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In Sweden, efforts to govern end-of-life care through policies have been ongoing since the 1970s. The aim of this study is to analyse how policy narratives on palliative care in Sweden have been formulated and have changed over time since the 1970s up to 2018. We have analysed 65 different policy-documents. After having analysed the empirical material, three policy episodes were identified. In Episode 1, focus was on the need for norms, standards and a psychological end-of-life care with the main goal of solving the alleged deficiencies within end-of-life care in hospital settings. Episode 2 was characterised by an emphasis on prioritising end-of-life care and dying at home, and on the fact that the hospice care philosophy should serve as inspiration. In Episode 3, the need for a palliative care philosophy that transcended all palliative care and the importance of systematic follow-ups and indicators was endorsed. Furthermore, human value and freedom of choice were emphasised. In conclusion, the increase of policy-documents produced by the welfare-state illustrate that death and dying have become matters of public concern and responsibility. Furthermore, significant shifts in policy narratives display how notions of good palliative care change, which in turn may affect both the practice and the content of care at the end of life. Funding: FORTE - Swedish Research Council for Health, Working Life and Welfare [dnr: 2017-01187]; Region OEstergoetland, Sweden; Linkoeping University

This article reports the results of a socio-legal investigation into how continued work among people living with progressive cognitive impairments such as mild cognitive impairment (MCI) or early onset dementia (EOD) can be supported. This study that makes use of empirical data collected in Finland, Sweden and Canada seeks to give voice to people living with MCI or EOD and set their experiential knowledge in dialogue with equality rights related tools provided by the UN Convention on the Rights of the Persons with Disabilities (UNCRPD). The results illustrate that there are effective tools available that remove barriers to participation and support continued work of employees living with cognitive impairments at least for some time while impairments are mild. Ideally, flexibility and solidarity in the workplace automatically eliminates the effects of individual impairment. However, cognitive impairments are often such that along with general accessibility measures individual accommodations are needed. Supporting continued work expands the freedom to continue meaningful work in the preferred manner and offers people the means to gain a livelihood and participate in society as a member of the work community on equal basis with others.

Dementia is a progressive, irreversible neurological disorder that causes changes in cognitive function and behaviour. While at least 5% of people who develop dementia every year are under the age of 65, dementia in the workplace is currently not well recognised or supported. The changes associated with dementia present multiple challenges for individuals who wish to continue with their employment. Many lose their positions before receiving a diagnosis, whilst others take sick or disability leave or early retirement. The process of understanding what is happening and coping with this new situation is highly individualistic and involves several transitions. The MCI@work project is an international initiative taking place in Canada, Finland, and Sweden where we examine these transitions through the personal narratives of individuals who have either currently or recently gone through the experience of developing dementia whilst in the workforce. From these data, we have developed a framework for understanding the transitions experienced by people who develop dementia whilst in the workforce. The aim is to assist individuals and their employers to better understand the needs of people living and working dementia as well as engage in appropriate actions that support choices and dignified transitions either within the context of employment or out of the workforce.

Introduction Health care systems around the world are struggling with limited resources, in relation to the prevailing health care need. An accessible primary care is an important part of the solution for how to provide affordable care for the population and reduce pressure on the overall health care system such as unnecessary hospital stays and associated costs. As primary care constitutes an important first line of healthcare, the task of prioritising and deciding what to do and for whom lies in practice, primarily with the primary care professionals. Thus, the decisions and behaviour of primary care professionals have a central role in achieving good and equal health in the population. The aim of this study is to explore how primary health care professionals handle situations with limited resources and enhance our knowledge of priorities in practice. Methods Semi-structured interviews with 14 health care professionals (7 nurses, 7 physicians) working in Swedish primary care were interviewed. Data were analysed inductively with content analysis. Findings Three main categories were found: Influx of patients; Structural conditions; and Actions. Each category illustrates an important aspect for what primary care professionals do to achieve good and equal care. The influx of patients concerned what the professionals handled in terms of patients’ healthcare needs and patient behaviour. Structural conditions consisted of policies and goals set for primary care, competence availability, technical systems, and organisational culture. To handle situations due to limited resources, professionals performed different actions: matching health care needs with professionals’ competency, defining care needs to suit booking systems appointments, giving care at the inappropriate health care level, rearranging workhours, and passing on the decision making. Conclusion Priorities in primary care are not, “one fits all” solution. Our study shows that priorities in primary care comprise of ongoing daily processes that are adapted to the situation, context of patient influx, and structural conditions. Healthcare professional’s actions for how influx of patients’ is handled in relation to limited resources, are created, and shaped within this context which also sets the boundaries for their actions.

