No description available.

Background. Health related quality of life (HRQoL) is an important outcome to assess in adult, general critical care survivors'. There are two expert consensus generic HRQoL measures-the SF-36 and EQ-5D-for this population, but there is still no agreed specific measure, despite the move towards using a combination of generic and specific measures in many other areas of health care. To address this gap, the research aims, first, to understand and define the concept of HRQoL from the perspective of survivors and second, to determine the extent to which the current expert consensus generic measures capture survivors' HRQoL, so that recommendations concerning a critical care-specific measure can be made. Methods. Semi-structured interviews were conducted using two strategies of data collection; an in-depth semi-structured interview based on a topic guide and a 'questerview2' (1), a form of cognitive debriefing that used either the SF-36 or the EQ- 5D to trigger narratives. Results. Based on study findings, it is recommended that the critical care-specific measure contain general questions that assess: 0 Survivors' emotional/psychological and cognitive statuses. 0 The following effects of survivors' personal status: - Certain restrictive effects of physical status and emotional/psychological status on activities and behaviours. - Increases in activities and behaviours caused by physical status and emotional/psychological status. - Impact of cognitive status on activities and behaviours (both restrictions and increases). - Impact of personal status on: perception of, interpretation of, and responses to life; personality; external appearance; physical zone of comfort and/or activity; suitability and availability of clothes; interactions and relationships with others; place of residence; and finances. To further refine the measurement of survivors' HRQoL, this measure should also: (i) specifically capture survivors' perceptions of the pertinent changes after critical illness; (ii) accurately reflect fluctuating changes; and (iii) encourage survivors to provide relevant information.

Long-term care (LTC) includes the range of health, social and voluntary support services provided to those with chronic illness, physical or mental disability. LTC has been widely studied in the literature, in particular due to concerns surrounding how future demographic shifts may impact the LTC system’s ability to cater to increasing amounts of patients not withstanding what the future cost impact might be. With that said, few studies have attempted to model demand at the local level for the purposes of informing local service delivery and organisation. Many developing countries with mature and developed systems of LTC in place are under pressure to reduce health care spend, whilst delivering greater value for money. We suggest that the lack of local studies in LTC stems from the lack of a strong case for the benefits of demand modelling at the local level in combination with low quantity and incomplete social care data. We propose a mathematical model to show how savings may be generated under different models of commitment with third party providers. Secondly, we propose a hybrid-fuzzy demand model to generate estimates of demand in the short to medium term that can be used to inform contract design based on local area needs – such an approach we argue is more suited to problems in which historic activity is incomplete or limited. Our results show that commitment models can be of great use to local health care planners with respect to lowering their care costs, at the same time our formulation had wider generic applicability to procurement type problems where commitment size in addition to the timing of commitments needs to be determined.

No description available.

This report outlines an Operational Research (OR) model to plan long-term care (LTC) provision for older people in urban and rural China. Many countries in both the developing and the developed world have been experiencing a marked demographic shift towards an ageing population. An ageing society can present challenges, such as addressing the high demand for health and social care amongst older people, particularly in the latter part of the life course. Planning, delivering and financing such LTC provision for older people can be a challenge for local and national governments. This research is part of the EPSRC Care Life Cycle (CLC) research project at the University of Southampton, which aims to build and use a suite of simulation models to assist UK policy makers at the national and local levels in planning health and social care provision more effectively for future cohorts of older people, both in the UK and globally. The model outlined in this report is a contribution to this body of work. This research involves the development and use of a discrete event simulation (DES) model (which is named as ‘SIMCARE-CHINA’ model) to display the different pathways for using alternative LTC services among older people in China: informal, institutional, community-based, private, and voluntary services. The number of people who do not need care or who have unmet needs is also included in the model. This model is applied to different areas/levels – urban areas and rural areas –to consider the different LTC demand projections. The main dataset used to make the projection is composed of the Chinese Health and Retirement Longitudinal Study (CHARLS) and the Chinese Longitudinal Healthy Longevity Survey (CLHLS). Data from other sources and previous studies are also used. SIMCARE-CHINA model can be used to test alternative scenarios and policy reforms and to evaluate their performance in terms of the LTC needs met amongst older people in urban and rural China, from the perspective of both the government and individuals. Thus, such modelling can offer researchers and policy makers an opportunity to understand the LTC system better and explore the outcomes and effects of different policies and reforms through simulation, with the aim of making recommendations for future improvements.

