Helping Hospitalized Elderly:

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 planning in acute care hospitals links patients to formal care systems afterwards is unclear and suggests that existing models are ideal and theoretical rather than established empirically. The Posthospital Support Study examined hospital-based discharge lanning 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.     

Substitution between Formal and Informal Care for Persons with Severe Mental Illness and Substance Use Disorders

BACKGROUND: Persons with severe mental illness (SMI) often get extensive informal care from family members and friends as well as substantial amounts of formal treatment from paid professionals. Both sources of care are well documented, but very little is known about how one affects the other. AIMS OF THE STUDY: This analysis estimates the extent of substitution between direct care provided by family and friends and formal treatment for people with severe mental illness and substance use disorders. Separate estimates are generated for short-term and long-term effects. METHODS: Data are from a randomized clinical trial conducted at seven mental health centers in New Hampshire between 1989 and 1995. The study includes detailed data for 193 persons with dual disorders measured at study entry and every six months for three years. Hours of informal care were compared with total treatment costs within each six-month period to measure short-term effects. Average amount of informal care over three years represented long-term caregiving practices. Measures of informal care are from interviews with informal caregivers. Treatment costs are based on combined data from management information systems, Medicaid claims, hospital records, and self reports. We used mixed effects repeated measures regression to estimate longitudinal effects and a multiple imputation technique to test the sensitivity of results to missing data. RESULTS: In the short-term, persons with bipolar disorder used significantly more formal care as informal care increased (complementarity). The relationship between short-term informal and formal care was significantly weaker for persons with schizophrenia. For both diagnostic groups there was a long-term substitution effect; a 4-6% increase in informal care hours was associated with an approximate 1% decrease in formal care costs. DISCUSSION: Although they must be confirmed by further research, these findings suggest that there is a significant and strong relationship between care given by family and friends and that supplied by formal treatment providers. The analysis indicates that the short-term relationship between informal care and formal treatment tends to be complementary, but differs according to diagnosis. Long-term effects, which are possibly related to changing role perceptions, show substitution between the two forms of care. Missing data for family care hours in some time periods was a concern in this study. However, the consistency in results between the analyses that used imputed data and the model using only original data increase our confidence in the findings. Although there may be some endogeneity between formal and informal care in other treatment settings we believe the unique characteristics of the service-rich environment in which this study was conducted limit that concern here. IMPLICATIONS FOR HEALTH CARE PROVISION AND USE: The amount of care provided by informal caregivers has a significant impact on formal treatment costs. Models of care that explicitly acknowledge the interplay between the two types of care are needed to ensure efficient combinations of formal and informal care. IMPLICATIONS FOR HEALTH POLICY FORMULATION: How to best to encourage informal support, without overburdening caregivers, is a key challenge facing policy makers and providers of mental health services. The merits of various approaches to reducing caregiver burden is a subject that needs more attention from researchers. In the interim, the demands on informal caregivers may mount as efforts to reduce health care spending continue. IMPLICATIONS FOR FURTHER RESEARCH: Informal care is not often included in economic evaluations of mental health treatment. Although additional research is needed to understand better the mechanisms by which informal care and formal treatment are related, we believe our results offer a strong argument for including measures of informal care in future economic evaluations.     

Formal support of stroke survivors and their informal carers in the community: a cohort study

This cohort study, aims to explore formal care provision to stroke survivors and their informal carers in the community in the UK. An initial cohort of 105 cohabitant carers of first-time stroke patients was recruited while the stroke patient was in hospital. Structured face-to-face interviews were carried out with carers prior to discharge of the stroke patient home, at 6 weeks after discharge, and 15 months after stroke. Questionnaires included measures of psychological health (CIS-R), physical health (self-rated health), social well-being (relationship quality and Sarason's social support questionnaire), handicap of the stroke survivor (Oxford Handicap Scale) and formal community support (amount of formal support and carer satisfaction). Multiple services were involved with most survivor-carer pairs (mean 5.4; range 2-9; SD = 1.7), and 74% of carers were satisfied with formal support provided. Number of services decreased with time (5.5 versus 4.1, t = 4.201, d.f. = 52, P < 0.001, 95% confidence interval: 0.71-2.01) but not time allocated. Using stepwise linear regression, service provision early after discharge was predicted by: level of handicap, recruitment centre, carer self-rated health, number of informal supporters and other care commitments. Satisfaction was predicted by quality of informal support and activity restriction. Fifteen months after stroke, predictors of formal care were: level of handicap, quality of informal support and previous caring experience. Predictors of satisfaction were: quality of the relationship between the stroke survivor and carer, age and mood. Quality of services was good, but carers lacked information, had insufficient help and were not consulted enough. Carer distress is common, yet not currently a factor influencing support provision. Formal care provided adapts with time reflecting the importance of quality of support from friends and family rather than quantity of informal supporters. These factors should be taken into consideration when planning and providing formal support for stroke survivors and their carers.     

