In psychotherapy research, treatment efficacy is commonly studied by means of self-report questionnaires to gain quantitative data on symptom development. The data serve as input for statistical analyses up to the level of evidence-based treatment. We analyzed how a patient in a psychotherapy study experienced the translation of her story into quantitative data by combining a phenomenological qualitative analysis of her therapeutic narrative and a visual analysis of her extensively annotated paper-andpencil questionnaires. Our findings provide a practical empirical illustration (...) of the nature and impact of known validity issues. Beyond, we found the act of questionnaire administration affected the primary complaint such that it became performative toward the symptoms under study. We discuss the epistemic consequences for the validity of data, and we argue that valid data collection requires qualitative scrutiny of meaning within data and a concept of validity that allows for consideration of performativity of data collection. (shrink)

When experimental participants are given the chance to reflect and revise their initial judgments in a dynamic conversational context, do their responses to philosophical scenarios differ from responses to those same scenarios presented in a traditional static survey? In three experiments comparing responses given in conversational contexts with responses to traditional static surveys, we find no consistent evidence that responses differ in these different formats. This aligns with recent findings that various manipulations of reflectiveness have no effect on participants’ judgments (...) about philosophical scenarios. Although we did not find a consistent quantitative effect of format (conversation vs. static survey), conversational experiments still provide qualitative insights into debates about how participants are understanding (or misunderstanding) the scenarios they read in experimental studies, whether they are replacing difficult questions with questions that are more easily answered, and how participants are imagining the scenarios they read in ways that differ from what is explicitly stated by experimenters. We argue that conversational experiments—"Socratic questionnaires"—help show what is going on “under the hood” of traditional survey designs in the experimental investigation of philosophical questions. (shrink)

The arts provide openings for symbolic expression by engaging the sensory experience in the body they become a source of insight through embodied cognition and emotion, enabling meaning-making, and acting as a catalyst for change. This synthesis of sensation and enactive, embodied expression through movement and the arts is capitalized on in The BodyMind Approach®. It is integral to this biopsychosocial, innovative, unique intervention for people suffering medically unexplained symptoms applied in primary healthcare. The relevance of embodiment and arts practices (...) in TBMA are discussed in relation to the views of participants in the pursuit of self-management. If widely employed TBMA could have an enormous impact, reach, and significance for patients and global health services. This original pre-clinical trial of qualitative research reports on the perceptions of participant patients with generic MUS, a world-wide issue usually treated by either psychological therapy or physiotherapy. TBMA is not a therapy but a health education program founded upon the concept of an integration of psychological elements with physiological, bodily, and sensory experiences. Thematic analysis of qualitative data sets from open-ended questions in semi-structured interviews and a written questionnaire post intervention is presented. Five aspects which appear to be key to learning self-management were derived from analyzing the data: body with mind connections; importance of facilitation; potential benefits; preparedness for change; self-acceptance/compassion. This article advances the discourse on the nature of self-management for MUS through changing the mind-set and the relationship participants have with their bodily symptom/s through employing embodied methods and arts practices, challenging current, and solely verbal, psychological conceptual frameworks. Rigor lies in the method of data analysis using cross verification of credibility between reported findings and scrutiny by stakeholders. We conclude that facilitated TBMA groups employing embodied methods and arts practices can act as a method for developing the self-management of MUS and improving wellbeing. (shrink)

The use of student evaluations of teaching (SET) has become a widespread practice in higher education despite inconclusive evidence reported in the literature around its validity. Not surprisingly, the question of the validity of SET continues to be a current debate in higher education, pointing to the need for more research in this area. This paper is a part of a larger scale study, which aims to contribute to broadening the knowledge and understanding of SET validity by analysing the process (...) within the South East European University (SEEU) in North Macedonia in order to determine whether student evaluations are objective and critical. A likert scale questionnaire, containing 9 questions, was designed for the purpose of the analysis. The questionnaire was sent to all students from the five (5) Faculties: Business and Economics, Law, Contemporary Sciences and Technologies, Contemporary Social Sciences and Faculty of Languages, Cultures and Communications, in both campuses, Tetovo and Skopje. Three hundred and thirty three (333) students participated in the survey. Statistical Package for Social Science (SPSS) was used for analysing the results. Findings revealed that the information students received about the reputation, experience and qualifications of the professors had the highest influence on their perceptions, which in turn influenced the evaluations. As an addition, the present paper also compares two methods on a data set of actual SET. For illustrative purposes, only data from one faculty have been analysed. It is shown that the traditional method of considering the average values can misrepresent a teacher’s performance as it can be highly sensitive to any extreme grades, being either very positive or very negative. (shrink)

Although contemporary sociologists of science have sometimes claimed Max Weber as a methodological precursor, they have not examined Weber's own writings about science. Between 1908 and 1912 Weber published a series of critical studies of the extension of scientific authority into public life. The most notable of these concerned attempts to implement the experimental psychology or psycho-physics laboratory in factories and other real-world settings. Weber's critique centered on the problem of social measurement. He emphasized the discontinuities between the space of (...) the laboratory and that of the factory, showing how several qualitative and historically conditioned differences between the two settings rendered the transfer of instruments and methods between them highly problematic. Weber's critical arguments prepared the ground for his greatest foray into empirical sociology, a survey he directed for the Verein für Sozialpolitik investigating the conditions and attitudes affecting the lives and performance of industrial workers. Using a different measuring instrument — the questionnaire — Weber tried to implement a concept of social measurement which implied a different ontology, drawn not from natural sciences but from the historical sciences. (shrink)

Although self-love is an important topic, it has not been viewed as appropriate for psychological research, especially in China. We conducted two studies to understand how Chinese people view self-love. In the first study, we surveyed 109 Chinese people about the dimensions of self-love using an open-ended questionnaire. In the second study, 18 participants were selected by means of intensity sampling and interviewed about the connotations and structure of Chinese self-love. The two studies revealed three important aspects of the (...) Chinese understanding of self-love: self-love has four dimensions: self, family, others, and society; it comprises five components: self-cherishing, self-acceptance, self-restraint, self-responsibility, and self-persistence; and the five components of self-love are linked together to form a stable personality structure. The reliability and validity of the two studies were strong. Finally, the results showed that Chinese self-love is dominated by Confucian culture, which provides guiding principles for how to be human. At the same time, it shows that there are differences in the understanding of self-love between Chinese and Western cultures, which provides an empirical basis for further research based on cross-cultural psychology and self-love psychology. (shrink)

