21.
Petersson, Jesper, 1974
(författare)
Medicine At A Distance In Sweden: Spatiotemporal Matters In Accomplishing Working Telemedicine
2011
Ingår i: Science Studies. - 0786-3012. ; 24:2, s. 43-62
Tidskriftsartikel (refereegranskat) abstract
This paper examines the accomplishment of making technology work, using the discourse around telemedicine in Swedish healthcare during 1994-2003. The paper will compare four projects launched in the mid-1990s and policymakers’ visions of healthcare through telemedicine. I will employ a sociotechnical approach developed within Actor-Network Theory that understands functioning technology not as something intrinsic but as an outcome of an ongoing process of negotiations. In the paper, I will extend the sociotechnical approach of what constitutes working technology to include spatiotemporal matters. I will also approach the closely related issue of space that has become a concern of Actor-Network Theory scholars interested in the accomplishment and continued workings of technology as it travels. In this discussion, an emphasis on fixed relations (network space) has been challenged by investigations into changing relations (fluid space). This paper suggests that in order to travel well, technology must be both fixed and fluid.⁰
22.
Holm, Maja, et al.
(författare)
Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers
2015
Ingår i: Bmc Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 14
Tidskriftsartikel (refereegranskat) abstract
Background: Family caregivers in palliative care have a need for knowledge and support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in palliative home care. Methods: A psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver's need for knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation by healthcare professionals from an intervention manual. An interpretive descriptive design was chosen and data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis. Results: From the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was a positive experience. Although the content was not always adjusted to the family caregivers' individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work. Conclusions: The theoretical framework used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.
23.
Lood, Qarin, 1981, et al.
(författare)
Bridging barriers to health promotion : A feasibility pilot study of the 'Promoting Aging Migrants' Capabilities study'
2015
Ingår i: Journal of Evaluation In Clinical Practice. - : John Wiley & Sons. - 1356-1294 .- 1365-2753. ; 21:4, s. 604-613
Tidskriftsartikel (refereegranskat) abstract
Rationale, aims and objectivesImproving the possibilities for ageing persons to take control over their health is an increasingly important public health issue. Health promotion has previously been visualized to succeed with this goal, but research has primarily focused on ageing persons who are native-born, leaving the generalizability to persons who are foreign-born unexplored. Therefore, as part of the development of a larger health promotion initiative for ageing persons who have experienced migration, this study aimed to assess the feasibility of an adapted protocol. The specific feasibility objectives were to assess recruitment procedure, retention rates, study questionnaire administration and variability of collected data.MethodForty persons who were ≥70 years, and who had migrated from Finland, Bosnia and Herzegovina, Croatia, Montenegro or Serbia to Sweden were randomly allocated to a health promotion programme or a control group. The programme was linguistically adapted with regard to translated information material, bilingual health professionals and evaluators, and a person-centred approach was applied to both programme development and provision. The data analysis was explorative and descriptive.ResultsThe results visualized structural and linguistic barriers to recruitment and study questionnaire administration, and describe strategies for how to bridge them. Retention rates and data variability were satisfying.ConclusionsCalling for iterative and pragmatic programme design, the findings describe how to move towards a more inclusive health care environment. Person-centred and bilingual approaches with attention to the possibilities for building authentic relationships between participants and providers are emphasized, and a structured methodology for developing study questionnaires is suggested.
24.
Robert, Glenn, et al.
