Dignity and aspirations denied: unmet health and social care needs in an inner-city area

United Kingdom Government guidance emphasizes the importance of service users' choice, dignity and realization of their personal aspirations as essential values underpinning the implementation of its community care policies, including services for people living at home. In response to concerns expressed by senior officers in health and social services, a qualitative study was undertaken to identify gaps and overlaps in domiciliary health and social care services in an impoverished inner-city area. Thirty-seven people aged between 52 and 90 years, and identified as in need of domiciliary health or social care services, participated in in-depth interviews that sought to identify their health and social care needs, and how they wished them to be met. The 37 participants' accounts identified significant gaps within and between the domiciliary services provided, and little evidence of any overlaps. The principal concerns were loneliness and isolation, including bereavement, bathing and personal hygiene, and the scarcity of domiciliary services where only basic physical needs are met. Participants' accounts indicated that their contact with services was often limited so that little more was possible than bare physical maintenance, rather than empowering and supportive social care. The findings suggest that the 1993 community care reforms have had little impact on the daily lives of these frail and disabled people. Unless there are significant changes in resources for domiciliary services and in the way in which services are conceived and delivered, people dependent solely on state services will, as they have for many years, continue to be denied the choice, dignity and aspirations that official policy claims as its aims.     

Informal caregiving for frail older people at home and in long-term care institutions: who are the key supporters?

This paper describes the extent of the informal caregiving unit for older people who are physically or mentally frail living in private households or resident in long-term care institutions using cross-sectional analysis of survey data. A total of 1444 people aged 65 years or more registered with a general practitioner (GP) in four areas in England and, consenting to the study, were screened for mental or physical frailty. Of 1127 older subjects living at home 7% reported receiving no informal support, 15% had a paid supporter only and 78% nominated a key informal supporter who helped with defined activities of daily living of whom 650 (74%) were interviewed. Only 13% nominated more than one informal supporter. Key supporters were spouses (38%), daughters (30%), sons (9%), daughters-in-law (4%), other relatives (11%) and friends and neighbours (8%). Of 317 frail older people resident in long-term care institutions 175 (55%) received a main visitor at least once a week of whom 132 (75%) were interviewed. Main visitors were spouses (11%), daughters (36%), sons (23%), daughters-in-law (2%), other relatives (24%) and friends (4%). Qureshi & Walker's (1989) hierarchical, decision-making model for selecting informal caregivers was applied to the data and correctly identified 85% of key informal supporters and 79% of main visitors interviewed. This large-scale comprehensive survey of informal care for frail older people supports earlier small-scale localized studies highlighting the key role of spouses and daughters in the provision of informal support. Families of frail older people provide the support to maintain people at home.     

Home and community care for older people in urban China: Receipt of services and sources of payment

This study investigates the characteristics of Chinese older people receiving home and community care and the factors associated with the sources of payment for care services. The data come from the Social Survey of Older People in Urban China, which collected information from a random sample of 3,247 older people aged 60 and over in 10 large cities in different regions of China in 2017. Anderson's behavioural model of care utilisation is used to guide the analyses. The study identifies four striking features of the Chinese social care system. First, although disabilities are a significant predictor of receiving home and community care, a large proportion of care recipients do not have disabilities. Second, perceived proximity of care is the most important predictor, which implies high elasticity of demand for care services with regard to perceived distance and the great geographical inequality of care resources in the cities. Third, the government policies support the use of the internet to facilitate care access, but the enabling effect of the internet among older people is limited. Finally, sources of payment for care differ significantly according to people's age, living arrangements, disability and level of education. We argue that the government should consider shifting the focus of financial support from service providers to care recipients in the future.     

