Creating a health-promoting group for elderly couples on a home health care program

The hospital home care social worker has a unique opportunity to develop a home-keeping, health-promoting group for frail elderly couples within his or her caseload. Through home visits, working as a filial professional, the worker enters, then strengthens the couples' pre-illness formal and informal support networks, and then goes on to create an additional informal peer support group, that meets in each other's homes. The group is capable of decreasing the chance of nursing home placement for all its members. It is proposed that home health care agencies within hospitals incorporate such groups into their regular programs.     

Support workers in intermediate care

Despite the proliferation of support worker roles in the UK, little is known about their actual numbers, employment conditions or levels of training. Intermediate care services appear to be an important employer of support workers, but the diversity of intermediate care services makes the task of understanding support worker roles even more complex. This paper presents data from 33 services which were involved in an NHS Modernisation Agency's Changing Workforce Programme project, the Accelerated Development Programme for Support Workers in Intermediate Care in England. Within this project, the main employers of support workers were primary care trusts and/or social services. Participating intermediate care teams were involved in admission avoidance, assisted discharge and reablement, or combinations of these services, and the majority of care was provided in the patient's own home. The 33 services employed 794 support workers and 368 professionally qualified staff. The mean ratio of professionally qualified staff to support workers was 0.95 (range = 0-4.9, SD = 1.05). Support worker roles included multidisciplinary working, meeting rehabilitation needs, providing personal care and enablement. Team leaders included nurses, social workers, physiotherapists, professional managers, home carers and support workers. The most commonly reported sources of support worker training were National Vocational Qualifications and in-house training. In 80% of the services, at least half of the support workers had a qualification. Three models of supervision emerged across the services: the allocation of a mentor; team supervision; and formal and informal line management. These findings illustrate the diversity of employment of support workers in intermediate care. The variations in training, supervision and skill mix have implications for clinical governance and support worker regulation. The employment of support worker staff jointly across health and social care raises cross-boundary issues around employment contracts and pay.     

Does informal care impact utilisation of home‐based formal care services among end‐of‐life patients? A decade of evidence from Ontario,Canada

Understanding how informal care impacts formal care utilisation for home‐based end‐of‐life patients is an important policy‐ and practice‐relevant question. This paper aims to assess the relationship between informal and formal home care among home‐based end‐of‐life patients and how this relationship has changed over the last decade and over the end‐of‐life trajectory. We focus on informal care provided by family members or friends, and three types of home‐based formal care services: care by personal support workers, physician visits, and nurse visits. Using survey data collected in a home‐based end‐of‐life care programme in Ontario, Canada from 2005 to 2016, we build a two‐part utilisation model analysing both the propensity to use each type of formal care and the amount of formal care received by patients. The results suggest that informal care is a substitute for care by personal support workers, but a complement to physician visits and nurse visits. In the case of nurse visits, an increased complementary effect is observed in more recent years. For home‐based physician and nurse visits, the complementary effect grows with patient's proximity to death. These results highlight the complexity of the relationship between informal and formal care among home‐based end‐of‐life patients. Decision‐makers need to take into account the relationship between informal care and different types of formal services when introducing future policies.     

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.     

You never walk alone: An exploratory study of the needs and burden of an informal care group

Little is known about the dynamics of a group of people giving informal care together. The aim of this study was to investigate the characteristics of an informal care group, the obstacles the informal care group experiences, the needs and desires they have and how the informal care group can be supported by general practitioners (GPs) and other professionals. Nine informal care groups were interviewed based on a questionnaire that was preapproved by the six Flemish official informal caregiver organisations. The results were analysed using open coding. A survey was conducted among 137 caregivers who were part of a group. Univariate analysis was performed. Informal care group usually consist of close relatives of the patient, with often the partner of the patient as the main caregiver. The size of the informal care group depends on the size of the family. If there are more caregivers in a group, the perceived burden of the individual caregiver decreases. The support of the other caregivers in the group increases capacity. The cooperation and agreements are often spontaneously organised and few problems are reported. There is a large variation in the expectations of support from the general practitioner, ranging from availability in emergencies to information about the possibilities of formal home care. This study depicts a positive image of the informal care group. Being part of a caregiver group both decreases burden and increases capacity. Informal care groups usually function well without a need for formal agreements within the group, and they rarely need a third party to coordinate with them or intervene.     