(författare)
Exploring the adoption of Schwartz Center Rounds as an organisational innovation to improve staff well-being in England, 2009-2015
2017
Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 7:1
Tidskriftsartikel (refereegranskat) abstract
Objectives: Schwartz Center Rounds ('Rounds') are a multidisciplinary forum in which healthcare staff within an organisation discuss the psychological, emotional and social challenges associated with their work in a confidential and safe environment. Implemented in over 375 North American organisations, since 2009, they have been increasingly adopted in England. This study aimed to establish how many and what types of organisations have adopted Rounds in England, and to explore why they did so.Setting: Public healthcare organisations in England.Participants: Secondary data analysis was used to map and profile all 116 public healthcare organisations that had adopted Rounds in England by July 2015. Semistructured telephone interviews were conducted with 45 Round coordinators within adopting organisations.Results: The rate of adoption increased after a major national report in 2013. Rounds were typically adopted in order to improve staff well-being. Adopting organisations scored better on staff engagement than non-adopters; among adopting organisations, those performing better on patient experience were more likely to adopt earlier. Most adoption decision-making processes were straightforward. A confluence of factors-a generally favourable set of innovation attributes (including low cost), advocacy from opinion leaders in different professional networks, active dissemination by change agents and a felt need to be seen to be addressing staff well-being-initially led to Rounds being seen as 'an idea whose time had come'. More recent adoption patterns have been shaped by the timing of charitable and other agency funding in specific geographical areas and sectors, as well as several forms of 'mimetic pressure'.Conclusions: The innate attributes of Rounds, favourable circumstances and the cumulative impact of a sequence of distinct informal and formal social processes have shaped the pattern of their adoption in England.
25.
Bärkås, Annika, et al.
(författare)
Patients' Experiences of Unwanted Access to Their Online Health Records
2023
Ingår i: Studies in Health Technology and Informatics. - : IOS Press. - 0926-9630 .- 1879-8365. ; 302, s. 356-357, s. 356-357
Tidskriftsartikel (refereegranskat) abstract
Patient-Accessible Electronic Health Records (PAEHR) are particularly disputed in mental healthcare. We aim to explore if there is any association between patients having a mental health condition and someone unwanted seeing their PAEHR. A chi-square test showed a statistically significant association between group belonging and experiences of someone unwanted seeing their PAEHR.
26.
Hägglund, Maria, Lektor, 1975-, et al.
(författare)
A Nordic Perspective on Patient Online Record Access and the European Health Data Space
2024
Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 26:1
Tidskriftsartikel (refereegranskat) abstract
The Nordic countries are, together with the United States, forerunners in online record access (ORA), which has now become widespread. The importance of accessible and structured health data has also been highlighted by policy makers internationally. To ensure the full realization of ORA’s potential in the short and long term, there is a pressing need to study ORA from a cross-disciplinary, clinical, humanistic, and social sciences perspective that looks beyond strictly technical aspects. In this viewpoint paper, we explore the policy changes in the European Health Data Space (EHDS) proposal to advance ORA across the European Union, informed by our research in a Nordic-led project that carries out the first of its kind, large-scale international investigation of patients’ ORA—NORDeHEALTH (Nordic eHealth for Patients: Benchmarking and Developing for the Future). We argue that the EHDS proposal will pave the way for patients to access and control third-party access to their electronic health records. In our analysis of the proposal, we have identified five key principles for ORA: (1) the right to access, (2) proxy access, (3) patient input of their own data, (4) error and omission rectification, and (5) access control. ORA implementation today is fragmented throughout Europe, and the EHDS proposal aims to ensure all European citizens have equal online access to their health data. However, we argue that in order to implement the EHDS, we need more research evidence on the key ORA principles we have identified in our analysis. Results from the NORDeHEALTH project provide some of that evidence, but we have also identified important knowledge gaps that still need further exploration.
27.
28.
Sabadosa, Kathryn A., et al.
