Self-assessment by elderly people-a means of identifying unmet need in primary care

The objective of this research was to assess the value of a self-completed questionnaire in identifying unmet needs amongst elderly patients in primary care. The setting was one general practice in Liverpool. A questionnaire was sent to all patients aged 75 and over on the practice age-sex register (n=498). Responses were compared with existing practice records. Measures were: self-reports of need with 18 questions covering social support, disability, recent life stresses and mood changes; recent contact with members of the practice team; perceived need to see members of the practice team; and evidence in practice records of recent contact and of awareness of elderly patients’ reported needs. There was an 84% response rate. Respondents reported a median score of three problems each (interquartile range 2–5), especially in social support, mobility, bereavement, illnesses and mood states. For people reporting six or more problems, practice records noted less than 50% of problems relating to social support, bereavement and memory. Amongst all respondents, those reporting problems with disability, recent illness and depressed mood were more likely to have been in recent contact with the primary care team than those who did not report such problems. Three further problems-social isolation, bereavement and memory loss-were not associated with increased likelihood of recent contact with the practice team, but were significantly associated with respondents’ expressed need to see a member of the practice. The self-completed questionnaire highlighted gaps in the primary care team's awareness of and response to elderly patients’ social and psychological problems.     

The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: a retrospective survey of surviving family and friends using the Views of Informal Carers Evaluation of Services questionnaire

Stroke is the third leading cause of death in the UK. Despite this, little is known about the care needs of people who die from or following a stroke. In early 2003, a total of 183 questionnaires were returned from a survey of 493 people who had registered a stroke-related death in four Primary Care Trusts, giving a response rate of 37%. This paper reports on 53 deceased from the survey who had lived at home during their last 3 months and who had been ill for more than 1 month. The data were analysed to explore the role of informal carers and the provision of community-based care in the last 3 months of life. Family and friends helped 82% of deceased with household tasks, 68% with personal care, 66% with taking medication and 54% with night-time care. By contrast, health and social services helped 30% with household tasks, 54% with personal care, 20% with taking medication and 6% with night-time care. Two-fifths (43%) of informants had to give up work or make major life changes to care for the deceased, and 26% of informants found looking after them 'rewarding'. Half (51%) reported that help and support from health services were excellent or good compared to 38% for social services. Results from the Regional Study of Care for the Dying indicated that people who died from a stroke in 1990 and their informal carers would have benefited from increased levels of community-based care and enhanced communication with care professionals. Our data suggest that informal carers continue to provide the majority of care for those who die from stroke, despite government initiatives to improve care for stroke patients and frail elderly people. Further research is required to explore best practice and service provision in caring for this group.     

Service use and needs of people with motor neurone disease and their carers in Scotland

A national study of patients with motor neurone disease (MND) and their carers was conducted in Scotland in late 1996. A questionnaire covering areas such as: use of medical, social and voluntary services; use of or waiting for specialised equipment; satisfaction with provided services; and standard demographic data was used in face-to-face interviews conducted by the four Scottish Motor Neurone Disease Association care advisers. The care advisers also assessed the respondent's level of impairment, using a standard instrument: the Amyotrophic Lateral Sclerosis Severity Scale (ALSSS). The data was analysed using SPSS-PC. In total 153 people participated (response rate 92%), and as expected with this patient group the study recruited more men (57%) than women. Sixty per cent of the sample was severely disabled as measured on the ALSSS. Health services did not meet the needs of respondents in 19% of the cases and social services failed to do so according to 24% of respondents. Eighty per cent of patients with MND had an identified carer. Nearly four out of 10 of these carers had their sleep disturbed regularly, and nearly a quarter of them would have liked to have more help. In addition, differences were found in service provision between the East and West of Scotland, and consequently differences in respondent's perceptions about the extent to which needs were met. As found in similar studies, the formal health and social care sectors in conjunction with voluntary organisations are only partially managing the trajectory of patients with a rare progressive degenerative disease.     

