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.     

美国长期照护服务体系对中国的启示

本文综述了美国长期照护服务体系的服务机构、服务方式和服务提供者及其角色。美国长期照护服务机构可提供长期入住照护、短期入住照护、成人日间照护及居家照护服务,服务方式逐渐从机构服务向居家与社区服务转变。长期照护服务由正式照料者和非正式照料者共同提供,正式照料者提供有偿服务,非正式家庭照料者以女儿(29.3%)和配偶(21.2%)为主,随着居家和社区服务可用性增加,家庭照料者与有偿的正式照料者分担长期照护的可能性更大。美国长期照护服务体系结构完善,准入机制严格且系统,强调服务质量和效果评价,且重视老年人个人意愿,尊重其服务偏好和选择权利。基于美国的经验,我国在探索长期照护服务体系时,应以居家和社区照护为主,充分发挥社区卫生服务机构、社会和家庭的力量,注重服务机构和内容的多样化,建立完善和详细的服务使用评估标准,强调服务质量的有效性评价,体现人性化。     

Teachers' perspectives of supporting pupils with long‐term health conditions in mainstream schools: a narrative review of the literature

Teachers are supporting an increasing number of pupils with long‐term health conditions in mainstream schools. The aim of this literature review was to critically appraise and synthesise research that has examined teachers' perceptions of the key barriers and facilitators to supporting pupils with long‐term conditions, teachers' training needs and interventions that aim to improve teachers' knowledge of long‐term conditions, and teachers' confidence in supporting children and young people. A narrative literature review was conducted using a systematic search of computerised databases and manual searches of key journals and reference lists to retrieve studies published between 2003 and 2013. Studies were critically appraised and key themes across studies identified. In total, 61 papers from 58 studies were included in the review. The findings suggest that teachers receive little formal training relevant to long‐term condition management and are fearful of the risks involved in teaching children and young people with long‐term conditions. Communication between families, school and health and social care services appears to be poor. Educational programmes developed in conjunction with and/or delivered by healthcare professionals seem to have the potential to increase teachers' knowledge and confidence. This review suggests that healthcare professionals have an important role to play in supporting teachers in identifying and meeting the needs of pupils with long‐term conditions. It is vital that pupils with long‐term conditions receive appropriate care and support in schools to ensure their safety and help them to integrate with their peers and achieve their academic potential. Limitations in the current evidence are highlighted and implications for future research are identified.     

Are reasons for care‐giving related to carers’ care‐related quality of life and strain? Evidence from a survey of carers in England

In England, choice and control is promoted for service users in relation to social care services. Increased choice and control has also been promoted for unpaid carers, although this is still relatively underdeveloped. There is limited recognition of carers’ choice in terms of the decision of whether to provide care. Alongside the promotion of choice and control, there has also been a focus on quality of life as an outcome of social care for care‐recipients and their carers. Although it is known that carer choice (in terms of the decision of whether or not to provide care) is related to increased burden and poorer psychological health, there is limited evidence of the relationship between reasons for caring and care‐related quality of life (CRQoL) and subjective strain in England. In this study, 387 carers were surveyed across 22 English local authorities between June 2013 and March 2014. Multiple regression analysis explored the relationship between carer‐reported reasons for caring and CRQoL and strain, whilst controlling for individual characteristics (e.g. age). Reasons for caring were important predictors of CRQoL and strain. Where people were carers because social services suggested it or the care‐recipient would not want help from anyone else, this was related to lower CRQoL. By contrast, where carers took on care‐giving because they had time to care, this was significantly associated with better CRQoL. Carers reported greater strain where they provided care because it was expected of them. These findings are relevant to policy and practice because they indicate that, while social care systems rely on carers, the limiting of carers’ choice of whether to provide care is related to worse outcomes. Increased awareness of this relationship would be beneficial in developing policy and practice that improves the QoL of care‐recipients and also their carers.     

Labor supply effects of long‐term care reform in Germany

Many informal caregivers are of working age, facing the double burden of providing care and working. Negative labor supply effects can severely reduce the comparative cost advantage of informal over formal care arrangements. When designing long‐term care (LTC) policies, it is crucial to understand the effects not only on health outcomes but also on labor supply behavior of informal caregivers. We evaluate labor supply reactions to the introduction of the German long‐term care insurance in 1995 using a difference‐in‐differences approach. The long‐term care insurance changes the caregivers' trade‐off between labor supply and care provision. The aim of the reform was to strengthen informal care arrangements. We find a strong negative labor supply effect for men but not for women. We argue that the LTC benefits increased incentives for older men to leave the labor market. The results reveal a trade‐off for policy makers that is important for future reforms—in particular for countries that mainly base their LTC system on informal care.     