Food provision for older people receiving home care from the perspectives of home‐care workers

Malnutrition is a significant cause of morbidity and mortality, particularly among older people. Attention has focused on the inadequacies of food provision in institutions, yet the majority suffering from malnutrition live in the community. The aim of this study was to explore barriers and facilitators to food provision for older people receiving home care. It was a qualitative exploratory study using semi‐structured interviews with nine home‐care workers in June 2013 employed by independent agencies in a large city in northern England. Data were analysed thematically, based on the principles of grounded theory. Findings showed that significant time pressures limited home‐care workers in their ability to socially engage with service users at mealtimes, or provide them with anything other than ready meals. Enabling choice was considered more important than providing a healthy diet, but choice was limited by food availability and reliance on families for shopping. Despite their knowledge of service users and their central role in providing food, home‐care workers received little nutritional training and were not involved by healthcare professionals in the management of malnutrition. Despite the rhetoric of individual choice and importance of social engagement and nutrition for health and well‐being, nutritional care has been significantly compromised by cuts to social care budgets. The potential role for home‐care workers in promoting good nutrition in older people is undervalued and undermined by the lack of recognition, training and time dedicated to food‐related care. This has led to a situation whereby good quality food and enjoyable mealtimes are denied to many older people on the basis that they are unaffordable luxuries rather than an integral component of fundamental care.     

An evaluation of the effectiveness of engaging Canadian clients as partners in in‐home care

This exploratory quasi‐experimental evaluation assessed the effectiveness of the use of a concrete discussion guide to promote organisation‐wide application of a partnering approach to engage older home‐care clients with chronic disease/disabilities as care partners. A post‐test‐only design with an independent pre‐test sample was used to compare selected outcomes with those of standard in‐home care. The theoretically informed discussion guide portrayed how to go about the process of empowering partnering by using language and open‐ended conversational leads to construct partnering, partnering effort and health as a resource for everyday living through social interaction. The discussion guide was provided to all providers for use with all clients in one home‐care programme in Ontario, Canada and this organisation was compared with a similar but geographically distanced organisation, also in Ontario. Seven hundred and ninety‐one randomly selected clients (mean age = 72.5 years) receiving 3+ months of in‐home care for chronic conditions/disabilities from the two home‐care programmes between September 2007 and May 2010 completed a researcher‐administered questionnaire at either baseline, 1 year or 2 years. Instruments included the Client's Partnering Experience, Health‐Promoting Partnering Effort, a modified version of Locus of Authority in Decision‐Making, the Medical Outcomes Survey Self‐Rated Health Scale, Health and Social Services Utilization and a modified Functional Independence Measure. Analysis of covariance revealed that the use of the concrete discussion guide to promote organisation‐wide application of a partnering approach achieved significantly greater client partnering experience and health‐promoting partnering effort over time than did the usual approach to in‐home‐care interactions. Using the discussion guide enhanced client/provider partnering, hence, interdependence, contributing positively to promoting clients' health as a resource for everyday living.     

Attitudes towards rehabilitation needs and support from assistive technology and the social environment among elderly people with disability

This study aimed to survey the attitudes of elderly people with disabilities who were living at home regarding their support from assistive technology and the social environment. These attitudes were compared with their identified needs by an occupational therapist and in relation to perception of social engagement, loneliness and overall contentment with life. From a sample of 102 participants who were interviewed using a standardized procedure, 53 persons were included in the study. The results indicated that attitudes among elderly people towards social and occupational engagement and change have a greater influence on their rehabilitation status than their disability as indicated by their health condition and limitations in activities of daily living and instrumental activities of daily living. The elderly people who accepted rehabilitation were more able, and were better equipped and better supported with assistive technology, than those who declined rehabilitation. Rehabilitation needs that the occupational therapists recognized were not always shared by the disabled elderly people, for several reasons; one reason of particular importance was the elderly person's attitude towards change and social engagement. However, the small sample size limits the generalization of the findings to the population of elderly people with disabilities. An ethnographic research design that allows for repeated interviews and observations of elderly people with disabilities for a prolonged period of time in their ordinary everyday lives may present an avenue for future research and lead to a deeper understanding of the issues.     

