Community care for stroke patients in the last year of life: results of a national retrospective survey of surviving family, friends and officials

The quality of community care received in the last year of life by stroke patients and their informal carers is described. This is secondary analysis of data from the Regional Study of Care for the Dying, in which information was collected on a randomly selected sample of people who died in 1990, in 20 self-selected English health districts that were nationally representative in terms of socio-demographic characteristics and health care provision. The respondents comprised 20 spouses, 48 relatives, three friends or neighbours and 40 officials who had known about the last year of life of 111 people who died of stroke, and had spent some time at home (or in a residential or nursing home) in the last year of life. Two-fifths of those who died were reported to have needed more help with personal care (43%), a quarter to have needed more help with domestic chores (27%), and a third to have needed more financial help (31%). Three-fifths had spent some of their last year in a nursing or residential home (63%). Three quarters of respondents who had borne the brunt of caring reported that caring had restricted their own activities to a fair or severe extent (76%); only a third had found it a rewarding experience (32%). Spouses, and those caring for depressed or anxious stroke patients found caring particularly stressful. Stroke patients living in the community need more help with domestic chores and, in particular, with personal care. Informal carers require better support, especially spouses and for those caring for depressed or anxious stroke patients. Further research is required to identify and evaluate the most effective ways of meeting the needs of these patients and their families, and to explore the effects on their care of the Community Care legislation.     

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: 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.     

Which informal carers are most satisfied with services for dying cancer patients?

This paper examines the relationship between the satisfactionof informal carers with the care delivered to dying people inthe last year of life and patient and carer characteristics.A secondary analysis was conducted on a subsample from the RegionalStudy of Care for the Dying (RSCD) in which bereaved relativesor friends of a random sample of deaths in 1990 in 20 healthdistricts across England were interviewed some 10 months afterthe death. There were 1,858 informal carers who were close relativesor friends/neighbours of people who died from cancer in thisanalysis. Results show that highly satisfied carers were thosewho perceived caring as rewarding (OR=2.31, 95% Cl: 1.04–5.11),those who reported having had no unmet needs while caring forthe deceased at home (OR=2.50, 95% Cl: 1.87–3.34), andthose who rated their post-bereavement health as excellent (0R=2.61,95% Cl: 1.70–3.90). Reporting for the deceased who wereowner-occupiers was also associated with a high odds ratio forsatisfaction (0R=2.52, 95% Cl: 1.37–4.61). Factors suchas the patient's duration of functional limitation, the durationof confusion and psychological symptoms, and the carer's strengthof religious faith were also found to predict satisfaction butto a lesser extent. Health planners and managers should be awarethat informal carers' overall satisfaction with health and socialservices is predicted by carer and patient attributes.     

Estimating service demand for respite care among informal carers of people with psychological disabilities in Australia

Objective: To estimate service demand (willingness to seek or use services) for respite care among informal, primary carers of people with a psychological disability and to describe their characteristics. Methods: Analysis of data from the household component of the 2009 Survey of Disability Ageing and Carers (n=64,213 persons). Results: In Australia in 2009, 1.0% of people aged 15 years or over (177,900 persons) provided informal, primary care to a co‐resident with a psychological disability. One‐quarter (27.2%) of these carers reported service demand for respite care, of whom one‐third had used respite services in the past three months and four‐fifths had an unmet need for any or more respite care. A significantly greater percentages of carers with service demand for respite care spent 40 or more hours per week on caregiving, provided care to a person with profound activity restrictions and reported unmet support needs, compared to carers without service demand. Lack of suitable, available respite care models was a barrier to utilisation. Conclusions: Findings confirm significant service demand for, and under‐utilisation of, respite care among mental health carers. Implications: Increased coverage of respite services, more flexible service delivery models matched to carers’ needs and better integration with other support services are indicated.     

Gender differences in informal caring

Men have hitherto largely been invisible in research on informal care. This paper examines gender differences in informal caring, focusing on gender differences according to the relationship between the carer and care-recipient and the location of caring. The paper uses secondary analysis of the 1990–91 General Household Survey, which identified over 2700 adults as informal carers. Four per cent of men and women provide care for someone living in the same household. More women than men, 13% compared with 10%, provide care for someone living in another household. Men carers are less involved in care provision than women, providing fewer hours of care each week, and are less likely to be the main carer. However, gender differences are most marked among married carers, apart from those caring for their spouse, and least among unmarried carers. Married men can often rely on their wives to perform caring roles rather than performing them personally. Women carers are more likely to provide personal care than men carers, but the gender difference is least among those caring for their spouse or for disabled children. Cross-sex personal care is performed within the marital relationship and by parents caring for disabled children, but seldom by adult children caring for their parents or in more distant caring relationships. Evidence of cross-sex taboos in giving personal care is largely restricted to care provided in another household. Since the majority of elderly people in need of care are women, such cultural taboos may reinforce the pressure on mid-life women to care for mothers and mothers-in-law.     

