Caesarean section on maternal request: a qualitative study of conflicts related to shared decision-making and person-centred care in Sweden.

BACKGROUND: Today, person-centred care is seen as a cornerstone of health policy and practice, but accommodating individual patient preferences can be challenging, for example involving caesarean section on maternal request (CSMR). The aim of this study was to explore Swedish health professionals' perspectives on CSMR and analyse them with regard to potential conflicts that may arise from person-centred care, specifically in relation to shared decision-making. METHODS: A qualitative study using both inductive and deductive content analysis was conducted based on semi-structured interviews. It was based on a purposeful sampling of 12 health professionals: seven obstetricians, three midwives and two neonatologists working at different hospitals in southern and central Sweden. The interviews were recorded either in a telephone call or in a video conference call, and audio files were deleted after transcription. RESULTS: In the interviews, twelve types of expressions (sub-categories) of five types of conflicts (categories) between shared decision-making and CSMR emerged. Most health professionals agreed in principle that women have the right to decide over their own body, but did not believe this included the right to choose surgery without medical indications (patient autonomy). The health professionals also expressed that they had to consider not only the woman's current preferences and health but also her future health, which could be negatively impacted by a CSMR (treatment quality and patient safety). Furthermore, the health professionals did not consider costs in the individual decision, but thought CSMR might lead to crowding-out effects (avoiding treatments that harm others). Although the health professionals emphasised that every CSMR request was addressed individually, they referred to different strategies for avoiding arbitrariness (equality and non-discrimination). Lastly, they described that CSMR entailed a multifaceted decision being individual yet collective, and the use of birth contracts in order to increase a woman's sense of security (an uncomplicated decision-making process). CONCLUSIONS: The complex landscape for handling CSMR in Sweden, arising from a restrictive approach centred on collective and standardised solutions alongside a simultaneous shift towards person-centred care and individual decision-making, was evident in the health professionals' reasoning. Although most health professionals emphasised that the mode of delivery is ultimately a professional decision, they still strived towards shared decision-making through information and support. Given the different views on CSMR, it is of utmost importance for healthcare professionals and women to reach a consensus on how to address this issue and to discuss what patient autonomy and shared decision-making mean in this specific context.

Person-centered care is today a widespread approach, but accommodating individual patient preferences can be challenging, for example involving caesarean section on maternal request (CSMR). This study examines Swedish health professionals' views on CSMR. Interviews with 12 health professionals reveal conflicts between CSMR and key aspects of person-centered care, in particular shared decision-making. While professionals acknowledge women's autonomy, they question CSMR without medical need. Concerns include for example treatment quality and patient safety, and avoiding treatments that harm others. The Swedish context, balancing collective solutions with individualized care, complicates decision-making. Unlike countries with more private healthcare, where CSMR support might be higher, Swedish health professionals emphasize shared decision-making despite viewing the mode of delivery as primarily a professional decision. This study sheds light on the challenges in integrating CSMR into person-centered care frameworks.

The ethical void: a critical analysis of commissioned expert reports on Swedish healthcare governance.

PURPOSE: The purpose of this paper is to contribute knowledge on ethical issues and reasoning in expert reports concerning healthcare governance, commissioned by the Swedish healthcare system. DESIGN/METHODOLOGY/APPROACH: An in-depth analysis of ethical issues and reasoning in 36 commissioned expert reports was performed. Twenty-seven interviews with commissioners and producers of the reports were also carried out and analysed. FINDINGS: Some ethical issues were identified in the reports. But ethical reasoning was rarely evident. The meaning of ethical concepts could be devalued and changed over time and thereby deviate from statutory ethical goals and values. Several ethical issues of great concern for the Swedish public healthcare were also absent. PRACTICAL IMPLICATIONS: The commissioner of expert reports needs to ensure that comprehensive ethical considerations and ethical analysis are integrated in the expert reports. ORIGINALITY/VALUE: Based on an extensive data material this paper reveals an ethical void in expert reports on healthcare governance. By avoiding ethical issues there is a risk that the expert reports could bring about reforms and control models that have ethically undesirable consequences for people and society.

Guideline documents on caesarean section on maternal request in Sweden: varying usability with a restrictive approach.

