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Background: Cancer diagnosis can lead to massive physical, emotional, and social burdens on children and their families. Although children have the right to be informed and participate in their care, research shows that children's views are often not considered in care situations. Thus, it is essential to strengthen children's communication and self-efficacy (SE) to convey desires and needs. The present study explores whether a play intervention is associated with improved health-related quality of life (HrQoL) and SE for communication in care situations. We hypothesize that HrQoL and SE for communication will increase from the beginning to after the pretend play intervention. Methods: Children with cancer from Germany and Sweden were enrolled. The pretend play intervention consisted of six to 10 play sessions. A heterogenic selection of questionnaires was used to measure children's HrQoL and SE before the first pretend play session and after the last play intervention. Results: Nineteen families were included in the presented analyses, including 14 self-reports of children and 19 proxy reports of parents. We found improvements in child-reported communication, and emotional and psychosocial well-being using generic and cancer-specific HrQoL measurements. Further, children's SE in care situations improved during the play intervention. Parents also reported minor improvements in the physical dimensions in both generic and chronic‐generic HrQoL, along with improvements in independence. Discussion: Overall, the cancer-specific pretend play intervention offers young children with cancer a secure environment and can contribute to their well-being, and communication skills, during or after cancer treatment.

The article analyzes the commissioning and production of expert reports about Swedish health care management and governance. We show that these reports are rarely solitary stand-alone products, but tend to form clusters in an evolving discourse centered around specific policy solutions. We also show that the most important producers of such reports tend to come from a small circle of informally recruited academics and policy experts representing a narrow segment of academic disciplines. We point to some of the risks involved in this structure of knowledge production and argue that reports: (a) may form their own environment rather than address real problems; (b) may reproduce certain taken-for-granted assumptions and critical lacunae; (c) may have their impact decided by their network connections rather than by their intellectual content; and (d) represent a structure that provides opportunities for special interests to enter the process.

BackgroundAlthough the rate of survival in childhood cancer today is close to 85%, a cancer diagnosis can still turn the world upside down for both children and parents. Often, children in oncology care are frustrated about their inability to control events and activities around them. Therapeutic pretend play has been suggested as a means to encourage children to express and handle emotions in a safe environment.PurposeThis study was developed to describe and explore parents' experiences of a pretend play intervention that consisted of six to eight play sessions with a play facilitator administered to their children undergoing cancer treatment.MethodsA descriptive qualitative method was used, including individual interviews with 15 parents.ResultsThree main categories were developed, including (a) experiences of joining the project, (b) perceptions of the play intervention, and (c) reflections on effects and implications, with subcategories evolved for each category. The parents experienced that the play sessions helped improve their children's communication skills and made them more capable of participating in their care. They appreciated that the intervention focused on the child's well-being and saw it as a positive break in their child's cancer treatment. It also helped them better reflect on their own situation.Conclusions/Implications for PracticeAccording to the parents' experiences, pretend play can be a helpful tool for improving children's participation in their cancer care that strengthens their autonomy, emotional repertoire, and communication skills. However, the results also highlighted that some of the children did not fully understand the information provided about this study, which weakened the validity of their consent to participate. Thus, more work is needed on developing age-appropriate information to obtain participation consent from children. In addition, more knowledge is needed regarding how to appropriately include children with cancer in research in an ethically acceptable way.

Background Nursing care should be respectful of and unrestricted by patients’ age, ethnicity, gender, dis/abilities or social status, and such values should be taught to nursing students. Nursing teachers are crucial as role models, and their values are essential. In telephone nursing, only age, sex and ethnicity are known to the registered nurses, which can be challenging. The aim of this study was to explore awareness of discrimination and inequity in telephone nursing among nursing teachers. Methods A study specific survey was filled in by 135 nursing teachers from three universities in Sweden. The survey included short descriptions of 12 fictive persons who differed in age, ethnicity and sex and with questions about their estimated life situation. The teachers’ estimations of life situation were ranked from lowest probability to highest probability. A ‘good life index’ was constructed and calculated for each fictive person. It included quality of life, power over one’s own life and experience of discrimination. Results The results indicate that the nursing teachers were aware of how power and age, ethnicity and sex are related; that is, they were aware of discrimination and inequity in healthcare. The persons assessed to be most likely to lead a good life were males of Swedish origin, followed by females of Swedish origin. Persons with non-European origin were estimated to have the highest probability of experiencing discrimination. Conclusions The nursing teachers were aware of discrimination and inequity in healthcare. They were able to estimate a fictive person’s life situation based on the limited knowledge of age, ethnicity and sex. This is important, as their values are pivotal in theoretical and practical nursing education.

Although the rate of survival in childhood cancer today is close to 85%, a cancer diagnosis can still turn the world upside down for both children and parents. Often, children in oncology care are frustrated about their inability to control events and activities around them. Therapeutic pretend play has been suggested as a means to encourage children to express and handle emotions in a safe environment.This study was developed to describe and explore parents' experiences of a pretend play intervention that consisted of six to eight play sessions with a play facilitator administered to their children undergoing cancer treatment.A descriptive qualitative method was used, including individual interviews with 15 parents.Three main categories were developed, including (a) experiences of joining the project, (b) perceptions of the play intervention, and (c) reflections on effects and implications, with subcategories evolved for each category. The parents experienced that the play sessions helped improve their children's communication skills and made them more capable of participating in their care. They appreciated that the intervention focused on the child's well-being and saw it as a positive break in their child's cancer treatment. It also helped them better reflect on their own situation.According to the parents' experiences, pretend play can be a helpful tool for improving children's participation in their cancer care that strengthens their autonomy, emotional repertoire, and communication skills. However, the results also highlighted that some of the children did not fully understand the information provided about this study, which weakened the validity of their consent to participate. Thus, more work is needed on developing age-appropriate information to obtain participation consent from children. In addition, more knowledge is needed regarding how to appropriately include children with cancer in research in an ethically acceptable way.