Caring for children with specialized health care needs in the community: the challenges for primary care

People needing intensive and specialized health care are being cared for now in community settings; this has implications for both primary health care professionals and family carers. This paper draws on research investigating how services can be developed to support families caring for children with complex health care needs, to consider the challenges facing professionals working in the primary health care sector. Interviews conducted with parents, professionals and those who fund and commission specialized health services reveal particular problems in relation to the purchasing and provision of short-term care and specialist equipment/therapies in the community. These problems need to be addressed if people with specialized needs are to be cared for outside hospitals. The new Primary Care Groups (PCGs) will have the opportunity to enhance the provision of these services. Primary care professionals will also need to work in partnership with other sectors of the health service and with local authority services, at both strategic and operational levels, to develop integrated and coordinated services for this growing group of people.     

Combining paid work with eldercare: the implications for social policy

Government policy relies upon the continued provision of unpaid care from informal carers to groups such as elderly people. The majority of carers of elderly people are in employment and the number of people who combine care and work is likely to rise as the proportion of women and older workers in the labour force increases. However, recent public policy statements make little mention of the impact of informal care on employment and the difficulties associated with combining care and work. Likewise this issue has been ignored in the policy debate about the promotion of equal opportunities in employment, and in discussion of social policies for older workers, who among workers below pension age are the main providers of care for elderly people. This paper reviews the evidence concerning the relationship between employment and care of the elderly. It suggests an agenda of policy issues that need to be addressed, taking account of the fact that carers of elderly people are not a homogeneous group. A range of policy measures are discussed which would enable more carers to remain in employment, and allow other carers to return to the labour market, and hence reduce some of the financial and other costs associated with loss of employment.     

Older people--recipients but also providers of informal care: an analysis among community samples in the Republic of Ireland and Northern Ireland

Data on both the provision and receipt of informal care among populations of older adults are limited. Patterns of both informal care provided and received by older adults in the Republic of Ireland (RoI) and Northern Ireland (NI) were evaluated. A cross-sectional community-based population survey was conducted. Randomly selected older people (aged 65+, n = 2033, mean age (standard deviation): 74.1 years (6.8), 43% men, 68% response rate) provided information on the provision and receipt of care, its location, and the person(s) who provided the care. Twelve per cent of the sample (251/2033) identified themselves as informal caregivers (8% RoI and 17% NI). Caregivers were more likely to be women, married, have less education and have less functional impairment. Forty-nine per cent (1033/2033, 49% RoI and 48% NI) reported receiving some form of care in the past year. Care recipients were more likely to be older, married, have more functional impairment, and poorer self-rated health. Receiving regular informal care (help at least once a week) from a non-resident relative was the most common form of help received [28% overall (578/2033); 27% RoI and 30% NI]. Five per cent (n = 102/2033) of the sample reported both providing and receiving informal care. Levels of informal care provided by community-dwelling older adults were notably higher than reported in single-item national census questions. The balance of formal and informal health and social care will become increasingly important as populations age. It is essential, therefore, to evaluate factors facilitating or impeding informal care delivery.     

The medication role of informal carers

A qualitative study was undertaken to determine the role that informal carers perform with respect to dependants' medication. The objectives of the study were to understand the nature of medication-related assistance provided by informal carers and to identify any problems they encounter with this role. Face-to-face interviews were conducted with 20 informal carers who were known to provide medication-related assistance. Three group discussions were held with informal carers attending a local selfhelp group. Results from the study indicate that informal carers often provide support with all aspects of medication management including obtaining supplies, administering medication and monitoring effects. Other informal carers keep an eye on their dependant's medication but are not involved in the day-to-day management. The amount of support provided is influenced by the carer's and dependant's physical and mental ability. Furthermore, carers' commitments, such as family and work, and their relationship with the dependant will also affect the level of support they provide. A lack of medication-related knowledge, and an inability to access some of the pharmaceutical and medical services available, result in carers experiencing additional difficulties in fulfilling their role. More attention should be paid to the practicalities of managing medication. Furthermore, the needs of carers should be considered alongside those of the patient when developing pharmaceutical services. Such a philosophy would be in line with the provision of Community Care which advocates the development of services which are sensitive to carers as well as to dependants.     

