Working conditions in home care: a survey of Washington state's home care workers

Home care services make it possible for millions of older Americans to continue living in the community. Such services may enhance the recipients' quality of life while providing essential respite to family caregivers. But while there has been increasing recognition of the burden borne by the predominantly female family caregivers, there has been less attention to the plight of the home care workforce. With the growth of the home care industry, the burden of care has to some extent shifted from one category of female caregivers to another. This paper, based on a survey of 16 agencies and 1,900 workers, examines the employment conditions of home care workers in Washington state. The study reveals a pattern of harsh working conditions, low wages, and few benefits. The findings raise questions about the ethics and efficacy of government policies that are based on the exploitation of home care workers.     

Examining Live-In Foreign Domestic Helpers as a Coping Resource for Family Caregivers of People With Dementia in Singapore

In Singapore, the responsibility of caring for persons with dementia falls on family members who cope with a long-term caregiver burden, depending on available support resources. Hiring foreign domestic workers to alleviate caregiver burden becomes a prevalent coping strategy that caregivers adopt. This strategy allows caregivers to provide home care as part of fulfilling family obligations while managing the caregiver burden. This study aimed to investigate primary caregivers’ relationship with hired support and its impact on coping with caregiver burden. Twenty in-depth interviews were conducted with primary caregivers who hired live-in domestic helpers to take care of their family members with dementia. The findings revealed that caregivers perceived the normative obligations to provide home care to family members with dementia. They sought support from domestic helpers to cope with physical and mental burnout, disruption of normal routines, and avoidance of financial strain. A mutual-support relationship was built between caregivers and domestic helpers through trust and interdependence. The presence of domestic helpers as a coping resource reveals the positive outcomes of problem-, emotional-, and diversion-focused coping. This study illustrates that coping strategies are employed in different ways depending on the needs of caregivers, access to infrastructure, cultural expectations, and available resources.     

Knowing the diagnosis and counselling the relatives of a person with dementia: the perspective of home nurses and home care workers in Belgium

Home nurses and home care workers share the care for a person with dementia with family caregivers, and are confronted with their needs for medical and service-related information, for advice on how to cope with the behaviour changes, and for emotional support. The first objective of the present study was to describe some of the conditions for effective counselling, such as the perception that knowing the diagnosis has positive consequences for the formal caregivers. A second objective was to describe the formal caregivers' counselling practice, and ascertain its relationship with the psychological variables of attitudes, self-efficacy and subjective norm. A postal questionnaire was sent to 287 home nurses and 1259 home care workers in a defined region of Belgium; the questionnaire was returned by 169 home nurses (58.9% response) and 665 home care workers (52.8% response). The Theory of Planned Behaviour was the organising framework which underpinned the development of the instruments. Only the 168 home nurses and 601 home care workers reporting experience with caregiving to people with dementia were included in the analysis. Formal caregivers indicated that knowing the diagnosis was important, but it could facilitate or hinder caregiving. They were able to describe behavioural characteristics which are indicative of dementia, but only in a limited way, and their strategies to uncover the diagnosis were also limited. Formal caregivers reported that they supported family members emotionally, advised about communication with the person with dementia and informed family caregivers about services. However, providing family caregivers with information about dementia lagged behind these forms of support. In general, nurses scored higher than home care workers. Multiple linear regression analysis was used to investigate the relationships between self-reported practice and the concepts of the model. In both professions, attitudes and self-efficacy were found to be strong independent predictors, and the implications for practice are discussed.     

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

ABSTRACT

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

Predictors of caregiver burden across the home‐based palliative care trajectory in Ontario,Canada

Family caregivers of patients enrolled in home‐based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non‐modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home‐based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi‐weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home‐care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non‐linear fashion from study admission to patient death. Increased monthly unpaid care‐giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non‐modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care‐giving demands, thereby potentially allowing for longer patient care in the home setting.     

Managing the body work of home care

Body work is a key element of home healthcare. Recent restructuring of health and social care services means the home is increasingly a key site of long-term care. While there is a growing literature on the social dynamics between care recipients and their family caregivers, less is known about the formal work dynamic between paid care workers and care recipients and family caregivers. Drawing on interview data from an Ontario-based study of long-term home care, we explore how body work is negotiated through the embodied practices of care in the home and through care relationships associated with home care. In particular we focus on how the practices of intimate body care (such as bathing, toileting, and catheter management) show the diverse dynamics of care work through which caregivers, care recipients and homespace are constituted. We argue that the practices of care are shaped by a complex interweaving of regulatory mechanisms associated with home care along with the physical and affective dimensions of intimate body work. In turn this suggests the need for new ways of understanding body work in contemporary landscapes of care.     