Although contemporary sociologists of science have sometimes claimed Max Weber as a methodological precursor, they have not examined Weber's own writings about science. Between 1908 and 1912 Weber published a series of critical studies of the extension of scientific authority into public life. The most notable of these concerned attempts to implement the experimental psychology or psycho-physics laboratory in factories and other real-world settings. Weber's critique centered on the problem of social measurement. He emphasized the discontinuities between the space of (...) the laboratory and that of the factory, showing how several qualitative and historically conditioned differences between the two settings rendered the transfer of instruments and methods between them highly problematic. Weber's critical arguments prepared the ground for his greatest foray into empirical sociology, a survey he directed for the Verein fur Sozialpolitik investigating the conditions and attitudes affecting the lives and performance of industrial workers. Using a different measuring instrument - the questionnaire - Weber tried to implement a concept of social measurement which implied a different ontology, drawn not from natural sciences but from the historical sciences. (shrink)

Recently, scholars have begun to shift their focus toward the idea of the marketization of startups and the relationship with entrepreneurial psychology or other factors; however, the establishment of a unified and clear standard of entrepreneurship educational methods remains unfulfilled. Our study investigates 46 representative startups in four industries, including financial technology, biotechnology, education, and cultural tourism areas in Guangdong-Hong Kong-Macao Greater Bay Area and Southeast Asia to observe factors from different backgrounds but matter in common for building entrepreneurship education (...) systems and methods in different countries. We used the fuzzy qualitative comparison method to survey startup entrepreneurs and executives through questionnaires, selecting startup key factors including entrepreneurial psychology, product advantage, market and cultural environment, entrepreneurial policy, and geographical advantage. The survey was conducted on six key variables, namely, geographical advantage, to observe the conditional grouping and paths of factors influencing the establishment of Startups from an overall perspective. This study explores the path combination that plays a key role in the establishment of new enterprises, and further uses specific industry cases to verify the rationality and credibility of the path combination. The main conclusions are as follows: There are five combination paths affecting the establishment of new enterprises, which are “psychology and market,” “psychology, product, and region,” “psychology, culture and policy,” “psychology, market, and culture,” and “market, policy, and region” combination paths; Entrepreneur psychology, market environment, and entrepreneurship policy are the core conditions to improve the effectiveness of the establishment of new enterprises, while the other three variables are non-core variables in different paths; There are different paths of entrepreneurial paths and factor combinations in different regions or industries. (shrink)

The article examines an experimental survey that was conducted by Wassily Kandinsky and his students of the wall painting workshop at the Bauhaus Weimar in 1923. In his theoretical writings on art, Kandinsky had assumed there to be direct correspondences between basic colors (yellow, red, blue) and forms (triangle, square, circle), and he operationalized this assumption in the survey. The recent discovery of twenty-six completed questionnaires offers new insights into the scope of Kandinsky’s doctrine of color-form correspondence, and forces us (...) to reevaluate his position regarding scientific research. Against the background of perceptual sensitization as a Bauhaus teaching method, and through a qualitative analysis of the answers that participants gave in the survey, we show that Kandinsky’s empirical investigation of color-form correspondences was an analytical tool in his attempt to foster an artistic sensibility as regards the aesthetic effects of basic artistic means. (shrink)

Background Several studies suggest that deviations from proper authorship practices are commonplace in medicine. The aim of this study was to explore experiences of and attitudes towards the handling of authorship in PhD theses at medical faculties in Denmark, Norway, and Sweden. Methods Those who defended their PhD thesis at a medical faculty in Scandinavia during the second half of 2020 were offered, by e-mail, to participate in an online survey. Survey questions dealt with experiences of violations of the first (...) three of the ICMJE authorship criteria and misuse of authorship order in the thesis articles, as well as respondents’ attitudes to these matters. Both questions with fixed response alternatives and questions with free-text responses were used. Quantitative data were analysed statistically using the Table functions in SPSS 25 and Chi-2 tests. Free-text responses were analysed qualitatively using manifest content analysis. Results 287 valid questionnaires were returned (response rate: 34.1%). Almost half (46.0%) of the respondents reported that the ICMJE authorship criteria were not fully respected in at least one of the papers in their thesis, while a vast majority (96.7%) found it important that authorship is handled according to the ICMJE authorship criteria. 24.4% reported inadequate handling of authorship order in at least one paper. The qualitative results provide a wide spectrum of examples of how the ICMJE authorship criteria are circumvented. Conclusion Despite increasing educational efforts to reduce deviations from good research practice at Scandinavian universities, the handling of authorship in medical papers remains problematic. (shrink)

The Multifactor Leadership Questionnaire is the most frequently used leadership measure in scholarship and organizational practice. However, so far it has not been validated in the Polish context. Therefore, the present study aimed to validate and shorten the MLQ in the Polish organizational setting. A total sample of 1,065 employees from different organizations took part in two sessions of an online study. Respondents were between 18 and 70 years old with an average job tenure of 17.00 years. In subsample (...) 1, using exploratory factor analysis, a three-factor structure of the MLQ full form was established, comprising transformational-supportive, inspirational goal-oriented, and passive-avoidant leadership. Based on qualitative and quantitative criteria, we constructed an 18-item MLQ short form. Both forms were supported by the confirmatory factor analysis in subsample 2. The MLQ-FF and MLQ-SF factors displayed acceptable to high levels of item-related parameters, as well as scale-related reliability. Both forms indicated high convergent and predictive validity examined by correlations with authentic leadership and employee's work outcomes. Our study provided the full and the short form of the MLQ as reliable and valid instruments, potentially suitable to measure leadership styles in academic research and organizational practice. (shrink)

The arrival of refugee pupils in UK schools has presented significant challenges to staff, pupils and families. The aim of this study was to record and analyse the views of teaching staff regarding their experiences of integrating these pupils into schools in Newcastle upon Tyne. A questionnaire was sent to 53 schools in the city known to have pupils who are refugees or asylum seekers. Questions focused on key issues identified by the Local Education Authority Working Group for Refugees (...) and Asylum Seekers, including the dissemination of information prior to the arrival of new pupils, staff training and the response of the school community as a whole. Twenty?four questionnaires were completed (response rate 45.3%), from two nurseries, 13 primary schools, seven secondary schools and one special school. The overwhelming need identified was for improved access to interpreting services, and more reliable information about pupils? backgrounds. It was evident that integration is approached differently by individual schools depending on their overall ethnic mix and the availability of resources and support networks. (shrink)