Reimbursement programmes are used to manage care through financial incentives. However, their effects are mixed and the programmes can motivate behaviour that goes against professional values. Value-based reimbursement programmes may better align professional values with financial incentives. The aim of this study is to analyse if and how healthcare providers adapt their practices to a value-based reimbursement programme that combines bundled payment with performance-based payment. Forty-one semi-structured interviews were conducted with representatives from healthcare providers within spine surgery in Sweden. Data were analysed using thematic analysis with an abductive approach and a conceptual framework based on neo-institutional theory. Healthcare providers were positive to the idea of a value-based reimbursement programme. However, during its introduction it became evident that some aspects were easier to adapt to than others. The bundled payment provided a more comprehensive picture of the patients needs but to an increased administrative burden. Due to the financial impact of the bundled payment, healthcare providers tried to decrease the amount of post-discharge care. The performance-based payment was appreciated. However, the lack of financial impact and transparency in how the payment was calculated caused providers to neglect it. Healthcare providers adapted their practices to, but also resisted aspects of the value-based reimbursement programme. Resistance was mainly caused by lack of understanding of how to interpret and act on new information. Providers had to face unfamiliar situations, which they did not know how to handle. Better IT-facilitation and clearer definition of related care is needed to strengthen the value-based reimbursement programme among healthcare providers. A value-based reimbursement programme seems to better align professional values with financial incentives. Funding Agencies|Region Stockholm

Dementia is a great public health concern worldwide. Despite this, little is known from a health-promoting perspective about dementia in general as a public health issue, in dialog with people living with dementia, applicable at individual, group, and societal levels with regard to policies and practice. This study therefore aims to explore the experiences related to living with dementia in the local community by advancing a health-promoting perspective. Semi-structured individual and group interviews were conducted with participants (n = 22) with lived, professional, and personal experiences of dementia living in a medium-sized municipality in Sweden. Transcripts were analyzed by thematic analysis. Four themes emerged: health promotion through knowledge and public awareness, health promotion through opportunities to be active, health promotion through meaningful meeting places, and health promotion through improvements in the welfare system. We found that more knowledge and public awareness about dementia are needed to advance a health-promoting perspective and increase the prominence of dementia as a public health issue. Further research and policy need to focus more on how professionals in dementia care practice could be involved in promoting health and well-being for people with dementia. Funding agency: Norrköping Municipality Research and Development Fund(Norrköpings fond för forskning och utveckling) (NK KS 2016/0407)

Individuals who have a functional or health impairment, are often in great need of conventional healthcare, social care and support, as well as help from family and friends. The use of dogs may be an important assistive support for this population. Assistance dogs are trained to assist with their owners specific needs. The aim of this study is to explore service and hearing dog ownership from the owner s perspective, by examining the owners expectations before training a dog, and experiences after having a certified dog. This study was designed as a longitudinal intervention study with pre-post design. The participants included in the study trained their own dogs to become service or hearing dogs. A number of open-ended questions were answered by the participants before the training of the dog started, three months after the dog was certified, and 1-3 years after the first follow-up. Data were analysed using thematic content analysis. The participants expectations of what the dog would contribute after being certified was high. Their perceived experiences in many ways reflected their expectations. For example, they perceived that the dog contributed to improved health status, a more active lifestyle, improved ability to feel secure, and that they had become more independent. They also felt that the dog had strengthened their social relationships. Negative experiences were also identified. Not being allowed to bring their dog into public places and negative attitudes from other people were examples of this. This study shows that individuals being supported by an assistance dog experience the dog as an invaluable help in their everyday life. By improving the owners lives in many ways, a certified service or hearing dog is a novel and important assistive support for people with a functional or health impairment. Funding Agencies|Region Ostergotland and Jimmy Dahlstens foundation