Informal care and terminal illness

This paper is based on a study of the care and services received by people in the year before death in one Yorkshire health authority. In the spring of 1997 in-depth interviews were carried out with bereaved relatives and carers of a weighted sample of 33 people who had died in one Yorkshire health authority in the previous 18 months. Deaths where people were judged to have needed no input from palliative care services were excluded. The sample covers a range of different caring arrangements, experiences of caring for someone who is dying, support from formal services, place and manner of death. All those interviewed were providing some form of informal care or support to those who died, in some cases 24-h care. The interviews provided a valuable insight into ordinary people's experiences of death and of caring for someone who is dying. Most importantly for the purposes of this study, they gave insight into their experiences of services to support both the dying person and themselves in their caring role. The paper discusses the ways in which care of the terminally ill is distinctive. It explores the role of informal care in relation to the wider character and history of the local community, in particular the significance of its declining industrial base, and secondly, the availability of appropriate services to support those caring for the terminally ill. Finally, it makes recommendations about service planning and delivery which challenge the current framework for providing services to the terminally ill.     

Informal caregivers' experiences of formal support in a changing context

As the location of long-term care of elderly people moves to homes and communities, and responsibility for care shifts to families, understanding the experience of people in this situation is necessary to ensure that support is appropriate, accessible and effective. The present paper explores informal caregivers' and recipients' relationships with formal support, drawing on thematic and narrative analysis of 30 in-depth interviews with self-identified family caregivers conducted over a year in a mid-size city in Ontario, Canada. All but six of these caregivers had had some interaction with formal support. The semistructured interviews explored caregivers' knowledge about, and perceptions and experiences of accessing and using formal support. Interpretation reveals how confusion and lack of knowledge about services, the inflexibility and lack of availability of services, and increasing pressure on the quantity and quality of publicly funded community-based resources combine to impact negatively on the experience of accessing and using formal support. Different ideas about the relative roles and responsibilities of seniors, informal caregivers and 'family' in general, and the state both shape and are shaped by policies and the situated realities of the provision of formal support. Providing care at home creates both opportunities and constraints for caregivers in their interactions with formal support. Lastly, this paper highlights the difficulties of interacting with publicly funded formal support as the costs of care are moved away from the state and onto families and individuals.     

Community Care of Older Women Living Alone

This paper compares the formal and informal care used by women living alone and women living with others using data from a household survey of women over 65. In contrast to those living with others, who use few formal services and receive most of their care from the children they live with, those living alone rely on a diverse group of informal caregivers and formal services, many of which are provided in their homes. Women living alone also report using mechanical devices more often, and are less confident that assistance will be available in the event of illness. Results are discussed from psychological and organizational perspectives.     

Community care of older women living alone

This paper compares the formal and informal care used by women living alone and women living with others using data from a household survey of women over 65. In contrast to those living with others, who use few formal services and receive most of their care from the children they live with, those living alone rely on a diverse group of informal caregivers and formal services, many of which are provided in their homes. Women living alone also report using mechanical devices more often, and are less confident that assistance will be available in the event of illness. Results are discussed from psychological and organizational perspectives.     

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.     