BackgroundIn childhood cancer care, healthcare professionals must deal with several difficult moral situations in clinical practice. Previous studies show that morally difficult challenges are related to decisions on treatment limitations, infringing on the child's integrity and growing autonomy, and interprofessional conflicts. Research also shows that healthcare professionals have expressed a need for clinical ethics support to help them deal with morally difficult situations. Moral case deliberations (MCDs) are one example of ethics support. The aim of this study was to describe (...) the MCD-related outcomes that healthcare professionals in childhood cancer care considered important, before MCDs were implemented, in order to facilitate the implementation of MCDs in childhood cancer care in Sweden.MethodsThis study is based on qualitative data. Healthcare professionals, mostly representing registered nurses, nursing assistants and physicians, working at childhood cancer care centres in Sweden, were invited to respond to the translated and content validated European MCD Outcomes Instrument, before participating in regular MCDs. Answers to the main open-ended question, included in the questionnaire, was analysed according to systematic text condensation.ResultsData was collected from 161 responses from the healthcare professionals. The responses included healthcare professionals’ perceptions of which MCD-related outcomes they found important for handling moral challenges. Three different themes of important outcomes from the analysis of the data are presented as follows:Interprofessional well-being in team interactionson a team level;Professional comfort when dealing with moral challengeson a personal level; andImproved quality of care for the child and the familyon a care level.ConclusionsHealthcare professionals in childhood cancer care considered it important that ethics support could enhance the well-being of interprofessional teams, support healthcare professionals on an individual level and improve quality of care. The results of this study can be used in current and future training for MCD-facilitators. When knowing the context specific important MCD-outcomes, the sessions could be adapted. Managers in childhood cancer care would benefit from knowing about the specific important outcomes for their target group because they could then create relevant working conditions for clinical ethics support. (shrink)

IntroductionBorderline personality disorder patients are often subjected to inpatient compulsory care due to suicidal behaviour. However, inpatient care is usually advised against as it can have detrimental effects, including increased suicidality.AimTo investigate what motives psychiatrists have for treating borderline personality disorder patients under compulsory care.Materials and MethodsA questionnaire survey was distributed to all psychiatrists and registrars in psychiatry working at mental health emergency units or inpatient wards in Sweden. The questionnaire contained questions with fixed response alternatives, with room (...) for comments, about the respondents’ motives for practising compulsory care of borderline personality disorder patients. The responses were analysed quantitatively with descriptive statistics, and comments were analysed with qualitative descriptive content analysis.ResultsThe psychiatrists’ views were divided on when it was justified to treat borderline personality disorder patients under compulsory care, as were their views on borderline personality disorder patients’ decision competence. When there was an assessed risk of harm, 53% were positive to compulsory care of decision-competent borderline personality disorder patients and another 31% because they considered the patients to be decision incompetent in such situations. Adding the risk of harm caused many respondents to alter their assessment of the patient from decision competent to decision incompetent.ConclusionThe large variations in doctors’ opinions indicate that the care of borderline personality disorder patients is arbitrary. Further, the assessed risk of harm increases the use of compulsory care, even though such care is advised against in clinical guidelines, has questionable legal support, and could lead to an increased suicide risk over time. (shrink)

With a view to consolidating the existing theory development and stimulating new conceptual thinking, this paper explores the implications of culture, religion, and the legal framework on women’s employment and their limited advancement in the hospitality industry, one of the important elements of the economy in Jordan. A related aim is to contrast the egalitarian Islamic approach to gender equality with gender discriminatory tribal traditions that restrict women’s employment and progression. Guided by religion, culture, and gender literature, this study uses (...) a qualitative, content-based analysis. Drawing on open-ended questionnaires distributed to a diverse workforce across four tourist locations in Jordan, the results portray how tribalism and Bedouin customs embedded in the participants’ interpretation and practices of their religion are maintaining gender gaps in employment and positions of power. The results also reveal that despite the Islamic guidelines towards fairness and justice in employment, the tribal and Bedouin traditions restrict women’s employment through patriarchal interpretations of Islam. Thus, the salient novelty and significance of this study were achieved through contributing to the theory development of the interrelations between religion, culture, and gender equality. (shrink)

BackgroundIn cancer care, do not resuscitate 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.MethodsA 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.ResultsThe 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.ConclusionThe 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. (shrink)

Green entrepreneurship has a huge role in solving environmental degradation and social problems. As today’s youth are tomorrow’s entrepreneurs, enhancing their green entrepreneurial intention will contribute to the sustainable development of economy in the future. The existing literature has examined the green entrepreneurial intention of college students based on self-efficacy, entrepreneurial creativity, entrepreneurship education, financial support, sustainable development values, and other influencing factors. However, these studies focus on net effect of factors on the results of college students’ green entrepreneurial intention, (...) ignoring the combination of multiple factors, and the relationship between different configurations of factors and the results of college students’ green entrepreneurial intention. Therefore, this study aimed to understand and analyze the influence of the complex relationship between multiple antecedents on college students’ green entrepreneurial intention from a comprehensive perspective. Based on 207 questionnaires collected from colleges in the coastal cities of China, this study used the fuzzy set qualitative comparative analysis method for data analysis. The results showed three dominant paths of great significance to college students’ high green entrepreneurial intention: entrepreneurial creativity—green cognition—dominant path; entrepreneurial creativity—financial support—dominant path; and the future self-continuity—entrepreneurship culture—entrepreneurship education—dominant path. The results of this study can help college educators to plan courses on innovative thinking and green entrepreneurship to improve college students’ entrepreneurial creativity and green cognitive ability. (shrink)

This study employs a qualitative approach to investigate the factors influencing engagement in Irish employee wellbeing programmes. Two stages of data collection were conducted, involving 52 employees completing open-ended questionnaires in Stage 1 and 23 participants interviewed in Stage 2. Three themes emerged from the thematic analysis of the data: (1) communicating wellbeing initiatives; (2) creating and maintaining interest in wellbeing; and (3) challenges to employee wellbeing. The three themes and their subthemes provide qualitative evidence from employees on (...) the barriers to and drivers of workplace wellbeing initiative utilisation through the lenses of Resource utilisation Theory and Culture of Health. The findings underscore the importance of supportive environments and effective design in enhancing programme utilisation, along with the need to offer targeted initiatives addressing secondary and tertiary wellbeing issues. By addressing shortcomings in Irish workplaces, this research contributes to advancing the effectiveness and impact of workplace wellbeing initiatives at multiple levels: organisational, individual, and governmental. (shrink)