Analysing the importance of older people's resources for the use of home care in a cash‐for‐care scheme: evidence from Vienna

Older people of lower socioeconomic status (SES) are disproportionately affected by chronic conditions, yet less able to compensate health limitations through use of formal long‐term care (LTC) at home, a preferred type of care for most. Some, like older women and single people, are particularly vulnerable. Under the Austrian public cash‐for‐care scheme, which aims to incentivise care at home and empowerment of LTC users, this study analyses: (i) interdependencies between SES, gender and ‘informal’ or family care, and (ii) how these factors associate with the use of old age formal home care in Vienna. An adaptation of Arber and Ginn's theory is used to identify material resources (income), health resources (care needs) and informal caring resources (co‐residence and/or availability of family care). Gender aspects are also considered as a persistent source of inequalities. Administrative and survey data, collected by public authorities between 2010 and 2012 in Vienna, serve to compare home care use in old age (60+) to other support forms (residential and informal care) using logistic regression analysis. Results show a pro‐rich bias in home care use among single‐living people, with high‐income single people being less likely to move to a care home, while there are no significant income differences present for non‐singles. Second, traditional gender roles are salient: female care recipients co‐residing with a partner are more likely to use formal care than men, reflecting that men's traditional gender roles involve less unpaid care work than women's. In conclusion, in an urban setting, the Austrian cash‐for‐care scheme is likely to reinforce stratifications along gender and class, thus implementing the general policy objective of care at home, but more likely for those with higher income. A support mechanism promoting empowerment among all older people might contribute to unequal degrees of choice, especially for those with fewer resources to manage their way through a fragmented system of LTC delivery.     

Toward a Partnership in the Transition from Home to a Nursing Home: The TRANSCIT Model

The transition from home to a nursing home can be stressful and traumatic for both older persons and informal caregivers and is often associated with negative outcomes. Additionally, transitional care interventions often lack a comprehensive approach, possibly leading to fragmented care. To avoid this fragmentation and to optimize transitional care, a comprehensive and theory-based model is fundamental. It should include the needs of both older persons and informal caregivers. Therefore, this study, conducted within the European TRANS-SENIOR research consortium, proposes a model to optimize the transition from home to a nursing home, based on the experiences of older persons and informal caregivers. These experiences were captured by conducting a literature review with relevant literature retrieved from the databases CINAHL and PubMed. Studies were included if older persons and/or informal caregivers identified the experiences, needs, barriers, or facilitators during the transition from home to a nursing home. Subsequently, the data extracted from the included studies were mapped to the different stages of transition (pre-transition, mid-transition, and post-transition), creating the TRANSCIT-model. Finally, results were discussed with an expert panel, leading to a final proposed TRANSCIT model.The TRANSCIT model identified that older people and informal caregivers expressed an overall need for partnership during the transition from home to a nursing home. Moreover, it identified 4 key components throughout the transition trajectory (ie, pre-, mid-, and post-transition): (1) support, (2) communication, (3) information, and (4) time.The TRANSCIT model could advise policy makers, practitioners, and researchers on the development and evaluation of (future) transitional care interventions. It can be a guideline reckoning the needs of older people and their informal caregivers, emphasizing the need for a partnership, consequently reducing fragmentation in transitional care and optimizing the transition from home to a nursing home.     

Defining the Role of the Community Health Worker within a Federal Healthy Start Care Coordination Team

Introduction Federal and state policies often require utilization of evidence-based home visiting programs. Measurement of specified interventions is important for tracking program implementation and achieving program outcomes. Thus, the Strong Beginnings program worked to define community health worker (CHW) interventions, a core service of the program to improve maternal and child health. Methods A workgroup consisting of CHWs, supervisors and other program staff was created in order to develop and define specific CHW interventions within a nurse or social worker care team. Basic interventions were first compared to the nurse or social worker care coordinator home visiting interventions by risk topic. The evaluator then grouped each CHW intervention into categories per risk domain using thematic analysis and assigned a CHW core function or role based on literature review findings. The workgroup confirmed the results. The workgroup then continued discussions to further enhance CHW interventions per risk domain once the general structure was created. Results The workgroup identified seven core functions and 28 maternal and child health risk topics to be addressed by the CHW. The process resulted in a detailed document of program interventions that the CHWs use to guide care. Conclusions The process helped CHWs feel more valued with their role in team care. The specified interventions will help others understand the CHW role within the care team, ensure consistent interventions are delivered across program partners, provide a foundation to better understand how specific CHW contributions are related to health outcomes, and support program sustainability.     