Individual determinants of task division in older adults' mixed care networks

Older adults in need of long‐term care often receive help from both informal and formal caregivers. The division of tasks between these different types of caregivers may vary among such mixed care networks. Traditional models of task division suggest that formal and informal caregivers may either supplement each other or specialise in the care activities performed. Our study explores the determinants of various forms of task division in the Netherlands, using data collected in 2007 on 458 mixed care situations. Four types of task divisions of informal and formal care are distinguished: the complementation model [neither Activities of Daily Living (ADL) nor instrumental ADL (IADL) tasks shared, 14%], the supplementation model (both ADL and IADL tasks shared, 39%) and informal and formal specialisation (one type of task shared, one type of task not shared, 27% and 20% respectively). Marginal effects calculated with multinomial regression analyses show that the intensity of care provision, the informal caregivers' motives and the presence of privately paid help – more than care receiver's health – are related to type of task division with formal care. For example, when the informal caregiver provides more hours of help and out of a strong personal bond, the likelihood of informal specialisation increases, whereas the likelihood of formal specialisation decreases. When privately paid help is present, the complementation model is more likely, whereas the supplementation model is less likely to be found. Results are discussed regarding the differential consequences for co‐ordination and co‐operation in mixed care networks.     

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.     

Experiences of elderly patients regarding independent community living after discharge from hospital: a longitudinal study.

OBJECTIVE: To describe the reported experiences of elderly patients regarding their transition from an acute hospital to independent community living. DESIGN: Observational longitudinal study based on semi-structured interviews conducted monthly for 6 months following discharge from hospital. SETTING: Four South Australian acute hospitals. Patients. One hundred elderly patients who faced a long-term change in health status and/or in their ability to manage practical aspects of daily living. MAIN OUTCOME MEASURES: Experiences in managing change in health status, social circumstances and independent community living. RESULTS: Few patients believed that discharge plans made in hospital had assisted their return to independent community living. Discharge planning addressed mainly formal health services rather than practical aspects of daily living. Many patients implemented innovative solutions when formal services were unavailable or inadequate. Pain, tiredness, loss of mobility, and grief over loss of previous abilities were frequent, long lasting sequelae to illness, and few discharge plans prepared patients to deal with this. CONCLUSIONS: Elderly patients who have left hospital to face a permanent change in health status often regret that they have not been better prepared for what lies ahead in terms of more specific information about their condition, linked with practical discharge plans that prepare them for their period of convalescence. We suggest that the underlying problem is a disjunction between the multiple systems involved in hospital discharge planning, primary medical care, disability-oriented community health services, and informal community services.     

Coordination between formal providers and informal caregivers

BACKGROUND: The increased "outsourcing" of care-related tasks to patients and their informal caregivers is part of a broader trend in service industries toward engaging customers as "coproducers" of service outcomes. As both quasi-patients and quasi-providers, caregivers may play a critical role in successful coproduction, but they require coordination with care providers to play this role effectively. When tasks are highly interdependent, uncertain, and time constrained, as they often are in health care, relational forms of coordination are expected to be most effective. PURPOSES: This study explores the effects of coordination between formal providers and informal caregivers on caregiver preparation to provide care at home and the effect of caregiver preparation on patient outcomes. Gittell's theory of relational coordination posits that effective coordination occurs through frequent, high-quality communication that is supported by relationships of shared goals, shared knowledge, and mutual respect. We extend the relational coordination model, previously used to examine coordination between formal providers, to encompass coordination of care between formal providers and informal caregivers. METHODOLOGY: We surveyed patients before and 12 weeks after knee replacement surgery to assess outcomes. At 6 weeks postsurgery, we surveyed their caregivers regarding coordination with providers and preparation to provide care. FINDINGS: We found that relational coordination between formal providers and caregivers improves caregiver preparation to provide care, which, in turn, is positively associated with patients' freedom from pain, functional status, and mental health. IMPLICATIONS: Providers should be encouraged to attend to the interpersonal aspects of their interactions with caregivers to promote relational coordination, which may ultimately benefit the patient's health. It is not enough, however, to urge providers to build shared goals, shared knowledge, and mutual respect with patients and caregivers. Dedicated resources and support are needed, given the context of constrained resources and brief encounters in which providers deliver 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.     

Balancing Formal and Informal Care

Implications of the presence of informal help for the adequacy of formal home care services are examined in a public program that restricts service authorizations to needs that are not addressed by informal caregivers. Four areas of need were examined: local transportation, shopping, housecleaning, and dressing/bathing. The mixture of formal and informal help varied greatly from one area of need to another. Contrary to expectations, the frequency of informal help tended to be positively associated with the reporting of unmet need. The data suggest that in some areas of need, the reporting of unmet need reflects the view that the demands on informal caregivers are excessive and that additional formal services would provide them with welcome relief.     