Palliative care on Kangaroo Island

Kangaroo Island is the third largest island of Australia and the largest island off the coast of South Australia. A cross-sectional survey was conducted of professional carers and closest caring person of 15 patients who had died of malignant disease between 1994 and 1996. There was a high level of satisfaction with services provided on Kangaroo Island. There was regret about over-optimistic prognoses being given by specialist medical practitioners and considerable dissatisfaction with the service provided by tertiary hospitals. A divergence in assessment of symptoms was revealed between carers and professionals. There is need for improved training opportunities for community nurses, improved financial support for families dealing with malignancy and a need for more formalised bereavement services.     

Satisfaction with the care-managed support of older people: an empirical analysis

Modernising Social Services requires the use of satisfaction surveys in monitoring some key aspects of quality of provision, including user/carer perceptions and experiences of services and involvement of users/carers in assessment and review. Using data from the study Evaluating Community Care for Elderly People (ECCEP), of physically and/or mentally frail community-based older people in England and Wales receiving community care services, this investigation examines three crucial aspects of user satisfaction. The measures were: initial satisfaction with the assessment process and help provided by social services; also two measures obtained from a six month follow-up, namely satisfaction with service levels and with the experience of social services. Examination of overall satisfaction levels provided only a partial picture, due to their association with both user characteristics and the effect of life satisfaction. This association was therefore examined firstly by considering each characteristic separately and secondly by modelling the presence of each satisfaction measure in terms of those characteristics having a significant effect, using logistic regression. Arthritis, loneliness, problems keeping warm and an inner city location were all characteristics associated with reduced satisfaction, while most resource inputs, including social work involvement, were positively related to satisfaction. General life satisfaction was also associated with increased satisfaction levels. The role of life satisfaction as a predictor was further investigated through examining its dependence on case characteristics. While older users were more frequently satisfied with life, those with greater functional impairment and below average self-perceived health reported lower life satisfaction. Findings from this study highlight the complexity of interpreting satisfaction data and suggest that those responsible for designing and conducting surveys need to be aware of both the potential and pitfalls associated with using them as a means of assessing the quality of social services for older people.     

‘But I do believe you've got to accept that that's what life's about’: older adults living in New Zealand talk about their experiences of loss and bereavement support

This paper explores older people's views, experiences and sources of bereavement support following the death of a spouse, family member or other significant individual. Telephone interviews were conducted with 28 bereaved older adults recruited from the Brief Risk Identification Geriatric Health Tool trial participants in three geographically diverse District Health Boards in New Zealand. Analysis adhered to the principles of grounded theory and followed the National Centre for Social Research ‘Framework’ approach. Findings indicate that family and friends play a fundamental role supporting older bereaved adults, both emotionally and practically. Existing community‐based organisations were identified as an important source of support following bereavement. Despite the emotional, financial and practical challenges associated with bereavement, the majority of participants questioned the role of, need for and value of formal bereavement support services. Instead, study participants cited a combination of being older and previous life experiences as factors that had enabled them to cope with these largely ‘expected’ events. Moreover, they demonstrated considerable resilience in managing the emotional and practical changes associated with loss and bereavement. This study poses a challenge to the argument that the growing secularisation of society has led to an increase in the use of professional bereavement services over more ‘traditional’ forms of support, such as family, friends and community and religious organisations. The paper highlights the value of adopting a public health‐based approach as a way of optimising bereavement support via the use of existing community organisations previously known to older people. This is particularly important in those countries where the provision of bereavement support is limited due to resource constraints.     

Difficulties in navigating the intersection of generalist and specialist palliative care services: A cross-sectional study of bereaved family's experiences of care at home in New Zealand

A generalist–specialist model of palliative care is well established as a framework for the provision of community care in resource-rich countries. However, evidence is lacking regarding how the model is experienced by family carers and the extent to which access to both generalist and specialist palliative care is equitable. A cross-sectional postal survey was undertaken to explore bereaved family's experiences of generalist palliative care and its intersection with hospice services in the last 3 months of life. A modified version of the Views of Informal Carers—Evaluation of Services survey was sent to 4,778 bereaved family. Data were collected between February 2017 and October 2018. Chi-square was utilised to identify factors that impacted on experiences of generalist palliative care; analysis of free text data comprising 45,823 words was undertaken using a directed content analysis approach. Eight hundred and twenty-six questionnaires were returned (response rate = 21%). Seventy per cent of people (n = 579) spent some time at home in the last 3 months prior to death. People who received support from hospice were more likely to receive support from multiple other services. Those who received no community services were less likely to feel supported by their general practitioner, less likely to spend the last 2 days of life or die at home. Feeling supported had a strong association with services working well together, being involved in decision-making and being aware of the poor prognosis. The provision of palliative care is complicated by a lack of integration with specialist palliative care and may be the basis of continuing inequities in the provision of community care at the end of life. The assumption at a policy level that “generalists” are willing and able to play a key role in palliative care provision needs to be further challenged.     

