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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.

Background Although Swedish legislation prescribes equity in healthcare, inequitable healthcare is repeatedly reported in Sweden. Telephone nursing is suggested to promote equitable healthcare, making it just one call away for anyone, at any time, irrespective of distance. However, paediatric health calls reflect that male parents are referred to other health services twice as much as female parents are. Regarding equity in healthcare, telephone nurses have expressed a continuum from Denial and Defence to Openness and Awareness. To make a change, Action is also needed, within organizational frames. The aim here was thus to investigate Swedish Healthcare Direct managers’ views on gender (in)equity in healthcare through the application of a conceptual model, developed based on empirical Swedish Healthcare Direct telephone RN data, as a baseline measure at the service’s national implementation. Methods All Swedish Healthcare Direct managers were interviewed during the period March–May 2012. They were asked how they view equitable healthcare, and how they work to achieve it. A conceptual model for attaining equity in healthcare, including Denial, Defence, Openness, Awareness and Action, was used in a deductive thematic analysis of the interview data. Results The five model concepts – Denial; Defence; Openness; Awareness and Action – were found in a variety of combinations in the manager interviews. Denial and Defence were mentioned to a higher extent than Openness and Awareness. Several informants denied inequity, arguing that the decision support tool prevented this. However, those who primarily expressed Denial and Defence were also open to learning more on the subject. Action was only mentioned twice in the informants’ answers, and then only implicitly. Conclusion Although a majority of the interviewed managers expressed a lack of awareness of (in)equity in healthcare, they also expressed an openness to learning more. While this may reflect a desire to show political correctness, it also points to the need for educational training in order to increase the awareness of (in)equity in healthcare among healthcare managers. Future follow up measurements will reveal if this has happened.

Background By tradition, the Swedish health care system is based on a representative and parliamentary form of government. Recently, new management forms, inspired by market principles, have developed. The steering system is both national and regional, in that self-governing county councils are responsible for the financing and provision of health care in different regions. National and local documents regulating Swedish health care mention several ethical values, such as equity in health for the whole population and respect for autonomy and human dignity. It is therefore of interest to investigate the status of such ethical statements in Swedish health care management. Method The aim of the present study was to investigate perceptions of the status of ethics in the daily work of politicians, chief civil servants and Chief Executive Officers (CEOs) from care-giver organizations in the county council of Stockholm. A qualitative method was used, based on inductive content analysis of individual interviews with 13 health care managers. Results The content analysis resulted in four categories: Low status of ethics; Cost-effectiveness over ethics; Separation of ethics from management; and Lack of opportunities for ethical competence building. The informants described how they prioritized economic concerns over ethics and separated ethics from their daily work. They also expressed that they experienced that this development had been enforced by the marketization of the health care system. Further, they described how they lacked opportunities for ethical discussions, which could have helped develop their ethical competence. Conclusions In order to improve the status of ethics in health care management, ethical considerations and analyses must be integrated in the regular work tasks of politicians, chief civil servants and CEOs; such as decision-making, budgeting and reform work. Further, opportunities for ethical dialogues on a regular basis should be organized, in order to improve ethical competence on the management level. New steering forms, less focused upon market principles, might also be needed, in order to improve the status of ethics in the health care management organization.

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 : Telenursing is an expanding service in most Western societies. Sweden is a front-line country, with all of its 21 counties connected to Swedish Healthcare Direct (SHD) 1177. The intention of the service is twofold: to make health care more efficient, while also making it more accessible and safe for patients. Previous research has shown, however, that the service is not used equitably. Gender, age, socio-economic, and ethnicity differences have been reported as determining factors for the use of the service and the advice given. Aim : The aim of the study was to explore the communication between telenurses and callers in authentic calls to SHD 1177. Methodology : A qualitative method, using critical discourse analysis (CDA), was chosen. The approach was deductive, that is, the analysis was made in view of a predetermined framework of theory. Twenty calls were strategically chosen and included in the study. Results : The CDA resulted in five types of calls, namely a gatekeeping call, a gendered call, a call marked by impersonal traits, a call with voices of the life world, and finally a counter discourse call. The dominating patterns in the calls were of gatekeeping and biomedical character. Patterns of the societal gender order were found, in that representations of the reluctant male caller and the ideal female caller were identified, but also a call representing a counter discourse. The service seemed difficult to use for patients with low language proficiency. Conclusion : Telenursing could potentially challenge inequalities in health care. However, the discourse of telenursing is dialectically related to neoliberal ideology and the ideology of medicine. It is also situated in a gendered context of ideal femininity and hegemonic masculinity. Through better awareness of gender biases and the callers’ different resources for making themselves heard, the communication between telenurse and caller might become more equal and thereby better suitable for all callers. Key words : Authentic calls, communication, discourse analysis, gender, telenursing, Sweden (Published: 24 June 2014) Citation: Int J Qualitative Stud Health Well-being 2014, 9 : 24255 - http://dx.doi.org/10.3402/qhw.v9.24255

