Facilitating choice and control for older people in long-term care

The community care reforms enabled some older people with severe disabilities to remain at home with domiciliary care services, as an alternative to institutional admission. This paper explores the extent to which the reforms actually enabled older people receiving domiciliary care to have greater choice and control in their daily lives than older people living in institutions. Findings are reported from a comparative study carried out in Greater Belfast, Northern Ireland, that determined the extent to which the subjective quality of life of older people – particularly autonomy – varied according to the type of setting. The older people were interviewed using a structured interview schedule and subjective autonomy was assessed using a measure of perceived choice. The measure consisted of 33 activities relating to aspects of everyday life such as what time to get up, when to see visitors or friends, and how much privacy was available. Qualitative data were also recorded which informed on the older people's perspectives on their own lives, particularly the extent to which they exercised choice on a daily basis. Two‐hundred and fourteen residents in 45 residential and nursing homes were interviewed, as were 44 older people receiving domiciliary care in private households. The study found that older people living in institutions perceived themselves to have greater decisional autonomy in their everyday lives than did older people receiving domiciliary care. Indeed, it was clear that living at home did not ensure that one's decisional autonomy would be supported. However, living alone may facilitate exercising a relatively higher degree of autonomy when living at home. Whilst the community care reforms have provided some older people who have severe disabilities with the option of receiving care at home, this has not necessarily enabled them to have greater choice and control in their everyday lives than older people admitted to institutions.     

Community care staff attitudes towards delivering a falls prevention exercise intervention to community care clients

Millions of older people world-wide receive community care services in their home to assist them to live independently. These services often include personal care, domestic assistance and social support which are delivered by non-university trained staff, and are frequently long term. Older people receiving community care services fall 50% more often than individuals of similar age not receiving services. Yet, few ongoing community care services include exercise programs to reduce falls in this population. We conducted an earlier study to examine the feasibility of community care staff delivering a falls prevention program. A critical finding was that while some of the assessment and support staff responsible for service delivery delivered the falls prevention exercise program to one or two clients, others delivered to none. Therefore, the aim of this qualitative sub-study was to understand reasons for this variation. Semi-structured interviews were conducted with 25 participating support staff and assessors from 10 community care organisations. Staff who had successfully delivered the intervention to their clients perceived themselves as capable and that it would benefit their clients. Older clients who were positive, motivated and wanted to improve were perceived to be more likely to participate. Staff who had worked at their organisation for at least 5 years were also more likely to deliver the program compared to those that had only worked up to 2 years. Staff that did not deliver the intervention to anyone were more risk averse, did not feel confident enough to deliver the program and perceived their clients as not suitable due to age and frailty. Experienced staff who are confident and have positive ageing attitudes are most likely to deliver falls prevention programs in a home care organisation.     

THE SMALL GROUP HOME:

This paper covers the possibilities of organizing community services and obtaining funding to make small group homes available to the poor. Statistics show that many frail elderly in nursing homes could funetion well in less protected environments if transition options for housing and services were available, such as the small group home. which fosters self-direction and "mainstreaming" of older persons in an ageintegrated community. It fills a major gap in the continuum of health services at about 213 the cost of nursing home care. Only a few states are experimenting with alternative Medicaid regulations which permit payment for health related services, maintenance, homemaking and ADL assistance. None are known to be testing the small group home concept. Thus many older persons requiring some services must be institutionalized, although there may be no need for intensive nursing care or 24-hour supervision. The poor older person's choice, in particular, is restricted by Medicaid regulations. Demonstration small group homes are proving both cost and care effective. Home Care Research in Frederick, Maryland has several such homes. Such alternative "family style" living, with health related services. should be made available to all persons who qualify, regardless of income.     