Little is known about the information parents of children with cancer find when searching for clinical trials information on YouTube. Thus, this study aimed to analyse the content, quality and reliability of YouTube videos focused on clinical trials for paediatric cancer. A descriptive cross-sectional design was used, and YouTube was searched using the phrases ‘clinical trials for children with cancer’ and ‘paediatric cancer clinical trials’. Videos that met inclusion criteria were assessed using the instruments Global Quality Scale and DISCERN. About half of the examined videos were in the GQS excellent-quality group and exhibited a total of 84,804 views. The mean time for videos was 5.7 minutes, they originated from the US or UK, were uploaded after 2016, and had a cancer centre/foundation or children hospital as video source. Half of them were focusing on early experimental trials and had a positive tone. Twenty percent were classified as useful without serious shortcomings, almost 50% as misleading with serious shortcomings, and 30% as inappropriate sources of information. In conclusion, most YouTube videos on paediatric cancer trials are not very informative and fall short of what could ethically be required regarding their facilitation of informed decision-making.

In production and consumption of food, several ethical values are at stake for different affected parties and value conflicts in relation to food choices are frequent. The aim of this article was to present an ethical framework for well-grounded decisions on production and consumption of food, guided by the following questions: Which are the affected parties in relation to production and consumption of food? What ethical values are at stake for these parties? How can conflicts between the identified values be handled from different ethical perspectives? Four affected parties, relevant for both production and consumption of food, were identified, namelyanimals, nature, producersandconsumers.Working form a bottom-up perspective, several values for these parties were identified and discussed. For animals:welfare, not being exposed to painandnatural behavior; for nature:low negative impact on the environmentandsustainable climate; for producers:fair salariesandsafe working conditions; and for consumers:access to food, autonomy, healthandfood as part of a good life. As several of these values can come into conflict when choices of what to eat should be made, the article argues for the need of weighing values from four different perspectives in food ethics dilemmas, namelyduties, consequences, virtuesandcare.The suggested ethical framework can provide moral guidance to both producers of food and to consumers in a supermarket. Thereby, it can contribute to more well-grounded decisions concerning what to eat and make people feel a little bit more secure when reflecting over the question: What shall we eat?

Background: Over the course of several decades, the organization of health care in Sweden, as in many other countries, has changed, from a dominant logic of professional dominance and political control towards managerial control through market mechanisms. A crucial motive was to increase cost efficiency. The Swedish government, as well as regional-level agencies, regularly commissions expert reports that are supposed to form the basis for decisions regarding governance, organization and control models of the health care system.Aim: The aim of this study was a) to perform a descriptive mapping of commissioned reports on Swedish health care governance and b) to perform an in-depth content analysis of a strategic sample of such reports.Method: Initially, 106 reports from both national and regional levels were gathered and analysed. A matrix was constructed, consisting of questions on who had commissioned the report, who had produced it, what problems the report set out to solve and what solutions were suggested. Further, questions were posed on whether the report was research-based and whether ethical assumptions and arguments were presented. Thereafter, a strategic sample of 36 reports was selected for an in-depth analysis, using thematic content analysis. Results: The mapping showed that the aim of the reports varied from giving an overview and to investigating effects and consequences of new steering forms, to more concrete goals, such as suggesting improvement measures. Most of the authors involved were administrators; only in rare cases were they from academic disciplines. Experts with academic degrees were in most cases from economics or business studies. The content analysis resulted in an overarching theme, Dominant discourses, and three categories: Equity as geographical sameness, Knowledge-based management and Management based on trust. Discussion: The analysed reports varied in form and content. They were mostly produced by administrators, but in some cases with input from academic researchers. The contents mirrored dominant discourses of the time but could also express conflicting values and goals. The analysis revealed examples of standardization in care, characterized by requirements to follow national guidelines, but also examples of requests for increased respect for professionals’ competence and experience.Conclusion: The great number of reports implies that the system risks requesting more information than it can handle. Further, it might result in reports where the same message is repeated in different documents, or create conflicts of interest and value tensions between different suggestions. In sum, our analysis showed a discursive shift of two trends or dominant discourses in the analysed reports, from increased standardization to arguments for trust in the system.