Family caregivers in rural Uganda: the hidden reality

We conducted 16 in-depth interviews with family caregivers of AIDS patients in three rural districts in western Uganda. They were selected from a client visitation list of the home-based care program for AIDS patients, based on volunteer participation. Family caregivers reported huge problems associated with providing the necessary psychological, social, and economic care. They also said that the physical and emotional demands of caregiving are overwhelming daily challenges. Most support to AIDS patients provided by family, friends, and the churches. The study highlights the great burden of caregivers, in sub-Saharan Africa who most often are elderly women and young girls. This study examine, the burden and related health issues of family caregivers, primarily women, for AIDS patients in Uganda. It was part of a broad research project using qualitative methods on family caregiving in the home environment in sub-Saharan Africa. As the requirements for family care giving are often overwhelming for women under the conditions as they exist in Uganda and in other developing countries, it constitutes a gender issue of great importance that has not been appreciated fully in the international literature. Family caregiving is also of international relevance, as HIV/AIDS is a global pandemic of previously unknown proportions. In many poor countries, family caregiving is the most common and often the only care that AIDS patients receive, because clinic-based care often is not available close to home or is not affordable. Therefore, family caregiver support programs to alleviate this burden are essential for all those countries where HIV/AIDS is prevalent. Family caregiver burden encompasses medical, social, and economic issues at the household level, which requires an interdisciplinary approach in order to fully understand and appreciate the different dimensions of the family caregiver burden and its negative impact on the lives of so many women in so many countries.     

Family Caregivers in Rural Uganda: The Hidden Reality

We conducted 16 in-depth interviews with family caregivers of AIDS patients in three rural districts in western Uganda. They were selected from a client visitation list of the home-based care program for AIDS patients, based on volunteer participation. Family caregivers reported huge problems associated with providing the necessary psychological, social, and economic care. They also said that the physical and emotional demands of caregiving are overwhelming daily challenges. Most support to AIDS patients provided by family, friends, and the churches. The study highlights the great burden of caregivers, in sub-Saharan Africa who most often are elderly women and young girls.

This study examine, the burden and related health issues of family caregivers, primarily women, for AIDS patients in Uganda. It was part of a broad research project using qualitative methods on family caregiving in the home environment in sub-Saharan Africa. As the requirements for family care giving are often overwhelming for women under the conditions as they exist in Uganda and in other developing countries, it constitutes a gender issue of great importance that has not been appreciated fully in the international literature. Family caregiving is also of international relevance, as HIV/AIDS is a global pandemic of previously unknown proportions. In many poor countries, family caregiving is the most common and often the only care that AIDS patients receive, because clinic-based care often is not available close to home or is not affordable. Therefore, family caregiver support programs to alleviate this burden are essential for all those countries where HIV/AIDS is prevalent. Family caregiver burden encompasses medical, social, and economic issues at the household level, which requires an interdisciplinary approach in order to fully understand and appreciate the different dimensions of the family caregiver burden and its negative impact on the lives of so many women in so many countries.     

Positive perceptions encouraging continued caregiving at home among family caregivers

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

Co-production in coping with care dependency in Germany: How can integrated local care centres contribute?

In Germany, most care dependent people are looked after by family members at home. Professional support can help ease the burden of caring relatives and stabilise home care. Ideally, care then is provided through the co-production of formal and informal caregivers. This article analyses how care dependent people and their family caregivers integrate professional support into their care arrangements. An analysis was conducted using data collected for a qualitative study evaluating integrated local care centres in North-Rhine-Westphalia, Germany. The study is based on episodic interviews with users of these care centres and their family caregivers (N = 26). During the analysis, three interpretive and practice patterns relating to co-production of care were identified. These patterns reveal how the interviewees deal with (increasing) needs for assistance and care while incorporating professional care into their lives. The patterns help differentiate whether the interviewees (a) use developed care skills to contribute actively to the co-production with their layman knowledge, or (b) seek relief of their care responsibilities and withdraw temporarily from the direct sphere of care applying freed capacities to organise family daily life, or (c) use the services of the care centres to meet with other older people and to develop spaces for mutual help and co-production. The interpretive and practice patterns thus differ in the extent to which care users and family caregivers continue to play an ‘active role’ in the care process and contribute their own knowledge, ideas, expectations and particular care activities. In order to achieve a functioning co-production, professionals face the challenge of understanding these patterns that have been established over many years and of taking them into account appropriately.     