BACKGROUND: Globally, studies illustrate different approaches among health care professionals to decision making about caesarean section (CS) and that attitudes regarding the extent to which a CS on maternal request (CSMR) can be granted vary significantly, both between professionals and countries. Absence of proper regulatory frameworks is one potential explanation for high CSMR rates in some countries, but overall, it is unclear how recommendations and guidelines on CSMR relate to CSMR rates. In Sweden, CSMR rates are low by international comparison, but statistics show that the extent to which maternity clinics perform CSMR vary among Sweden's 21 self-governing regions. These regions are responsible for funding and delivery of healthcare, while national guidelines provide guidance for the professions throughout the country; however, they are not mandatory. To further understand considerations for CSMR requests and existing practice variations, the aim was to analyse guideline documents on CSMR at all local maternity clinics in Sweden. METHODS: All 43 maternity clinics in Sweden were contacted and asked for any guideline documents regarding CSMR. All clinics replied, enabling a total investigation. We used a combined deductive and inductive design, using the framework method for the analysis of qualitative data in multi-disciplinary health research. RESULTS: Overall, 32 maternity clinics reported guideline documents and 11 denied having any. Among those reporting no guideline documents, one referred to using national guideline document. Based on the Framework method, four theme categories were identified: CSMR is treated as a matter of fear of birth (FOB); How important factors are weighted in the decision-making is unclear; Birth contracts are offered in some regions; and The post-partum care is related to FOB rather than CSMR. CONCLUSION: In order to offer women who request CS equal and just care, there is a pressing need to either implement current national guideline document at all maternity clinics or rewrite the guideline documents to enable clinics to adopt a structured approach. The emphasis must be placed on exploring the reasons behind the request and providing unbiased information and support. Our results contribute to the ongoing discussion about CSMR and lay a foundation for further research in which professionals, as well as stakeholders and both women planning pregnancy and pregnant women, can give their views on this issue.

The voice of the profession: how the ethical demand is professionally refracted in the work of general practitioners.

BACKGROUND: Among the myriad voices advocating diverging ideas of what general practice ought to be, none seem to adequately capture its ethical core. There is a paucity of attempts to integrate moral theory with empirical accounts of the embodied moral knowledge of GPs in order to inform a general normative theory of good general practice. In this article, we present an empirically grounded model of the professional morality of GPs, and discuss its implications in relation to ethical theories to see whether it might be sustainable as a general practice ethic. METHODS: We observed and interviewed sixteen GPs and GP residents working in health care centres in four Swedish regions between 2015-2017. In keeping with Straussian Grounded Theory, sampling was initially purposeful and later theoretically guided, and data generation, analysis and theoretical integration proceeded in parallel. The focal concept of this article was refined through multidimensional property supplementation. RESULTS: The voice of the profession is one of four concepts in our emerging theory that attempt to capture various motives that affect GPs' everyday moral decisionmaking. It reflects how GPs appreciate the situation by passing three professional-moral judgments: Shall I see what is before me, or take a bird's-eye view? Shall I intervene, or stay my hand? And do I need to speak up, or should I rather shut up? By thus framing the problem, the GP narrows down the range of considerations, allowing them to focus on its morally most pertinent aspects. This process is best understood as a way of heeding Løgstrup's ethical demand. Refracted through the lens of the GP's professional understanding of life, the ethical demand gives rise to specific moral imperatives that may stand in opposition to the express wishes of the other, social norms, or the GP's self-interest. CONCLUSIONS: The voice of the profession makes sense of how GPs frame problematic situations in moral terms. It is coherent enough to be sustainable as a general practice ethic, and might be helpful in explaining why ethical decisions that GPs intuitively understand as justified, but for which social support is lacking, can nevertheless be legitimate.

Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals' perceptions and experiences.