Background In order to support decisions regarding governance, organization and control models of the healthcare system, the Swedish government, as well as regional-level agencies, regularly commissions expert reports that are supposed to form the basis for decisions on new steering forms in healthcare. Aim The aim of this study was a) to perform a descriptive mapping of commissioned reports on Swedish healthcare governance and b) to pursue an in-depth content analysis of a strategic sample of such reports. Method Initially, 106 reports from both national and regional levels were gathered and analysed. A matrix was constructed, consisting of questions on who had commissioned the report, who had produced it, what problems the report set out to solve and what solutions were suggested. Further, questions were posed on whether the report was research-based and whether ethical assumptions and arguments were presented. Thereafter, a strategic sample of 36 reports was selected for an in-depth analysis, using inductive content analysis. Results The descriptive mapping showed that the aim of the analysed reports differed in form and content, and that they varied from giving an overview and investigating effects and consequences of new control models to more concrete goals, such as suggesting improvement measures. Academic experts involved in creating the reports often represented economics or business studies. The content analysis revealed examples of standardization in care, characterized by requirements to follow national guidelines, but also examples of requests for increased respect for professionals’ competence and experience. Further, the analysis showed how the definition of equity in care had changed, from a focus on equity in access to care in the reports produced in the 1990s to an emphasis of arguments for geographical sameness and equity in quality of care in the later reports. Discussion Two dominant trends were identified in the material, namely increased standardization and arguments for trust in the system. The great number of reports implies that the system risks requesting more information than it can handle and result in documents where the same message is recurrently repeated or create conflicts of interest and value tensions between different suggestions. Conclusion Commissioned reports can have substantial consequences for new reforms of management practices in healthcare. It is therefore important to investigate them critically. The results of our investigation may contribute to a more comprehensive and adequate model for acquiring and using expert reports regarding healthcare governance, both in Sweden and in similar healthcare systems.

Background Preconception Expanded Carrier Screening (ECS) is a genetic test offered to a general population or to couples who have no known risk of recessive and X-linked genetic diseases and are interested in becoming parents. A test may screen for carrier status of several autosomal recessive diseases at one go. Such a program has been piloted in the Netherlands and may become a reality in more European countries in the future. The ethical rationale for such tests is that they enhance reproductive autonomy. The dominant conception of autonomy is individual-based. However, at the clinic, people deciding on preconception ECS will be counselled together and are expected to make a joint decision, as a couple. The aim of the present study was to develop an understanding of autonomous decisions made by couples in the context of reproductive technologies in general and of preconception ECS in particular. Further, to shed light on what occurs in reproductive clinics and suggest concrete implications for healthcare professionals. Main text Based on the shift in emphasis from individual autonomy to relational autonomy, a notion of couple autonomy was suggested and some features of this concept were outlined. First, that both partners are individually autonomous and that the decision is reached through a communicative process. In this process each partner should feel free to express his or her concerns and preferences, so no one partner dominates the discussion. Further, there should be adequate time for the couple to negotiate possible differences and conclude that the decision is right for them. The final decision should be reached through consensus of both partners without coercion, manipulation or miscommunication. Through concrete examples, the suggested notion of couple autonomy was applied to diverse clinical situations. Conclusions A notion of couple autonomy can be fruitful for healthcare professionals by structuring their attention to and support of a couple who is required to make an autonomous joint decision concerning preconception ECS. A normative implication for healthcare staff is to allow the necessary time for decision-making and to promote a dialogue that can increase the power of the weaker part in a relationship.

Purpose The purpose of this paper is to analyse ethical competence related to healthcare governance and management tasks at the county/regional level in Sweden. The paper also discusses conditions that support or constrain the development and application of such competence. Design/methodology/approach The study is based on original qualitative data from 13 interviews and 6 meeting observations. Three key groups of actors were included: politicians, civil servants and CEOs in publicly financed health-provider organizations. An abductive analysis was carried out by a stepwise method guided by thematic research questions. Findings The informants viewed themselves as having a high degree of ethical responsibility for healthcare practice. However, they did not integrate ethical reflection and dialogue into their work decisions (e.g. regarding budgets, reforms and care agreements). The current organization, control systems and underlying business principles, along with the individuals’ understanding of their own and others’ roles, tended to constrain the development and use of ethical competence. Practical implications Qualities of an appropriate ethical competence related to healthcare governance and management, and conditions to develop and use such competence, are suggested. Originality/value Hardly any empirical research has examined ethical competence related to healthcare governance and management tasks. The paper integrates ethics and theories on learning in organizations and contributes knowledge about ethical competence and the conditions necessary to develop and practise ethical competence in an organizational and inter-organizational context.

Background In cancer care, do not resuscitate (DNR) orders are common in the terminal phase of the illness, which implies that the responsible physician in advance decides that in case of a cardiac arrest neither basic nor advanced Coronary Pulmonary Rescue should be performed. Swedish regulations prescribe that DNR decisions should be made by the responsible physician, preferably in co-operation with members of the team. If possible, the patient should consent, and significant others should be informed of the decision. Previous studies have shown that physicians and nurses can experience ethical dilemmas in relation to DNR decisions, but knowledge about what ethical reasoning they perform is lacking. Therefore, the aim was to describe and explore what ethical reasoning physicians and nurses apply in relation to DNR-decisions in oncology and hematology care. Methods A qualitative, descriptive and explorative design was used, based on 287 free-text comments in a study-specific questionnaire, answered by 216 physicians and nurses working in 16 oncology and hematology wards in Sweden. Comments were given by 89 participants. Results The participants applied a situation-based ethical reasoning in relation to DNR-decisions. The reasons given for this were both deontological and utilitarian in kind. Also, expressions of care ethics were found in the material. Universal rules or guidelines were seen as problematic. Concerning the importance of the subject, nurses to a higher extent underlined the importance of discussing DNR-situations, while physicians described DNR-decisions as over-investigated and not such a big issue in their daily work. Conclusion The study revealed that DNR-decisions in oncology and hematology care gave rise to ethical considerations. Important ethical values described by the participants were to avoid doing harm and to secure a peaceful and “natural” death with dignity for their dying patients. A preference for the expression “allow for natural death” instead of the traditional term “do not resuscitate” was found in the material.