Home health care utilization: a review of the research for social work

The author reviewed the literature to identify the variables associated with home health care utilization using the Andersen-Newman model as a framework for analysis. Sixty-four studies published between 1985 and 2000 were identified through PUBMED, Sociofile, and PsycINFO databases. Home health care was defined as in-home skilled nursing, homemaker, mobile meals, home health aide, physical therapy, occupational therapy, or social work services. The review indicates that the client most likely to use home health care is elderly, has a high number of ADL/IADL impairments, lives alone, has a low level of informal support, and has Medicaid coverage. In the presence of informal support or when care recipients live with others, the initiation of formal services may be delayed until physical impairment of the care recipient is severe or caregiver burden is high. Implications for social work practice and research are discussed.     

Important components for Dutch in‐home care based on qualitative interviews with persons with dementia and informal caregivers

BackgroundDementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs.ObjectiveTo identify important components of in‐home care for persons with dementia and their informal caregivers in the Netherlands.DesignSemi‐structured interviews across the Netherlands, between March and June 2019 using thematic analysis.Setting and participantsPersons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi‐structured interviews findings.ResultsFive themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers.ConclusionThis study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.     

Caring for older people in the 21st century: 'notes from a small island'

Drawing on carer narratives from research undertaken in New Zealand, this paper considers the interrelationship between place and the care-giving experience. In doing so, it considers: first, how informal carers of older people experience the transition in the place of care from the home to care homes; second, how they negotiate new identities for themselves as carers in these new care settings; and third, carers' views on how we might develop more inclusive models of care in care home settings. While much current work on care-giving in the home highlights the blurring of the boundaries between formal and informal care-giving, this paper suggests that the blurring of the boundaries of care may also be manifest in an increased penetration of informal care-giving within the semi-public space of the residential care home.     

End-of-Life care in a community garden: Findings from a Participatory Action Research project in regional Australia

This article presents findings from research that explored how a community garden might function as a place of end-of-life and bereavement support. Adopting Participatory Action Research (PAR) methods, and informed by Third Place theory and notions of therapeutic landscape, creative consultations were held in the Garden and people's homes. The findings provide insights into the nature of informal care as it is played out in the liminal garden space, between home and institution. The results illuminate the therapeutic landscape of community gardens, and contribute new understandings to the fields of PAR, health geography and end-of-life care.     

Important features of home‐based support services for older Australians and their informal carers

In Australia, newly initiated, publicly subsidised ‘Home‐Care Packages’ designed to assist older people (≥65 years of age) living in their own home must now be offered on a ‘consumer‐directed care’ (CDC) basis by service providers. However, CDC models have largely developed in the absence of evidence on users’ views and preferences. The aim of this study was to determine what features (attributes) of consumer‐directed, home‐based support services are important to older people and their informal carers to inform the design of a discrete choice experiment (DCE). Semi‐structured, face‐to‐face interviews were conducted in December 2012–November 2013 with 17 older people receiving home‐based support services and 10 informal carers from 5 providers located in South Australia and New South Wales. Salient service characteristics important to participants were determined using thematic and constant comparative analysis and formulated into attributes and attribute levels for presentation within a DCE. Initially, eight broad themes were identified: information and knowledge, choice and control, self‐managed continuum, effective co‐ordination, effective communication, responsiveness and flexibility, continuity and planning. Attributes were formulated for the DCE by combining overlapping themes such as effective communication and co‐ordination, and the self‐managed continuum and planning into single attributes. Six salient service features that characterise consumer preferences for the provision of home‐based support service models were identified: choice of provider, choice of support worker, flexibility in care activities provided, contact with the service co‐ordinator, managing the budget and saving unspent funds. Best practice indicates that qualitative research with individuals who represent the population of interest should guide attribute selection for a DCE and this is the first study to employ such methods in aged care service provision. Further development of services could incorporate methods of consumer engagement such as DCEs which facilitate the identification and quantification of users’ views and preferences on alternative models of delivery.     

Proximity to death and participation in the long-term care market

The extent to which increasing longevity increases per capita demand for long-term care depends on the degree to which utilization is concentrated at the end of life. We estimate the marginal effect of proximity to death, measured by being within 2 years of death, on the probabilities of nursing home and formal home care use, and we determine whether this effect differs by availability of informal care--i.e. marital status and co-residence with an adult child. The analysis uses a sample of elderly aged 70+ from the 1993-2002 Health and Retirement Study. Simultaneous probit models address the joint decisions to use long-term care and co-reside with an adult child. Overall, proximity to death significantly increases the probability of nursing home use by 50.0% and of formal home care use by 12.4%. Availability of informal support significantly reduces the effect of proximity to death. Among married elderly, proximity to death has no effect on institutionalization. In conclusion, proximity to death is one of the main drivers of long-term care use, but changes in sources of informal support, such as an increase in the proportion of married elderly, may lessen its importance in shaping the demand for long-term care.     