(författare)
The interdependent roles of patients, families and professionals in cystic fibrosis : A system for the coproduction of healthcare and its improvement
2014
Ingår i: BMJ Quality and Safety. - : BMJ Publishing Group Ltd. - 2044-5415 .- 2044-5423. ; 23:SUPPL1, s. i90-i94
Tidskriftsartikel (refereegranskat) abstract
A quality healthcare system is coproduced by patients, families and healthcare professionals working interdependently to cocreate and codeliver care. Cystic fibrosis (CF) patients and families rely on healthcare professionals to provide the best possible care and timely, accurate information. They know that the care at home and in clinical settings needs to be seamless, using shared information and decisions. A parent's journey of better care begins with her son's diagnosis and moves to her involvement to improve the systems and processes of care for others. She reflects on this work and identifies five elements that contributed to the coproduction of improved care: (1) mental and emotional readiness to engage; (2) curiosity and the search for insight; (3) reframe challenges into opportunities for improvement; (4) listen and learn from everyone, bringing home what is relevant; and (5) personal participation. Joined with the reflections of an improvement scientist, they note that chronic care relies on informed, activated patients and prepared, proactive healthcare professionals working together and that it is more than 'patient-centric'. They propose a model for the coimprovement of systems of care.
29.
Munthe, Christian, 1962
(författare)
The Price of Precaution and the Ethics of Risk
2011
Bok (övrigt vetenskapligt/konstnärligt) abstract
Since a couple of decades, the notion of a precautionary principle plays a central and increasingly influential role in international as well as national policy and regulation regarding the environment and the use of technology. Urging society to take action in the face of potential risks of human activities in these areas, the recent focus on climate change has further sharpened the importance of this idea. However, the idea of a precautionary principle has also been problematised and criticised by scientists, scholars and policy activists, and been accused of almost every intellectual sin imaginable: unclarity, impracticality, arbitrariness and moral as well as political unsoundness. In that light, the very idea of precaution as an ideal for policy making rather comes out as a dead end. On the basis of these contrasting starting points, Christian Munthe undertakes an innovative, in-depth philosophical analysis of what the idea of a precautionary principle is and should be about. A novel theory of the ethics of imposing risks is developed and used as a foundation for defending the idea of precaution in environmental and technological policy making against its critics, while at the same time avoiding a number of identified flaws. The theory is shown to have far-reaching consequences for areas such as bio-, information- and nuclear technology, and global environmental policy in areas such as climate change. The author argues that, while the price we pay for precaution must not be too high, we have to be prepared to pay it in order to act ethically defensible. A number of practical suggestions for precautionary regulation and policy making are made on the basis of this, and some challenges to basic ethical theory as well as consumerist societies, the global political order and liberal democracy are identified
30.
Brännström, Margareta, et al.
(författare)
Effectiveness of the Liverpool care pathway for the dying in residential care homes: An exploratory, controlled before-and-after study
2016
Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 30:1, s. 54-63
Tidskriftsartikel (refereegranskat) abstract
Background: Clinical pathways aim to ensure that individuals receive appropriate evidence-based care and interventions, with the Liverpool Care Pathway for the Dying Patient focusing on end of life. However, controlled studies of the Liverpool Care Pathway for the Dying Patient, particularly outside of cancer settings, are lacking. Aim: To compare the effects of the Liverpool Care Pathway for the Dying Patient and usual care on patients' symptom distress and well-being during the last days of life, in residential care homes. Design: Exploratory, controlled before-and-after study. During a 15-month baseline, usual care was carried out in two areas. During the following 15-months, usual care continued in the control area, while residential care home staff implemented Liverpool Care Pathway for the Dying Patient use in the intervention area. The intervention was evaluated by family members completing retrospective symptom assessments after the patient's death, using the Edmonton Symptom Assessment System and Views of Informal Carers - Evaluation of Services. Settings/participants: Patients who died at all 19 residential care homes in one municipality in Sweden. Results: Shortness of breath (estimate=-2.46; 95% confidence interval=-4.43 to -0.49) and nausea (estimate=-1.83; 95% confidence interval=-3.12 to -0.54) were significantly reduced in Edmonton Symptom Assessment System in patients in the intervention compared to the control area. A statistically significant improvement in shortness of breath was also found on the Views of Informal Carers - Evaluation of Services item (estimate=-0.47; 95% confidence interval=-0.85 to -0.08). Conclusion: When implemented with adequate staff training and support, the Liverpool Care Pathway for the Dying Patient may be a useful tool for providing end-of-life care of elderly people at the end of life in non-cancer settings.