Dignity under threat? A study of the experiences of older people in the United Kingdom.

Theoretical accounts have offered a general understanding of the social significance and importance of dignity and suggest that older age may threaten dignity by structuring and limiting the opportunities for participation and/or social recognition. Micro-sociological research has shown how older people negotiate their identity, in the face of its erosion by the aging body and disability and the domination of health and social care workers. These theoretical approaches inform the study presented here, which explores the meaning and experience of dignity for older people in their daily lives. Older people's accounts were elicited through a series of focus groups with participants living in England and Wales. Participants were selected according to predefined criteria to represent a range of different socio-economic and ethnic backgrounds, levels of fitness, and home circumstances. Personal identity and autonomy were the aspects of dignity most meaningful to the participants, and discussions tended to focus mainly on when personal identity and autonomy were threatened or violated in the context of the provision of health and social care. The authors discuss the extent to which older people's discourse on dignity resonates with the theoretical discourse.     

A survey of end-of-life care in care homes: issues of definition and practice

Care homes throughout the UK provide long-term care for frail older people. Whilst care homes are a home for life, many of the older people living in this setting also die there. There is increased interest in improving the care that older people receive in care homes towards the end of life. One way to achieve this has been through links with specialist palliative care services. The knowledge held in care homes by staff, residents and their family carers has yet to be fully integrated into this work. Consequently, a postal survey of care home managers in one English county was undertaken to examine the characteristics of end-of-life care for older people in these care homes. We sought to establish the managers' understanding of end-of-life care; the extent to which dying and death is present in this setting; the attributes of the resident population living in these care homes; and the availability of resources to support the provision of end-of-life care in this setting. The survey identified that managers held diverse understandings regarding the meaning of end-of-life care. The features of the residents' conditions and the dying that they experience requires a different way to conceptualise end-of-life care. A longer-term perspective is offered here that encompasses the whole period of a person's residence in a care home.     

Questioning “choice”: A multinational metasynthesis of research on directly funded home‐care programs for older people

In many developed contexts, home‐care services have been overhauled with the intent of increasing control and flexibility for those using social and health services. This change is associated with providing funds directly to individuals, and sometimes their families and supports, to arrange at home‐care assistance with the activities of daily living. Directly funded home‐care programs, or “direct funding” (DF), are not value‐neutral policy interventions, but complex and politicised tools for the enactment of care in contemporary times. In this qualitative metasynthesis, we consider 47 research articles published between 2009 and 2017 that explore various DF programs for older persons in the United Kingdom, Australia, and the United States to identify core concepts in the literature. We find that choice emerges as a central concern. We then assess the literature to explore the questions: How does the existing literature conceptualise choice, and the mechanisms through which choice is enhanced, in DF programs for older persons? How is choice, and the benefit of choice to older service users, understood in relevant studies? We argue that the concept of “choice” manifests as a normative goal with presumed benefits among the studies reviewed. Particularly when discussing DF for older people, however, it is essential to consider which mechanisms improve care outcomes, rather than focusing on which mechanisms increase choice writ large. In the case of DF, increased choice comes with increased legal responsibilities and often administrative tasks that many older people and their supports find burdensome. Furthermore, there is no evidence that choice over all elements of one's services is the mechanism that improves care experiences. We conclude by presenting alternative models of understanding care emerging from feminist and other critical scholarship to consider if we are, perhaps, asking the wrong questions about why DF is so often preferred over conventional home‐care delivery.     