Earlier diagnosis and longer working careers is resulting in more individuals being identified as having Mild Cognitive Impairment or Early Onset Dementia (MCI/EOD) when they are still in the workforce. While there is growing interest in the dementia research community and beyond to develop technologies to support people with dementia, the use of technology for and by people with MCI/EOD in the workplace has had very little attention. This paper presents a two-part study involving interviews and participatory sessions to begin to understand the workplace experiences and the role of technology among people living with MCI/EOD. We present our findings from working with seven people with MCI/EOD and two care partners to explore technology design. Our results indicate several similarities as well as a few differences between MCI/EOD and later-onset dementia with respect to challenges using technology and design considerations for supporting engagement and use of technology. Lessons learned through the process of working with people with MCI/EOD through participatory methods is presented along with recommendations to foster an inclusive, respectful, and empowering experience for participants with MCI/EOD. Funding Agencies|JTC 2017 as part of the Joint Programming Initiative (JPI) "More Years, Better Lives" (JPI MYBL) initiative; J-Age II - Horizon 2020, the EU Framework Program for Research and Innovation [643850]

IntroductionCollaboration and coordination of health and care services are key to catering for the diverse needs of a growing population of older people with dementia. When multidisciplinary health and care providers work together, they have the possibility to use resources in a fair, accurate and effective way and thereby do the right thing, at the right time, for the right individual. The aim of this scoping review is to map how different care-providing agencies collaborate and coordinate health and care services for older people with dementia.Methods and analysisA scoping review will be carried out following the proposed methodology by Joanna Briggs Institute and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses-Scoping Review Extension guidelines. Systematic searches will be carried out in scientific databases. Studies published within the last 10 years will be included based on certain eligibility criteria. All included studies will be critically appraised using the Research Pyramid. Data from included studies will be charted and subjected to content analysis.Ethics and disseminationEthics approval is not required for scoping reviews. The dissemination of findings will be conducted through conference presentations and publication in international scientific journals.

Background Striving to cope with day-to-day challenges is a basic human behaviour. Self-initiated management approaches provide a resource that has yet to be discovered and systematically used in occupational therapy practice. This resource might be especially important for people with dementia who are less likely to adopt management approaches initiated by others. Aims/objectives Based on the findings of former studies on management and problem-solving actions among people with cognitive impairment, this article aims to identify and categorize the study participants self-initiated management approaches and how these may be manifested in strategies in everyday occupations. Material and methods The study utilized a form of meta-synthesis; an aggregated analysis, where findings from 11 studies published 2004-2020 were compared and categorized, incorporating the views of participants with dementia/mild cognitive impairment, or acquired brain injury. Results Thirty strategies were identified and grouped into seven categories of management approaches, used in a variety of everyday occupations and situations. A majority of the strategies were found in both populations, suggesting that management approaches are more similar than different across populations with cognitive impairment. Conclusions and significance Attending to the rich variation of self-initiated management approaches/strategies among persons with cognitive impairment offers possibilities for developing occupational therapy interventions. Funding Agencies|FORTE; Swedish Council for Health, Working Life, and Welfare [2013-2104, 2017-02303]; CIHR; Canadian Institute of Health ResearchCanadian Institutes of Health Research (CIHR) [MYB:155863]; Academy of FinlandAcademy of FinlandEuropean Commission [318848, 314749]