Elderly people with cognitive impairment: costing possible changes in the balance of care

The objective of this paper is to investigate the service needs and support costs of elderly people with cognitive impairment on hospital and community health services, primary health care, social services, and informal carers in England. It examines the resource consequences of major changes in the provision of care, exploring the implications for both cost and effectiveness. The study was designed to provide a secondary analysis of the OPCS disability surveys in order to estimate the balance of care, and current provision of services. It also estimates of costs of present provision and potential policy options. Results show large scale improvements in the provision of care for people living in private households and local authority homes require significant increases in funding, but reductions in the provision of long-stay hospital beds can significantly reduce the cost burden to the public purse. Given the increasing demand pressure on health and social care expenditure, it seems unlikely that large scale improvements in the care supplied to elderly people with cognitive impairment can be achieved without some change in the balance of care. The cost of implementing improvements in care for the 200000 people living in private households and the 45000 people in local authority homes could be offset by reducing the provision of costly long stay hospital provision with alternative institutional care such as NHS nursing homes.     

Accessibility and equity of health and social care services: exploring the views and experiences of Bangladeshi carers in South Wales, UK

There is a paucity of information regarding the extent and nature of caring provided by minority ethnic communities. The proportion of older people from these communities will dramatically increase in the next 20 years, which will be accompanied by increasing health and social care needs and an increased demand for carers. A qualitative, exploratory study was conducted to identify the health and social care needs of informal carers, who were caring for a dependent adult from a Bangladeshi community in South Wales, UK. This paper focuses on Bangladeshi carers' access to formal support services provided by the statutory, private and voluntary sectors to assist them with their caring responsibilities. The findings are based on data collected using face-to-face, focused interviews with 20 Bangladeshi carers. Purposive and snowball sampling were used to recruit the sample. The data were analysed using thematic content analysis. The dimensions of accessibility and equity of quality of care were drawn upon to aid understanding of the findings. Bangladeshi carers faced a number of barriers in accessing health and social service provision, which impeded uptake of these services. Additionally, there was evidence of inequity in service provision. Recommendations for improving the accessibility of health and social care services are proposed, which may assist in promoting more equitable services for carers from the Bangladeshi community.     

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.     

Is occupation missing from occupational therapy in palliative care?

Background/aim: The role of occupational therapists in palliative care is largely undocumented in Western Australia (WA). Little is known about the services occupational therapists provide or the needs of people who are dying and their carers in relation to these services. The aims of this study were as follows. First, to determine the number of occupational therapists employed and the range of services they provide in palliative care in WA. Second, with particular reference to self care, leisure, productive roles and occupations, to explore the daily experiences of people who were dying as well as their primary carers to determine the services that might be offered by occupational therapy to this population. Methods: Semi‐structured interviews were used to gather information from carers (n = 10 metro, n = 4 rural) and occupational therapists (n = 13 metro, n = 5 rural). Data were analysed qualitatively using grounded theory to develop categories. Themes were defined using the constant comparison method. Results: Four themes emerged that impacted people who were dying and their carers. These were; ongoing disengagement from usual activities with resultant occupational deprivation; disempowerment of both people who are dying and their carers within palliative care services; ‘occupation’ not being addressed adequately in palliative care and occupational therapists experience frustration with limited opportunities to contribute to the care of people who are dying. Conclusions: This paper highlights gaps in service provision in WA to people who are dying and their carers. It provides direction for occupational therapists to offer an occupation‐focussed approach to the care of this vulnerable group.     

The impact of stroke on informal carers: a literature review.

Stroke incidence is set to rise in Western societies as population projections predict an increase in the proportion of older people. Most of these stroke survivors are supported by close kin members who play an important role in the rehabilitation and care of this group. The objective of this review was to establish the following: (a) to evaluate the impact of the stroke on the informal carers' quality of life, (b) to identify factors which help carers to cope with their caring role, (c) to evaluate health service provision for stroke carers. A systematic literature search using BIDS-EMBASE, MEDLINE and PSYCHLIT, identified 31 relevant studies. These showed that most studies concentrated on carers' psychological health and the negative impact that the stroke had. Carers ability to cope with the stroke was enhanced both by the use of positive coping strategies and more concrete measures e.g. more stroke information. Furthermore, whilst most carers were generally satisfied with health services, the few interventions directed at improving carer outcomes showed mixed results. The studies reviewed had many limitations; few gave definitions of 'informal' carer and there was a predominant use of cross-sectional studies and non-standardised outcome measures. Future studies should broaden their research question to evaluate quality of life, using standardised measures to do this and employing either a longitudinal or randomised control design to improve the robustness of results. More studies are also needed evaluating the effectiveness of health services on carers' quality of life.     

