Very preterm infants in Finland - Use of health care services and economic consequences during the first five years of life

The aim of this thesis was to study the health, the hospitalisations, and the use of communal health care services in very preterm children during the first five years of life. In addition, the effect of very preterm birth and prematurity-related morbidities on the costs of hospitalisations, other health care services and the cost per quality adjusted life years (QALY) were studied. This population-based study included all very preterm children (gestational age (GA) <32 weeks or birth weight<1501g, N=2 064) and full-term controls (GA 37+0−41+6, N=200 609) born in Finland during 2000-2003. The data sources included national register data, costing data from the participating hospitals and parental questionnaires. This study showed that most very preterm infants born in Finland survived without prematurity-related morbidities diagnosed during the first years of life. They required relatively little hospital care after the initial discharge, which accounted for the vast majority of the total four-year hospitalisation costs. However, a minority of children born very preterm later developing morbidities had a long initial length of stay and more re-admissions and outpatient visits during the five-year follow-up period. In particular, the number and costs of non-emergency outpatient visits were considerable in individuals with prematurity-related morbidities. The need and costs of hospitalisations decreased clearly with each follow-up year, even in individuals with morbidities. The health-care related costs during the fifth year of life in children born very preterm without prematurity-related morbidities were close to the costs in infants born healthy at term. The cost per QALY of 19,245 € was at an acceptable level already by four years of age in the very preterm population as a whole. Prematurity-related later morbidities and decreasing GA increased the costs per QALY. As the initial hospital stay accounted for a great majority of the total four-year costs, and the costs of hospitalisation decreased with each follow-up year, the cost per QALY is likely to decrease with age. In conclusion, the majority of costs arising after the initial hospitalisation were associated with morbidities related to prematurity. Therefore offering high-quality neonatal care to prevent later morbidities in very preterm survivors has a long-term impact on the cost per QALY. In addition, this study indicates that when estimating the costs of prematurity after the first year of life, one should calculate not only the hospitalisation costs, but also other costs for social welfare services, primary care, and therapies, as these exceed the hospitalisation costs in very preterm infants during the fifth year of life.

Immediate Decision-Making and Information Needs in Intensive Care Coordination

The aim of this study was to develop a theoretical model for information integration to support the deci¬sion making of intensive care charge nurses, and physicians in charge – that is, ICU shift leaders. The study focused on the ad hoc decision-making and immediate information needs of shift leaders during the management of an intensive care unit’s (ICU) daily activities. The term ‘ad hoc decision-making’ was defined as critical judgements that are needed for a specific purpose at a precise moment with the goal of ensuring instant and adequate patient care and a fluent flow of ICU activities. Data collection and research analysis methods were tested in the identification of ICU shift leaders’ ad hoc decision-making. Decision-making of ICU charge nurses (n = 12) and physicians in charge (n = 8) was observed using a think-aloud technique in two university-affiliated Finnish ICUs for adults. The ad hoc decisions of ICU shift leaders were identified using an application of protocol analysis. In the next phase, a structured online question¬naire was developed to evaluate the immediate information needs of ICU shift leaders. A national survey was conducted in all Finnish, university-affiliated hospital ICUs for adults (n = 17). The questionnaire was sent to all charge nurses (n = 515) and physicians in charge (n = 223). Altogether, 257 charge nurses (50%) and 96 physicians in charge (43%) responded to the survey. The survey was also tested internationally in 16 Greek ICUs. From Greece, 50 charge nurses out of 240 (21%) responded to the survey. A think-aloud technique and protocol analysis were found to be applicable for the identification of the ad hoc decision-making of ICU shift leaders. During one day shift leaders made over 200 ad hoc decisions. Ad hoc decisions were made horizontally, related to the whole intensive care process, and vertically, concerning single intensive care incidents. Most of the ICU shift leaders’ ad hoc decisions were related to human resources and know-how, patient information and vital signs, and special treatments. Commonly, this ad hoc decision-making involved several multiprofessional decisions that constituted a bundle of immediate decisions and various information needs. Some of these immediate information needs were shared between the charge nurses and the physicians in charge. The majority of which concerned patient admission, the organisation and management of work, and staff allocation. In general, the information needs of charge nurses were more varied than those of physicians. It was found that many ad hoc deci-sions made by the physicians in charge produced several information needs for ICU charge nurses. This meant that before the task at hand was completed, various kinds of information was sought by the charge nurses to support the decision-making process. Most of the immediate information needs of charge nurses were related to the organisation and management of work and human resources, whereas the information needs of the physicians in charge mainly concerned direct patient care. Thus, information needs differ between professionals even if the goal of decision-making is the same. The results of the international survey confirmed these study results for charge nurses. Both in Finland and in Greece the information needs of charge nurses focused on the organisation and management of work and human resources. Many of the most crucial information needs of Finnish and Greek ICU charge nurses were common. In conclusion, it was found that ICU shift leaders make hundreds of ad hoc decisions during the course of a day related to the allocation of resources and organisation of patient care. The ad hoc decision-making of ICU shift leaders is a complex multi-professional process, which requires a lot of immediate information. Real-time support for information related to patient admission, the organisation and man¬agement of work, and allocation of staff resources is especially needed. The preliminary information integration model can be applied when real-time enterprise resource planning systems are developed for intensive care daily management