广州市老年痴呆症患者家庭照顾者负担及卫生服务现状分析

目的 了解广州市老年痴呆症门诊患者家庭照顾者负担现状及其影响因素,分析其卫生服务需求与利用情况。方法 选取2017年3—9月在广州市某医院门诊确诊、符合纳入排除标准且照顾者知情同意的全部老年痴呆症患者及其家庭照顾者,采用照顾者负担评估量表（CBI）评估照顾者负担情况,收集一般资料及卫生服务需求与利用。采用t检验、方差分析、多元线性回归分析照顾者负担的影响因素。结果 本研究中老年痴呆症患者及其照顾者97对,照顾者平均年龄为（55 ± 12）岁。照顾者CBI总分为（40.43 ± 20.05）分,时间依赖性维度的负担最重,主要影响因素为主观感觉的经济负担（标准系数：0.24、0.43）、每周照顾时长≥61 h（标准系数：0.22）和承担除照顾外的家务（标准系数：0.21）。照顾者认为患者最需要的卫生服务分别为护理院照顾、特别看护和上门治疗,而实际利用的卫生服务则以体格检查与门诊医疗为主。结论 影响照顾者负担的主要因素是经济状况和照顾时长。广州市老年痴呆症患者卫生服务需求与利用不平衡。建议增设老年痴呆护理机构和老人活动中心等。     

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.     

Home care nursing for persons with dementia from a family caregivers' point of view: Predictors of utilisation in a rural setting in Austria

The service utilisation of persons with dementia (PwD) and their caregivers is subject to lively debate. The reasons for non-utilisation are manifold and heterogeneous. Conceptual models and explanatory frameworks may help identify predictors of the usage of health services. Literature examining the utilisation of home care services for PwD is scarce. This study explored predictors of home care nursing utilisation of PwD and their informal caregivers in a rural setting, according to the Andersen Behavioural Model of Health Care Use. A mixed-methods study was conducted in a rural area of Austria. In using non-random multistage sampling, anonymous questionnaires were distributed to collect data on family caregivers of PwD. Data were analysed using sequential binary logistic regression to characterise home care service users. To reflect the complexity of the Andersen model, a regression tree model was used. In total, 107 family caregivers completed the survey. Predisposing factors for home care nursing utilisation were higher age of the caregiver, female gender of PwD and kinship of the PwD and caregiver. Disruptive behaviour and independence in activities of daily living of PwD were associated with need factors for service use. According to the Andersen model, the predisposing and need factors contributed most to the explanation of home care nursing utilisation. The enabling factors employment, education and income tend to predict service use. Our findings indicate that higher age of the family caregiver and female gender of PwD are the main predictors for utilisation of home care nursing in a rural setting. To improve utilisation, the advantages of professional care services should be promoted, and the awareness about the variety of services available should be increased. To ensure a better understanding of the barriers to accessing home care, PwD should more often be included in healthcare service research.     

"This case is closed": family caregivers and the termination of home health care services for stroke patients

Policies promoting home- and community-based services and disease management models implicitly rely on family care, still the bedrock of long-term and chronic care in the United States. The United Hospital Fund studied family caregivers of stroke and brain injury patients when home care cases were opened and closed and found that even with short-term formal services, family caregivers provided three-quarters of the care. Patients' mobility impairments and Medicaid eligibility were the main factors in determining the amount and duration of formal services. Between one-third and one-half of family caregivers reported being inadequately prepared for the case closing. At all stages, family caregivers expressed significant isolation, anxiety, and depression. Therefore, home care agency practice and public policies should provide better education, support, and services for family caregivers.     

Long-Term Care Insurance in Japan

In response to an increase in the number of elderly people and increasing medical costs, the Japanese government implemented the Long-Term Care Insurance (LTCI) system for the elderly in April 2000. Three years have passed since the LTCI was initiated. The purpose of this paper is to describe the framework, current situation and issues of this system, and the challenges and roles of the LTCI in the future.The numbers of service agencies, institutions, and LTCI service users have been steadily increasing. The waiting list for institutions has also increased, and only half of the users have reached the upper cost limit. Most users were satisfied with the LTCI services. However, the decisions made by the elderly on the types of services to use within the LTCI system are sometimes influenced by their families. The system has some problems regarding the lack of support that is provided to the elderly with respect to their access, choice and use of the LTCI services. Often, care managers cannot devote enough time to the care management process. As a result, important elements of care management, such as conducting home visits to assess users’ conditions, monitoring the care that is received by users, and meeting with other service providers to discuss adequacy of care, are sometimes lacking. Private companies have promoted the quality and efficiency of the home care and long-term care market. The total amount of yearly medical expenses for elderly people in Japan has decreased following the implementation of the LTCI system, compared with that prior to the initiation of the system. LTCI premiums differ among municipalities. The questionnaire that has been used to assess the care requirements of the elderly was deficient in some areas of health. However, in 2003, some amendments were made to this questionnaire in an attempt to address these deficiencies. Furthermore, the LTCI system should have relieved some of the burden on the elderly patient’s family; however, since the implementation of the LTCI, its impact on the burden on the family has not been addressed sufficiently.Although there have been amendments to the system, several challenges of the LTCI system must be considered: (i) ensuring the future financing of LTCI services is met; (ii) providing countermeasures to promote the use of home-care services and to alleviate the care burden to family caregivers; (iii) providing adequate support and advocacy of rights and decision-making for the elderly; (iv) providing educational activities to disseminate knowledge about LTCI programs; and (v) ensuring the availability of activities to promote health for the elderly and to prevent them from becoming bedridden.     