Factors associated with the amount of public home care received by elderly and intellectually disabled individuals in a large Norwegian municipality

This study reports an analysis of factors associated with home care use in a setting in which long‐term care services are provided within a publicly financed welfare system. We considered two groups of home care recipients: elderly individuals and intellectually disabled individuals. Routinely collected data on users of public home care in the municipality of Trondheim in October 2012, including 2493 people aged 67 years or older and 270 intellectually disabled people, were used. Multivariate regression analysis was used to analyse the relationship between the time spent in direct contact with recipients by public healthcare personnel and perceived individual determinants of home care use (i.e. physical disability, cognitive impairment, diagnoses, age and gender, as well as socioeconomic characteristics). Physical disability and cognitive impairment are routinely registered for long‐term care users through a standardised instrument that is used in all Norwegian municipalities. Factor analysis was used to aggregate the individual items into composite variables that were included as need variables. Both physical disability and cognitive impairment were strong predictors of the amount of received care for both elderly and intellectually disabled individuals. Furthermore, we found a negative interaction effect between physical disability and cognitive impairment for elderly home care users. For elderly individuals, we also found significant positive associations between weekly hours of home care and having comorbidity, living alone, living in a service flat and having a safety alarm. The reduction in the amount of care for elderly individuals living with a cohabitant was substantially greater for males than for females. For intellectually disabled individuals, receiving services involuntarily due to severe behavioural problems was a strong predictor of the amount of care received. Our analysis showed that routinely collected data capture important predictors of home care use and thus facilitate both short‐term budgeting and long‐term planning of home 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.     

Perceptions of unmet needs for community social care services in England. A comparison of working carers and the people they care for

Previous UK research has found expressed unmet need for services by unpaid working carers and among disabled and older people. There are, however, suggestions from research that views on unmet needs for services differ between carers and care‐recipients. Working carers in the UK say that the care‐recipient is sometimes reluctant to accept services and the few international comparative dyad studies that have been carried out find that carers perceive higher unmet need than care‐recipients. Recent policy discussions in England have also recognised that there may be differences of opinion. We collected data in 2013 from working carer/care‐recipient dyads in England about perceived need for services for the care‐recipient, disability, unpaid care hour provision and individual and socio‐demographic characteristics. We find that care‐recipients as well as their carers perceive high unmet need for services, although carers perceive higher unmet need. For carers, unmet need is associated with the disability of the carer‐recipient and being the daughter or son of the care‐recipient; for care‐recipients it is associated with unpaid care hours, carers’ employment status and carers’ health. The majority of dyads agree on need for services, and agreement is higher when the working carer provides care for 10 hours or more hours a week. Services for care‐recipients may enable working carers to remain in employment so agreement on needs for services supports the implementation of legislation, policy and practice that has a duty to, or aims to, support carer's employment.     

“It's a nice country but it's not mine”: Exploring the meanings attached to home,rurality and place for older lesbian,gay and bisexual adults

An ageing population across European nations, including the United Kingdom, brings with it new challenges for health and social care services and precipitates social policy initiatives targeted at meeting the care and support needs of a rapidly expanding number of older people. Ageing in place is one such policy driver—policy efforts that seek to promote the maintenance of older citizens residing in their own homes for as long as possible with minimal state intervention. Current generations of older lesbian, gay and bisexual (LGB) people have endured homophobia throughout their life histories, and sexual identity can shape perceptions and experiences of ageing, including experiences of home life, community and place. Our objective is to examine the meanings attached to home and place for older LGB adults living independently across three dimensions: rural places as “home,” connections to LGB communities, and social care provision in the home. We present interview findings from a mixed‐methods study on the social inclusion of older LGB adults in Wales. Twenty‐nine LGB‐identifying adults (50–76 years) self‐selected to participate in semistructured interviews between 2012 and 2013. Thematic findings from interviews indicate varying and contradictory meanings attached to home life in rural places, the importance of connection to communities of identity across geographical and online localities, and a high degree of ambivalence towards the prospect of receiving social care services in the home. We argue that a more nuanced understanding of the subjective meanings attached to home, rurality and community for older LGB people is needed to fully support LGB citizens to continue to live independently in their homes.     

Partnership working by default: district nurses and care home staff providing care for older people