To improve healthcare policymaking, commentators have recommended the use of evidence, health technology assessment, priority setting, and public engagement in the process of policymaking. Preconception expanded carrier screening, according to the World Health Organization's definition, is a novel health technology and therefore warrants assessment, part of which involves evaluating ethical and social implications. We examined ten Swedish policymakers' perspectives on ethical and social aspects of preconception expanded screening through in-depth expert interviewing, using a semi-structured questionnaire. Respondents were affiliated to governmental and non-governmental institutions that directly influence healthcare policymaking in Sweden. The interviews were recorded, transcribed verbatim, and analyzed via inductive thematic analysis method, which generated seven themes and several subthemes. Policymakers harbored concerns regarding the economics, Swedish and international political respects, implementation procedures, and societal effects, which included long-term ones. Moreover, participants detailed the role of public engagement, research, and responsibility in regard to preconception expanded carrier screening implementation. Since this is a qualitative study, with a small non-random sample, the results may not be generalizable to all policymakers in Sweden. However, the results give a profound insight into the process and interpretative knowledge of experts, in the Swedish milieu and the extent of readiness of Sweden to implement a preconception expanded carrier screening program.

Purpose– The purpose of this paper was to explore what kind of ethical competence healthcare managers need in handling conflicts of interest (COI). The aim is also to highlight essential learning processes to develop healthcare managers’ ethical competence.Design/methodology/approach– A qualitative study was performed. Semi-structured interviews with ten Swedish healthcare managers from different care providers were carried out twice and analysed through step-wise categorisation.Findings– Four categories of COI were revealed and two ways (passive and active) in which COI were handled. Ethical guidelines did not help the healthcare managers to handle the COI, and none of the managers made use of any sort of systematic ethical analysis. However, certain ethical competence was of great importance to identify and handle COI, consisting of contextual understanding, rational emotions, some theoretical knowledge and a suitable language. Organising work so that ethical analysis can be carried out is of great importance, and top management needs to clearly express the importance of ethical competence and allocate resources to allow adequate learning processes.Originality/value– This paper highlights the management level and focuses on how work-integrated learning-processes can enable ethical competence. Ethical competence at the management level is essential both to comply with the constitution and legal requirements regarding healthcare, and so that managers are able to analyse COI and justify their decisions.

Background Although Swedish legislation prescribes equity in healthcare, studies have reported inequalities, both in face-to-face encounters and in telephone nursing. Research has suggested that telephone nursing has the capability to increase equity in healthcare, as it is open to all and not limited by long distances. However, this requires an increased awareness of equity in healthcare among telephone nurses. The aim of this study was to explore and describe perceptions of equity in healthcare among Swedish telephone nurses who had participated in an educational intervention on equity in health, including which of the power constructs gender, ethnicity and age they commented upon most frequently. Further, the aim was to develop a conceptual model for obtaining equity in healthcare, based on the results of the empirical investigation. Method A qualitative method was used. Free text comments from questionnaires filled out by 133 telephone nurses before and after an educational intervention on equity in health, as well as individual interviews with five participants, were analyzed qualitatively. The number of comments related to inequity based on gender, ethnicity or age in the free text comments was counted descriptively. Results Gender was the factor commented upon the least and ethnicity the most. Four concepts were found through the qualitative analysis: Denial, Defense, Openness, and Awareness. Some informants denied inequity in healthcare in general, and in telephone nursing in particular. Others acknowledged it, but argued that they had workplace routines that protected against it. There were also examples of an openness to the fact that inequity existed and a willingness to learn and prevent it, as well as an already high awareness of inequity in healthcare. Conclusion A conceptual model was developed in which the four concepts were divided into two qualitatively different blocks, with Denial and Defense on one side of a continuum and Openness and Awareness on the other. In order to reach equity in healthcare, action is also needed, and that concept was therefore added to the model. The result can be used as a starting point when developing educational interventions for healthcare personnel.

Background. From spring of 2012, human papillomavirus (HPV) vaccine against cervical cancer is offered free of charge to all girls aged 10–12 years through a school-based vaccination programme in Sweden. The aim of this study was to explore how parents reason when they accept HPV vaccination for their young daughter and also their views on HPV-related information. Methods. Individual interviews with parents (n = 27) of 11–12-year-old girls. The interviews were recorded, transcribed verbatim, and analysed using thematic content analysis. Results. Three themes emerged through the analysis: Trust versus concern, Responsibility to protect against severe disease, and Information about HPV and HPV vaccination is important. The parents expressed trust in recommendations from authorities and thought it was convenient with school-based vaccination. They believed that cervical cancer was a severe disease and felt a responsibility to protect their daughter from it. Some had certain concerns regarding side effects and vaccine safety, and wished for a dialogue with the school nurse to bridge the information gaps. Conclusions. Trust in the recommendations from authorities and a wish to protect their daughter from a severe disease outweighed concerns about side effects. A school-based vaccination programme is convenient for parents, and the school nurse has an important role in bridging information gaps. The findings from this qualitative study cannot be generalized; however, it can provide a better understanding of how parents might reason when they accept the HPV vaccination for their daughter.