Animal welfare in pig production is frequently a topic of debate and is sensitive in nature. This debate is partly due to differences in values, forms, convictions, interests and knowledge among the stakeholders that constitute differences among their frames of reference with respect to pigs and their welfare. Differences in frames of reference by stakeholder groups are studied widely, but not specifically with respect to animal behaviour or welfare. We explored this phenomenon using a qualitative behaviour assessment . Participating (...) stakeholders were classified into two expert groups consisting of pig farmers and animal scientists and a lay-group consisting of urban citizens . The stakeholders were asked to observe the behaviour of a specific pig in each of the nine videos and to assign a score for each video using 21 predefined terms describing the mood, such as ‘happy’ or ‘irritated’. They were asked to complete two additional questionnaires to obtain information on their frames of reference. Results from the QBA showed that the pig farmers observed the behaviour of pigs more positively than the urban citizens and the animal scientists. This was evident from the consistently higher scores on the positive terms to assess pig behaviour. The questionnaires revealed that the farmers had a different frames of reference regarding pigs and different understanding of welfare, which might explain the differences in assessment. In a follow-up stakeholder workshop, which focussed on differences in observation, QBA showed to be an effective tool to stimulate mutual learning among stakeholders, which is necessary to find shared solutions. (shrink)

Background Prison creates philosophical needs due to the exceptionality of the situation. This study explores how philosophy can meet these needs by focusing on three aspects: critical thinking, personal relationships and the government of passions. It builds on similar interventions in several countries and is proposed as a research that bypasses some limitations of previous projects in prisons.Method Following the participation of 81 inmates in 22 philosophical sessions over six months, the results of both interventions were analyzed using mixed methods, (...) as well as a pretest posttest design with a control group. Specifically, Webster’s Self Assessed Wisdom Scale, a questionnaire and an interview with four participants were used. These methods were triangulated in order to obtain data from the various methodologies and to improve the validity and reliability of the results.Results It was demonstrated that the experimental group showed significant progress in relation to the categories “openness”, “humor” and “emotion regulation”. Participants also showed a progression in categories related to the project’s goals. These results allow for a description of the categories that explain in what sense philosophy can act in the context of imprisonment.Conclusions This study demonstrates, on the one hand, how philosophy workshops involve outcomes linked to cognitive, affective and relational aspects. Furthermore, it provides evidence to confirm previous studies and interventions that are more modest in their results and use less rigorous scientific methodologies. (shrink)

Providing comprehensive sexuality education in schools is a work in progress in many countries throughout the world. In some countries, the journey is just beginning; in others, investments in this field have been made for many years. It is and has been difficult in Pakistan to implement and promote reproductive health, women’s empowerment, and CSE. In Pakistan, previous implementation efforts revealed the critical role of community influencers in propagating misleading information about the initiatives, inciting organized community resistance, and provoking backlash. (...) This paper looked at several aspects of community resistance, as well as approaches for overcoming the resistance for increasing community engagement in the implementation of CSE in Islamabad, Pakistan. To analyze community perceptions of CSE implementation in Islamabad, the community readiness assessment questionnaire was adapted. Questions and prompts for discussion included leadership, current initiatives, community knowledge, resource availability, community support, and implementation strategies. A total of 35 in-depth interviews were conducted. Data was analyzed and interpreted using qualitative content analysis to explore community perspectives that contribute to resistance around CSE, as well as implementation options. Using inter-code relationship data, network analysis was conducted to provide a graphical representation of the analyzed qualitative data. The study reveals community resistance to CSE being implemented in schools. Misconceptions, a lack of awareness, a lack of priority, and the lack of dedicated resources are just a few of the primary implementation challenges to consider when implementing CSE in practice. Network analysis identified, based on modularity class, five distinct clusters of highly connected nodes/codes: non-governmental organizations, misconceptions, resources and policy, strategies and community support, and personal social and health education and current efforts. In conservative environments and when confronted with resistance, innovative marketing and rebranding are critical for priority setting and community engagement, especially when developing curriculum and implementing CSE. Some of the suggested strategies for implementation include community sensitization through strategic awareness campaigns, involving already established infrastructure and NGOs, endorsement by all major stakeholders, particularly decision-makers, and the use of creative digital platforms for better dissemination. (shrink)

The present paper focuses on the phenomenon of normativity and genericity in language and cognition. More specifically, it investigates the use of normative generics, which are generalizations that state an ideal norm for a given category, in the context of norm breaching in parent-child interactions in English. This issue is researched by means of a specially designed questionnaire including 8 norm breaching parent-child interactions, which has been completed online by ca. 70 English-speaking female respondents. The paper uses qualitative (...) and quantitative methods to address two specific research issues. First, it compares the frequency of use of normative generics in norm breaching situations vis-à-vis the use of other types of normative linguistic expressions. Second, it analyses selected factors that are believed to favour the use of normative generics, including interactive openness of a given situation, norm salience, and perceived norm importance. Moreover, the paper sketches an explanatory model of normative generics that draws upon insights from the Conceptual Metonymy Theory, Construction Grammar, and Dual System Theory. (shrink)

BackgroundThe concept of benefit sharing to enhance the social value of global health research in resource poor settings is now a key strategy for addressing moral issues of relevance to individuals, communities and host countries in resource poor settings when they participate in international collaborative health research.The influence of benefit sharing framework on the conduct of collaborative health research is for instance evidenced by the number of publications and research ethics guidelines that require prior engagement between stakeholders to determine the (...) social value of research to the host communities. While such efforts as the production of international guidance on how to promote the social value of research through such strategies as benefit sharing have been made, the extent to which these ideas and guidelines have been absorbed by those engaged in global health research especially in resource poor settings remains unclear. We examine this awareness among stakeholders involved in health related research in Kenya.MethodsWe conducted in-depth interviews with key informants drawn from within the broader health research system in Kenya including researchers from the mainstream health research institutions, networks and universities, teaching hospitals, policy makers, institutional review boards, civil society organisations and community representative groups.ResultsOur study suggests that although people have a sense of justice and the moral aspects of research, this was not articulated in terms used in the literature and the guidelines on the ethics of global health research.ConclusionThis study demonstrates that while in theory several efforts can be made to address the moral issues of concern to research participants and their communities in resource poor settings, quick fixes such as benefit sharing are not going to be straightforward. We suggest a need to pay closer attention to the processes through which ethical principles are enacted in practice and distil lessons on how best to involve individuals and communities in promoting ethical conduct of global health research in resource poor settings. (shrink)