The placement of a social service care manager in a GP surgery as a way to improve carer access to services and improve liaison between statutory agencies

This paper reports on a pilot project funded jointly by South and West Devon Health Authority and Devon Social Service department which sought to overcome some of the problems encountered with liaison between services, and to improve carer experience and access to social services. This involved the placement in a Plymouth general practitioner (GP) surgery of a social service care manager who worked from the surgery and was allocated extra hours for carer support work. The project was evaluated and compared with the current experience of carers in the more 'traditional' setting. The experience and attitude of GPs in two other surgeries were also explored. The traditional model of work seen in Surgery B and C, the comparison surgeries, was a crisis intervention model which was regarded as adequate by the GPs involved, who had no experience of any other way of working. They directed the carers to telephone or write to social services themselves, or in a few cases the GP contacted social services on their behalf. However, the data showed that carers were less satisfied with this traditional model and preferred the more 'instant' access to support, made possible through the pilot worker in Surgery A. In the pilot project a short and informal visit to the pilot worker on request was seen as a relief by the carers. They had avoided the gate-keeping and bureaucracy involved in the 'normal' process. The drawing together of the various strands of the research showed conclusively that the pilot project in Surgery A was successful in meeting the majority of objectives set out for it. It has been a success in the perception of the carers and all of the professionals and staff involved. Staff involved all agreed that cross service collaboration between social services and the GP surgery had been improved, and that this had improved the service available to patients and carers.     

Perspectives of elderly people receiving home help on health, care and quality of life

From a nursing perspective it is important to have information about the type of care needed, the reasons care is needed and quality of life among the most elderly people living in their own homes, in order to support their independence and maximise their quality of life. Thus a study was performed to investigate people aged 75 years and older dependent on care from professionals and/or a next of kin, their functional health, diseases, and complaints in relation to quality of life as perceived by themselves. The sample (n = 448) comprised those who, in an age-stratified randomised sample of adults living in their own homes, responded that they were dependent on help from others. The questionnaire covered sex, age, living conditions, civil status and number of children and cohabitation, respondents' health, diseases, quality of life, help from another person, and the type and amount of help received. The number of elderly persons dependent on help ranged from 18.5 to 79.1% in the different age groups. The help came mainly from informal carers (84.1%), and, in 53.1% of cases, from the home help service and home nursing care. Help from formal caregivers was given in combination with that from a next of kin in 38.8% of the cases. More next of kin than formal carers helped in all Instrumental Activities of Daily Living (IADL) and Personal Activities of Daily Living (PADL) tasks, with the exception of cleaning the house and providing a bath/shower. Although the respondents received help themselves, they also helped another person in 6.5% of cases. The elderly reported a median of three diseases and ten different complaints of which pain and impaired mobility were the most frequent. Between 20 and 40% of the respondents in the different age groups reported restricted ability to be alone and one third of them reported low or very low quality of life. Multiple linear regression analysis showed the number of complaints, restricted ability to be alone, living alone and age to have a significant relationship on low quality of life.     

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.     

Formal carers: attitudes to working with the dementing elderly and their informal carers

This paper presents a discussion of some of the results arising from a study into the inter-relationships between the dementing elderly in the community, and their informal and formal carers. The results from one phase of the study, which gathered data from informal carers, were used in the development of an attitudinal questionnaire. The questionnaire was distributed to a sample of 60 formal carers drawn from a wide variety of health, social and voluntary services. The questionnaire sought to gather data about the formal carers’ responses to their work with dementing people and their co-resident informal carers. The results of the questionnaire indicated that most of the formal carers believed that it was part of their job to maintain the dementing person in their own home and that they were effective in doing this. However, many of the respondents were uncertain whether homecare was best for the dementing person. The results also suggested that the majority of respondents felt that maintaining the dementing person at home was not detrimental to the informal carers welfare and that their intervention was effective in supporting the informal carer. These findings are discussed within the context of the informal carer phase of the study and demonstrate some variance between the formal and informal carer perspectives of care control and the significance of formal carer input.     