This study contributes to the evaluation of the role of financial incentives in achieving the reduction of hospital delayed discharges attributed to the implementation of the Community Care (Delayed Discharges etc. ) Act 2003. This policy imposes financial penalties for social services departments in England unable to provide the community care services required to discharge patients within set timescales. Once a multidisciplinary team decides that patients are safe to be transferred out of the hospital, social services are given three days to organise the discharge. If patients do not leave on the third day, a fine is imposed to social services of £100/120 per day and per person. This programme aims to resolve the issue of `bed-blocking', the loaded term used to describe patients whose discharge from hospital is not timed within the speed desired by the institution. This thesis performs a theory-driven evaluation, analysing the theoretical basis underpinning this complex policy following the realist framework. The use of a case study approach based on multiple methods of data collection in `real-time' helps unravel the complexities of this multi-agency initiative. Fourteen patients were followed through their hospital stay to identify flows and blockages in the programme. This data was compared with knowledge gained from other evaluations as a means to generalise the findings. The analytical process demonstrates that the Delayed Discharges programme is an amalgam of multiple innovations which includes financial incentives. Some of theseo ther measuresin tertwined with the fines to create mechanisms that, planned or unplanned, reduce delays or avoid fines. Sometimes they do it at the same time, but on occasions they do it in isolation. Consequently, mechanisms are embedded in the designed programme theory that allow for fines to be avoided without delays being necessarily reduced.

Addressing criticisms of the routine-driven, task-oriented, depersonalising nature of conventional services, and reflecting a broader trend across health and social care, person-centred care has become the watchword for quality in long-term care for older people in recent years. Person-centred care requires recognising the unique personhood of each individual regardless of their physical or mental capacity. Efforts to realise this approach depend largely on the non-professional nursing staff who deliver the majority of direct care in this context. However, little is known about how new knowledge, including ideas and evidence about person-centred care, translates into the daily practices of this cadre of staff, who have little formal training, low job status, and limited access to traditional forms of research dissemination and knowledge exchange. Building on the existing knowledge-translation literature, therefore, the aim of this study was to explore the mechanisms of knowledge translation about person-centred care among care assistants in long-term care. The objectives were to examine how these staff develop their understanding of person-centred care; identify the personal and contextual factors involved; and explore what can be learned about person-centred care from their current practices. The study used ethnographic methods, including 500 hours of participant observation, in-depth interviews, and document analysis, to conduct case studies of two private nursing homes located in the East Midlands and the north-eastern United States. Without claiming to demonstrate causality, extending the research across two policy settings did facilitate the identification of pertinent issues within and beyond each individual facility. Data analysis was informed by practice theory, which provided an alternative to the individualist assumptions which characterise popular representations of long-term care, on the one hand, and, on the other, structural explanations that renounce individual agency altogether. From this theoretical perspective, drawing in particular on Bourdieu‘s theory of practical logic and the neo-institutional concept of institutional logics, this study identified how the interconnection of particular practices within each setting produced different situated understandings and implementation of person-centred care. A key finding was that care assistants' individualised knowledge about each resident, obtained through their direct daily care, represented an important form of symbolic capital in this field. Their willingness or reluctance to share such knowledge, consequently, corresponded to the extent to which other practices, including communication and teamwork, supported or threatened this limited source of power. The second, related finding was that care assistants derived from this individualised knowledge a certain amount of autonomy, or discretion, over the organisation and delivery of daily care. This discretion, together with the agency that care assistants exercised in navigating different institutional logics in this context of care – which was the third main finding – signified a potential nexus of practice change. Conversely, new knowledge or ideas that undermined this limited discretion and agency tended to engender denial or resistance. As the population ages, demand for long-term care for older people is increasing exponentially, prompting concerns about the capacity and sustainability of this sector. One significant area of concern is workforce recruitment, retention, and competence. This study, located at the intersection of research on long-term care and knowledge translation, contributes to efforts to address these concerns by identifying opportunities for intervention in education, training, and support, in order to build a workforce that is equipped to provide high-quality, evidence-based, person-centred care for older people throughout the years ahead.