A scoping review of personalisation in the UK: approaches to social work and people with learning disabilities

There have been rapid developments in personalisation of health and social care in the UK over the past 5 years to develop a more flexible model of provision based upon greater choice and control for service users. This has been important for people with learning disabilities who are often dependent on others such as social workers to support their autonomy and independence. This article discusses a study carried out to explore the impact of personalisation on people with learning disabilities and the role of social workers to support this. A scoping review of the UK literature from 1996 to 2011 was conducted. It was found that there has not been a significant amount of empirical research in this area. Some studies, such as reports by InControl, have suggested that when implemented well, personalisation can have a positive impact on the lives of people with learning disabilities. Other literature highlighted the limitations and critiques of personalisation. Without the right support to manage budgets and autonomy, people with learning disabilities could be left vulnerable. In respect of the social workers, the finding of the review was that there was a lack of guidance on how to implement personalisation and a perceived threat to their traditional practice role, resulting in barriers to implementation. Although the literature emphasises the need for choice, control and autonomy in personalisation, the conclusion of this study is that more research needs to be carried out into how professional roles fit into and can support this process.     

Advocating Mandatory Patient ‘Autonomy’ in Healthcare: Adverse Reactions and Side Effects

Promoting patient autonomy has become a key imperative in health service encounters. We will examine the potential negative effects of over-promoting patient autonomy and consider the impact on patient access, their experience and the provision of equitable services by focusing on an extreme manifestation of this trend, i.e. calls for patient involvement in health care decision making to be mandatory. Advocates of mandatory autonomy hold that patients have a duty to themselves, to society and to the medical system to make decisions on their health care independently. Models of mandatory autonomy may be contrasted to those of optional autonomy that seek to ascertain patients’ decisional preferences and to understand wider limitations on their freedom to choose. Where choice as decisional responsibility becomes mandatory it ceases to promote agency and where autonomous choice is understood as an individualistic practice it will contribute to the cultural dominance of Western values. Moreover, taking a view that principlist ethics needs to take account of the social and cultural contexts of individual lives, we argue that if mandatory autonomy were to be over-emphasised as part of an ongoing move towards patient choice in UK National Health Service (NHS), educated and affluent people would be more able to exercise choices at the expense of people who are experienced in asserting preferences and who have the resources to make use of choices. We will argue that the promotion of autonomy needs to be tempered by steps to enable less powerful social, cultural and economic groups to contribute to decision making and to support individuals who may feel abandoned by having decisional responsibility transferred to them. Until constraints on individual choice can be understood and addressed, we advocate the model of optional autonomy used in shared decision making and make recommendations for practice, policy, education and research.     

Experiences and perceptions of residential and home care services among older lesbian women and gay men in Australia

The needs of older lesbian and gay people regarding access and use of aged‐care services remain underresearched. This paper reports the findings of 33 qualitative interviews with older lesbian women and gay men about their perceptions and experiences of residential aged‐care and home‐based aged‐care services in Australia. The focus of this paper is their preparedness for using aged‐care services. The results highlight that participants had a number of concerns related to accessing residential‐care services in particular, including perceptions of a lack of inclusivity and concerns of potential for discrimination and hostility, loss of access to community and partners, decreased autonomy and concerns relating to quality of care and the potential for elder abuse. Participants noted a number of strategies they employed in avoiding residential‐care services, including the use of home‐care services, renovating the home for increased mobility, moving to locations with greater access to outside home‐care services, a preference for lesbian/gay‐specific housing and residential‐care options if available, and the option of voluntary euthanasia to ensure dignity and autonomy. Participants, on the whole, were hopeful that they would never require the use of residential‐care services, with some believing that having current good health or the support of friends could prevent this from happening. The findings suggest that older lesbian and gay people have a variety of concerns with aged‐care and may need additional support and education to improve their perceptions and experiences of services, whether these are needed presently or in the future.     