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.     

Investigating the economic case of a service to support carers of people with dementia: A cross‐sectional survey‐based feasibility study in England

Carers contribute essential support to enable people with dementia to continue living within the community. Admiral Nurses provide specialist dementia support for carers of people with dementia, including offering expert emotional support and guidance, and work to join up different parts of the health and social care system to address needs in a co‐ordinated way. The cost‐effectiveness of this service is not clear. We undertook a feasibility study to explore related outcomes and costs for these carers. A cross‐sectional, clustered survey was undertaken in England in 2017, in areas with and without Admiral Nursing (AN). The survey questionnaire included questions on the characteristics of the carers and the person with dementia, outcomes (care‐related quality of life [CRQoL], self‐efficacy and subjective well‐being), use of health and social care services, out‐of‐pocket costs and time spent on informal care. We used different econometric techniques to compare the outcomes and the costs of the carers with and without AN services: linear regression, propensity score matching and instrumental variables analysis. These techniques allowed us to control for differences in observed and unobserved characteristics between the two groups of carers which determined outcomes and costs. We concluded that AN services might have a positive effect on carers' CRQoL, self‐efficacy and subjective well‐being. Furthermore, we found little difference in costs between carers using AN and those using usual care, or in the costs of the people with dementia they care for. Our findings provided an initial indication as to whether AN services could be good value for money. The key limitation of the study was the difficulty in controlling for unobserved characteristics because of the cross‐sectional nature of our observational data. To diminish this limitation, our survey could be used in future studies following carers with and without AN services over time.     

Parental satisfaction with follow‐up services for children with major anatomical congenital anomalies

Background Since 1999 a multidisciplinary follow‐up programme for parents and children with major anatomical congenital anomalies is in place in our hospital, run by a dedicated team. The aim of the present study was to evaluate the services of this team from a parental perspective. Methods Parents completed a questionnaire including open and closed questions about satisfaction with the various professional disciplines involved in the follow‐up, statements on usefulness of the follow‐up services and suggestions for improvement. Results Four hundred and sixty‐nine surveys were sent out, of which 71% were returned. Non‐responding parents included significantly more parents of non‐Dutch origin (P= 0.038) and parents who never responded to invitations for follow‐up examinations (P < 0.001). Parental satisfaction differed for the various disciplines. Eighty per cent of the parents were (very) satisfied with the social worker, compared with 92% with nurses. More than half of the parents agreed that the follow‐up services give peace of mind. Almost a quarter of parents, however, considered the follow‐up services as redundant. The children of these parents had significantly shorter intensive care unit stay (P= 0.02), were older at the time of the questionnaire (P= 0.04), of higher socio‐economic status (P= 0.001) and less likely to be of non‐Dutch origin (P= 0.008). Sixty‐one per cent of the parents had contacted the 24‐h helpline. Ninety per cent of the parents were satisfied with the intensive care unit, almost 80% with the general ward. Conclusion Overall, parents were satisfied with the services of the follow‐up team. Some parents, however, saw room for improvement related to better communication, recognizability of the team and better planning and organization.     

Being tough,being healthy: local forms of counselling in response to adult death in northwest Tanzania

While antiretroviral medicines have reduced AIDS-related deaths in sub-Saharan Africa, many people still lose multiple family members and struggle with the social and economic consequences of those deaths. This paper examines how older Tanzanians frame feelings of loss caused by the untimely death of young adults and how they advise other bereaved about how to manage loss. A local concept oyegumisilize – meaning ‘to move on and push grief and worries aside’ – is employed in offering bereaved persons advice about how to deal with feelings of loss. Older people try hard to manage memories of loss whilst simultaneously struggling to fulfil the social obligations around mourning that contribute to their ongoing bereavement. Oyegumisilize can be seen as a counselling practice that helps those who have lost loved ones to move on with life and feel normal. It is argued that this form of counselling is a form of therapeutic speech, where the emphasis is not on ‘talking through’ emotions, but on speech that is aimed at ‘toughening up’ the bereaved person. The findings presented here are based upon ethnographic research undertaken in Muleba District in Kagera Region, Tanzania, between 2003 and 2004, and follow-up research conducted in 2005, 2008 and 2012.     