In the last 20 years the UK’s elderly residential care system has become progressively more privatised with an increase in the number of for-profit organisations delivering these services. This study is a participant observation of care work in one privatised elderly residential care home (‘Meadowvale’), owned and operated by a large provider of such services (‘Moonlight Care’). It provides a rich ethnographic depiction of life at Meadowvale both from the point of view of the workers and the residents. The thesis frames these ethnographic findings against pro-privatisation discourses which argue that serious raises in standards of service delivery are to be made from instilling profit motives within social care systems. I argue that there were a series of contradictions which prevented Moonlight Care from both achieving convincing levels of profitability whilst simultaneously improving the nature of elderly residential care. The fact that the revenue received was largely determined by the local government and the distinctive nature of care work inhibited the company from transforming the service for the better. Regulation, although crucial to ensuring that a base level of service quality was ensured, also represented a constraint on any possible restructuring. Greater gains could therefore only be increased through slashing the costs of production and enlarging the economies of scale. Both processes defined the business plan of Moonlight Care. This thesis, therefore, argues that privatisation was incongruent with quality of elderly residential care at Meadowvale. Privatisation led to a form of ‘parasitic’ production where efficiency gains and innovation were absent but business objectives were met by lowering the standards of living for the people who use the service and the wages and working conditions of the people who deliver the service. Cost rationalisation took an extreme form at Meadowvale with repercussions for both care workers and residents. Primarily the ethnographic data looks at the everyday effects of delivering care in this under-resourced labour process. The tasks of care were highly routinised within a system of bureaucratic control which emphasised the physical, “dirty” tasks of care and necessitated that all tasks were recorded. However, the numbers of workers always fell short of the workload leading to widespread falsification in the records. The high intensity of work at Meadowvale embedded various forms of mistreatment, abuse and neglect within the working routine. The system of bureaucratic control also emphasised the physical, ‘dirty’ tasks of care work, leaving little time for relational work. This instituted a particular form of emotional work which emphasised suppressing emotions in order to move from one task to the next as quickly as possible. This was considered problematic for many of the workers who felt that care work should be underpinned by emotional warmth and intimacy. The organisation of care labour at Meadowvale also ran contrary to the regulatory policy discourse which constructed quality care as personalised to each recipient, supporting lifestyle choice and personal preferences. This ‘personalisation agenda’ was a major component of the regulatory framework, but was impossible to implement under the strict routine which permeated care home existence. The responsibility of implementing the personalisation agenda was also constructed in training courses and official documentation as located with the workers, rather than with organisational structures, regimes or motives. This suggests an individualising process in which regulatory authorities and care companies attempt pass the responsibility and risk associated with providing these poorly resourced care services on to each individual worker. The thesis also explores the implications of the system of production in structuring the inequality experienced both by care workers and residents. The process of accumulation at Meadowvale could be described as ‘parasitic’ because profit arises from reducing the cost of production. Two major strategies for reducing expenditure that Moonlight Care utilised was securing a cheap, highly exploitable workforce and reducing the costs associated with care. The search for a cheap workforce has led to the employment of large numbers of migrant workers. Many of the migrant workers at Meadowvale were unable to find alternative employment because their visa’s either tied them to working in the social care sector, or in some cases, specifically to Moonlight Care. I also argue that immigration status supported higher levels of exploitation by denying welfare rights to migrant workers and their families. At the same time the residents at Meadowvale were subject to a system of care which often failed to cater for their needs. Not only were there were few luxuries associated with life at Meadowvale even basic care rights were frequently denied to the residents. During my time at Meadowvale the conditions for both staff and workers seemed to be deteriorating reflecting the endemic problems in the industry. The demand for cheap highly exploitable forms of labour and the denial of basic care rights for the residents can be theorised as interrelated processes connecting to the current system of residential care provision. At Meadowvale, the search for profit did not, as the proponents of privatisation suggest, lead to a system defined by choice, efficiency or quality.