PurposeUsing financial incentives has been criticised for putting too much focus on things that can be measured. Value-based reimbursement may better align professional values with financial incentives. However, professional values may differ between actor groups. In this article, the authors identify institutional logics within healthcare-providing organisations. Further, the authors analyse how the centrality and compatibility of the identified logics affect the institutionalisation of external demands.Design/methodology/approach41 semi-structured interviews were conducted with representatives from healthcare providers within spine surgery in Sweden, where a value-based reimbursement programme was introduced. Data were analysed using thematic content analysis with an abductive approach, and a conceptual framework based on neo-institutional theory.FindingsAfter the introduction of the value-based reimbursement programme, the centrality and compatibility of the institutional logics within healthcare-providing organisations changed. The logic of spine surgeons was dominating whereas physiotherapists struggled to motivate a higher cost for high quality physiotherapy. The institutional logic of nurses was aligned with spine surgeons, however as a peripheral logic facilitating spine surgery. To attain holistic and interdisciplinary healthcare, dominating institutional logics within healthcare-providing organisations need to allow peripheral institutional logics to attain a higher centrality for higher compatibility. Thus, allowing other occupations to take responsibility for quality and attain the feeling of professional pride.Originality/valueInterviewing spine surgeons, physiotherapists, nurses, managers and administrators allows us to deepen the understanding of micro-level behaviour as a reaction (or lack thereof) to macro-level decisions.

The interface between the patient and the health service has changed, which constitutes a potential problem for various policy-makers. Using a critical policy perspective and drawing on the theory of problem framing, this paper explores how actor groups with different responsibilities perceive the patient as a constructed policy problem. This is a qualitative study where data consists of single episode interviews with healthcare politicians, senior administrators, service strategists, and unit mangers from one regional health authority in Sweden. A thematic content analysis of the interviews was carried out in accordance with “the framework approach”. The study illustrates how the actors interpret their reality using diverse problem frames. This becomes more visible when the framing is disentangled with regard to what perspective they employ in relation to different accounts: society or the individual, or the (healthcare) system or the (healthcare) professional. The actor groups are part of the same institutional context, which explains certain tendencies of similarities in terms of the accounts being used, but still they approach the constructed problem differently which is visible as shifts—scaling up and down—between different accounts. By analyzing and structuring the various problem frames (including its policy styles) we can enhance our knowledge about how those responsible for the governance of healthcare approach the patient as a policy problem, as something that concerns only the patient and/or the provider, or as something that needs to be addressed in broader strategic terms.

Economic evaluations are used to inform decision makers about the efficient allocation of scarce healthcare resources and are generated with the direct intent to support decisions in healthcare. Producing guidelines is a complex process and the inclusion of health-economic aspects in the formulation of the Swedish national guidelines as a basis for the written recommendations (priority gradings), distinguishes them from their European counterparts. Despite the increased use of cost-effectiveness data in decision-making, little is known about the actual use of such data. This thesis covers issues concerning how economic evaluations matter in health policy decision-making. The thesis includes four papers based on the Swedish national guidelines for heart diseases, one of the most prominent examples in Sweden of following the notion of evidence-based policy (EBP), in order to inform explicit priority setting.Both Papers I and II followed a qualitative case study design, based on the same data set. Paper I explored how a specific working group, the Priority Setting Group (PSG), handled the various forms of evidence and values when producing the national guidelines. Two themes were identified in reaching collective agreement in priority gradings; group facilitation activities and avoiding deadlock in the discussion. The work process involved disagreement and negotiation as part of that task. Paper I contributes to the theoretical and practical debate on EBP. Paper II focused on the use of cost-effectiveness data as decision support in the PSG work process. The paper addressed availability of cost-effectiveness data, evidence understanding, interpretation difficulties, and the reliance on evidence. Three themes were identified. The paper contributes to knowledge on how cost-effectiveness evidence was used in actual decision-making. The use of cost-effectiveness evidence was one of many tools employed to avoid deadlock in discussion and to reach a priority grading, when the overall evidence base was weak, in times of uncertainty and on the introduction of new expensive medical technologies.Quantitative research methods were used for both Papers III and IV. Paper III explored how the PSG was presented with cost-effectiveness evidence as decision support and as a basis for their priority gradings. Cost-effectiveness ratios (ICERs) were provided, based on a systematic literature review, as well as how the results may be conveyed and communicated, for the treatment of heart diseases using a cost-effectiveness ranking or league and providing valid information within a limited space, aiding decision makers on the allocation of healthcare resources. The thesis also includes decision support in the form of cost-effectiveness analysis on catheter ablation treatment. Paper IV provides an example of presenting evidence in the form of a decision-analytic model. The modelling approach provides an analytic framework for decision-making, specifically under conditions of uncertainty as in the introduction of new medical technology. Catheter ablation was associated with reduced cost and an incremental gain in quality adjusted life years (QALYs), and was considered a cost-effective treatment strategy compared to the medical treatment strategy in a lifetime perspective.