Carers' reflections on nursing home and NHS long-stay care for elderly patients

The aim of this study was to compare the perceptions of carers of elderly long-stay care patients who are now in nursing homes in three health districts in a former Regional Health Authority and in remaining long-stay geriatric National Health Service (NHS) wards. One hundred and ninety-eight nursing home carers (78%) and 128 NHS carers (83%) were interviewed by telephone, using a semi-structured questionnaire and open questions. The impact of caring at home was shown to be greater on NHS than on nursing home carers. Most were satisfied with the care, staff and atmosphere of the nursing home or hospital. Nursing homes were perceived to offer better ‘hotel’ facilities and a more pleasant environment. They were seen as better at respecting patients' privacy. The NHS was regarded as superior in offering clinical and rehabilitative services. Most participants thought the institution was the right place for their relative, although in general, it was thought to be better to care for elderly people at home. ‘Care in the community’ was supported, but carers were realistic about alternatives when informal care ceased to be a reasonable option. There was little ‘choice’ between public and private sector care. For many patients, entry into the institution followed directly from an acute hospital admission. The only choice was between care in a long-stay facility or remaining at home, with the patient becoming increasingly dependent and the carer becoming increasingly unable to cope. The formal aspect of community care should be to be organized rationally and accepted as a valid response to the needs of some dependent elderly patients and their carers.     

Elderly care recipients in a Swedish municipality living in their own homes: their diseases, functional health status and care provided as reported by formal carers

The aim of this study was to investigate from the perspective of formal carers the care given to people aged 65 and over, who are cared for in their own homes by informal care. Thirty-three district nurses (DNs) and 20 home service assistants in a municipality with 13500 inhabitants (over 65 years old), were interviewed about the location of care recipients and 398 care recipients were located. Most of them were over 80 years old and had more than one disease (62%), mostly related to the circulatory system (27%). Dependence in three or more of the Katz ADL categories was seen in 30%, reduced mobility in 67%, reduced memory in 34% to a degree that restricted their everyday life and 34% of them could seldom or never be alone. Care had been given for three years or more for 57% of these people. The monitoring of the disabilities and reduced functional health status differed significantly between the diagnostic groups. Home help service was associated with the care recipients' ADL index but not with their need for continuous monitoring. The DNs' care did not relate to any of the variables. In conclusion, diagnoses, the care recipients ability to be alone and functional health status are important variables to include when assessing the demands for home care and when planning supplementary care for home care recipients and their informal caregivers.     

Community-based post-stroke service provision and challenges: a national survey of managers and inter-disciplinary healthcare staff in Ireland

ABSTRACT: BACKGROUND: The extent of stroke-related disability typically becomes most apparent after patient discharge to the community. Maximising rehabilitation input at this point can minimise the impact of disability. As part of the Irish National Audit of Stroke Care (INASC), a national survey of community-based allied health professionals and public health nurses was conducted. The aim was to document the challenges to service availability for patients with stroke in the community and to identify priorities for service improvement. METHODS: The study was a cross-sectional tailored interview survey with key managerial and service delivery staff. As comprehensive listings of community-based health professionals involved in stroke care were not available, a cascade approach to information gathering was adopted. Representative regional managers for services incorporating stroke care (N=7) and disciplinary allied health professional and public health nurse managers (N=25) were interviewed (94% response rate). RESULTS: Results indicated a lack of formal, structured community-based services for stroke, with no designated clinical posts for stroke care across disciplines nationally. There was significant regional variation in availability of allied health professionals. Considerable inequity was identified in patient access to stroke services, with greater access, where available, for older patients (>65 years). The absence of a stroke strategy and stroke prevalence statistics were identified as significant impediments to service planning, alongside organisational barriers limiting the recruitment of additional allied health professional staff, and lack of sharing of discipline-specific information on patients. CONCLUSIONS: This study highlighted major gaps in the provision of inter-disciplinary team community-based services for people with stroke in one country. Where services existed, they were generic in nature, rarely inter-disciplinary in function and deficient in input from salient disciplines. Challenges to optimal care included the need for strategic planning; increased funding of healthcare staff; increased team resources and teamwork; and removal of service provision barriers based on age. There were notably many challenges beyond funding. Similar evaluations in other healthcare systems would serve to provide comparative lessons to serve to tackle this underserved aspect of care for patients with stroke and their families.