Background: This thesis examines the impact of dream or wish fulfilment on seriously ill children and their families. Dream or wish fulfilment is operationalised as the actualisation of a seriously ill child’s wish by a charity that provides desired experiences. Anecdotal reports suggest that the experience of having a dream or a wish fulfilled can provide seriously ill children and their families with a sense of hope and time away from illness. However, little empirical research has been conducted in this area. This thesis reports the impact of dream fulfilment on the psychosocial well-being of ill children and their families. The research questions are: what is the experience of having a dream fulfilled for the child? What is the impact of dream fulfilment on the family? Methods: A constructivist grounded theory methodology was adopted, using theoretical sampling to recruit families from across the UK. Twenty-one families were interviewed, including 15 dream recipients, 8 siblings, and 24 parents. Analysis followed the grounded theory methodology of simultaneous data collection and development of theory, resulting in analytic interpretations of participants’ worlds. Results and Conclusions: This thesis reports for the first time a theory and accompanying theoretical model, that explain the impact of dream fulfilment on families’ lives. The generated theory suggests that dream fulfilment was conceptualised as an alternative milestone in seriously ill children and their families’ lives. Additionally, the dream experience shifted perceptions of illness by providing instances and experiences where illness did not underscore family life. Findings additionally suggest that the dream fulfilment process provided families with ill children, who often felt excluded and stigmatised from services, with a period of much needed support. Findings also highlight the unintended negative consequences of dream fulfilment. Implications for Dreams Come True, and other dream and wish fulfilment organisations are discussed.

This research was jointly funded by the Economic and Social Research Council (ESRC) and the Engineering and Physical Sciences Research Council (EPSRC). As such, its underpinning and innovative aim was to explore the use of Operational Research (OR) techniques, a research area traditionally associated with the EPSRC, to address key societal problems traditionally associated with the ESRC. The ageing population presents many significant challenges for social care services at both a national and local level, one of which is to meet the demand for long-term care. The population of people aged over 65 will continue to grow for some time as the ―baby boom‖ generation ages. The concern for policy planners is whether there will be enough resources in place to handle the expected strain on the system in the future. The research presented in this thesis addresses this key issue, and was carried out in collaboration with the Adult Services Department of Hampshire County Council (HCC). The overarching aim of this thesis was to develop computer models (using data local to Hampshire) which would be of practical use in estimating the future demand and planning the supply of long-term care in Hampshire. A cell-based model was built to forecast the demand for long-term care in Hampshire from people aged 65 and over for the period 2009 to 2026. An important part of this research was to understand the main drivers of future demand for long-term care and to predict the future number of people with a disability. Hampshire County Council has already tried to address these issues of demographic change through a modernisation programme. Part of this has been the establishment of a contact centre called Hantsdirect. A discrete-event simulation model of the contact centre was developed. The two models were combined to explore the short- and long-term performance of the contact centre in the light of demographic change. This hybrid model has enabled HCC to explore the short- and long-term performance of the contact centre. This study combines OR with Gerontology, Demography and Social Policy. This research is novel as it iteratively combines a compartmental population model with a discrete-event simulation model. From an OR perspective, the aim was not only to explore the use of modelling in social care (where, unlike healthcare, there has not hitherto been a lot of research), but also to investigate the potential for combining different modelling approaches in order to obtain additional value from the modelling. This novel approach in a social care setting is one of the main contributions of this thesis.