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.

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.

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.

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.

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.

This article presents the development, validation and application of an instrument to measure everyday moral distress in different health care settings. The concept of moral distress has been discussed and developed over 20 years. A few instruments have been developed to measure it, predominantly in nursing. The instrument presented here consists of two factors: level of moral distress, and tolerance/openness towards moral dilemmas. It was tested in four medical departments and three pharmacies, where 259 staff members completed a questionnaire. The two factors were found to be reliable. Differences in levels of moral distress were found between pharmacies and clinical departments, and between the youngest and oldest age groups; departmental staff and the youngest group experienced higher levels of moral distress. Departments reported less tolerance/openness towards moral dilemmas than pharmacies. The instrument needs to be tested further, but its strengths are the focus on everyday ethical dilemmas and its usefulness in different health care settings.

Background: Within oncology and hematology care, patients are sometimes considered to have such a poor prognosis that they can receive a do not resuscitate order from the physician responsible, stipulating that neither basic nor advanced coronary pulmonary rescue be performed in the event of a cardiac arrest. Studies on do not resuscitate decisions within oncology and hematology units, focusing on the specific role of the nurse in relation to these decisions, are scarce. Objective: The aim of this study was to investigate hematology and oncology nurses’ experiences and perceptions of do not resuscitate orders, in order to achieve a deeper understanding of the nurses’ specific role in these decisions. Research design: A qualitative, descriptive methodology with individual semi-structured interviews was used. Participants and research context: A total of 15 nurses from eight hematology/oncology wards in four hospitals in Sweden were interviewed individually. Ethical considerations: In accordance with national regulations, an ethical review was not required for this study. The research followed international guidelines for empirical research, as outlined in the Helsinki Declaration. Findings: The nurses strived for good nursing care through balancing harms and goods and observing integrity and quality of life as important values. Experienced hindrances for good care were unclear and poorly documented decisions, uninformed patients and relatives, and disagreements among the caregivers and family. The nurses expressed a need for an ongoing discussion on do not resuscitate decisions, including all concerned parties. Conclusion: In order to provide good nursing care, nurses need clear and well-documented do not resuscitate orders, and patients and relatives need to be well informed and included in the decisions. To increase the understanding for each other’s opinions within the medical team, regular ethical discussions are required.

To investigate school nurses' perceptions of HPV immunization, and their task of administering the vaccine in a planned school-based program in Sweden.Data were collected through five focus group interviews with school nurses (n=30). The interviews were recorded, transcribed verbatim and analyzed using content analysis.The theme Positive attitude to HPV immunization despite many identified problems and challenges summarizes the results. The school nurses saw the program as a benefit in that the free school-based HPV immunization program could balance out social inequalities. However, they questioned whether this new immunization program should be given priority given their already tight schedule. Some also expressed doubts regarding the effect of the vaccine. It was seen as challenging to obtain informed consent as well as to provide information regarding the vaccine. The nurses were unsure of whether boys and their parents should also be informed about the immunization.Although some positive aspects of the new HPV immunization program were mentioned, the school nurses primarily identified problems and challenges; e.g. regarding priority setting, informed consent, culture and gender. In order to achieve a good work environment for the school nurses, and obtain a high coverage rate for the HPV immunization, these issues need to be taken seriously, be discussed and acted upon.