BACKGROUND: Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research. METHODS: An explorative qualitative study using semi-structured interviews with key informants. Seven physicians and ten nurses were interviewed. Interviews were analysed using inductive qualitative content analysis. RESULTS: The respondents' ethical challenges and values in recruitment mainly concerned establishing relationships and trust, meeting informational needs, acknowledging vulnerability, and balancing roles and interests. Ensuring ethical competence was raised as important, and interpersonal and communicative skills were highlighted. CONCLUSION: This study provides empirical insight into recruitment of children with cancer, from the perspectives of healthcare professionals. It also contributes to the understanding of recruitment as a relational process, where aspects of vulnerability, trust and relationship building are important, alongside meeting informational needs. The results provide knowledge on the complexities raised by paediatric research and underpin the importance of building research ethics competence to ensure that the rights and interests of children with cancer are protected in research.

Effects of a Pretend Play Intervention on Health-Related Quality of Life in Children With Cancer: A Swedish-German Study.

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.

Parent Perceptions of a Pretend Play Intervention for Their Children With Cancer.

BACKGROUND: 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. PURPOSE: 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. METHODS: A descriptive qualitative method was used, including individual interviews with 15 parents. RESULTS: 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. CONCLUSIONS/IMPLICATIONS FOR PRACTICE: 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.

Commissioned reports in Swedish healthcare governance - descriptive mapping and a content analysis.

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.

A survey of nursing teachers' awareness of discrimination and inequity in telephone nursing care.

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.

The ethics of DNR-decisions in oncology and hematology care: a qualitative study.

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.

Autonomous decisions by couples in reproductive care.

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.

Pretend Play as an Intervention for Children With Cancer: A Feasibility Study.

Children with cancer suffer from symptoms and burdensome treatments that often cause distress to children and their families. Mortality is one aspect of cancer diagnosis, while another is the quality of life and well-being during and after the treatment. By supporting children's communication, self-efficacy and coping ability in the care situation, children are given the possibilities for increased independence and participation and are allowed to develop an influence over their care. The aim of this study was to develop and evaluate the feasibility and acceptability of an adult-facilitated pretend play intervention for children with cancer. Five children with ongoing treatment for cancer were invited to a play intervention that consisted of six to eight sessions of structured pretend play aimed at increasing participation, independence, and well-being. A mixed method design was used to evaluate the feasibility and acceptability of the play intervention. Measures were collected before and after interventions, and in conjunction with every play session. Results suggest that the children enjoyed the play intervention. Findings indicate small improvements regarding self-efficacy in care situations and equal or increased quality of life for participants. A main finding was that no adverse events or increased worrying was reported in conjunction with play sessions. Therefore, the intervention is regarded as safe, feasible, and acceptable as reported by participants and their primary caregivers and a possible means of increasing participation and independence in children with a cancer diagnosis.

Swedish Healthcare Direct managers' views on gender (in)equity: applying a conceptual model.

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.

Values and value conflicts in implementation and use of preconception expanded carrier screening - an expert interview study.

BACKGROUND: Endeavors have been made to found and incorporate ethical values in most aspects of healthcare, including health technology assessment. Health technologies and their assessment are value-laden and could trigger problems with dissemination if they contradict societal norms. Per WHO definition, preconception expanded carrier screening is a new health technology that warrants assessment. It is a genetic test offered to couples who have no known risk of recessive genetic diseases and are interested pregnancy. A test may screen for carrier status of several autosomal recessive diseases and X-linked at one go. The technique has been piloted in the Netherlands and is discussed in other countries. The aim of the study was to examine values and value conflicts that healthcare experts recounted in relation to the discussion of implementation and use of preconception ECS in Sweden. METHODS: We interviewed ten experts, who were associated with influencing health policymaking in Sweden. We employed systematizing expert interviews, which endeavor to access experts' specialist knowledge. There were four female and six male informants, of which four were physicians, three bioethicists, one a legal expert, one a theologian and one a political party representative in the parliament. The participants functioned as members of two non-governmental bodies and three governmental organizations. We employed thematic analysis to identify themes, categories and subcategories. RESULTS: Two main themes surfaced: values and value conflicts. The main categories of Respect for persons, Solidarity, Human dignity, Do no harm, Health and Love formed the first theme, while values conflicting with autonomy and integrity respectively, constituted the second theme. Concepts relating to respect for persons were the most commonly mentioned among the participants, followed by notions alluding to solidarity. Furthermore, respondents discussed values conflicting with Swedish healthcare ones such as equality and solidarity. CONCLUSIONS: The experts highlighted values and concepts that are distinctive of welfare states such as Sweden and delineated how preconception ECS could challenge such values. Moreover, the analysis revealed that certain values were deemed more substantive than others, judging by the extent and detail of inference; for example, respect for persons and solidarity were on top of the list.