Older people residents in care homes that only offer residential care rely on primary healthcare services for medical and nursing needs. Research has investigated the demands that care homes staff and residents make on general practice, but not the involvement of other members of the primary healthcare team. This paper describes two consecutive studies completed in 2001 and 2003 that involved focus groups and survey methods of enquiry conducted in two settings: an England shire and inner London. The research questions that both studies had in common were (1) What is the contribution of district nursing and other primary care services to care homes that do not have on‐site nursing provision? (2) What strategies promote participation and collaboration between residents, care home staff and NHS primary care nursing staff? and (3) What are the current obstacles and aids to effective partnership working and learning? A total of 74 community‐based nurses and care home managers and staff took part in 10 focus groups, while 124 care home managers (73% of the171 surveyed) and 113 district nurse team leaders (80% of the 142 surveyed) participated in the surveys. Findings from both studies demonstrated that nurses were the most frequent NHS professional visiting care homes. Although care home managers and district nurses believed that they had a good working relationship, they had differing expectations of what the nursing contribution should be and how personal and nursing care were defined. This influenced the range of services that older people had access to and the amount of training and support care home staff received from district nurses and the extent to which they were able to develop collaborative and reciprocal patterns of working. Findings indicate that there is a need for community‐based nursing services to adopt a more strategic approach that ensures older people in care homes can access the services they are entitled to and receive equivalent health care to older people who live in their own homes.     

互补还是替代：家庭照料与社区居家养老服务

文章使用国家卫生健康委2014年开展的中国计划生育家庭发展追踪调查数据,采用Probit模型和工具变量方法,实证检验家庭老年照料与社区上门生活护理服务和社区上门医疗服务之间的关系。研究发现：（1）家庭照料会显著减少老年人使用社区上门生活护理服务的概率,二者呈替代关系,但是在高龄和中、重度失能老人中,两者呈互补关系;（2）对于上门医疗服务则存在互补关系,家庭照料会显著增加老年人使用社区上门医疗服务的概率,但是在低收入老年人中,二者存在替代关系。文章建议社区居家养老服务体系建设要注重与家庭照料之间的协调发展,特别要关注高龄、中、重度失能和低收入老年人群体的照料需求,实现家庭照料与社区居家养老服务的优势互补。     

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.     

The challenges associated with providing community care for people with complex needs in rural areas: a qualitative investigation

The aim of the present study was to explore the experiences of recipients and providers of community care in rural areas in Northern Ireland. Additionally, the authors sought to examine the impact of location, housing and environmental factors on the delivery of community care to older people with complex needs. Individual, semistructured interviews were held with service users (n = 17) and family carers (n = 14). Individual and focus group interviews were conducted with care assistants, health and social care professionals, and senior managers from a large health and social care trust and health and social services board in Northern Ireland. The importance of enabling older people to remain in their own homes and communities was emphasised by all participants. The main challenges associated with care provision in rural areas included: difficulties recruiting care assistants; lack of choice of care assistants; isolation; travel and distance between clients and their care assistants; and poor housing conditions. There was a general consensus among participants that the effectiveness of rural community care was perceived to be reliant upon the goodwill of the community. Additionally, changing demographic trends and the predicted shortfall in the number of formal and informal carers were considered key issues for service planners. A number of creative strategies could be used to address many of the limitations associated with rural isolation. These should involve capitalising on available community networks. However, planners should also acknowledge that additional resources are required to maintain older people in rural communities.     

Experienced Quality of Post-Acute and Long-Term Care From the Care Recipient's Perspective–A Conceptual Framework

This article aims to conceptualize experienced quality of post-acute and long-term care for older people as perceived by care recipients. An iterative literature review and consultations with stakeholders led to the development of the INDividually Experienced QUAlity of Long-term care (INDEXQUAL) framework. INDEXQUAL presents the process of an individual care experience consisting of a pre (expectations), during (experiences), and post (assessment) phase. Expectations are formed prior to an experience by personal needs, past experiences, and word-of-mouth. An experience follows, which consists of interactions between the players in the caring relationships. Lastly, this experience is assessed by addressing what happened and how it happened (perceived care services), how this influenced the care recipient's health status (perceived care outcomes), and how this made the care recipient feel (satisfaction). INDEXQUAL can serve as a framework to select or develop methods to assess experienced quality of long-term care. It can provide a framework for quality monitoring, improvement, and transparency.     