The aim of this study was to evaluate the effect of an educational intervention concerning human papillomavirus (HPV) directed at Swedish first year high school students. The intervention consisted of a class room lesson, a website and a folder. Outcome variables were knowledge of HPV and attitudes to preventive methods such as HPV vaccination, condom use and Pap smear testing. An intervention group ( n = 92) was matched with two comparison groups ( n = 184). At baseline, the median score for HPV knowledge was one out of 10 in both groups. At follow-up, the median knowledge score had increased to six in the intervention group, but was still one in the comparison group ( P < 0.001). Attitudes to HPV vaccination, condom use and Pap smear testing remained the same ( P > 0.05). In conclusion, a short school-based intervention can greatly increase the students' knowledge about HPV, but attitudes and behaviours are less easy to influence.

To investigate whether patient involvement during hospitalization for acute myocardial infarction (MI) was associated with health and behavioural outcomes 6-10 weeks after hospital discharge.Patient involvement has been associated with improved health outcomes in chronic disease, but less research has focused on the effects of patient involvement in acute conditions, such as MI.Self-administered questionnaire study. Questionnaire results were run against medical outcome data in a national database of cardiac patients.Cardiac patients (n = 591) on their first follow-up visit after hospitalization for MI at 11 Swedish hospitals.Patient ratings of three questionnaire scales related to involvement; cardiovascular symptoms, medication compliance, participation in cardiac rehabilitation, and achievement of secondary preventive goals.More positive patient ratings of involvement were significantly associated with fewer cardiovascular symptoms 6-10 weeks after hospital discharge. In contrast, patients who attended cardiac rehabilitation and achieved the goals for smoking cessation and systolic blood pressure were significantly less satisfied with their involvement. No association was found between involvement ratings and medication compliance.This study represents a first attempt to examine associations between patient involvement in the acute phase of illness and short-term health outcomes. Some significant associations between involvement and health and behavioural outcomes after acute MI were found. However, higher involvement ratings were not consistently associated with more desirable outcomes, and involvement during hospitalization was not associated with MI patient health and behaviour 6-10 weeks after hospital discharge to the extent hypothesized.

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).To explore and describe patient and personnel perceptions of patient participation in care processes and decision-making during hospitalization for MI.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.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.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.

To investigate knowledge of human papillomavirus (HPV) and attitudes to HPV vaccination and condom use among Swedish first year upper secondary school students.Classroom questionnaire filled in by 608 students from a strategic sample of seven upper secondary schools in Sweden.Only 13.5% (n = 82) of the students had heard about HPV and 6% (n = 35) were aware of HPV vaccination. As many as 84% (n = 508) would like to be vaccinated against HPV. The high cost of vaccination was the greatest obstacle (total group 37%, n = 227); among girls the second major hindrance was the fear of needles (19%, n = 65). Before considering an HPV vaccination 73% (n = 443) wanted more information and 36% (n = 220) would like to receive such information from the school nurse. The students considered it less likely that they would use a condom when having intercourse with a new partner if they were vaccinated than if they were not (p0.001).Despite intensive marketing directed at potential vaccine consumers, knowledge of HPV and of HPV vaccines was very low among first year upper secondary school students. Their attitude towards vaccination was positive but most of them wanted more information before considering vaccination.

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 complexity in the relationship between human activities and their consequences. This article examines whether the principle, so far mainly used in environmental and public health issues, is applicable and suitable to the field of dual-use life science research. Four central elements of the principle are examined: threat, uncertainty, prescription and action. Although charges against the principle exist - for example that it stifles scientific development, lacks practical applicability and is poorly defined and vague - the analysis concludes that a Precautionary Principle is applicable to the field. Certain factors such as credibility of the threat, availability of information, clear prescriptive demands on responsibility and directives on how to act, determine the suitability and success of a Precautionary Principle. Moreover, policy-makers and researchers share a responsibility for providing and seeking information about potential sources of harm. A central conclusion is that the principle is meaningful and useful if applied as a context-dependent moral principle and allowed flexibility in its practical use. The principle may then inspire awareness-raising and the establishment of practical routines which appropriately reflect the fact that life science research may be misused for harmful purposes.