"There is total silence here" Ethical competence and inter-organizational learning in healthcare governance.

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.

"A perfect society"- Swedish policymakers' ethical and social views on preconception expanded carrier screening.

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.

Perspectives on the DNR decision process: A survey of nurses and physicians in hematology and oncology.

INTRODUCTION: In cancer care, do-not-resuscitate (DNR) decisions are made frequently; i.e., decisions not to start the heart in the event of a cardiac arrest. A DNR decision can be a complex process involving nurses and physicians with a wide variety of experiences and perspectives. Previous studies have shown different perceptions of the DNR decision process among nurses and physicians, e.g. concerning patient involvement and information. DNR decisions have also been reported to be unclear and documentation inconsistent. OBJECTIVE: The aim was to investigate how important and how likely to happen nurses and physicians considered various aspects of the DNR decision process, regarding participation, information and documentation, as well as which attributes they found most important in relation to DNR decisions. METHODS: A descriptive correlational study using a web survey was conducted, including 132 nurses and 84 physicians working in hematology and oncology. RESULTS: Almost half of the respondents reported it not likely that the patient would be involved in the decision on DNR, and 21% found it unimportant to inform patients of the DNR decision. Further, 57% reported that providing information to the patient was important, but only 21% stated that this was likely to happen. There were differences between nurses and physicians, especially regarding participation by and information to patients and relatives. The attributes deemed most important for both nurses and physicians pertained more to medical viewpoints than to ethical values, but a difference was found, as nurses chose patient autonomy as the most important value, while physicians rated non-maleficence as the most important value in relation to DNR decisions. CONCLUSION: Nurses and physicians need to be able to talk openly about their different perspectives on DNR decisions, so that they can develop a deeper understanding of the decisions, especially in cases where they disagree. They should also be aware that what they think is important is not always likely to happen. The organization needs to support such discussions through providing an environment that allows ethical discussions on regular basis. Patients and relatives will also benefit from receiving the same information from all caregivers.

The status of ethics in Swedish health care management: a qualitative study.

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.

Ethical competence in DNR decisions -a qualitative study of Swedish physicians and nurses working in hematology and oncology care.

BACKGROUND: DNR decisions are frequently made in oncology and hematology care and physicians and nurses may face related ethical dilemmas. Ethics is considered a basic competence in health care and can be understood as a capacity to handle a task that involves an ethical dilemma in an adequate, ethically responsible manner. One model of ethical competence for healthcare staff includes three main aspects: being, doing and knowing, suggesting that ethical competence requires abilities of character, action and knowledge. Ethical competence can be developed through experience, communication and education, and a supportive environment is necessary for maintaining a high ethical competence. The aim of the present study was to investigate how nurses and physicians in oncology and hematology care understand the concept of ethical competence in order to make, or be involved in, DNR decisions and how such skills can be learned and developed. A further aim was to investigate the role of guidelines in relation to the development of ethical competence in DNR decisions. METHODS: Individual interviews were conducted with fifteen nurses and sixteen physicians. The interviews were analyzed using thematic content analysis. RESULTS: Physicians and nurses in the study reflected on their ethical competence in relation to DNR decisions, on what it should comprise and how it could be developed. The ethical competence described by the respondents related to the concepts being, doing and knowing. CONCLUSIONS: In order to make ethically sound DNR decisions in oncology and hematology care, physicians and nurses need to develop appropriate virtues, improve their knowledge of ethical theories and relevant clinical guidelines. Ethical competence also includes the ability to act upon ethical judgements. Continued ethical education and discussions for further development of a common ethical language and a good ethical working climate can improve ethical competence and help nurses and physicians cooperate better with regard to patients in relation to DNR decisions, in their efforts to act in the best interest of the patient.

From denial to awareness: a conceptual model for obtaining equity in healthcare.

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.