Background A shared electronic medical record (EMR) can improve communication between primary and secondary care. A consideration of the contents using Data-Information-Knowledge-Wisdom (DIKW) hierarchy could help inform further development of such systems regarding communication about prescribed medication. Objectives To investigate primary and secondary care doctors' experiences of the shared EMR in Uppsala, Sweden, focusing on the creation, use and cross-sector transfer of data, information, knowledge and wisdom about individual patients' prescribed medication. Method Nine focus groups were held with hospital doctors, of different grades and medical specialties, working at a single large teaching hospital in Uppsala, Sweden and primary care doctors worked in the same geographical area, in urban and rural primary care centers. The transcribed data were analyzed used the constant comparative method, based on data from the participants and application of the DIKW hierarchy. Results The doctors were very positive about accessing and using the shared EMR. Data and information in the system were efficiently retrieved and combined with newly collected data and information to create further knowledge. However, they also described a data and information overload, where it was difficult to get a general overview of what had happened over time, coupled with the frequent lack of knowledge being created and shared by other healthcare providers. Doctors were, instead, either explicitly asked or implicitly expected to read and interpret all available data and information and recreate knowledge themselves. Conclusions This study highlighted the differences between access to data and information and access to knowledge in a shared EMR. In rolling out such a system, an increased availability of data and information should not be at the expense of a reduced availability of knowledge.

In 2011, for the first time ever, two scientific journals were asked not to publish research papers in full detail. The research in question was on the H5N1 influenza virus (bird flu), and the concern was that the expected public health benefits of disseminating the findings did not outweigh the potential harm should the knowledge be misused for malicious purposes. This constraint raises important ethical concerns as it collides with scientific freedom and openness. In this article, we argue that constraining the dissemination of dual-use knowledge can in certain cases be justified because, for example: scientists have a responsibility for potentially harmful consequences of their research; the public need not always know of all scientific discoveries; uncertainty about the risks of harm may warrant precaution; and expected benefits do not always outweigh potential harm. However, the constraints in question are not absolute but can be both temporary and partial. We propose three core aspects for an ethics of dual-use dissemination: dual-use awareness, precaution, and acknowledgment of conflicting values. Additionally, to help scientists understand when constraints on dissemination may be justified we suggest three corresponding conditions that prompt scientists to recognize dual-use material or research, consider the potential impact of dual-use knowledge dissemination, and acknowledge and respond to external dissemination concerns.

The aim of this study was to explore the relational aspects of the consent process for HPV vaccination as experienced by school nurses, based on the assumption that individuals have interests related to persons close to them, which is not necessarily to be apprehended as a restriction of autonomy; rather as a voluntary and emotionally preferred involvement of their close ones. Thirty Swedish school nurses were interviewed in five focus groups, before the school based vaccination program had started in Sweden. The empirical results were discussed in light of theories on relational autonomy. The school nurses were convinced that parental consent was needed for HPV vaccination of 11-year-old girls, but problems identified were the difficulty to judge when a young person is to be regarded as autonomous and what to do when children and parents do not agree on the decision. A solution suggested was that obtaining informed consent in school nursing is to be seen as a deliberative process, including the child, the parents and the nurse. The nurses described how they were willing strive for a dialogue with the parents and negotiate with them in the consent process. Seeing autonomy as relational might allow for a more dialogical approach towards how consent is obtained in school based vaccination programs. Through such an approach, conflicts of interests can be made visible and become possible to deal with in a negotiating dialogue. If the school nurses do not focus exclusively on accepting the individual parent's choice, but strive to engage in a process of communication and deliberation, the autonomy of the child might increase and power inequalities might be reduced.

The overall aim of the present study was to explore awareness of inequity in healthcare and the intersection between different structures of power among nursing students. Another aim was to delineate the knowledge and use of Swedish Healthcare Direct in this group.The study had a descriptive design with a quantitative approach.The sample consisted of 157 nursing students from three universities in central Sweden.The students filled out a study specific questionnaire in class. The questionnaire consisted of short descriptions of twelve fictive persons who differed in gender, age, and ethnicity, with questions about their life situation. The mean was calculated for each assessed fictive person for every item. In the next step, the assessments were ranked from the lowest probability to the highest probability. A 'Good life-index' consisting of quality of life, power over own life, and experience of discrimination, was also calculated. Free text comments were analysed qualitatively.People with Swedish names were assessed to have the highest probability of having a good life. Among those with Swedish names, the oldest woman was assessed as having the lowest probability of a good life. All students had knowledge about Swedish Healthcare Direct, but more female students had used the service compared to male students.The results indicate that the nursing students had awareness of how power and gender, ethnicity and age, are related. Based on the free text comments, the questions and the intersectional perspective seemed to evoke some irritation which points to their sensitive nature. Therefore, the questionnaire could be used as a tool to start a discussion of equity in healthcare and in interventions where the aim is to raise awareness of inequality and intersectionality.