Balancing formal and informal care: meeting needs in a resource-constrained program

Implications of the presence of informal help for the adequacy of formal home care services are examined in a public program that restricts service authorizations to needs that are not addressed by informal caregivers. Four areas of need were examined: local transportation, shopping, housecleaning, and dressing/bathing. The mixture of formal and informal help varied greatly from one area of need to another. Contrary to expectations, the frequency of informal help tended to be positively associated with the reporting of unmet need. The data suggest that in some areas of need, the reporting of unmet need reflects the view that the demands on informal caregivers are excessive and that additional formal services would provide them with welcome relief.     

Informal care: the views of people receiving care

Informal care is perceived to be the best option for people who require assistance to look after themselves. National and international studies of informal care have focused on the carer, not on the care provided, or the needs and experiences of the care recipients. In the present study, 55 people receiving informal care (21 males and 24 females, mean age = 67.6) were surveyed to determine the type of assistance that they receive, perceptions of the quality of their care, feelings about being looked after by a carer and their perceptions of the services which would be useful. A random sample of 531 households were selected as part of a larger study into informal care in the west of Ireland. A total of 98 carers were identified and 55 of the people they looked after were well enough to participate in the study. Over two-thirds of carers assisted with household chores (e.g. cleaning, preparing meals and shopping). Other activities which carers assisted with included keeping the person safe from household accidents (62%), personal care (42%), and dressing and undressing (31%). Whilst most were very satisfied with the quality of care, a minority reported dissatisfaction, and stated that their carer showed signs of anger and frustration. Common concerns related to the health of the carer, their safety when the carer is not available and the cost of being cared for. Financial support for the person receiving care and the carer were the main priorities for these individuals. The present study points to a need for greater involvement of care recipients in planning services relating to informal care, and support and access to health professionals for people receiving care. People receiving care are also concerned about the level of financial support for themselves and their carers.     

Supporting family caregiver engagement in the care of old persons living in hard to reach communities: A scoping review

Today, 8.5% of the world's population is 65 and over, and this statistic will reach 17% by 2050 (He et al., U.S. Census Bureau, international population reports, P95/16‐1, An ageing world: 2015, U.S., 2016). They are the people who, with increasing age, will find themselves more closely interfacing with the national health system, which in many countries shows strong imbalances between rural and urban areas. In this context, a fundamental role is played by the relatives who find themselves becoming informal caregivers to compensate for lack of services. To date, however, little has been done to help these people. In this article, we want to identify the nature and extent of research evidence that had its objective to help informal caregivers in rural, hard to reach areas (Grant & Booth, Health Information & Libraries Journal, 2009, 26, 91). Following the approach set out by Arksey and O’Malley (International Journal of Social Research Methodology, 2005, 8, 19), we conducted a scoping review in May 2018 and closed the review with an update in September 2018. We identified 14 studies published from 2012, the European Year of Active Ageing, promoted by the European Commission, which had three domains of implementation: emotional support to decrease the emotional burden of caregivers, educational support to increase their skills, and organisational support to improve the mobility of caregivers and carereceivers. Although informal caregivers play a fundamental role in many countries, the studies that have been involved in alleviating their caring burden are few; nevertheless, they provide interesting indications. This lack of attention confirms how this portion of the population is still neglected by scientific research and risks having unequal access to health and social care. Future research is needed, not only to create and improve services to caregivers in rural, hard to reach areas, but also to evaluate and focus on the participation and the engagement of caregivers in the co‐design of these services.     

Quality improvement in the diagnosis and treatment of heart failure by participating Indiana and Kentucky hospitals.

Acute-care hospitals in Kentucky and Indiana collaborated with Health Care Excel, the Medicare peer review organization, to improve the care of patients admitted with heart failure. Current guidelines for the treatment of heart failure support a focus on quality indicators including confirmation of diagnosis, choice of therapeutic agents, education of patients and their caregivers, and discharge planning. Significant improvement occurred in use of diagnostic tests to confirm diagnosis and in patient education and discharge planing. Improvement in use of therapeutic agents was minimal or lacking in most hospitals. This project demonstrated an opportunity and need for continued improvement efforts in the care of heart failure patients.