When accessing healthcare services, LGBT+ individuals are often exposed to segregating and marginalizing discourses. Knowledge about how such experiences are reflected in the moral world of LGBT+ individuals living in Turkey is limited. This study examined LGBT+ individuals’ lived experiences when utilizing healthcare services. The findings are discussed in terms of moral discourses related to LGBT+ individuals’ gender identity and sexual orientation. A qualitative field study was conducted using semi-structured interviews with fifty-five LGBT+ individuals from Turkish cities who were (...) in contact with various non-governmental organizations that conduct studies on gender identity and sexual orientation. A questionnaire was administered with items on participants’ demographic information, experiences, behavioural patterns, and knowledge regarding healthcare services. The data were analysed thematically. The findings were evaluated within the framework of “access to healthcare service” theme related to “healthcare service demand” context. Additionally, the “interaction with physicians” theme was addressed in the context of “physician–patient/counselee relationship.” LGBT+ individuals state that they are exposed to stigmatizing and segregating discourses by healthcare professionals, which might pose an obstacle for adaptive health-seeking behaviours. These results suggest that physicians’ professional approach has a considerable influence on LGBT+ individuals’ capacity for utilizing healthcare services. (shrink)

Gender microaggressions, especially its subtler forms microinsults and microinvalidations are by definition hard to discern. We aim to construct and validate a scale reflecting two facets of the microaggression taxonomy: microinsults and microinvalidations toward women in the workplace, the MIMI-16. Two studies were conducted. Using a genetic algorithm, a 16-item scale was developed and consequently validated via confirmatory factor analyses in three separate validation samples. Correlational analyses with organizational outcome measures were performed. The MIMI-16 exhibits good model fit in all (...) validation samples. Multigroup-CFA suggested strict measurement invariance between all validation samples. Correlations were as expected and indicate internal and external validity. Scholars on gender microaggressions have mostly used qualitative research. With the newly developed MIMI-16 we provide a reliable and valid quantitative instrument to measure gender microaggressions in the workplace. (shrink)

This article reports on research that examines newly qualified UK nurses’ experiences of implementing their ideals and values in contemporary nursing practice. Findings are presented from questionnaire and interview data from a longitudinal interpretive study of nurses’ trajectories over time. On qualification nurses emerged with a coherent and strong set of espoused ideals around delivering high quality, patient‐centred, holistic and evidence‐based care. These were consistent with the current UK nursing mandate and had been transmitted and reinforced throughout their ‘prequalification’ (...) programmes. The existence of professional and organisational constraints influenced their ability to implement these ideals and values once in practice. Data analysis revealed that within 2 years in practice the newly qualified nurses could be categorised as sustained idealists, compromised idealists, or crushed idealists. The majority experienced frustration and some level of ‘burnout’ as a consequence of their ideals and values being thwarted. This led to disillusionment, ‘job‐hopping’ and, in some cases, a decision to leave the profession. These data are explored and discussed to inform the question of whether the current nursing mandate is sustainable. (shrink)

Objectives: To report the attitudes and opinions of subjects in US clinical trials about whether or not, and why, they should receive post-trial access (PTA) to the trial drug, care and information. Design: Focus groups, short self-administered questionnaires. Setting: Boston, Dallas, Detroit, Oklahoma City. Participants: Current and recent subjects in clinical trials, primarily for chronic diseases. Results: 93 individuals participated in 10 focus groups. Many thought researchers, sponsors, health insurers and others share obligations to facilitate PTA to the trial drug, (...) if it benefited the subject, or to a therapeutic equivalent. Some thought PTA obligations include providing transition care (referrals to non-trial physicians or other trials, limited follow-up, short-term drug supply) or care for long-term adverse events. Others held, in contrast, that there are no PTA obligations regarding drugs or care. However, there was agreement that former subjects should receive information (drug name, dosage received, market approval date, long-term adverse effects, trial results). Participants frequently appealed to health need, cost, relationships, reciprocity, free choice and sponsor self-interest to support their views. Many of their reasons overlapped with those commonly discussed by bioethicists. Conclusion: Many participants in US trials for chronic conditions thought there are obligations to facilitate PTA to the trial drug at a “fair” price; these views were less demanding than those of non-US subjects in other studies. However, our participants’ views about informational obligations were broader than those of other subjects and many bioethicists. Our results suggest that the PTA debate should expand beyond the trial drug and aggregate results. (shrink)

BackgroundInstitutional Review Boards (IRBs) play a vital role in safeguarding the rights and interests of both research participants and researchers. However, China initiated the establishment of its own IRB system relatively late in comparison to international standards. Despite commendable progress, there is a pressing need to strengthen the organizational capacity building of Chinese IRBs. Hence, this study aims to analyze the key factors driving the enhancement of organizational capacity within these committees.MethodThe cross-sectional survey for this research was conducted from July (...) 2020 to January 2022. Following the statistical grouping based on the "2020 China Health Statistical Yearbook", a systematic investigation of IRBs in various provinces of China was carried out. In-depth interviews and questionnaire surveys were conducted with the chairpersons and administrative executives (or secretaries) of highly cooperative IRBs. Subsequently, data were collected from 107 IRBs. Qualitative Comparative Analysis (QCA) was employed as the method to analyze the factors influencing the organizational capacity of medical ethics committees and explore the diverse combinations of these factors.ResultsThrough a singular necessary condition analysis, the variable "protection of rights and interests" emerges as a critical factor contributing to the robust construction of Institutional Review Boards Institutional Review Boards (IRBs). Conversely, the variables of "lack of member ability, absence of review process, and deficiency in the supervision mechanism" collectively constitute a sufficient condition leading to weaker IRB construction. The state analysis uncovers three interpretation modes: member ability-oriented (M1), system process-oriented mode (M2), and resource system-oriented mode (M3).ConclusionsThe results of this study are effectively explicable using the "Triangular Force" model proposed for the hypothesis of IRBs' organizational capacity, which provides a solid foundation for the development of organizational capabilities in IRBs. To enhance the organizational capacity of IRBs in China, it is imperative to elevate the competence of committee members and strengthen team development. This can be achieved by establishing a comprehensive regulatory framework and refining procedural protocols. Moreover, clarifying the organizational structure and optimizing resource allocation are essential steps in bolstering the overall organizational capabilities of these committees. (shrink)