Objective: In oncology and hematology care, a patient can have such a poor prognosis that cardiopulmonary resuscitation (CPR) for cardiac arrest is not considered feasible. The responsible physician can then decide to apply a do-not-resuscitate (DNR) order, meaning that neither basic (heart compressions and ventilation) nor advanced (defibrillator or medicines) CPR should be performed. Previous research has found disagreement in relation to DNR decisions among physicians and nurses working in this field. The aim of the present study was to explore the experiences and perceptions of physicians with respect to DNR orders within hematology and oncology care, in order to better understand their specific roles in this decision-making process, with focus on the ethical aspects of the decisions. Methods: Individual interviews were performed with 16 physicians working in hematology and oncology departments at seven hospitals in Sweden. Data were analyzed using systematic text condensation (STC). Results: Two main parts of the data were discerned. The first described the physicians’ different roles in the team in relation to decisions on DNR, as decision maker, patient advocate and mediator for relatives and team member. In the second part the physicians shared their experiences of making ethically challenging decisions on DNR. The experiences ranged from feeling as though they were making themselves God, to regarding a DNR order as one regular medical decision among others. The physicians made decisions on CPR or DNR with the patient's best interests in mind, primarily on medical grounds. However, they also considered ethical aspects of the decision, weighing beneficence versus maleficence. Conclusion: The results indicate that DNR decisions in oncology and hematology care are not only taken on medical grounds, such as the prognosis of the disease and the expected survival after CPR, but also with reference to ethical values, such as patient autonomy and the quality of life after resuscitation.

Life scientists have with increasing intensity been requested to recognize and take responsibility for the potential dual use implications of their work. To assist in meeting these demands, a numbe...

Aim To investigate school nurses’ perceptions of HPV immunization, and their task of administering the vaccine in a planned school-based program in Sweden. Method: Data were collected through five ...

Most life science research entails dual-use complexity and may be misused for harmful purposes, e.g. biological weapons. The Precautionary Principle applies to special problems characterized by com ...

With the advanced methods of analysing old biological material, it is pressing to discuss what should be allowed to be done with human remains, particularly for well documented historical individuals. We argue that Queen Christina of Sweden, who challenged the traditional gender roles, has an interest in maintaining her privacy when there are continued attempts to reveal her 'true' gender. In the long-running philosophical debate on posthumous wronging, the fundamental question is: Who is wronged? Our aim is to find this 'missing subject' using narrative theory. Narrative identity emphasises the fact that no person is alone in knowing or telling their life story. People's lives are entangled and parts of the life story of a deceased person can remain in the living realm. Since the narrative identity of a person does not necessarily end upon their death, and this narrative continues to relate directly to the person who once existed, it is the narrative subject that can continue to be posthumously wronged. Queen Christina can no longer maintain her own identity, but we maintain it by our research into her life. We propose three duties relevant for posthumous wronging: the duty of truthfulness, the duty of recognition and the duty to respect privacy.

We collected data about telephone triage calls concerning children in Sweden. A sample of 110 paediatric calls were recorded. The transcribed data were analysed regarding word count, reasons for calling, results of calls, ages and gender of children, and gender of parents. The median call length was 4.4 min and the median child's age was 3.5 years. Mothers made 73% of calls, but mothers and fathers called to the same extent about daughters and sons, and regardless of age. The most common reasons for calls were ear problems, rash/wound or fever. In nearly half the calls, the telenurses provided self-care advice. Call length, word count or caller's part of word count did not differ according to gender of parents or children. However, mothers were more likely to receive self-care advice while fathers were more often referred to other health services by the telenurses. Telenurses might need to improve their gender competence, and more male telenurses in the service would potentially be beneficial to callers.

The aim of the present study was to describe and explore the perception of ethical guidelines and their role in ethical competence-building among Swedish physicians and research nurses. Twelve informants were interviewed in depth. The results demonstrated that the informants had a critical attitude towards ethical guidelines and claimed to make little use of them in practical moral judgements. Ethical competence was seen primarily as character-building, related to virtues such as being empathic, honest and loyal to patients. Ethical competence was assumed to be learned through good examples, role models and practical experience, while ethical guidelines were not perceived as valuable in this process. In order to improve the staff's familiarity with and the usability of ethical guidelines, the workplace needs to provide opportunities for ethical dialogues. In such discussions, argumentation can improve, virtues can be developed and guidelines can be usefully invoked.

Scand J Caring Sci; 2010; 24; 482–489 Patient participation during hospitalization for myocardial infarction: perceptions among patients and personnel Background: Patient participation in healthcare decision-making and illness management has been associated with high patient satisfaction ratings and improved treatment outcomes in chronic diseases. Less is known about patient participation in acute illness, such as myocardial infarction (MI). Aim: To explore and describe patient and personnel perceptions of patient participation in care processes and decision-making during hospitalization for MI. Method: A descriptive qualitative design was used. Five thematic focus group interviews were carried out (n = 25), two with patients and three with personnel, at three Swedish hospitals in 2005. Two researchers were present during the interviews; one as facilitator and one responsible for documentation. The interviews were recorded, transcribed verbatim and analysed through a thematic stepwise method. Results: Five themes emerged from the interviews: the meaning of patient participation, positive outcomes, difficult situations, hindrances and facilitating factors. A shared basic assumption in all groups was that patient participation is valuable and desirable in the patient–doctor/nurse encounter in MI care. However, both staff and patients viewed patient participation primarily as information. Active involvement in medical decision-making was less emphasized. Participation was judged as especially difficult to achieve during the initial, emergency phase of MI, although the informants also stressed the need for information in this phase. Positive outcomes of patient participation mentioned were that the patient may feel more secure if involved and that he/she might be more committed to the recovery process. Hindrances were lack of time, staff and, in patients, medical knowledge. Patient characteristics could also influence the level of participation. Conclusion: If patient participation is to be achieved in all phases of MI care, patients need to be made aware of their right to participate. Health care professionals need to develop appropriate communication skills for each phase of the MI patient’s hospitalization.