Effect of combined care nursing on patient satisfaction, staff satisfaction, and quality of care /

This research evaluates the effect of combined care nursing on three outcomes: i) patient satisfaction; ii) staff satisfaction; and iii) quality of care. Oakville-Trafalgar Memorial Hospital was in the early planning stages of changing to combined care nursing from the traditional method of providing separate postpartum and nursery care to mothers and babies. The opportunity existed to evaluate formally the change to combined care. There were three hypotheses to be investigated. Data were collected from four sources: patient surveys, staff surveys, informal interviews, and internal hospital documents. Both quantitative and qualitative data were analyzed. The surveys were administered on three different occasions to patients and staff. Other sources of data included informal interviews with patients and staff who responded to the surveys, and chart audits.The study findings revealed that the majority of respondents had increased levels of satisfaction and perceptions of increased quality of care following implementation of combined care. These findings, related to combined care and the role of change in its implementation and evaluation, indicate that there are no right or easy answers about how to make new ideas become reality in a smooth, pleasant way.

Wellness and balance: perceptions amongst female health care professionals negotiating career, family, and continuing education /

The purpose ofthis study was to explore the perceptions of wellness and bidance amongst female health care professionals negotiating career, family aiul continuing education commitments. Five women who met the criteria of having a family (with children), holding a full-time professional career in health care, and who were presently pursuing continuing education were interviewed. This paper begins with the introduction to the topic of research and the questions to be answered. The review of literature explores the theory and research A^ch precede this study and addresses the surrounding areas of: wellness, balance, multiple roles, stress and continuing education. < This study has assumed a qualitative, phenomenological approach. The data collected through the use of individual interviews were analyzed using a two-part process. Analysis using both (a) methodological interpretation and (b) The Listening Guide method has allowed for the uncovering of major themes, and the portrayal of each participant's unique experience. Some of the major themes which emerged from this research include: wellness as multidimensional and fluctuating, making personal sacrifices, the presence of stress, professional as a vital role, and continuing education as something for me. Perhaps the most significant finding this research has identified is the positive role continuing education can hold in the lives of women already negotiating multiple commitments. The notion that continuing education can act as a means of enhancing perceptions of wellness and balance holds a number of implications in theory, practice, and for future research.

Child care by choice or by default? : examining the experiences of unregulated home-based child care for women in paid work and training

This thesis aims to uncover the dynamics, causes and outcomes of women's reliance on unregulated home-based child care in Ontario, Canada, and the implications ofthis form of care for women's equality. Drawing on a longitudinal qualitative study, I examine the diverse experience of 14 women using home-based child care and engaged in both paid work/training and care work for children under the age of six, and draw comparisons with users of other forms of child care. I argue that home-based child care involves high levels of instability for continuity of care and is chosen largely as a default position based on economic considerations. It represents a compromise between the demands of social reproduction and paid work/training that entangles mothers in relations of exploitation with care providers. Doing so leaves both mothers and care providers socially and economically vulnerable and relying on social networks to fill in the gaps.

Workforce Issues in the Greater Boston Health Care Industry: Implications for Work and Family

