physical examination and eye or vision examination; between coping by minimizing the situation and receiving eye or vision examination; and between active coping and receiving a cholesterol check. Subjective and instrumental social supports were both significantly associated with receiving a gynecological examination or Pap smear and blood pressure check up. In conclusion, findings of this study show that primary grandmother caregivers have a high propensity towards preventive care. However healthcare providers providing preventive care to primary grandmother caregivers and other informal caregivers should assess the social supports and methods of coping used to cope with the demands of caregiving because both affect receipt of preventive care.     

The unmet needs of family caregivers for frail and disabled adults

This study examines the efforts and needs associated with family care for disabled and frail adults. A survey of 117 primary caregivers focused on: the health problems associated with caregiving; the existence of informal, family support systems; the use of formal social services, and the need for additional social service programs. Most caregivers report physical and emotional problems due to caregiving ranging from hypertension and back problems to depression and mental exhaustion. The characteristics of caregivers at high risk for health problems are identified. Less than half of the caregivers have family or friends to assist them with caregiving. At least one type of social service was being used by over 80% of caregivers, with utilization patterns in male and female caregivers. Based on the study findings, several policy implications are reviewed.     

Helping hospitalized elderly: discharge planning and informal support.

The extent to which informal support systems substitute or provide linkages to formal support systems has been a source of controversy in many studies. Even the extent to which the formal system of discharge planing in acute care hospitals links patients to formal care systems afterwards in unclear and suggests that existing models are ideal and theoretical rather than established empirically. The Posthospital Support Study examined hospital-based discharge planing and services received in the two month period after hospitalization for 170 patients with either heart conditions, or hip problems which required operations. Discharge planners were found to provide for services which were third-party reimbursable. Although planners adhered verbally to a wholistic model of assessing patient need and used an interdisciplinary planning structure, in actual planning they adhered to a narrow medical model while assuming an underlying social model of services from informal supports. The main informal caregivers varied in the extend to which formal as well as other informal providers supplemented their care, with caregiving spouses carrying most of the burden alone. Patients were most likely to assess themselves as either needing services they were already receiving, or those which they or their caregivers had to arrange for themselves.     

The role of social networks in using home care by older people across Continental Europe

The diversification of caregiving arrangements in European societies has drawn attention to the factors that condition the use of care by older people. Social and family relations appear as a key factor, mainly to be related to the availability and accessibility to potential informal caregivers. Recent studies evidenced that geographical proximity and a larger social network increase the probability of receiving informal support in old age. However, the ways in which interpersonal relationships are associated with the use of formal care, as well as the cross‐country variability of this association, have been barely explored. Using a sample of 37,708 individuals aged 65 and over from Wave 6 of the Survey of Health, Ageing and Retirement in Europe (SHARE), this study examines to what extent the characteristics of older people's social networks predict the use of three types of home care; formal, informal, or combined, exploring the cross‐European convergences and divergences. Binomial logistic regressions are conducted to compare four macro‐regions in continental Europe (northern countries: Denmark and Sweden; western countries: Austria, Belgium, France, Germany, Switzerland, and Luxembourg; southern countries: Italy, Spain, Greece, and Portugal; and eastern countries: Poland, Czech Republic, Slovenia, Estonia, and Croatia). The structure, availability, and accessibility to the members of the social network are the major predictors of the receipt of informal care everywhere. Regional divergences are observed regarding to formal care, alone or combined with informal caregivers.     

Burden of Providing Informal Care for Patients with Atrial Fibrillation

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

Informal caregivers’ experiences of caring for persons with dementia in Estonia: A narrative study

This paper presents the results of a qualitative study aimed at exploring the experiences and needs of informal caregivers of persons with dementia and identifying caregiver expectations for support. The research was based on phenomenological and social constructionist approaches; it also took experience‐centred and culturally oriented approaches to narratives. It was conducted in Estonia in 2017 by means of unstructured in‐depth interviews with 16 informal caregivers who had relatives with dementia. The narrative approach used in this study proved to be an appropriate and valuable method to understand the situations of the caregivers of the people with dementia, in identifying their needs and expectations, and in developing social understanding for caregivers. The results are divided under four thematic headings: awareness of dementia; process of caregiving and different caregiving roles; influence of caregiving on personal life; and expectations of empowerment. We found that it is necessary to raise public awareness of dementia and develop person‐centred support services for the people living with dementia.     