建设以健康为中心的医疗卫生服务体系

实现以人民健康为中心,是践行生命至上理念的重要体现,是提升人民群众健康获得感、幸福感和生活质量的根本性要求。本文提出了建设以健康为中心的医疗卫生服务体系基本框架,分析了人民美好健康需要的三个维度,讨论了以健康为中心的医疗卫生服务体系五个方面的建设任务和重点工作,提出了领导和治理、筹资、人力资源等五个方面的支撑和保障。     

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.     

‘If they’re helping me then how can I be independent?’ The perceptions and experience of users of home‐care re‐ablement services

Home‐care re‐ablement is a short‐term, intensive service that helps people to (re‐) establish their capacity and confidence in performing basic personal care and domestic tasks at home, thereby reducing needs for longer term help. Home‐care re‐ablement is an increasingly common feature of English adult social care services; there are similar service developments in Australia and New Zealand. This paper presents evidence from semi‐structured interviews conducted in early 2010 with 34 service users and 10 carers from five established re‐ablement services in England. The interviews formed part of a larger, mixed‐methods study into the immediate and longer term impacts and cost‐effectiveness of home‐care re‐ablement services. There was clear evidence that interviewees felt that they had benefitted from re‐ablement services; most service users and their families valued the intervention. However, the interviews also identified potential barriers to optimal independence for some service users, particularly those with progressive conditions, sensory impairments, specific cultural needs, or who lived alone. The beneficial impacts of re‐ablement could also be reduced if users failed to understand the aims of the service, or if the service failed to provide support with activities or outcomes that were particularly important to the service user or carer. Putting the lived experiences of people receiving re‐ablement at the centre of analysis, this paper concludes that re‐ablement services have the potential for enhanced effectiveness, particularly if there is more understanding of users’ own priorities and concepts of independence.     

Rapid evidence assessment of approaches to community neurological nursing care for people with neurological conditions post‐discharge from acute care hospital

Neurological conditions represent leading causes of non‐fatal burden of disease that will consume a large proportion of projected healthcare expenditure. Inconsistent access to integrated healthcare and other services for people with long‐term neurological conditions stresses acute care services. The purpose of this rapid evidence assessment, conducted February–June 2016, was to review the evidence supporting community neurological nursing approaches for patients with neurological conditions post‐discharge from acute care hospitals. CINAHL Plus with Full Text and MEDLINE were searched for English‐language studies published January 2000 to June 2016. Data were extracted using a purpose‐designed protocol. Studies describing community neurological nursing care services post‐discharge for adults with stroke, dementia, Alzheimer's disease, Parkinson's disease, multiple sclerosis or motor neurone disease were included and their quality was assessed. Two qualitative and three quantitative studies were reviewed. Two themes were identified in the narrative summary of findings: (i) continuity of care and self‐management and (ii) variable impact on clinical or impairment outcomes. There was low quality evidence of patient satisfaction, improved patient social activity, depression scores, stroke knowledge and lifestyle modification associated with post‐discharge care by neurological nurses as an intervention. There were few studies and weak evidence supporting the use of neurology‐generalist nurses to promote continuity of care for people with long‐term or progressive, long‐term neurological conditions post‐discharge from acute care hospital. Further research is needed to provide role clarity to facilitate comparative studies and evaluations of the effectiveness of community neurological nursing models of care.     