In spite of the growing interest in nursing ethics, few studies have focused on ethical dilemmas experienced by nurses working with clinical studies as 'research nurses'. The aim of the present study was to describe and explore ethical dilemmas that Swedish research nurses experience in their day-to-day work. In a qualitative study a purposeful sample of six research nurses from five wards of differing disciplines in four Swedish hospitals was interviewed. The analysis displayed several examples of ethical dilemmas, primarily tensions between the nurses' obligations to the study and to the patients involved. A guiding moral principle for the nurses was patient-centeredness, where the interest of research must not override the interest of the patient. In situations where tensions between research and patient interests occurred, and doctors and nurses disagreed upon the judgement, the nurses sometimes chose to follow the doctors' advice, and thus acted against their own moral judgment. Such situations seemed to create feelings of moral distress among the nurses. They described their profession as being 'invisible' and as lacking opportunities for ethical competence building. The conclusion is that research nurses frequently experience severe and difficult ethical dilemmas in their daily work. They need to be acknowledged as a particular profession in the health care organisation and encouraged to develop their specific ethical competence.

In the past decade, the perception of a bioterrorist threat has increased and created a demand on life scientists to consider the potential security implications of dual use research. This article examines a selection of proposed moral obligations for life scientists that have emerged to meet these concerns and the extent to which they can be considered reasonable. It also describes the underlying reasons for the concerns, how they are managed, and their implications for scientific values. Five criteria for what constitutes preventable harm are suggested and a number of proposed obligations for life scientists are considered against these criteria, namely, the obligations to prevent bioterrorism; to engage in response activities; to consider negative implications of research; not to publish or share sensitive information; to oversee and limit access to dangerous material; and to report activities of concern. Although bioterrorism might be perceived as an imminent threat, the analysis illustrates that this is beyond the responsibility of life scientists either to prevent or to respond to. Among the more reasonable obligations are duties to consider potential negative implications of one's research, protect access to sensitive material, technology and knowledge, and report activities of concern. Responsibility, therefore, includes obligations concerned with preventing foreseeable and highly probable harm. A central conclusion is that several of the proposed obligations are reasonable, although not unconditionally.

To describe and explore gender aspects in telenursing as experienced by Swedish telenurses.Telenurses at call centres in Sweden offer triage recommendations and self-care advice to the general public over the telephone, on a wide range of health problems. The demands on telenurses are multifaceted and competence is needed in many fields such as nursing, pharmacology, psychology and communication. Previous studies have shown that telenurses encounter many ethical dilemmas and that some of these are to do with gender related issues. Most telenurses, as well as most callers, are women. It is, therefore, reasonable to believe that gender plays an important role in the work of telenurses.Descriptive and explorative qualitative design.A purposive sample of 12 female telenurses in Sweden participated in in-depth interviews twice during 2004-2005. The transcribed interviews were analysed inductively with a stepwise thematic method.Five themes emerged from the interviews, namely: female subordination in the family, disrespect in dialogue with female nurses, distrust in fathers' competence, reluctant male callers and woman-to-woman connection.Gender construction and cultural gender norms seem to be at work in the encounter between Swedish telenurses and callers. Questions of power relations, the picture of the mother/woman as the primary carer for small children and distrusting men in their parental role were particularly highlighted.Telenurses should be aware of the risk of stereotyping their dialogues with callers in a way that seems to fit better with female callers' ways of communicating. Clinical supervision based on reflective practice and peer reviews of calls might diminish this risk. Telenurses also need more training in handling overt or covert power messages based on male superiority.

BACKGROUND Patients' involvement in their healthcare has been associated with improved treatment outcomes in chronic illness. Less is known about the affects of patient involvement on the outcomes of acute illness, such as myocardial infarction. A better understanding of patients' views and behaviour during hospitalization might improve clinical practice and enhance patient involvement. AIM The aim of this study was to develop and evaluate a questionnaire for measuring patients' perceptions of their involvement during hospitalization for myocardial infarction care. METHODS Focus groups with myocardial infarction patients provided the basis for the construction of the questionnaire. Questionnaire validity and reliability were evaluated in a small pilot study and a larger cross-sectional study among myocardial infarction patients at eleven Swedish hospitals. RESULTS The questionnaire demonstrated good validity and reliability, with six factors measuring patient views and behaviour regarding involvement. CONCLUSION The questionnaire appears to be a useful tool for evaluating the perceptions and behaviour of patients regarding patient involvement in myocardial infarction care. Use of this questionnaire may provide insight regarding areas of patient-staff interaction that need improvement. Pinpointing such areas may lead to improved patient involvement, satisfaction with care, and treatment outcomes.