Living and dying: responsibility for end‐of‐life care in care homes without on‐site nursing provision ‐ a prospective study

The aim of the study was to describe the expectations and experiences of end‐of‐life care of older people resident in care homes, and how care home staff and the healthcare practitioners who visited the care home interpreted their role. A mixed‐method design was used. The everyday experience of 121 residents from six care homes in the East of England were tracked; 63 residents, 30 care home staff with assorted roles and 19 National Health Service staff from different disciplines were interviewed. The review of care home notes demonstrated that residents had a wide range of healthcare problems. Length of time in the care homes, functional ability or episodes of ill‐health were not necessarily meaningful indicators to staff that a resident was about to die. General Practitioner and district nursing services provided a frequent but episodic service to individual residents. There were two recurring themes that affected how staff engaged with the process of advance care planning with residents; ‘talking about dying’ and ‘integrating living and dying’. All participants stated that they were committed to providing end‐of‐life care and supporting residents to die in the care home, if wanted. However, the process was complicated by an ongoing lack of clarity about roles and responsibilities in providing end‐of‐life care, doubts from care home and primary healthcare staff about their capacity to work together when residents’ trajectories to death were unclear. The findings suggest that to support this population, there is a need for a pattern of working between health and care staff that can encourage review and discussion between multiple participants over sustained periods of time.     

Do models of care designed for terminally ill ‘home alone’ people improve their end‐of‐life experience? A patient perspective

Palliative care patients who live alone report greater psychological distress, and are less likely to die at home than those living with a family carer. However, there is a lack of research on the value of models of care that specifically address this disadvantage. This article describes the experiences of terminally ill ‘home alone’ people using one of two models of care aimed at maintaining participants’ need for independent living, focusing on the effect of these two models of care on their physical, social and emotional needs. Twenty six palliative care patients of Silver Chain Hospice Care, in Western Australia, were randomly assigned to either having a personal alarm or additional care‐aide hours in their home. An in‐depth qualitative study was conducted in two phases in 2010 using face‐to‐face interviews. The care‐aide model of care resulted in benefits such as easing the burden of everyday living; supporting well‐being; enhancing quality of life and preserving a sense of dignity; and reducing loneliness and isolation. The personal alarm model of care imparted a sense of security; provided peace of mind; and helped to deal with feelings of isolation. Participants in both groups felt that they could remain at home longer. By providing a safer, more secure environment through the use of a personal alarm or additional care‐aide hours, patients were able to continue their activities of daily living, could build a sense of ‘normality’ into their lives, and they could live independently through support and dignity.     

Can your house keep you out of a nursing home?

We examine the impact of the accessibility of an older individual's house on her use of nursing home care. We link administrative data on the accessibility of all houses in the Netherlands to data on long‐term care use of all older persons from 2011 to 2014. We find that older people living in more accessible houses are less likely to use nursing home care. The effects increase with age and are largest for individuals aged 90 or older. The effects are stronger for people with physical limitations than for persons with cognitive problems. We also provide suggestive evidence that older people living in more accessible houses substitute nursing home care by home care.     

The domiciliary care market in Scotland: quasi-markets revisited

By offering people the choice of care at home, the policy of encouraging local authorities to purchase domiciliary care services from voluntary and private providers was intended to achieve a key part of the community care agenda. A study to establish the extent to which there was a mixed economy in the purchase and provision of domiciliary care in Scotland in 1996 revealed reluctance by local authority managers to divest the provision of domiciliary care to voluntary and private agencies. In a telephone survey of purchasers, some social work respondents noted a preference for voluntary over private providers and expressed concern as to whether either could take over the bulk of domiciliary care provision. These attitudes were reflected in the pattern of market development observed. Five hundred and ninety providers were identified, but a postal survey of a random sample of one in two providers (response rate 66%) found that the independent sector's share of the market, measured as the proportion of weekly care hours provided, was small compared with the position in England and Wales at that time (15 : 36%). It is concluded that understanding of the development of the quasi-market in domiciliary care in the UK must now take account of slower development in Scotland. Explanation for the difference may lie in the level of state regulation, for in Scotland there was no compulsion on local authorities to purchase from the independent sector. Paradoxically, the quasi-market in England developed through strong state regulation, whereas in Scotland the strength of policy networks may account for the persistence of a more traditional welfare state model. The paper questions whether the incentives for change were sufficient in Scotland under the quasi-market. If local partnerships do not deliver these results the government may have to take a more active role to modernise domiciliary care services.     