The aim of the study was to investigate knowledge of and attitudes to sexually transmitted infection (STI) and STI prevention with special focus on human papillomavirus (HPV) and the new vaccine against HPV, among 16-year-old high school students in a Swedish context. A study-specific questionnaire was distributed to 572 first year high school students from five different high schools in a medium-sized town in Sweden. The students lacked knowledge of HPV and its association with cervical cancer. Similarly, their knowledge of the new vaccine was limited. Their attitude to condom use when having sex with a new partner was positive, but decreased if oral contraceptives were used and if they were vaccinated against an STI. The main source of information was the school, followed by youth clinics and the media. The results highlight the clinical importance for school nurses and personnel at youth clinics to inform adolescents about HPV and its association with cancer.

The number of legal and nonlegal ethical regulations in the biomedical field has increased tremendously, leaving present-day practitioners and researchers in a virtual crossfire of legislations and guidelines. Judging by the production and by the way these regulations are motivated and presented, they are held to be of great importance to ethical practice. This view is shared by many commentators. For instance, Commons and Baldwin write that, within the nursing profession, patient care can be performed unethically or ethically depending on the professional standards the nurses have set for themselves. They also hold that such standards are set when nurses become aware of the ethical codes available. As nurses are often not familiar with the codes, they do not all conform to them. Commons and Baldwin argue that nurses' ability to deal with ethical dilemmas is effectively secured with education on guidelines, creating a “barrier” between personal and professional values (p. 5).

Increased work complexity and financial strain in the health care sector have led to higher demands on staff to handle ethical issues. These demands can elicit stress reactions, that is, moral distress. One way to support professionals in handling ethical dilemmas is education and training in ethics. This article reports on a controlled prospective study evaluating a structured education and training program in ethics concerning its effects on moral distress. The results show that the participants were positive about the training program. Moral distress did not change significantly. This could be interpreted as competence development, with no effects on moral distress. Alternatively, the result could be attributed to shortcomings of the training program, or that it was too short, or it could be due to the evaluation instrument used. Organizational factors such as management involvement are also crucial. There is a need to design and evaluate ethics competence programs concerning their efficacy.

Queen Christina of Sweden was unconventional in her time, leading to hypotheses on her gender and possible hermaphroditic nature. If genetic analysis can substantiate the latter claim, could this bring the queen into disrepute 300 years after her death? Joan C. Callahan has argued that if a reputation changes, this constitutes a change only in the group of people changing their views and not in the person whose reputation it is. Is this so? This paper analyses what constitutes change and draws out the implications to the reputation of the dead. It is argued that a reputation is a relational property which can go through changes. The change is "real" for the group changing their views on Queen Christina and of a Cambridge kind for the long dead queen herself. Cambridge changes result in new properties being acquired, some of which can be of significance. Although the dead cannot go through any non-relational changes, it is possible for the dead to change properties through Cambridge changes. In this sense changes in reputation do affect the dead, and thus Queen Christina can acquire a new property, in this case possibly a worse reputation.

During the last decade, the Swedish health care system has undergone fundamental changes. The changes have made health care more complex and ethics has increasingly become a required component of clinical practice. Considering this, it is not surprising that many health care professionals suffer from stress-related disorders. Stress due to ethical dilemmas is usually referred to as "moral distress". The present article derives from Andrew Jameton's development of the concept of moral distress and presents the results of a study that, using focus group method, identifies situations of ethical dilemmas and moral distress among health care providers of different categories. The study includes both hospital clinics and pharmacies. The results show that all categories of staff interviewed express experiences of moral distress; prior research has mostly focused on moral distress experienced by nurses. Second, it was made clear that moral distress does not occur only as a consequence of institutional constraints preventing the health care giver from acting on his/her moral considerations, which is the traditional definition of moral distress. There are situations when the staff members do follow their moral decisions, but in doing so they clash with, e.g. legal regulations. In these cases too, moral distress occurs. Hitherto research on moral distress has focused on the individual health care provider and her subjective moral convictions. Our results show that the study of moral distress must focus more on the context of the ethical dilemmas. Finally, the conclusion of the study is that the work organization must provide better support resources and structures to decrease moral distress. The results point to the need for further education in ethics and a forum for discussing ethically troubling situations experienced in the daily care practice for both hospital and pharmacy staff.