Over the past 10 years, attention to notions of citizenship has played an increasingly important role in dementia discourse. Arguably, the focus on citizenship represents a ‘‘fourth moment’’ (Bartlett & O’Connor, 2010) or turn, in the development of understanding around dementia, where dementia moved from first being recognized predominantly as a natural sign of aging (senility), to a second period of constructing it as a primarily biomedical condition, followed by a third shift toward a more relational understanding that addressed the importance of seeing the person beyond the medical condition, to now considering the importance of embedding responses and relationships within broader socio-political practices and discourses. The language of citizenship challenges the tendency to problematize the experience of dementia as an individual experience by drawing attention to how people’s experiences are shaped by socio-cultural practices and assumptions: the personal is political. At core, it offers hope for the continued development of inclusionary practices that foster the possibilities for people living with dementia to live well and fully with their diagnosis. Different frameworks have been offered for conceptualizing citizenship as practice. Bartlett and O’Connor (2007, 2010), for example, conceptualize an understanding of social citizenship as a status, practice and relationship grounded by six fundamental rights. These include: opportunities for growth; to have one’s self recognized in a holistic way beyond simply that of a person with dementia; to retain purpose in one’s life irrespective of diagnosis; to participate as an active agent in one’s life; to create a sense of solidarity and belonging with others; and importantly, the right to live life free of discrimination. Another way for conceptualizing is offered by Gilmour and Brannelly (2010) who draw on relational care ethics to argue for a more relational citizenship grounded in attentiveness, responsibility, competence and responsiveness. (See also Brannelly, 2011a, 2011b). Baldwin (2008) draws attention to yet another aspect of citizenship as practice, that of

The concept of legitimacy is often used and emphasized in the context of setting limits in health care, but rarely described is what is actually meant by its use. Moreover, it is seldom explicitly stated how health-care workers can contribute to the matter, nor what weight should be apportioned to their viewpoints. Instead the discussion has focused on whether they should take on the role of the patients’ advocate or that of gatekeeper to the society’s resources. In this article, we shed light on the role of health-care workers in limit setting and how their conferred legitimacy may support subordinators’ (i.e. citizens’) conferred legitimacy. We argue that health-care workers have an important role to play as both moral and political agents in limit setting, and delineate normative conditions that justify and facilitate health-care workers in conferring legitimacy on this kind of decision. Their role and potential impact on political limit setting does not—theoretically—affect the idea of democratic legitimacy negatively. Rather, as we suggest, by designing for limit-setting policymaking accordingly, health-care workers, as well as citizens, are more justified in conferring democratic legitimacy to health-care limit-setting decisions than if these concerns were not addressed. Funding agencies|National Centre for Setting Priorities in Health Care at Linkoping University| Department of Global Public Health and Primary Care at the University of Bergen

This paper focuses on problem frame differences among actors (members of an advisory body, senior administrators and clinical unit managers) who are concerned with the introduction of new health technology at the regional level in Sweden. It explores issues related to problem framing, puzzling, powering, participation and the various rationales articulated in the ambiguous search for an evidence-based strategy to handle the influx of new technologies. The Health Technology Advisory Committee (HTAC) was established in one Swedish county council in 2004 with the intention of controlling both the introduction of health technology and supporting policy decision and clinical practice by promoting the use of best evidence. The HTAC followed a scientific rationality dominated by one problem frame, although the problematic situation, as it was framed by all the actor groups, was highly complex and not solely a matter of evidence. This paper illustrates how problem frame differences shape the puzzling of a policy problem and how the different distinguishable policy styles are dependent on who is participating and who is not participating in the puzzling.