Older people's mental health in rural areas: Converting policy into service development,service access and a sustainable workforce

This paper describes the older people's mental health workforce development, policy development and implementation process and quantifies the rural service delivery and access impacts over a 15‐year period in New South Wales. It highlights the factors that are considered to be critical to successful rural service development such as commitment to funding parity, investment in strong local service leadership, and development of innovative, locally adapted rural service models. Building on these foundations, the Older People's Mental Health Program in New South Wales was able to address key challenges relating to service access in rural health and develop new, sustainable specialist older people's mental health service networks. A sustained focus on policy and implementation which explicitly supports rural older people's mental health service enhancement, and development of evidence‐based models of care, has significantly improved access to specialist mental health care for older people in rural areas. It has delivered 23 new rural older people's mental health community teams and a 440% increase in the number of people accessing these teams. It has also doubled the number of acute inpatient units and established new specialist mental health‐residential aged care partnership services in rural New South Wales. It has resulted in increased access to services for the “older old,” while not diminishing older people's rates of access to general adult mental health services. It has also supported innovative, sustainable rural service models such as “hub and spoke” models and step‐up step‐down inpatient services that build on existing health and hospital infrastructure and link geographically dispersed specialist clinicians and services together in rural service delivery.     

Living with motor neurone disease: lives, experiences of services and suggestions for change

Palliative care involves the complete, holistic care of people with progressive illness and their families. People living with motor neurone disease (MND) require a range of multidisciplinary palliative care services. However, there are significant gaps in our understanding of these people's lives, experiences of services and their suggestions for service change. The present study addressed the following questions: (1) What are the lived experiences of people living with MND? (2) What are people's experiences of services? and (3) Can improvements to care be identified? A qualitative research design was adopted using semi‐structured interviews. The topic guide was developed from existing literature. The study was based in three boroughs in London, UK. People living with MND and professionals were drawn from a database at King's College Hospital, and additionally, through ‘snowball’ sampling. Nine people with MND, five carers/family members and 15 professionals took part in the interviews. These interviews were audio‐taped, transcribed and checked for accuracy against the original recordings. Themes within the interviews were coded and grouped. The analysis was facilitated with the NVIVO computer software package. The findings are presented within three substantive groups: (1) the impact of MND on people's lives (the physical impacts of the illness, including increasing disability; social issues, including restrictions on social activities; and adjustments to people's lives, including methods of coping with the illness); (2) experiences of services (accessing service entitlements, information sources, professionals’ attitudes and approaches, and professionals’ knowledge and understanding of MND); and (3) suggestions for service change (better information and communication, including information on service entitlements; improved knowledge amongst professionals about MND; and some suggestions for service restructuring). This study brings a fresh approach to understanding the impacts of MND and the ways in which services can be improved to meet people's needs. The paper concludes with methodological considerations, the implications of the findings for practitioners and policy makers, and suggestions for further research.     

The context of coping: a qualitative exploration of underlying inequalities that influence health services support for people living with long‐term conditions

Coping with chronic illness encapsulates both practical and emotional aspects of living life in relation to one's long‐term health condition(s). Dominant health psychology approaches for understanding coping, which underpin a more recent policy discourse on ‘self‐management’, focus sharply on the person affected by illness and potentially mask the influence of overarching social structure. In this paper we draw on qualitative interviews with 48 people living with long‐term conditions (LTCs), in order to highlight the role that structural configurations such as healthcare systems may play in either helping or hindering people's efforts to cope with chronic illness. We argue that coping is a social process in which health and related services, situated within their wider political‐economic contexts, play an active role in shaping people's attempts to live well with LTCs. More specifically, health systems are sites of social and cultural capital exchange that can differentially mobilise coping resources through access, continuity of care, and coordination across services. Whilst it is essential to recognise the personal agency of people living with chronic illness, it is also vital to acknowledge the underlying inequalities that affect the ways in which services can support such resourcefulness.     

Long‐term Effects of Managed Care

Managed care (MC) plans have been introduced to curb the ever increasing health care costs. Many previous studies on effectiveness lacked a long‐term perspective; hence, the sustainability of (possible) savings remains unclear. Moreover, because of their incentives, MC plans are susceptible to under‐provision of care. Most of these possibly negative effects can only be observed in the long‐term. This paper analyzes the long‐term effects of MC plans on cost savings, mortality, and the use of service, using administrative data from a large Swiss health insurer. The identification is based on a propensity‐score matching approach, where individuals who enter an MC plan are compared over 10 years to individuals who remain in a standard fee‐for‐service plan. Cost savings are substantial and sustainable, and the mortality rate is lower in MC plans. Cost savings are driven by fewer consultations and fewer days in hospital care, although the probability of visiting a provider at least once per year is similar or even higher for persons in MC plans. Copyright © 2016 John Wiley & Sons, Ltd.     