Some issues in the provision of adult bereavement support by UK hospices

This paper considers some issues in the provision of adult bereavement support in UK hospices. The paper is based on the findings of a multi-method study conducted in two phases over 30 months (2003-2005) to examine the nature and quality of adult bereavement support in UK hospices from the perspectives of bereaved people and professional and volunteer bereavement workers [Field, Reid, Payne, & Relf (2005). Adult Bereavement Support in Five Hospices in England. Sheffield, UK: Palliative and End-of-Life Care Research Group, University of Sheffield. (Available from Professor Payne)]. It discusses the importance of continuity between pre-bereavement and bereavement support, the integration of bereavement services within hospices and the involvement of volunteers in bereavement support. It then discusses the engagement of UK hospices in the broader development of bereavement support. Although hospices have developed expertise in supporting bereaved people, our research suggests that they have not had a major impact on other health service providers, such as general practitioners and distinct nurses and staff in acute hospital trusts, in this area.     

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.     

Legacies of caring: the experiences and circumstances of ex-carers

Although there is extensive literature on carers and their care-giving role, the circumstances of carers after care-giving remains largely uninvestigated. This paper documents the socio-economic and psychological legacies of care-giving among 157 ex-carers who were included in a larger national study of the effectiveness and targeting of social security help to carers, which was carried out in 1989. Therefore, the sample included only those whose care-giving responsibilities had been relatively substantial, that is, over 35 hours a week. Survey data covering the employment status and income levels of these ex-carers are presented, as is in-depth interview material on the psychological and social circumstances of a small group of ex-carers. The article concludes that there are long-term negative financial effects of caring, which the social security system appears to ignore. In addition, the psychological, social and physical health consequences of caring may leave some carers poorly equipped for life after care, a situation which might call for the development of support services in the immediate post-care period. Further investigation of the material and non-material circumstances of ex-carers, preferably on a longitudinal basis, should be a priority in health and social care research. Without such research, our knowledge of the costs of caring borne by individuals, and our assessment of the appropriate contributions that should be made by statutory welfare agencies, remains incomplete. Finally, given the prevalence of informal care-giving, our lack of knowledge of the legacies of care-giving limits our understanding of the causes of income and health inequalities between people approaching pension age and older.     

Enhancing primary care support for informal carers: A scoping study with professional stakeholders

Informal carers (i.e. people who provide unpaid care to family and/or friends) are crucial in supporting people with long‐term conditions. Caring negatively impacts on carers’ health and experiences of health services. Internationally and nationally, policies, legislation, professional guidance and research advocate for health and care services to do more to support carers. This study explored the views of health and social care providers, commissioners and policy makers about the role and scope for strengthening health service support for carers. Twenty‐four semi‐structured interviews, with 25 participants were conducted, audio‐recorded, transcribed verbatim and analysed by thematic analysis. Three main themes emerged: (a) identifying carers, (b) carer support, and (c) assessing and addressing carer needs. Primary care, and other services, were seen as not doing enough for carers but having an important role in identifying and supporting carers. Two issues with carer identification were described, first people not self‐identifying as carers and second most services not being proactive in identifying carers. Participants thought that carer needs should be supported by primary care in collaboration with other health services, social care and the voluntary sector. Concerns were raised about primary care, which is under enormous strain, being asked to take on yet another task. There was a clear message that it was only useful to involve primary care in identifying carers and their needs, if benefit could be achieved through direct benefits such as better provision of support to the carer or indirect benefit such as better recognition of the carer role. This study highlights that more could be done to address carers’ needs through primary care in close collaboration with other health and care services. The findings indicate the need for pilots and experiments to develop the evidence base. Given the crucial importance of carers, such studies should be a high priority.