Interviews with more than 40 leaders in the Boston area health care industry have identified a range of broadly-felt critical problems. This document synthesizes these problems and places them in the context of work and family issues implicit in the organization of health care workplaces. It concludes with questions about possible ways to address such issues. The defining circumstance for the health care industry nationally as well as regionally at present is an extraordinary reorganization, not yet fully negotiated, in the provision and financing of health care. Hoped-for controls on increased costs of medical care – specifically the widespread replacement of indemnity insurance by market-based managed care and business models of operation--have fallen far short of their promise. Pressures to limit expenditures have produced dispiriting conditions for the entire healthcare workforce, from technicians and aides to nurses and physicians. Under such strains, relations between managers and workers providing care are uneasy, ranging from determined efforts to maintain respectful cooperation to adversarial negotiation. Taken together, the interviews identify five key issues affecting a broad cross-section of occupational groups, albeit in different ways: Staffing shortages of various kinds throughout the health care workforce create problems for managers and workers and also for the quality of patient care. Long work hours and inflexible schedules place pressure on virtually every part of the healthcare workforce, including physicians. Degraded and unsupportive working conditions, often the result of workplace "deskilling" and "speed up," undercut previous modes of clinical practice. Lack of opportunities for training and advancement exacerbate workforce problems in an industry where occupational categories and terms of work are in a constant state of flux. Professional and employee voices are insufficiently heard in conditions of rapid institutional reorganization and consolidation. Interviewees describe multiple impacts of these issues--on the operation of health care workplaces, on the well being of the health care workforce, and on the quality of patient care. Also apparent in the interviews, but not clearly named and defined, is the impact of these issues on the ability of workers to attend well to the needs of their families--and the reciprocal impact of workers' family tensions on workplace performance. In other words, the same things that affect patient care also affect families, and vice versa. Some workers describe feeling both guilty about raising their own family issues when their patients' needs are at stake, and resentful about the exploitation of these feelings by administrators making workplace policy. The different institutions making up the health care system have responded to their most pressing issues with a variety of specific stratagems but few that address the complexities connecting relations between work and family. The MIT Workplace Center proposes a collaborative exploration of next steps to probe these complications and to identify possible locations within the health care system for workplace experimentation with outcomes benefiting all parties.

Acogimiento en familia extensa: un estudio desde la perspectiva de los acogedores, de los niños y niñas acogidos y de los profesionales que intervienen. = Kinship foster care: a study from the perspective of the caregivers, the children and the child welfare workers

Desde hace aproximadamente dos décadas, en la mayoría de los países occidentales, los acogimientos en familia extensa han entrado a formar parte de los sistemas de protección infantil, siguiendo una evolución creciente en cuanto a número y peso especifico como recurso de acogimiento. Las investigaciones sobre este fenómeno son aún recientes y escasas como también lo son los programas dirigidos a esta población. En el presente artículo presentamos los resultados de un estudio descriptivo sobre los acogimientos en familia extensa en la ciudad de Barcelona, donde se recogen datos de los principales agentes implicados en este fenómeno. Desde la perspectiva de los estudios de la calidad de vida se analizan las percepciones, evaluaciones, y satisfacción expresada, por parte de los acogedores, los niños/as acogidos y los profesionales de los Equipos de Atención a la Infancia y Adolescencia (EAIA) que se encargan del estudio y seguimiento de estos acogimientos. La investigación presenta unos resultados acordes con los estudios que actualmente se realizan en este ámbito y sienta las bases para el despliegue futuro de programas dirigidos a los acogimientos en familia extensa

Kinship foster care: a study from the perspective of the of the caregivers, the children and the child welfare workers

In the last twenty years, in most Western countries, kinship foster care has become an integral part of childcare systems, growing progressively with regard to the numbers of children involved and relative weight as a care resource within the system; indeed, in some countries it is even more common than other placement options, such as non-kinship foster care and residential care. Research on this phenomenon is still recent and scarce, and there are few programmes targeting this population. In this article we present the results of a descriptive study on kinship foster care in the city of Barcelona, including information and data from the different stakeholders involved. From a quality of life research perspective we analyze the perceptions, evaluation and expressed satisfaction of caregivers, children and practitioners from the specialist Child and Adolescent Teams (EAIAs) responsible for the study and follow-up of kinship foster care cases. The research presented results are in line with those of current research in this field, and lays the basis for the future development of kinship foster care programmes

Interdependency and care over the lifecourse

Interdependency and Care over the Lifecourse draws upon theories of time and space to consider how informal care is woven into the fabric of everyday lives and is shaped by social and economic inequalities and opportunities. The book comprises three parts. The first explores contrasting social and economic contexts of informal care in different parts of the world. The second looks at different themes and dynamics of caring, using fictional vignettes of illness and health, child care, elderly care and communities of care. The book examines the significance to practices of care throughout the lifecourse of: understandings and expectations of care emotional exchanges involved in care memories and anticipations of giving and receiving care the social nature of the spaces and places in which care is carried out the practical time-space scheduling necessary to caring activities. Finally the authors critically examine how the frameworks of caringscapes and carescapes might be used in research, policy and practice. A working example is provided. This book will be of interest to students and researchers of care work, health and social care, geography, sociology of the family and social policy as well as those in business and policy communities trying to gain an understanding of how work and informal care interweave

Enabling older people to stay at home: The costs of substituting and supplementing care with assistive technology