Assessing the impact of a restorative home care service in New Zealand: a cluster randomised controlled trial

Due to the ageing population, there is an increased demand for home care services. Restorative care is one approach to improving home care services, although there is little evidence to support its use in the community setting. The objective of this trial was to evaluate the impact of a restorative home care service for community-dwelling older people. The study was a cluster randomised controlled trial undertaken at a home care agency in New Zealand. The study period was from December 2005 to May 2007. Older people were interviewed face-to-face at baseline, four and 7 months. A total of 186 older people who received assistance from a home care agency participated in the study, 93 received restorative home care and 93 older people received usual home care. The primary outcome measure was change in health-related quality of life (measured by the Short Form 36 [SF36] Health Survey). Secondary outcomes were the physical, mental, and social well-being of older people (Nottingham Extended Activities of Daily Living, Timed Up and Go, Mastery scale, Duke Social Support Index). Findings revealed that compared with usual care, the intervention demonstrated a statistically significant benefit in health-related quality of life (SF36) at 7 months for older people (mean difference 3.8, 95% CI -0.0 to 7.7, P = 0.05). There were no changes in other scale measurements for older people in either group over time. There was a statistically significant difference in the number of older people in the intervention group identified for reduced hours or discharge (29%) compared with the control group (0%) (P < 0.001). In conclusion, a restorative home care service may be of benefit to older people, and improves home care service efficacy.     

Dementia, disability and contact with formal services: a comparison of dementia sufferers and non-sufferers in rural and urban settings

This paper is based on data from studies conducted in the City of Liverpool and in a rural area of North Wales, relating to people aged 75 years and over living in the community. It compares those identified in these studies as suffering from cognitive brain disorders with other older people identified as being cognitively unimpaired and looks at levels of competence with activities of daily living and the subsequent levels of contact with a range of health and social services personnel and other community workers. It shows that although levels of contact with formal services are generally higher for people with dementia than for non-sufferers, most of these differences are below the level of statistical significance. It was found that levels of contact for people receiving most services are low, especially for specialist mental health services and social work. The implications for community care are discussed, it is suggested that expansion of domiciliary care services for people with dementia and for their carers would demand more resources than are currently being made available but that it would be better value for money on a case by case basis.     

Supporting the involvement of older adults with complex needs in evaluation of outcomes in long‐term care at home programmes

BackgroundIt is important to involve older people in evaluating public programmes that affect their lives. This includes those with physical and cognitive impairments (such as dementia) who may need support to live at home. Many countries have implemented new approaches to support older people to live well at home for longer. However, it can be challenging to involve disabled people in service evaluation, so we are unclear whether services are meeting their needs.AimThis study explored how a cascading methodology, offering different supports enabled the involvement of home care users with cognitive and physical impairments in the assessment of their care‐related quality of life.MethodWe used multiple tools from the Adult Social Care Outcomes Toolkit (ASCOT) with n = 63 older adults who were recipients of home care in the Illawarra. We also offered different physical and cognitive supports as needed.ResultsWe started with the standard ASCOT questionnaire to assess the care‐related quality of life, but then offered alternative formats (including Easy Read) and supports (including physical and cognitive assistance) if the older person needed them to participate. This allowed us to involve a greater diversity of older people in the evaluation, and changed what we found out about whether their care needs were being met.ConclusionThere is a need to implement more flexible and inclusive methods to increase the involvement of vulnerable users of long‐term care in the assessment of service outcomes. This is important to ensure that the perspectives of all service users inform the delivery of person‐centred care. It is also critical to understand the extent to which programmes are meeting the needs of vulnerable service users.Patient or Public ContributionService users with dementia were involved in the design of the ‘Easy Read’ questionnaire used in the study.