Experiences of family caregivers regarding a community-based care- and case-management intervention. A qualitative study

Family caregivers play an essential role in healthcare for elderly people in primary care settings. The complexity of geriatric patients as well as the fragmentation of healthcare systems can lead to a burden for family caregivers, which can affect their physical and psychological health as well as social relationships, economic productivity and quality of caregiving. Care- and case-management offers a possibility to support, empower and navigate family caregivers through healthcare systems in order to reduce their own burden. The project RubiN (Continuous care in a regional network) was developed to provide regional care- and case-management for outpatient care of the elderly (age >70 years) in a primary care setting in Germany. The aim of this qualitative study was to explore experiences and attitudes of family caregivers of geriatric patients regarding the community-based care- and case-management intervention RubiN. Telephone interviews with a purposeful sample of 21 family caregivers enlisted in all RubiN networks were conducted between March and May 2020 and were followed by qualitative content analysis. The main categories, which emerged were namely: (1) current healthcare situation and (2) experiences with RubiN. Main findings suggest that participants in this study valued the provided support and experienced a sense of relief. However, some participants were disappointed with RubiN and the included support by care- and case-managers. A care- and case-management affected caregiving per se as well as the patient's and family caregiver's well-being. Important aspects contributing to these findings were a continuous relationship, training and expertise of the care- and case-managers. Establishing networks between the patients, family caregivers, care- and case-managers and healthcare providers were key components as well as a good explanation about RubiN itself for family caregivers. Therefore, a community-based care- and case-management can play an important role in detecting, facilitating and preventing family caregiver burden.     

新疆牧业地区失能老年人居家非正式照护质量的影响因素分析

目的 分析新疆牧业地区失能老年人居家非正式照护质量的影响因素。方法 运用家庭照护质量量表（FCCI）对335例新疆牧业地区哈萨克族失能老年人居家非正式照护者进行现场调研,采用多重线性回归法对照护质量的影响因素进行分析。 结果 居家非正式照护质量平均得分为44分;被照护老年人的失能程度、与照护者关系、被照护时间、照护者就业情况、年龄及社会支持是影响居家照护质量的主要因素,上述6个变量解释失能老年人居家照护质量总变异量的32.3%。其中,被照护老人的失能程度重（Beta = - 0.475）、配偶照护者(Beta = - 0.171)、被照护时间长(Beta = - 0.180)、照护者就业状况差(Beta = - 0.134)、照护者年龄大(Beta = - 0.116)为其危险因素,高社会支持(Beta = 0.110)为保护因素。结论 新疆政府相关部门在解决失能老年人的长期照护问题中,应优先考虑牧业地区失能程度重、照护时间长及年龄较大的照护者,减轻其照护负担,提高居家非正式照护质量。     

Managing public health care policy: who's being forgotten?

The purpose of this paper is to explore the lived experience and perceptions of a sample of caregivers who are providing informal care 24h per day, 7 days per week for those with Alzheimer's disease in New Zealand. A mixed-method research design was used to collect and analyse the data. Semi-structured interviews with five caregivers and the completion of a questionnaire survey by 64 full-time caregivers provided insight into the significant burden carried by voluntary caregivers. However, alongside their experience of negative effects on their mental and psychological health, work and financial status, new perspectives of valued self-development and enhanced support networks in their caregiving role emerged. Despite this exploratory project being limited to a small sample of caregivers, the evidence suggests that they employ coping mechanisms which need to be recognised and supported with adequate and equitable resource allocation, if policy managers desire the current level of dependence on informal caregiving for those with Alzheimer's in this country to be sustained.     

Home care for older couples: "it feels like a security blanket . . ."

In this article, the authors explore the home care experience as described by older physically impaired individuals and their caregiving spouses. Separate face-to-face semistructured interviews were carried out with each spouse from nine couples. Analysis of the interview data revealed four themes. For care receivers the themes were Independence and Developing a Trusting Relationship With Home Care Workers. Relief and Continuity were voiced by the caregiving spouses. The authors show how these themes relate to the participants' sense of security, which emerged as a key underlying concept in the home care experience. This study adds to the home care and caregiving literature as it expands our understanding of the relationship between formal and informal caregiving, highlights issues and concerns older couples face as they receive home-based care, and includes both older spouse caregivers and their direct-care recipients.