Despite the continuous efforts to understand coping processes, very little is known about the utilization of best coping strategies during the COVID-19 pandemic. In this study, we aimed to analyze the coping strategies of individuals who scored high on an adaptive coping questionnaire in order to understand the most adaptive coping strategies during the COVID-19 pandemic. We used consensual qualitative analysis in a team of four researchers and one auditor. The convenience sample from which we identified the high (...) scorers comprised 1,683 participants with a mean age of 31.02 years ranging between 18 and 77 years old. Based on their scoring in the COPE Inventory, nine participants were selected from the sample with the highest scores in coping skills in at least two out of its 15 subscales. In-depth repeated interviews with six participants for the main analysis were conducted, and three were added to check the data saturation. The results showed that the most adaptive coping strategies used during the COVID-19 pandemic could be categorized into four main domains: self-compassion, compassion to others, compassion from others, and mutual compassion. The most frequently mentioned and the most elaborated upon by our respondents was the domain of self-compassion. The most interesting finding was the emergence of the fourth type of compassion, labeled mutual compassion, which referred to deliberate attempts to take care of oneself and others while suffering together in order to elevate the suffering for both. This kind of compassion might arise in the situations of collective suffering, such as a catastrophe or a pandemic and might have the additional benefit of bringing people closer to each other in difficult times. (shrink)

BackgroundThe current paper follows up on the results of an exploratory quantitative analysis that compared the publication and citation records of men and women researchers affiliated with the Faculty of Computing and Engineering at Dublin City University in Ireland. Quantitative analysis of publications between 2013 and 2018 showed that women researchers had fewer publications, received fewer citations per person, and participated less often in international collaborations. Given the significance of publications for pursuing an academic career, we used qualitative methods (...) to understand these differences and explore factors that, according to women researchers, have contributed to this disparity.MethodsSixteen women researchers from DCU’s Faculty of Computing and Engineering were interviewed using a semi-structured questionnaire. Once interviews were transcribed and anonymised, they were coded by both authors in two rounds using an inductive approach.ResultsInterviewed women believed that their opportunities for research engagement and research funding, collaborations, publications and promotions are negatively impacted by gender roles, implicit gender biases, their own high professional standards, family responsibilities, nationality and negative perceptions of their expertise and accomplishments.ConclusionsOur study has found that women in DCU’s Faculty of Computing and Engineering face challenges that, according to those interviewed, negatively affect their engagement in various research activities, and, therefore, have contributed to their lower publication record. We suggest that while affirmative programmes aiming to correct disparities are necessary, they are more likely to improve organisational culture if they are implemented in parallel with bottom-up initiatives that engage all parties, including men researchers and non-academic partners, to inform and sensitise them about the significance of gender equity. (shrink)

Assessments of quality in healthcare often focus on treatment outcome or patient safety, but rarely acknowledge the importance of patients’ encounters with healthcare personnel. The aim of this study was to gain an improved understanding of negative experiences of healthcare encounters by investigating experiences of the general population. A questionnaire was distributed to a randomly selected sample population of 1484 inhabitants in Stockholm County, Sweden. The material was subjected to conventional content analysis. Seventeen different types of complaint about negative (...) encounters were identified, including unpleasant behavior, not being listened to, inadequate information, and discrimination. Two possible underlying explanations are discussed; structural factors relating to the organization and allocation of healthcare, and individual factors relating to the staff’s attitudes and professional practice. The results indicate that different strands of actions are needed to reduce patients’ negative experiences of encounters in healthcare, depending on the setting as well as on which of the two factors predominates. (shrink)

In “Potential Subjects’ Responses to an Ethics Questionnaire in a Phase I Study of Deep-Brain Stimulation in Early Parkinson’s Disease,” Finder, Bliton, Gill, Davis, Konrad, and Charles undertake informed consent research on what they describe as a Phase I trial of deep brain stimulation (DBS) for Parkinson’s disease. We argue that the authors should have more carefully characterized the nature of the DBS study at the start of their clinical study.

The present study investigated the configuration effect of human capital, social capital, and psychological capital on job performance. The human capital questionnaire, social capital scale, psychological capital scale, and job performance scale were used to survey 458 employees. Results revealed that four antecedent configurations could achieve high task performance, and three antecedent configurations can achieve high contextual performance. The high job performance driving path was characterized by “all roads lead to Rome.” Human capital, social capital, and psychological capital affected (...) job performance in the form of configuration, which reflected the asymmetric causal relationship. (shrink)

As world leaders strengthen their nuclear arsenals, and fears of global nuclear proliferation increase, social studies teachers must be prepared to help learners investigate the devastating consequences on human life and property associated with their use. This manuscript presents an ethnological study of six atomic bomb survivors from Hiroshima and Nagasaki during World War II. Participants completed a qualitative questionnaire describing their experiences during World War II, and making recommendations to U.S. social studies teachers when teaching about the (...) dropping of the atomic bombs in Hiroshima and Nagasaki in Japan. Data was analyzed to identify patterns and themes, and two categories emerged related to our research question. Findings suggest participants support U.S. teachers imparting global perspectives that speak directly to the destructive power of the atomic bomb and its impact on humans and the environment for years to come. This includes a movement away from using the social studies curriculum to point fingers of historic blame in the use of atomic weapons, and towards empowering learners to become agents of change in actualizing a nuclear free and peaceful world. We discuss the implications of this study's findings in social studies and global education. (shrink)

The Philosophy for Children in Schools Project is an ongoing research project to explore the impact of philosophy for children on classroom practice. This paper reports on the responses of head teachers, teachers and local educational authority officers in South Wales, UK, to the initial training programme in Philosophy for Children carried out by the University School of Education. Achieving change in schools through the embedding of new practices is an important challenge for head teachers. Interviews and qualitative questionnaires (...) were used to explore perceptions of and attitudes towards the dialogic practice of P4C and the related challenges for school leaders. The results provide an insight into how head teachers planned to embed the new practice of P4C in their schools. Results from the interviews and questionnaires have been subject to iterative analysis and categories derived under which to discuss the findings. There are many similarities in the ways in which different head teachers go about planning change n their schools as well as differences. The results provide insight into the role of initial continuing professional development in school development and the processes by which individual heads plan to embed change in practice across the whole school. (shrink)