A wide-ranging multiprofessional research project explored issues relating to the introduction of assistive technology into the existing homes of older people in order to provide them with the opportunity to remain at home. The financial relationship between assistive technology and packages of formal care was also explored. The costs of residential care and those of a number of packages containing differing quantities of assistive technology, formal care and informal care were compared. The analyses provide a strong financial case for substituting and/or supplementing formal care with assistive technology, even for individuals with quite disabling conditions. Although needs and hence the cost of provision rise with an increasing level of disability, the savings in care costs accrue quickly. The consideration of a variety of users with different needs and informal care provision, and occupying a very wide range of housing, leads to the conclusion that in comparison with traditional care packages, at worst, incorporating significant amounts of assistive technology into care packages is cost neutral, but that with careful specification of assistive technology major savings are feasible.

Using HIT to deliver integrated care for the frail elderly in the UK: current barriers and future challenges

In this paper we briefly describe the results of a 3 year project examining the use of Health Information Technologies (e.g., electronic patient record systems) to deliver integrated care. In particular, we focus on one group of patient (the frail elderly) and efforts to design an e-health supported healthcare pathway (the frail elderly pathway – FEP). The aim of FEP is to bring together clinicians and staff from health and social care and allow them to share patient information. Our findings show that progress in delivering a fully-supported and working FEP has been slow, not least because of the difficulties experienced by healthcare staff in using current IT systems. In addition, there are many strategic and technical issues which remain unresolved (e.g., systems interoperability).

Continuity of care for people with psychotic illness: its relationship to clinical and social functioning.

Background: The relationship between continuity of care and user characteristics or outcomes has rarely been explored. The ECHO study operationalized and tested a multi-axial definition of continuity of care, producing a seven-factor model used here. Aims: To assess the relationship between user characteristics and established components of continuity of care, and the impact of continuity on clinical and social functioning. Methods: The sample comprised 180 community mental health team users with psychotic disorders who were interviewed at three annual time-points, to assess their experiences of continuity of care and clinical and social functioning. Scores on seven continuity factors were tested for association with user-level variables. Results: Improvement in quality of life was associated with better Experience & Relationship continuity scores (better user-rated continuity and therapeutic relationship) and with lower Meeting Needs continuity factor scores. Higher Meeting Needs scores were associated with a decrease in symptoms. Conclusion: Continuity is a dynamic process, influenced significantly by care structures and organizational change.

Ethics of care in supporting disabled forced migrants: interactions with professionals and ethical dilemmas in health and social care in the South-East of England

This article explores the interactions between disabled forced migrants with care needs and professionals and the restrictive legal, policy and practice context that health and social care professionals have to confront, based on the findings of a qualitative study with 45 participants in the South-East of England. In-depth interviews were conducted with 15 forced migrants who had diverse impairments and chronic illnesses (8 women and 7 men), 13 family caregivers and 17 support workers and strategic professionals working in social care and the third sector in Slough, Reading and London. The legal status of forced migrants significantly affects their entitlements to health and social care provision, resulting in prolonged periods of destitution for many families. National asylum support policies, difficult working relationships with UK Border Agency, higher eligibility thresholds and reduced social care budgets of local authorities were identified as significant barriers in responding to the support needs of disabled forced migrants and family caregivers. In this context, social workers experienced considerable ethical dilemmas. The research raises profound questions about the potential and limitations of health and social care policies, provision, and practice as means of protection and support in fulfilling the human rights of forced migrants with care needs.

Technology acceptance and care self-management: consideration in context of chronic care management

With an aging global population, the number of people living with a chronic illness is expected to increase significantly by 2050. If left unmanaged, chronic care leads to serious health complications, resulting in poor patient quality of life and a costly time bomb for care providers. If effectively managed, patients with chronic care tend to live a richer and more healthy life, resulting in a less costly total care solution. This chapter considers literature from the areas of technology acceptance and care self-management, which aims to alleviate symptoms and/or reason for non-acceptance of care, and thus minimise the risk of long-term complications, which in turn reduces the chance of spiralling health expenditure. By bringing together these areas, the chapter highlights areas where self-management is failing so that changes can be made in care in advance of health deterioration.

Unpaid work and conformity: why care?

We study the supply of unpaid eldercare (in particular caring for parents) in the UK, focusing on both the division of care and caring tasks by gender and the effect of conformity to social norms in relation to caring. We then investigate the effect of the amount of care on the well-being of caregivers and whether agreeing with the care norm enhances their well-being. Our results suggest that the eldercare reform neglects important aspects underlying the distribution of care hours and care tasks between caregivers and may potentially worsen intrahousehold inequality in earnings and well-being, in particular, between men and women.