Learning from people with long‐term conditions: new insights for governance in primary healthcare

The introduction of top‐down centrally driven solutions to governance of healthcare, at the same time as increasing policy emphasis on greater ‘bottom up’ patient and public involvement in all aspects of healthcare, has set up complex tensions for policy implementation and healthcare practice. This paper explores the interplay of these agendas in the context of changes in primary healthcare services provided by the National Health Service in England. Specifically, it looks at service user involvement in a qualitative study of the professional response to changes in the governance and incentives in the care of people with long‐term conditions. Service users influenced and guided the study at local and national levels. Vignettes of patient stories developed by service users informed in‐depth interviews with 56 health and social care professionals engaged in the development of local policies and services for people with complex long‐term illness, and themes generated by cross case analysis were validated through service users. The findings presented here focus on four themes about risk and comparison of professionals' and service users' perspectives of the issues: managing risks/consistent support, the risks of letting go/feeling in control, professional identity/helping people to help themselves, and managing expectations/professionals losing out. In this study, service user involvement added value by validating understandings of governance, framing debates to focus on what matters at the point of care and enabling perspective sharing and interaction. We suggest that more collaborative forms of governance in healthcare that take account of service user perspectives and enable interaction with professional groups could help validate processes of quality assurance and provide motivation for continuous quality improvement. We offer a model for ‘opening up’ collaborative projects to evaluation and critical reflection of the interrelationships between the context, methods and outcomes of service user involvement.     

Inflammatory bowel disease in young patients: challenges faced by black and minority ethnic communities in the UK

There is strong evidence indicating that inflammatory bowel disease (IBD) is increasing among black and minority ethnic (BME) communities. Despite this rise in prevalence, there is a paucity of research relating to ethnicity and IBD outside the USA. Furthermore, the symptoms of IBD are reported to start during childhood or adolescence in 20–25% of people with the condition. It is therefore important that young people's experiences of diagnosis, treatment and living with IBD are fully understood to ensure effective services and information provision. The study reported on in this paper was commissioned by a UK charity (Crohn's and Colitis UK) with the aim of increasing understanding of the specific issues and service needs of young people with IBD from BME communities. Empirical research entailed in‐depth semi‐structured interviews with 20 young people from BME groups accessed through gastroenterology departments at three collaborating NHS hospitals in England serving ethnically diverse populations. Interviews were carried out from June to December 2010 and sought to capture young people's views with IBD. A thematic analysis of their experiences identified many commonalities with other young people with IBD, such as the problematic route to formal diagnosis and the impact of IBD on education. The young people also experienced tensions between effective self‐management strategies and cultural norms and practices relating to food. Moreover, the ability of parents to provide support was hampered for some young people by the absence of culturally competent services that were responsive to the families’ communication needs. The findings highlight the need for more culturally appropriate information concerning IBD, and improved responsiveness to young people with IBD within primary care and the education system, as well as culturally competent messaging relating to the specific nature of the condition among the wider South Asian and black communities.     

Developing patient-centred information for back pain sufferers

Objective To identify information needs among a group of back pain sufferers as well as the barriers that may prevent them from accessing this information. Design Data were collected through the use of open, in‐depth interviews, through contributions to the Norwegian Back Pain Association's online discussion list, and through a search of the literature. Participants Norwegian back pain sufferers and their carers. Main variables studied Information needs and barriers. Results The informants described information needs that covered a wide range of topics, clinical, financial, emotional and social. Informants wanted to understand the cause of their pain and wanted information about existing diagnoses and diagnostic procedures. Informants asked for information about treatment alternatives, both within and outside the established health‐care system, the effects of these treatment alternatives, their procedures, side‐effects and costs. In addition, informants wanted information about the social and emotional effects of long‐term pain; coping with everyday life; other people's experiences; and about welfare benefits and patient rights. Barriers to this information included the use of medical, legal and other jargon, doctors’ lack of time, lack of communication skills, lack of knowledge about back pain and attitudes to back pain patients. Conclusions To successfully address the questions and concerns of users, there should be an attempt to present information on as many of these topics as possible. Information should be presented in the user's own language, at several levels of understanding, and should include both evidence‐ and experienced‐based knowledge.     