Subjective burdens of families caring for "frail elderly" in their homes

The purpose of the study is to measure the subjective burdens of families caring for "frail elderly" in their homes and to clarify the relationships between caregivers' subjective burdens and the health conditions of the "frail elderly", the family's conditions, the use of social services and availability of social supports. The subjects consisted of caregivers of the elderly who also were using nursing services from K Home Visit Nursing Care Station (K-Station). We mailed subjective burden questionnaires to 98 families among users of K-Station from December of 1994 to March of 1995. We used the 12 items developed by Nakatani as a scale to measure subjective burdens. Each item was stratified into 4 grade levels from "agree" to "disagree". We asked nurses at K-Station about "frail elderly" ADL conditions in detail, the extent of medical dependency and the will of families to care for the elderly. A total of 76 questionnaires were returned, of which 73 could be analyzed. The greater part of "frail elderly" were female (n = 42). The average age of the "frail elderly" was 81.1(+/- 7.6) years old. All caregivers were members of the family of the "frail elderly" and most of them were women (n = 63). From the result of principal analysis, 2 principles were extracted from the 12 items used to measure subjective burden of caregivers. We analyzed the first principle as "subjective burden of caregivers". From the result of multiple regression analysis (Stepwise method), "subjective burden of caregivers" was characterized by the caregivers' conditions only (caregivers' health status, the will to care for the elderly and anxiety of providing night care). This result suggested that support for the caregivers of the "frail elderly" was important to sustain in-home care.     

Do Trajectories of At-Home Dementia Caregiving Account for Burden After Nursing Home Placement? A Growth Curve Analysis

Transitioning to the nursing home setting is a complex process for family caregivers of older adults with dementia. While nursing home placement (NHP) can alleviate certain caregiving responsibilities, new stressors can also emerge. In the present study, the researchers examined how care-related factors can change leading up to NHP and how these factors influence caregiver outcomes following NHP. A sample of 634 family dementia caregivers (n = 634) were surveyed at three six-month intervals prior to NHP and once during the 12 month period following institutionalization. Growth curve modeling revealed dynamic changes in certain factors leading up to NHP (e.g., caregivers' perceived health), while other factors remained stable (e.g., caregiver burden). Several factors emerged as significant predictors of caregiver burden following NHP, including pre-placement burden and adult day service utilization. For geriatric social workers, these findings may be useful in assessing family caregivers, and in the development and utilization of appropriate interventions.     

An investigation of factors related to the use of respite care services for children with severe motor and intellectual disabilities (SMID) living at home in Japan

Limited time away from the child is cited as the main factor that increases the burden for the primary caregiver of severely disabled children. The aim of this study was to quantitatively elucidate the factors related to the desire to use social services and the actual use of respite care services by the primary caregivers of severely disabled children in Japan. In this study, we investigated the use of respite care services in accordance with the primary caregivers’ wishes by examining inhibiting or promoting factors associated with respite care service use only among those who wished to use social services. A total of 169 Japanese mothers participated and answered the questionnaires. We conducted a logistic regression analysis and a multiple regression analysis to investigate the factors related to respite care service use. The most important factors affecting a primary caregiver's desire to use social services were the belief that the child would enjoy using social services and the family's approval of the social service use. The most important factors affecting respite care service use were the family's approval of the use and a large care burden on the primary caregiver. Respite care services should be sought out before the care burden becomes too great to enable the primary caregiver to more easily contribute to the continuation of home care. A background of mother–child separation anxiety disrupted the use of respite care. However, believing that the child enjoys using social services may reduce primary caregivers’ psychological resistance to being separated from their child, which is supported by tradition. Thus, it is also important for respite care service providers to provide information about the children to their primary caregivers and families while they are using respite care services.