Patients' involvement in their healthcare has been associated with better health outcomes. However, few studies have examined whether patient involvement affects the work of healthcare professionals. A better understanding of professionals' views and behaviour is necessary for improving clinical practice and optimizing patient involvement.To measure perceptions and behaviour regarding patient involvement among physicians and nursing staff caring for patients with acute myocardial infarction.A questionnaire study conducted in 2005 among cardiology staff at twelve Swedish hospitals. The questionnaire included six scales measuring staff views and behaviour.Physicians, registered nurses, and practical nurses did not differ significantly in their views of patient involvement, but did differ significantly in behaviour (p.001). All three groups felt that an actively involved patient enriched their work, at the same time increasing their work load and taking time from other tasks. Physicians discussed daily activities and lifestyle changes with myocardial infarction patients before hospital discharge to a greater extent than nursing staff (p.001).Physicians and registered nurses viewed time constraints as a hinder for patient involvement, while practical nurses felt unsure in communicating with patients. Considering these organizational and professional issues may improve patient involvement and health outcomes in myocardial infarction care.

Background: Healthcare legislation in several nations now dictates the responsibility of health care professionals to involve patients in decisions concerning care and treatment. However, few studies have examined the impact of patient involvement on the work of health care professionals. A better understanding of staff views and behaviour might enhance patient involvement. Aim: The aim of this study was to develop and validate a questionnaire for measuring views and behaviour regarding patient involvement among physicians and nursing staff caring for patients with myocardial infarction. Methods: Focus groups among cardiology staff provided the basis for the construction of the questionnaire. Questionnaire validity and reliability were evaluated in a small pilot study and a larger cross-sectional study among cardiology staff at twelve Swedish hospitals. Results: The questionnaire demonstrated good validity and reliability, with two factors measuring staff views and four measuring behaviour. Conclusion: The questionnaire appears to be a useful tool for evaluating the perceptions and behaviour of physicians and nursing staff regarding patient involvement in myocardial infarction care. Use of this questionnaire may provide insight regarding areas of staff–patient interaction that need improvement, as well as implications of patient involvement for the work of each professional group on cardiology wards.

In the long-running debate on the interest of the dead, Joan C. Callahan argues against such interests and although Søren Holm for practical reasons is prepared to consider posthumous interests, he does not see any moral basis to support such interests. He argues that the whole question is irresolvable, yet finds privacy interests where Tutankhamen is concerned. Callahan argues that there can be reasons to hold on to the fiction that there are posthumous interests, namely if it is comforting for the living and instrumental for society. Thus, despite arguing against the position that the dead have any interests or for any moral basis for such interests, these "interests" are still taken into consideration in the end. This shows the unsatisfactory basis of their positions and indicates the tenacity of the moral intuition that the dead can have moral claims on the living. One example of a posthumous interest is the interest in one's good name. Here we argue that it is an interest of moral significance. This implies that if individuals restrict use of their sample when they are still alive, those restrictions apply after their death. Further, it implies that one should be concerned with the reputation of historic persons. Research that defeats these interests calls for justification. We have suggested two lines of thinking along which such a discussion could go: investigating the truth-value of the good name and the relevance of bringing it into possible disrepute.

There is a growing interest in ethical competence-building within nursing and health care practising. This tendency is accompanied by a remarkable growth of ethical guidelines. Ethical demands have also been laid down in laws. Present-day practitioners and researchers in health care are thereby left in a virtual cross-fire of various legislations, codes, and recommendations, all intended to guide behaviour. The aim of this paper was to investigate the role of ethical guidelines in the process of ethical competence-building within health care practice and medical research. A conceptual and critical philosophical analysis of some paragraphs of the Helsinki Declaration and of relevant literature was performed. Three major problems related to ethical guidelines were identified, namely, the interpretation problem (there is always a gap between the rule and the practice, which implies that ethical competence is needed for those who are to implement the guidelines); the multiplicity problem (the great number of codes, declarations, and laws might pull in different directions, which may confuse the health care providers who are to follow them); and the legalisation problem (ethics concerns may take on a legal form, where ethical reflection is replaced by a procedure of legal interpretations). Virtue ethics might be an alternative to a rule based approach. This position, however, can turn ethics into a tacit knowledge, leading to poorly reflected and inconsistent ethical decisions. Ethical competence must consist of both being (virtues) and doing (rules and principles), but also of knowing (critical reflection), and therefore a communicative based model is suggested.

Reproductive autonomy, medicalization, and discrimination against disabled and parental responsibility are the main ongoing ethical debates concerning reproductive genetic screening. To examine Swedish healthcare professionals’ views on preconception expanded carrier screening (ECS), a qualitative study involving academic and clinical institutions in Sweden was conducted in September 2014 to February 2015. Eleven healthcare professionals including clinicians, geneticists, a midwife, and a genetic counselor were interviewed in depth using a semi-structured interview guide. The questionnaire was constructed after reviewing the main literature and meetings with relevant healthcare providers. The interviews were recorded, transcribed verbatim, and content analyzed for categories and subcategories. Participants nurtured many ethical and non-ethical concerns regarding preconception ECS. Among the ethical concerns were the potential for discrimination, medicalization, concerns with prioritization of healthcare resources, and effects on reproductive freedom. The effects of implementation of preconception ECS, its stakeholders, regulations, and motivation are some of non-ethical concerns. These concerns, if not addressed, may affect the uptake and usage of carrier screening within Swedish healthcare system. As this is a qualitative study with a small non-random sample size, the findings cannot be generalized. The participants had little to no working experience with expanded screening panels. Moreover, the interviews were conducted in English, a second language for the participants, which might have limited the expression of their views. However, the authors claim that the findings may be pertinent to similar settings in other Scandinavian countries.