Attractiveness of people‐centred and integrated Dutch Home Care: A nationwide survey among nurses

The World Health Organization is calling for a fundamental change in healthcare services delivery, towards people‐centred and integrated health services. This includes providing integrated care around people′s needs that is effectively co‐ordinated across providers and co‐produced by professionals, the patient, the family and the community. At the same time, healthcare policies aim to scale back hospital and residential care in favour of home care. This is one reason for the home‐care nursing staff shortages in Europe. Therefore, this study aimed to examine whether people‐centred, integrated home care appeals to nurses with different levels of education in home care and hospitals. A questionnaire survey was held among registered nurses in Dutch home‐care organisations and hospitals in 2015. The questionnaire addressed the perceived attractiveness of different aspects of people‐centred, integrated home care. In total 328 nurses filled in the questionnaire (54% response rate). The findings showed that most home‐care nurses (70% to 97%) and 36% to 76% of the hospital nurses regard the different aspects of people‐centred, integrated home care as attractive. Specific aspects that home‐care nurses find attractive are promoting the patient′s self‐reliance and having a network in the community. Hospital nurses are mainly attracted to health‐related prevention and taking control in complex situations. No clear differences between the educational levels were found. It is concluded that most home‐care nurses and a minority of hospital nurses feel attracted to people‐centred, integrated home care, irrespective of their educational level. The findings are relevant to policy makers and home‐care organisations who aim to expand the home‐care nursing workforce.     

Elderly care. Armchair theatre

The government's plan to free beds in the acute sector by discharging elderly people from hospital into private nursing homes are ill-thought out and a poor response to a complex problem. Older people may come to fear admission to hospital, seeing it as a prelude to being put in a home. Greater investment in community services would be the best hope of appropriate care for many older people. The government should have the need for hospital-based services for older people in the next three years and aim for a corresponding increase in good community services.     

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.     

‘I know they are not trained in dementia’: Addressing the need for specialist dementia training for home care workers

Global population ageing has meant a rapid increase in the numbers of older people with dementia, most of whom live in their own homes. Staying at home is an important determinant of health and well‐being. As care needs increase, the quality of community support which older people receive directly influences their capacity to remain in their own homes. While many are supported informally by family carers, formal support provided by home care workers often enables them to remain at home for longer period. However, providing community‐based care for people with dementia can be challenging. Workers often lack training in dementia‐specific care for clients with increasingly complex needs, and typically work without direct supervision. As the demand for person‐centred home care for people with dementia increases, specialist dementia training for home care workers is urgently needed. In this qualitative study, we used in‐depth interviews of a purposive sample, comprising 15 family carers and four older people with dementia, to understand the experience of receiving community care. Data analysis was guided by Braun and Clarke's approach to thematic analysis and revealed the following five overlapping themes, relating to home care workers’ understanding of dementia, person‐centred care, communication and rapport, mutual collaboration, and the influence of organisational constraints on continuity of care. Although participants acknowledged that service providers operated under challenging circumstances, they were frustrated with home care workers’ lack of dementia knowledge and inconsistent staff rostering. Conversely, an understanding of the lived experience of dementia, effective communication and rapport, and continuity of care contributed significantly to a positive experience of receiving care. The findings of this study will be used to inform the essential elements of a training program aimed at enabling and empowering a skilled, specialist home care workforce to support older people with dementia to live well at home for as long as possible.     

Unmet long‐term care needs and depression: The double disadvantage of community‐dwelling older people in rural China

This study investigates the relationship between unmet long‐term care needs and depressive symptoms among community‐dwelling older people in China. The data come from a nationally representative sample of 1,324 disabled older people from the China Health and Retirement Longitudinal Survey (CHARLS) collected between 2013 and 2014. Regression analyses were conducted to examine the factors associated with unmet needs and the impacts of unmet needs on people’s depressive symptoms. We found that disabled older people living in rural communities have a higher level of unmet needs than those in urban communities. Unmet needs cause more severe depressive symptoms among rural older people, but they do not have a significant impact among urban older people. Depressive symptoms are also affected by people’s health conditions in rural China and by household income in urban China. We argue that older people living in rural communities face a double disadvantage. The first disadvantage relating to unmet needs reinforces the second one relating to mental health. These findings highlight the urgent need for more investment by the Chinese central government in formal social care services and support for carers in rural areas.     

Improving Life Satisfaction for the Elderly Living Independently in the Community: Care Recipients' Perspective of Volunteers

With an aging population who wish to remain living in the community, this article explores the experiences and benefits of receiving volunteer services from a home support program established to assist people with increasing needs to remain living independently. Face to face interviews explored how the services of informal carers (volunteers) provided through the program made a difference to the daily lives of 16 recipients. Improved life satisfaction was identified through the themes of being helped with daily activities, positive human contact, and fear of a poorer quality of life. It was found that addressing recipients' social, emotional, and mobility needs supported them to remain living at home.