This study examines how meritocracy as a collective social imaginary promoting social justice and fairness reproduces class and caste inequalities and fosters ethical violence. We interrogate discourse of merit in the narratives of the professional–managerial class-in-making at an Indian business school. Empirically, we draw on interviews, full-text responses to a qualitative questionnaire, and a student’s poem. We describe how business school students articulate merit as a neoliberal ethic, emphasizing prudential, enterprising attitudes, and responsibility. However, this positive, aspirational façade (...) of merit masks practices of ethical violence, wherein individuals invoke an ethical principle as grounds for moral condemnation and linguistic injuries. These practices of ethical violence desubjectify disadvantaged students and result in silence as a form of inequality. We contribute to organizational research on inequalities by foregrounding ethical violence and desubjectification. We detail the possibilities of discursive agency in contesting and interrupting ethical violence. (shrink)

This research project analyzes a strategy for teaching philosophy in secondary school inspired by Socratic dialogue, which aims at the creation and effective management of cognitive dissonance as a tool for promoting critical thinking, called Socratic Challenge (SC). The research originates from workshops held in the years 2016/2019 in a technical and vocational institute in the province of Varese, in which I participated as the creator and conductor, involving the voluntary participation of about 150 students. The research questions are: What (...) are the characteristics of the Socratic Challenge? Can it constitute a teaching methodology to be proposed? Under what conditions? Within what project framework? The empirical research is qualitative, naturalistic, and exploratory (Lumbelli, 1984), specifically a self-study (Hamilton & Pinnegar 2009), divided into two phases. In the first phase, data regarding motivation and perceptions of training impact were collected through in-depth interviews of students (16) and analyzed using the criteria of reflective thematic analysis (Braun & Clarke 2019). In the second phase, the workshops were repeated remotely in technical and vocational institutes in Milan and the province, involving 113 students who were surveyed with a qualitative questionnaire. The workshops were recorded and the discussion interactions were analyzed according to a qualitative inductive approach that refers to Constructivist Grounded Theory (Charmaz, 2006). Results show how this dialogical instructional strategy in philosophy teaching can be considered an effective alternative to the historical-philosophical approach predominant in the Italian tradition (Illetterati 2007). (shrink)

BackgroundThe Catalan Institute of Health is the largest health services public provider in Catalonia. “CIH Code of Ethics Virtual Forum”, was created within the Intranet of the CIH to facilitate participation among their employees. The current study aims to: a) Analyse the CIH workers’ assessment of their own, their colleagues’ and the organization’s observance of ethical values; b) Identify the opinions, attitudes, experiences and practices related to the ethical values from the discourse of the workers that contributed voluntarily to the (...) CEVF.MethodsMixed methods study with convergent parallel design:1.Cross sectional study by means of a self-administered, ad hoc, anonymous questionnaire to assess the observance of the ethical values of the CIH according to the participants. A total of 712 workers responded to the questionnaire. A descriptive, bivariate analysis of the results was carried out. 2.Qualitative study to determine the meaning for the workers of the ethical values put forward by the organization. Their individual opinions and experiences were explored by means of a thematic contents analysis of 225 comments posted in the CEVF. The study was conducted between May and December 2008.ResultsThe average score for observance of the CE by the respondents themselves was high, between 3.5-4/5 for the observance by their colleagues and close to 3/5 for the CIH management. These results do not change when we compare by gender, age group and professional discipline. The comments on the values are information-rich, they mirror the ethical environment of the institution and show various ethical dilemmas and suggestions.ConclusionsResults show that it is feasible for a publicly funded health care organization to develop a CE with the participation of employees and the support of the management. Results underscore the relevance of this strategy for the implementation, improvement and update of the CE as a responsibility shared by all workers. Practices consistent with ethical values are rewarded by social approval, enhance employee’s confidence and coherence in decision-making and improve public engagement and institutional policies. (shrink)

In this article we present a qualitative analysis of empirical findings from an international project on intergroup attitudes and contact in five Central European countries specifically concerning language use. The project concentrated on the interplay of intergroup contact and perception between the members of national groups in the borderlands between the Czech Republic and Austria, Germany, Poland and Slovakia. The open statements analysed here about the contact situations and the ensuing evaluation of the Others were collected as part of (...) an online questionnaire (N=1959). After a short theoretical introduction we reveal the intertwined nature of construing language use: first in each specific borderland, then in the triads speaking together either in the native language of one of the groups (Czechs with Austrians and Germans) or with each speaking their own native languages (Czechs with Poles and Slovaks). Finally we highlight several effects we have observed as a result of being able to compare the situation in more than one neighbourhood, for instance, the effect of the different statuses of the languages involved, or the connection between the language used in contact and a feeling of proximity. (shrink)

The aim of this paper is to explore how children learn to form new relationships with nature. It draws on a longitudinal case study of children participating in a stewardship project involving the conservation of salamanders during the school day in Stockholm, Sweden. The qualitative method includes two waves of data collection: when a group of 10-year-old children participated in the project (2015) and two years after they participated (2017). We conducted 49 interviews with children as well as using (...) participant observations and questionnaires. We found indications that children developed sympathy for salamanders and increased concern and care for nature, and that such relationships persisted two years after participation. Our rich qualitative data suggest that whole situations of sufficient unpredictability triggering free exploration of the area, direct sensory contact and significant experiences of interacting with a species were important for children’s development of affective relationships with the salamander species and with nature in an open-ended sense. Saving the lives of trapped animals enabled direct sensory interaction, feedback, increased understanding, and development of new skills for dynamically exploring further ways of saving species in an interactive process experienced as deeply meaningful, enjoyable and connecting. The behavioural setting instilled a sense of pride and commitment, and the high degree of responsibility given to the children while exploring the habitat during authentic situations enriched children’s enjoyment. The study has implications for the design of education programmes that aim to connect children with nature and for a child-sensitive urban policy that supports authentic nature situations in close spatial proximity to preschools and schools. (shrink)

A qualitative study using grounded theory methods was conducted to (a) examine what philosophy of technology assumptions are present in the thinking of K-12 technology leaders, (b) investigate how the assumptions may influence technology decision making, and (c) explore whether technological determinist assumptions are present. Subjects involved technology directors and instructional technology specialists from school districts, and data collection involved interviews and a written questionnaire. Three broad philosophy of technology views were widely held by participants, including an instrumental (...) view of technology, technological optimism, and a technological determinist perspective that sees technological change as inevitable. Technology leaders were guided by two main approaches to technology decision making in cognitive dissonance with each other, represented by the categories Educational goals and curriculum should drive technology, and Keep up with Technology (or be left behind). The researcher concluded that as leaders deal with their perceived experience of the inevitability of technological change, and their concern for preparing students for a technological future, the core category Keep up with technology (or be left behind) is given the greater weight in technology decision making. A risk is that this can on occasion mean a quickness to adopt technology for the sake of technology, without aligning the technology implementation with educational goals. (shrink)