Self-direction in home care for older people: a consumer's perspective

Interest among elder home care consumers in playing a stronger role in planning and supervising their own care was examined. Elder home care consumers were surveyed to determine their willingness to assume more responsibility for their home care such as in the hiring, paying, scheduling, supervising and/or firing of their home care worker. Telephone interviews were conducted of 883 home care clients in the Massachusetts Home Care Program which is administered through 27 local, private, non-profit Home Care Corporations (HCC) and which currently serves 33,000 clients. Respondents reported high levels of satisfaction with their home care services and home care worker. However, a substantial minority of respondents reported a willingness to assume more responsibility for their own home care services. A quarter to a third of the respondents indicated that they could take greater responsibility for supervising a home care worker and needed less assistance from a case manager. Multiple regression analyses revealed that prior experience in directing an in-home worker, greater length of receipt of home care services, greater current involvement in directing a home care worker, and lower levels of satisfaction with home care services were associated with a willingness to assume responsibility for directing a home care worker. Pilot projects are needed that develop and test options for older people with disabilities to exercise greater control over their own personal assistance.     

Perceptions of Quality of Care for Serious Illness at Different Levels of Facilities in a Rural Area of Bangladesh

This study was conducted to explore care-seeking for perceived serious morbidities and users'' perceptions about quality of care at different facilities in Matlab, Bangladesh. This is a secondary analysis of baseline community survey data of the Matlab Essential Obstetric Care Project conducted in 2001. Principal component and factor analysis methods were used for computing summary quality and socioeconomic indicators. During perceived serious morbidity of any household member within the last one year, 88.1% (776/881) used health resource outside home. Of them, 25.6% visited informal care providers, 17.8% peripheral public facilities, 7.9% tertiary hospitals, 7.3% facilities of non-governmental organizations, and 41.4% private facilities as the highest healthcare resources. Socioeconomic status and type of morbidity were significant predictors for choice of the highest level of care. Most (86.1%) of those who sought care outside the home were satisfied with the quality of services provided for their last serious morbidities. Users of organized private-sector and tertiary facilities perceived the quality of services better than users of informal care providers and peripheral public facilities. Behaviour and attitude of the service providers and availability of medicines were significant predictors for perceived quality of care. Peripheral public-health facilities were of poor quality and grossly under-used. Further research should explore the technical aspect of quality of care in different facilities, along with perceptions of service providers to design client-focused interventions to impact the use of healthcare services. There is no reason to overlook informal care providers, they should rather be trained and monitored.Key words: Healthcare, Healthcare-seeking behaviour, Health services, Patients'' satisfaction, Quality of care, Bangladesh     

A randomized controlled study of a home health care team.

This report describes the findings of a randomized study of a new team approach to home care for homebound chronically or terminally ill elderly. The team includes a physician, nurse practitioner, and social worker delivering primary health care in the patient's home, including physician house calls. Weekly team conferences assure coordination of patient care. The team is available for emergency consultation through a 24-hour telephone service. The team physician attends to the patient during necessary hospitalizations. This approach was evaluated in a randomized experimental design study measuring its impact on health care utilization, functional changes in patients, and patient and caretaker satisfaction. The team patients had fewer hospitalizations, nursing home admissions, and outpatient visits than the controls. They were more often able to die at home, if this was their wish. As expected, they used more in-home services, measured in weighted cost figures; their overall cost was lower than their controls, but the difference was not statistically significant. Their functional abilities did not change differently from the controls, but they, and especially their informal caretakers in the home, expressed significantly higher satisfaction with the care received.     

Informal care for illness in rural southwest Uganda: the central role that women play

In rural Uganda care for those who are ill tends to be home based because of inadequate and expensive health care facilities, lack of medication and poor staffing levels in health units. Research findings suggest that women are responsible for the bulk of caring activities. This paper questions the assumption that female informal carers are in a position to cope with illness episodes in the home. Data were collected from 54 female informants in a rural population in southwest Uganda. Supplementary data from in-depth interviews with survey participants and counsellors were also collected. Findings suggest that women are the main providers of informal care within the home. Many women, particularly in female-headed households, did not own or have direct access to the necessary finances to meet the family's health care needs as expected of them. Although relatives and friends were seen as a valuable resource, because of poor household proximity and financial constraints they were not always in a position to offer or provide assistance. The women also identified themselves as responsible for a variety of home and agricultural tasks; such activities were frequently disrupted by illness episodes. As women take on the additional burden of care for those with HIV/AIDS an inevitable conclusion is that their resources, both social and economic, will not be adequate. These data indicate the need for additional research and stress the importance of appropriate support and relief programs for those responsible for informal care.