Since living with dementia implies increasing difficulties in taking charge of rights due to cognitive as well as communicative impairments, many people with dementia are vulnerable and in need of support in order to realize full citizenship. In Sweden, all adults right to self-determination is strongly emphasized in law, regulations, and policies. Further, and in contrast to the situation in many other countries, people living with dementia cannot be declared as incompetent of making decisions concerning social care and their right to self-determination cannot legally be taken away. The article shows that in the Swedish welfare system, the focus is more on protecting the self-determination of citizens than on supporting people in making decisions and exercising citizenship. Subsequently, this causes legally constructed zones of inclusion and exclusion. This article examines and problematizes how different institutional contexts, legal constructions, norms, and practices in Sweden affect the management of issues concerning guardianship, supported decision-making and self-determination, and outline the implications for people living with dementia. Funding Agencies|FORTE: Swedish Research Council for Health, Working Life and Welfare as part of the project Democracy, Autonomy and Justice Citizenship Practice for People with Dementia [2014-0921]; bank of Sweden Tercentenary Foundation as part of the programme Dementia: Agency, Personhood and Everyday Life Grant [M10-0187:1]

This paper contributes to the knowledge on the governing of healthcare in a democratic context in times of austerity. Resource allocation in healthcare is a highly political issue but the political nature of healthcare is not always made clear and the role of politicians is often obscure. The absence of politicians in rationing/disinvestment arrangements is usually explained with blame-shifting arguments; they prefer to delegate "the burden of responsibility" to administrative agencies or professionals. Drawing on a case where Swedish regional politicians involved themselves in setting priorities at a more detailed level than previously, the findings suggest that the subject of "blame avoidance" is more complicated than usually assumed. A qualitative case study was designed, involving semi-structured interviews with 14 regionally elected politicians in one Swedish health authority, conducted in June 2011. The interviews were analysed through a thematic analysis in accordance with the "framework approach" by Ritchie and Lewis. Findings show that an overarching strategy among the politicians was to appear united and to suppress conflict, which served to underpin the vital strategy of bringing the medical profession into the process. A key finding is the importance that politicians, when appearing "backstage", attach to the prevention of blame from the medical profession. This case illustrates that one has to take into account that priority settings requires various types of skills and knowledges - not only technical but also political and social. Another important lesson points toward the need to broaden the political leadership repertoire, as leadership in the case of priority setting is not about politicians being all in or all out. The results suggest that in a priority-setting process it is of importance to have politics on-board at an early stage to secure loyalty to the process, although not necessarily being involved in all details. Funding agencies: Swedish National Centre for Priority Setting in Health Care

This article explores how policy narratives in national policy documents in Sweden inform associated politics on people with dementia. This is disentangled in terms of how people with dementia have been defined, what the problems and their imminent solutions have been, and if and how these have differed overtime. Based on a textual analysis of policy documents at national level in Sweden, covering nearly 40 years the study shows how divergent policy narratives shape the construction of citizens with dementia as policy target groups. This study shows the temporal character of people with dementia as a political problem, the implications of policy narratives on people with dementia as a citizen group, and policy narratives as something being crafted rather than shaped by fixed pre-existing "facts". Dementia, and further citizens living with dementia, does not have a once and for all stabilised meaning. Instead, the meanings behind the categories continue to evolve and to be crafted, which affects the construction of citizens living with dementia, the space in which to exercise their citizenship and further belonging to the society. Funding Agencies|bank of Sweden Tercentenary Foundation as part of the programme Dementia: Agency, Personhood and Everyday Life [M10-0187:1]