China's policy experimentation on long‐term care insurance: Implications for access

China's population is aging rapidly, while the traditional long‐term care (LTC) system that heavily relies on families is eroding. In response, China has embarked on a journey of policy experimentation for long‐term care insurance (LTCI) since 2016, launching LTCI pilots in 15 pioneer cities. These pilots have a great diversity in participation, eligibility, and provision. This paper estimates the prevalence of LTC needs and analyzes the impact of the LTCI pilots on access. Although substantial progress has been achieved, the overall coverage of LTCI is still relatively small, and a large proportion of vulnerable people needing LTC seem to be left behind because of the strict eligibility criteria. This analysis suggests that future policy experimentation on LTCI reform in China needs to address the following pressing policy issues: expanding the coverage of LTCI; narrowing rural–urban disparities in access; improving access for vulnerable subpopulations; and reducing the heavy reliance on institutional care.     

Perceived service quality,perceived value,overall satisfaction and happiness of outlook for long‐term care institution residents

Objective To investigate the psychometric properties and relationships of perceived service quality, perceived value and overall satisfaction for residents with respect to their long‐term care institutions. Design The five‐point Likert scale questionnaire administered through facetoface interviews. Setting Fourteen long‐term care institutions located in central and southern Taiwan stratified according to services and accommodation population. Participants One hundred and eighty long‐term institutional care residents. Main outcome measures Perceived service quality (the SERVPERF model), perceived value and overall satisfaction (models based on the literature on perceived value and satisfaction). Results Student’s t‐test on institutional location shows a significant difference between overall satisfaction for central and southern institution long‐term care recipients. The correlation test revealed that the higher a resident’s level of education, the higher the scores for perceived value. The factor loading results of confirmation factor analysis show acceptable levels of reliability and index‐of‐model fits for perceived service, perceived value and overall satisfaction. In addition, the results suggest that an additional construct, a positive attitude (happiness of outlook) towards long‐term care institutions, is also an important factor in residents’ overall satisfaction. Conclusion The primary goal of long‐term institutional care policy in Taiwan, as in other countries, is to provide residents with practical, cost‐effective but high‐quality care. On the basis of the results of in‐depth interviews with long‐term institutional care residents, this study suggests long‐term care institutions arrange more family visit days to increase the accessibility and interaction of family and residents and thereby increase the happiness of outlook of the residents.     

USING COST‐EFFECTIVENESS ESTIMATES FROM SURVEY DATA TO GUIDE COMMISSIONING: AN APPLICATION TO HOME CARE

The aim is to describe and trial a pragmatic method to produce estimates of the incremental cost‐effectiveness of care services from survey data. The main challenge is in estimating the counterfactual; that is, what the patient's quality of life would be if they did not receive that level of service. A production function method is presented, which seeks to distinguish the variation in care‐related quality of life in the data that is due to service use as opposed to other factors. A problem is that relevant need factors also affect the amount of service used and therefore any missing factors could create endogeneity bias. Instrumental variable estimation can mitigate this problem. This method was applied to a survey of older people using home care as a proof of concept. In the analysis, we were able to estimate a quality‐of‐life production function using survey data with the expected form and robust estimation diagnostics. The practical advantages with this method are clear, but there are limitations. It is computationally complex, and there is a risk of misspecification and biased results, particularly with IV estimation. One strategy would be to use this method to produce preliminary estimates, with a full trial conducted thereafter, if indicated. Copyright © 2013 John Wiley & Sons, Ltd.     

Financing elderly people's long‐term care needs: Evidence from China

Confronted by accelerated population aging, China is establishing a long‐term care (LTC) system. This study discusses challenges and recommendations for financing China's LTC system. On the basis of the data on elderly people's self‐care ability from the Chinese Longitudinal Healthy Longevity Survey, we calculate the size of the elderly population that need LTC for the period from 2015 to 2030 and analyse the increasing tendency of LTC expenses by considering the impact of price increase. We also analyse the local governments' financial capacity for LTC support by comparing the expense level to the fiscal revenue. The study found that aging will double the LTC expenses by 2030. Therefore, this study suggests the establishment of an LTC insurance system that allocates LTC expenses, which are currently borne by individuals and families, more fairly among the government, individuals, and families. Moreover, with the current LTC reforms, implemented primarily by local governments in China, we believe that the central government should bear some of the fiscal responsibility by conducting fiscal transfers to partially support undeveloped regions that are establishing an LTC system.