A qualitative study was conducted to examine the philosophy of technology of K-12 technology leaders, and explore the influence of their thinking on technology decision making. The research design aligned with CORBIN and STRAUSS grounded theory methods, and I proceeded from a research paradigm of critical realism. The subjects were school technology directors and instructional technology specialists, and data collection consisted of interviews and a written questionnaire. Data analysis involved the use of grounded theory methods including memo writing, (...) open and axial coding, constant comparison, the use of purposive and theoretical sampling, and theoretical saturation of categories. Three broad philosophy of technology views were widely held by participants: an instrumental view of technology, technological optimism, and a technological determinist perspective that saw technological change as inevitable. Technology leaders were guided by two main approaches to technology decision making, represented by the categories Educational goals and curriculum should drive technology, and Keep up with Technology (or be left behind). The core category and central phenomenon that emerged was that technology leaders approached technology leadership by placing greater emphasis on keeping up with technology, being influenced by an ideological orientation to technological change, and being concerned about preparing students for a technological future. (shrink)

Background In 2001 a report on the provision of clinical ethics support in UK healthcare institutions identified 20 clinical ethics committees. Since then there has been no systematic evaluation or documentation of their work at a national level. Recent national surveys of clinical ethics services in other countries have identified wide variation in practice and scope of activities. Objective To describe the current provision of ethics support in the UK and its development since 2001. Method A postal/electronic questionnaire survey (...) administered to the chairs of all 82 clinical ethics services registered with the UK Clinical Ethics Network in July 2010. Results Response rate was 62% with the majority of responding services situated in acute trusts. All services included a clinical ethics committee with one service also having a clinical ethicist. Lay members were present in 72% of responding committees. Individual case consultation has increased since 2001 with 29% of chairs spending more than 50% of their time on this. Access to and involvement in the process of case consultation is less for patients and families than for clinical staff. There is wide variation in committee processes and levels of institutional support. Over half of the responding committees undertook some form of evaluation. Conclusion Clinical ethics services in the UK are increasing as is their involvement in case consultation. However, the significant variation in committee processes suggests that further qualitative research is needed to understand how these committees function and the role they play in their institution. (shrink)

Two questionnaires directed to Swedish physicians and a sample of the Swedish population investigated attitudes towards physician-assisted suicide (PAS). The aim of the present work was to analyse qualitative data from these questionnaires in order to explore how respondents reason about PAS. Data were analysed in two steps. First, we categorized different kinds of responses and identified pro and con arguments. Second, we identified general conclusions from the responses. The data reflect the differences in attitudes towards PAS among the (...) public and physicians, with the former mainly in favour of PAS and the latter mainly against. There was, however, considerable agreement about what requirements must be met before PAS could be considered ethical. Many arguments against PAS concerned the professional role of physicians, which indicates that it may not be assisted suicide as such that many PAS opponents disagree with, but rather that it is handled by physicians in the regular health-care system. (shrink)

In the care of patients with disorders of consciousness (DOC), some ethical difficulties stem from the challenges of accurate diagnosis and the uncertainty of prognosis. Current neuroimaging research on these disorders could eventually improve the accuracy of diagnoses and prognoses and therefore change the context of end-of-life decision making. However, the perspective of healthcare professionals on these disorders remains poorly understood and may constitute an obstacle to the integration of research. We conducted a qualitative study involving healthcare professionals from (...) an acute care university medical center. A short questionnaire captured demographic data as well as the experience of participants with DOC patients. A semi-structured interview was used to explore attitudes toward ethical issues identified in a previous literature review. Qualitative content analysis of interviews was conducted with the NVivo software. Accurate diagnosis among DOC is often regarded as a challenge, but this was generally not the case for our participants because most reported high confidence in DOC diagnoses. However, participants reported struggling with prognosis, especially because of its essential role for end-of-life decision making and communication with families. Variability of opinion between healthcare professionals was reported and identified by some as a minor issue while others stressed how families struggle with different medical opinions. End-of-life decision making encompassed a large proportion of ethical challenges in these patients, and the removal of artificial nutrition and hydration created significant discomfort in a minority of participants. The concept of futility was subject to wide-ranging understandings with both favorable and unfavorable opinions. Our data suggest that to ensure the incorporation of new evidence-based advances, attention should be directed to the real-world practices and challenges of accurate diagnosis and prognosis. Given pervasive challenges in end-of-life care, we recommend improved training of healthcare professionals in the care of patients with DOC, particularly in end-of life care, understanding the context of decision making, and determining how to optimally integrate new neuroscience research on the care of patients with DOC. (shrink)

Background:The ability to save the life of an extremely premature baby has increased substantially over the last decade. This survival, however, can be associated with unfavourable outcomes for both baby and family. Questions are now being asked about quality of life for survivors of extreme prematurity. Quality of life is rightly deemed to be an important consideration in high technology neonatal care; yet, it is notoriously difficult to determine or predict. How does one define and operationalise what is considered to (...) be in the best interest of a surviving extremely premature baby, especially when the full extent of the outcomes might not be known for several years?Research question:The research investigates the caregiving dilemmas often faced by neonatal nurses when caring for extremely premature babies. This article explores the issues arising for neonatal nurses when they considered the philosophical and ethical questions about quality of life in babies ≤24 weeks gestation.Participants:Data were collected via a questionnaire to Australian neonatal nurses and semi-structured interviews with 24 neonatal nurses in New South Wales, Australia.Ethical considerations:Ethical processes and procedures have been adhered to by the researchers.Findings:A qualitative approach was used to analyse the data. The theme ‘difficult choices’ was generated which comprised three sub-themes: ‘damaged through survival’, ‘the importance of the brain’ and ‘families are important’. The results show that neonatal nurses believed that quality of life was an important consideration; yet they experienced significant inner conflict and uncertainty when asked to define or suggest specific elements of quality of life, or to suggest how it might be determined. It was even more difficult for the nurses to say when an extremely premature baby’s life possessed quality. Their previous clinical and personal experiences led the nurses to believe that the quality of the family’s life was important, and possibly more so than the quality of life of the surviving baby. This finding contrasts markedly with much of the existing literature in this field.Conclusion:Quality of life for extremely premature babies was an important consideration for neonatal nurses; however, they experienced difficulty deciding how to operationalise such considerations in their everyday clinical practice. (shrink)